regarding vascular parkinsonism, this topic really caught my eye when i
started reading everyone's responses. my general practitioner notice
irregular heartbeat in me about the time i started having early signs of
PD, even though it had not been diagnosed yet; my heart skipped a beat about
every 8th or 10th beat. about 2 years later the PD symptoms were bad enough
that i was referred to a neurologist and diagnosed--strange thing is, the
irregular heartbeat had then ceased..........i've always wondered, though,
if there was a connection.
Randall
-----Original Message-----
From: Automatic digest processor <[log in to unmask]>
To: Recipients of PARKINSN digests <[log in to unmask]>
Date: Tuesday, June 08, 1999 5:29 PM
Subject: PARKINSN Digest - 8 Jun 1999 - Special issue (#1999-356)
=========================================================================
Date: Wed, 9 Jun 1999 06:33:54 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Bob Anibal <[log in to unmask]>
Subject: Re: vascular parkinsonism
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit
Sure the PD is going to affect the heart - the heart function is controlled
by the nervous system and sure as all H--- the nervous system is affected by
PD so ERGO the PD will afffect the heart. When Cecily had her pacemaker
installed I asked the MD if PD could have brought about the condition
requiriing the PM. ( intermittent slow pulse and skipped beats). His reply
was a bit on the vague side but he admitted that it was a strong possibility
that my reasoning was right on.
Bob Anibal CG for my Princess Cecily 79/~20
=========================================================================
Date: Wed, 9 Jun 1999 06:56:21 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Bob Anibal <[log in to unmask]>
Subject: Non pd
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit
I'm not sure it was on this forum where someone was bemoaning the high price
of ink cartridges for printers - anyway here is an address that advertises
cartridges at way below store prices some are rebuilt - some are buiy one
and get one free I am going to try them
www.acsmsupplies.com/chef.html
Bob Anibal
=========================================================================
Date: Wed, 9 Jun 1999 07:02:19 EDT
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Bonnie Rowley <[log in to unmask]>
Subject: Re: I got it !!
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
I didn't understand janet's "I don't get it" post but I do understand this 1
from Hans.
What I don't get is why does "something" have to be settled.
IF 2 of our top "reporters" have a difference about a particular site, then
so be it.
That doesn't change the fact that I appreciate all the posts of both these
dedicated & caring members.
janet, this may be easier said than done, but don't be upset that another has
a difference of opinion - your news posts are valued.
Gosh, think how boring this world (& list) would be if we all had the same
opinion.
Hans, thanks for solving janet's riddle
janet's, thanks for posting your opinion
& thanks to all the others who post theirs
Bonnie
daughter of Jom 77/3
In a message dated 6/9/1999 12:28:37 AM Eastern Daylight Time,
[log in to unmask] writes:
>
> >> What message are you responding to?? <<
>
> >> and find my actions decried as paranoia and stomping
> .huh? <<
>
>
> Ok, I found "paranoia", must have deleted "stomping"......
>
> It must be near a full moon............
> First Ivan and Michael,
> Now Janet and Judith and "X".
> Can't these "misunderstandings" better be solved in private mail??
>
> Hans. (paramused and bestomped)
>
>
=========================================================================
Date: Wed, 9 Jun 1999 07:02:31 EDT
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Bonnie Rowley <[log in to unmask]>
Subject: Re: A regular "Who Done It?"
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Linday,
That blew my theory - of knowing who something came from.
In a message dated 6/9/1999 1:10:51 AM Eastern Daylight Time,
[log in to unmask] writes:
> Hi,
> I realize that no one likes to see the mess below. But it looks to me
like
> someone ("horse" or "bryanc") using supranet.net is the culprit. Neither
Ben
> nor I have a website, so that's not where they got the addresses.
> Linda S. W.
> cg for Ben 69/5
>
>
> Return-path: <[log in to unmask]>
> Received: from horse.supranet.net (unverified [205.164.160.8]) by
hamextw01.
> htcomp.net
> (Rockliffe SMTPRA 3.2.0) with ESMTP id <[log in to unmask]>
> for <[log in to unmask]>;
> Tue, 8 Jun 1999 16:50:10 -0500
> Received: from bryanc.supranet.net (ppp11-77.supranet.net [205.164.160.77])
> by horse.supranet.net (8.9.3/8.9.3) with SMTP id QAA79369
> for <[log in to unmask]>; Tue, 8 Jun 1999 16:50:05 -0500 (CDT)
> (envelope-from [log in to unmask])
> Message-Id: <[log in to unmask]>
> X-Mailer: Aureate Group Mail Free Edition
> From: AgeNet Webmaster <[log in to unmask]>
> To: <[log in to unmask]>
> Date: Tue, 08 Jun 1999 16:49:06 -0600
> Subject: AgeNet Parkinson's News
> Reply-To: [log in to unmask]
> Organization: AgeNet, LLC.
>
=========================================================================
Date: Wed, 9 Jun 1999 07:01:40 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: john bjork <[log in to unmask]>
Subject: Re: A regular "Who Done It?"
MIME-Version: 1.0
Content-Type: multipart/alternative;
boundary="------------F01541A85CB9ECE5B1A18281"
--------------F01541A85CB9ECE5B1A18281
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Linda: I fear I am to blame for this. Hot on the heels of the Doctor's
Guide problem posting, I forwarded the AgeNet for Parkinson's "material"
to the List, thinking again that the List in general might find the
material useful. Now, If that weren't bad enough, we have the mess you
refer to in your post. Since some members may actually wish to keep the
material, and/or the connection with AgeNet, I think the most efficient
way to deal with this unrequested information is for the individual
member to delete the material, and, if desired, terminate any future
connection with AgeNet by sending an email to the [log in to unmask]
addresss. If I can do anything for you or any other member to speed the
resolution along, simply send me an email and I'll do what I can. I
can assure the List membership that if I ever spot "interesting"
material which I think would be of interest to everyone, I will simply
post the reference, not the material, to the List. However, given my
batting average this week, if I get the urge to post anything other than
the Parkinsaw, MI material I'll most likely lie down until that urge
goes away.
John Bjork
Linda Warrenburg wrote:
> Hi,I realize that no one likes to see the mess below. But it looks
> to me like someone ("horse" or "bryanc") using supranet.net is the
> culprit. Neither Ben nor I have a website, so that's not where they
> got the addresses.Linda S. W.cg for Ben 69/5 Return-path:
> <[log in to unmask]>
> Received: from horse.supranet.net (unverified [205.164.160.8]) by
> hamextw01.htcomp.net
> (Rockliffe SMTPRA 3.2.0) with ESMTP id
> <[log in to unmask]> for <[log in to unmask]>;
> Tue, 8 Jun 1999 16:50:10 -0500
> Received: from bryanc.supranet.net (ppp11-77.supranet.net
> [205.164.160.77])
> by horse.supranet.net (8.9.3/8.9.3) with SMTP id QAA79369
> for <[log in to unmask]>; Tue, 8 Jun 1999 16:50:05 -0500 (CDT)
> (envelope-from [log in to unmask])
> Message-Id: <[log in to unmask]>
> X-Mailer: Aureate Group Mail Free Edition
> From: AgeNet Webmaster <[log in to unmask]>
> To: <[log in to unmask]>
> Date: Tue, 08 Jun 1999 16:49:06 -0600
> Subject: AgeNet Parkinson's News
> Reply-To: [log in to unmask]
> Organization: AgeNet, LLC.
--------------F01541A85CB9ECE5B1A18281
Content-Type: text/html; charset=us-ascii
Content-Transfer-Encoding: 7bit
<HTML>
<BODY BGCOLOR="#FFFFFF">
Linda: I fear I am to blame for this. Hot on the heels of the
Doctor's Guide problem posting, I forwarded the AgeNet for Parkinson's
"material" to the List, thinking again that the List in general might find
the material useful. Now, If that weren't bad enough, we have the
mess you refer to in your post. Since some members may actually wish
to keep the material, and/or the connection with AgeNet, I think
the most efficient way to deal with this unrequested information is for
the individual member to delete the material, and, if desired, terminate
any future connection with AgeNet by sending an email to the [log in to unmask]
addresss. If I can do anything for you or any other member to speed
the resolution along, simply send me an email and I'll do what I can.
I can assure the List membership that if I ever spot "interesting" material
which I think would be of interest to everyone, I will simply post the
reference, not the material, to the List. However, given my batting
average this week, if I get the urge to post anything other than the Parkinsaw,
MI material I'll most likely lie down until that urge goes away.
<P>John Bjork
<P>Linda Warrenburg wrote:
<BLOCKQUOTE TYPE=CITE> <FONT FACE="Bell MT"><FONT COLOR="#000000"><FONT SIZE=+1>Hi,</FONT></FONT></FONT><FONT FACE="Bell MT"><FONT SIZE=+1>I
realize that no one likes to see the mess below. But it looks to
me like someone ("horse" or "bryanc") using supranet.net is the culprit.
Neither Ben nor I have a website, so that's not where they got the addresses.</FONT></FONT><FONT FACE="Bell MT"><FONT SIZE=+1>Linda
S. W.</FONT></FONT><FONT FACE="Bell MT"><FONT SIZE=+1>cg for Ben 69/5</FONT></FONT> <FONT FACE="Arial"><FONT COLOR="#000000"><FONT SIZE=-1>Return-path:
<<A HREF="mailto:[log in to unmask]">[log in to unmask]</A>></FONT></FONT></FONT>
<BR><FONT FACE="Arial"><FONT COLOR="#000000"><FONT SIZE=-1>Received: from
horse.supranet.net (unverified [205.164.160.8]) by hamextw01.htcomp.net</FONT></FONT></FONT>
<BR><FONT FACE="Arial"><FONT COLOR="#000000"><FONT SIZE=-1> (Rockliffe
SMTPRA 3.2.0) with ESMTP id <<A HREF="mailto:[log in to unmask]">[log in to unmask]</A>>
for <<A HREF="mailto:[log in to unmask]">[log in to unmask]</A>>;</FONT></FONT></FONT>
<BR><FONT FACE="Arial"><FONT COLOR="#000000"><FONT SIZE=-1> Tue, 8
Jun 1999 16:50:10 -0500</FONT></FONT></FONT>
<BR><FONT FACE="Arial"><FONT COLOR="#000000"><FONT SIZE=-1>Received: from
bryanc.supranet.net (ppp11-77.supranet.net [205.164.160.77])</FONT></FONT></FONT>
<BR><FONT FACE="Arial"><FONT COLOR="#000000"><FONT SIZE=-1> by horse.supranet.net
(8.9.3/8.9.3) with SMTP id QAA79369</FONT></FONT></FONT>
<BR><FONT FACE="Arial"><FONT COLOR="#000000"><FONT SIZE=-1> for <<A HREF="mailto:[log in to unmask]">[log in to unmask]</A>>;
Tue, 8 Jun 1999 16:50:05 -0500 (CDT)</FONT></FONT></FONT>
<BR><FONT FACE="Arial"><FONT COLOR="#000000"><FONT SIZE=-1> (envelope-from
<A HREF="mailto:[log in to unmask]">[log in to unmask]</A>)</FONT></FONT></FONT>
<BR><FONT FACE="Arial"><FONT COLOR="#000000"><FONT SIZE=-1>Message-Id:
<<A HREF="mailto:[log in to unmask]">[log in to unmask]</A>></FONT></FONT></FONT>
<BR><FONT FACE="Arial"><FONT COLOR="#000000"><FONT SIZE=-1>X-Mailer: Aureate
Group Mail Free Edition</FONT></FONT></FONT>
<BR><FONT FACE="Arial"><FONT COLOR="#000000"><FONT SIZE=-1>From: AgeNet
Webmaster <<A HREF="mailto:[log in to unmask]">[log in to unmask]</A>></FONT></FONT></FONT>
<BR><FONT FACE="Arial"><FONT COLOR="#000000"><FONT SIZE=-1>To: <<A HREF="mailto:[log in to unmask]">[log in to unmask]</A>></FONT></FONT></FONT>
<BR><FONT FACE="Arial"><FONT COLOR="#000000"><FONT SIZE=-1>Date: Tue, 08
Jun 1999 16:49:06 -0600</FONT></FONT></FONT>
<BR><FONT FACE="Arial"><FONT COLOR="#000000"><FONT SIZE=-1>Subject: AgeNet
Parkinson's News</FONT></FONT></FONT>
<BR><FONT FACE="Arial"><FONT COLOR="#000000"><FONT SIZE=-1>Reply-To: <A HREF="mailto:[log in to unmask]">[log in to unmask]</A></FONT></FONT></FONT>
<BR><FONT FACE="Arial"><FONT COLOR="#000000"><FONT SIZE=-1>Organization:
AgeNet, LLC.</FONT></FONT></FONT></BLOCKQUOTE>
</BODY>
</HTML>
--------------F01541A85CB9ECE5B1A18281--
=========================================================================
Date: Wed, 9 Jun 1999 11:27:25 +0200
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Nico Tack <[log in to unmask]>
Subject: re toothfilling
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit
Hi Nancy
I read the book of Hulda Regehr Clark: CURE FOR ALL DISEASES , by example
also for PD and ALzheimers. I made copies of the pages concerning the
toothfillings and took it to my dentist. He removed eight of my fillings and
I must say I am much better than two years ago. I experienced PD through
musclefailure and spasmas. I didnot have a tremor. I think I can be
diagnosed as a vascular PD, but sinemet helps me.. My medical aid paid my
expenses.
=========================================================================
Date: Wed, 9 Jun 1999 11:09:06 +0200
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Nico Tack <[log in to unmask]>
Subject: Re: toothfillings
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit
Hallo Rick
Sorry that I am a little late to answer your letter. Six years ago I was in
a very bad state. I didn't know anything about PD. I didn't believe the
doctor, who told me I had PD.. But I am an alternative person and I started
to treat my outside body. So I looked up in a aromatherapybook the essential
oils used for PD. I drank comfreytea for muscle strength. Because I
experienced my body loosing muscle power.
Then I heard of the book of Hulda Regehr Clark : CURE FOR ALL DISEASES who
told about the risk of the metal toothfillings for your health. I went to
my dentist with copies of the pages of the book.. He did the job and that is
now nearly 2 years ago. I sleep a lot better; my problem was I had a lot of
spasmas in my legs. I couldn't sit or lay down, only walk and stand. That is
all over now. My neurologist changed my medication a lot and I am now on
lesser pills as I was before.
Unfortunately we haven't so many neurologists in our neighbourhood, there is
now only one left, and I did not have heard a good word about him.
On the list they are talking now of a vascular PD. I think I qualify for
that. But sinemet definitive helps me a lot With help of the listmembers I
am now on 5x Sinemet 100mg en 5 x permax 0,25 and 1/2 sinemet CR
It helped me also to move around with your body, never sit too long, walk,
stand lay down. Change the position of your body . Move around a lot. Thats
what worked for me.
Annie.
=========================================================================
Date: Wed, 9 Jun 1999 07:44:54 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Bob Anibal <[log in to unmask]>
Subject: Billy Graham
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit
Just a couple of minutes ago I was watching Rev. "Billy" Graham on the Today
program. If only all of you PWP's had the PD under control as well as he has
it would be a wonderful world. Did anyone else see him - did I miss
something
Bob Anibal
=========================================================================
Date: Wed, 9 Jun 1999 08:12:50 EDT
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Bonnie Rowley <[log in to unmask]>
Subject: Re: Billy Graham
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
I had GMA (Good Morning America) on so missed Billy Graham.
May I ask, what do you mean "under control"?
Bonnie
daughter of Jim 77/3
In a message dated 6/9/1999 7:57:12 AM Eastern Daylight Time,
[log in to unmask] writes:
> Just a couple of minutes ago I was watching Rev. "Billy" Graham on the Today
> program. If only all of you PWP's had the PD under control as well as he
has
> it would be a wonderful world. Did anyone else see him - did I miss
> something
> Bob Anibal
>
=========================================================================
Date: Wed, 9 Jun 1999 08:28:21 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: janet paterson <[log in to unmask]>
Subject: a different kind of hero
Comments: cc: judith richards <[log in to unmask]>, lori <[log in to unmask]>,
donna <[log in to unmask]>
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
hi all
five months ago:
our list-family suffered a trauma and a loss
joe, a friend of one of our listmembers, died of 'unknown' causes
four months ago, i wrote:
>[i need to plaster this] on every pd medico's office door
>as well as on every parkie's own heart and brain
>imho...
>in my town, in my county, in my province, in my country...
>joe and his family did not suffer in vain
>and neither did we...
two months ago, joe's friend judith wrote:
>I sent Joe's story to the editor of the new magazine the
>Parkinson Post, but some of the board members vetoed it
>because they thought it would frighten people. It had
>already been published in our local paper, and I know
>it is being sent around the world because list members
>have asked permission to use it...
i agree with the pfc board members that it may 'frighten' people
fear is healthy
if it acts as a catalyst to action and furthering knowledge
fear is dangerous
if it results in censoring or muffling vital information
this month:
i have chosen this [ethereal] means of fulfilling my promise to myself
as the most effective way of 'spreading the word'
as far as it can go
joe's story: a PIEnet message thread
<http://www.geocities.com/SoHo/Village/6263/pienet/joestory/index.html>
janet
janet paterson
52 now / 41 dx / 37 onset
Postal: PO Box 171, Almonte, Ontario, K0A 1A0, Canada
WebUrl: <http://www.geocities.com/SoHo/Village/6263/>
E-mail: [log in to unmask]
=========================================================================
Date: Wed, 9 Jun 1999 06:37:54 PDT
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Cynthia Shook <[log in to unmask]>
Mime-Version: 1.0
Content-Type: text/plain; format=flowed
>>having some problem with dyskinesia
I've seen several messages concerning this. Can someone explain to me what
this is?
Grandma seems to be doing pretty good. Mom got her on the bath scales
yesterday and she's gained back a couple of pounds. The shake in her left
hand seems to come and go and when it's happening she does not seem to be
aware of it. She has not fallen but walks like she is having trouble with
her balance. She seems to be pretty sharp mentally but at times is a little
out of it.
_______________________________________________________________
Get Free Email and Do More On The Web. Visit http://www.msn.com
=========================================================================
Date: Wed, 9 Jun 1999 06:40:10 PDT
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Cynthia Shook <[log in to unmask]>
Subject: pallidotomy
Mime-Version: 1.0
Content-Type: text/plain; format=flowed
>>pallidotomy
I think I'm going to need a medical dictionary. Can someone please enlighten
me on this term also.
Cindy
_______________________________________________________________
Get Free Email and Do More On The Web. Visit http://www.msn.com
=========================================================================
Date: Wed, 9 Jun 1999 09:48:59 -0500
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Arthur Hirsch <[log in to unmask]>
Subject: Re: pallidotomy
In-Reply-To: <[log in to unmask]>
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Cindy,
I am still in the process of developing this page for my website, but I
have some reference material links available at
http://www.fortunecity.com/meltingpot/farley/817/aref.html
In this case, I suggest that you click on Mediconsult, click on Search, and
follow your nose thereafter.
For the more general audience, if you have suggestions about general
medical reference sites that I ought to add to this list, please mail the
URL's to me off-list. Thanks.
Art
At 08:40 AM 6/9/99 , you wrote:
>>>pallidotomy
>
>I think I'm going to need a medical dictionary. Can someone please enlighten
>me on this term also.
>
>Cindy
>
>
>_______________________________________________________________
>Get Free Email and Do More On The Web. Visit http://www.msn.com
________________________________________________________________
Arthur Hirsch {} [log in to unmask] {} Lewisville, TX {} 972-434-2377
(nickname on instant mail, ICQ, and chat programs is cutterson)
________________________________________________________________
PAN Forum, other photos, and my approach to links:
http://www.fortunecity.com/meltingpot/farley/817/
________________________________________________________________
=========================================================================
Date: Wed, 9 Jun 1999 09:55:33 -0500
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Terry Kempf <[log in to unmask]>
Subject: Re: Non pd
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit
I have ordered refill kits from:
www.refillkits.com
You drill a hole in cartridge and use needle to fill with ink.
Works pretty well except when you put too much ink in.
Prices vary depending on type. However much cheaper than
new cartridges.
Terry
----------
> From: Bob Anibal <[log in to unmask]>
> To: [log in to unmask]
> Subject: Non pd
> Date: Wednesday, June 09, 1999 5:56 AM
>
> I'm not sure it was on this forum where someone was bemoaning the high
price
> of ink cartridges for printers - anyway here is an address that
advertises
> cartridges at way below store prices some are rebuilt - some are buiy
one
> and get one free I am going to try them
> www.acsmsupplies.com/chef.html
> Bob Anibal
=========================================================================
Date: Wed, 9 Jun 1999 11:01:51 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Marilyn Dungan <[log in to unmask]>
Subject: Hallucinations
MIME-Version: 1.0
Content-Type: text/plain
Content-Transfer-Encoding: 7bit
Hi all:
Have been lurking for awhile. Claude(diag 1979) is getting hallucinations a
lot--mostly at night and they are keeping him awake. I have left message for his
Dr. to prescibe an anti-Hal. drug. Anyone out there have any experience with
them? Thanks, Marilyn D.
=========================================================================
Date: Wed, 9 Jun 1999 10:12:21 -0500
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Thomas Nolan <[log in to unmask]>
Subject: PD Caregiver Survey
Mime-Version: 1.0
Content-Type: text/plain; charset=US-ASCII
Greetings:
The response from all of you has been very encouraging and
appreciated. Yes, you can still participate in the survey, "Lay
Caregivers' Insights into the Needs of Parkinson's Disease Patients".
Please e-mail your name, address and zip/postal code. This is my
doctoral dissertation work at Northern Illinois University. All
replies are confidential and surveys will only be seen by University
researchers. And, yes, you will get a summary of the results of the
study. Thanks
Thomas L. Nolan, Jr.
RE/ACE Office
(Research & Evaluation in Adult Continuing Education)
Northern Illinois University
DeKalb, IL 60115
815/753-1621
[log in to unmask]
=========================================================================
Date: Wed, 9 Jun 1999 11:37:34 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: janet paterson <[log in to unmask]>
Subject: Re: i dont get it ti teg tnod i :eR
In-Reply-To: <[log in to unmask]>
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
hi boys and girls
At 23:35 1999/06/08 -0400, i wrote:
>bemused and befuddled
i take it all back
put it down to taaarrd 'n' hot
janet
eating crow
janet paterson
52 now / 41 dx / 37 onset
Postal: PO Box 171, Almonte, Ontario, K0A 1A0, Canada
WebUrl: <http://www.geocities.com/SoHo/Village/6263/>
E-mail: [log in to unmask]
=========================================================================
Date: Wed, 9 Jun 1999 09:01:12 PDT
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Cynthia Shook <[log in to unmask]>
Subject: Thanks for your responses
Mime-Version: 1.0
Content-Type: text/plain; format=flowed
Thank you so much for all your responses.
I've called one of the 800 numbers that someone sent to get some free
literature on Parkinson's.
I guess I do sound a little panicy but I'm the type I want all the
information that I can get so that I am prepared for what is to happen or
try and counteract inferior treatment.
I guess I started when a teacher suggested that I might want to get my son
checked for ADHD and it was suggested I put him on Ritalin. Well, to make a
long story short, it has been like night/day with him. But I do have to
monitor what he eats, weight gain, tolerence etc. I read every book I could
find, talked with the patient education dept of 2 hospitals, my doctor.
I'm following the same basic procedure here. From the information I have
learned so far...it seems that Parkinsons is more of a condition than a
disease that has to be maintained (depending on the severity) through
medicine and diet, as well as adjusting the person's environment to help
him/her live life to the fullest at what ever stage they are at.
Am I too far off base?
Cindy
_______________________________________________________________
Get Free Email and Do More On The Web. Visit http://www.msn.com
=========================================================================
Date: Wed, 9 Jun 1999 12:05:17 EDT
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: "LIST Helen K. Mason" <[log in to unmask]>
Subject: Re: Go-getter is relieved
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Hi,
Whew! I am relieved that this is over. You need no anxiety at this point just
before your performance.
Take care Friend!!
Helen
=========================================================================
Date: Wed, 9 Jun 1999 10:09:35 -0600
Reply-To: [log in to unmask]
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Betty Davis <[log in to unmask]>
Subject: Re: re toothfilling
Funny you all should mention toothfillings. For about 3 years I have
been having chest pains. The cardiologist has done all stress tests,
EKG, chest x-rays, blood tests and all revealed everything is normal.
But I don't have enough energy from one day to the next if I exert
myself. I keep wondering if there is a cardiac test that can tell if
something is wrong that the above mentioned tests don't catch.
and can't find anything wrong but I know pain when I feel it. About that
time I had a root canal and remember seeing a little root still left in
there and suspected it could be the root canal causing the problem. This
dentist has long since retired. Can a dentist x-ray a root canal to see
if there's any infection?
I'm a caretaker not the PWP.
Betty
>
>Hi Nancy
>
>
>I read the book of Hulda Regehr Clark: CURE FOR ALL DISEASES , by example
>also for PD and ALzheimers. I made copies of the pages concerning the
>toothfillings and took it to my dentist. He removed eight of my fillings and
>I must say I am much better than two years ago. I experienced PD through
>musclefailure and spasmas. I didnot have a tremor. I think I can be
>diagnosed as a vascular PD, but sinemet helps me.. My medical aid paid my
>expenses.
>
>
=========================================================================
Date: Wed, 9 Jun 1999 09:14:27 PDT
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Cynthia Shook <[log in to unmask]>
Subject: Re: i dont get it ti teg tnod i :eR
Mime-Version: 1.0
Content-Type: text/plain; format=flowed
Hey Janet,
It sounds like you're from the Gulf Coast Texas :)
90+ degrees and 90+% humidity. (Normal)
_______________________________________________________________
Get Free Email and Do More On The Web. Visit http://www.msn.com
=========================================================================
Date: Wed, 9 Jun 1999 12:52:31 -0700
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Don McKinley <[log in to unmask]>
Subject: Re: Hallucinations
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit
-----Original Message-----
From: Marilyn Dungan <[log in to unmask]>
To: [log in to unmask] <[log in to unmask]>
Date: Wednesday, June 09, 1999 8:02 AM
Subject: Hallucinations
>Hi all:
>Have been lurking for awhile. Claude(diag 1979) is getting hallucinations a
>lot--mostly at night and they are keeping him awake. I have left message
for his
>Dr. to prescibe an anti-Hal. drug. Anyone out there have any experience
with
>them? Thanks, Marilyn D.
>ME TO
i.y.q. don
=========================================================================
Date: Wed, 9 Jun 1999 12:42:22 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Ivan M Suzman <[log in to unmask]>
Subject: Re: vascular parkinsonism/death certificates
Comments: cc: [log in to unmask]
MIME-Version: 1.0
Content-Type: text/plain
Content-Transfer-Encoding: 7bit
Hi Bob and many others,
What an important organ the heart is to all of us, and yet, how ironic
that PD is not usually described as having effects on heart muscle.
The muscle fibres of the heart are a 3rd kind , so-called "cardiac
muscle." These differ
from both the involuntary, smooth fibres typical of an artery and the
voluntary, striated fibres typical of a skeletal muscle.
When I responded to Heidi, who initiated this thread, I tried to
describe what "vascular" (blood vessel) parkinsonism may be,
anatomically.
I agree with you and others, Bob, that a low or interrupted dopamine
supply would probably alter circulatiion of blood through the heart.
Probably, a high percentage of patients with advancing PD have added
risks of developing cardiac or respiratory problems caused by a lack of
dopamine. These PWP's and their caregivers may not yet realize that the
mssing dopamine is possibly involved in causing the dysfunction or
disease.
I wonder how many death certificates never mention PD, even though PD
(dopamine deficiency) might contribute to, or actually be the underlying
cause of death? Congestive cardiac failure , pneumonia, respiratory
failure, kidney and urinary tract failure, intestinal blockage and stroke
could each be due to dopamine deficiency in either
- the smooth muscle fibres of the vascular structures which supply
arterial blood and which drain venous blood and lymph from critical
organs; or
- the smooth muscle fibres of these organs and their ducts; or
- the cardiac muscle fibres of the hear; or
- the afferent nerves that lead to and control any of the above
structures.
Ivan
:-)
On Wed, 9 Jun 1999 06:33:54 -0400 Bob Anibal <[log in to unmask]> writes:
>Sure the PD is going to affect the heart - the heart function is
>controlled
>by the nervous system and sure as all H--- the nervous system is
>affected by
>PD so ERGO the PD will afffect the heart. When Cecily had her
>pacemaker
>installed I asked the MD if PD could have brought about the condition
>requiriing the PM. ( intermittent slow pulse and skipped beats). His
>reply
>was a bit on the vague side but he admitted that it was a strong
>possibility
>that my reasoning was right on.
>Bob Anibal CG for my Princess Cecily 79/~20
^^^^^^ WARM GREETINGS FROM ^^^^^^^^^^^^ :-)
Ivan Suzman 49/39/36 [log in to unmask] :-)
Portland, Maine land of lighthouses deg. F :-)
********************************************************************
=========================================================================
Date: Wed, 9 Jun 1999 12:51:00 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Craig Mellinger <[log in to unmask]>
Subject: Re: PD Caregiver Survey
MIME-Version: 1.0
Content-Type: text/plain; charset=gb2312
Content-Transfer-Encoding: 7bit
Im willing to help out wherever I can. Craig T Mellinger. 15 Tremley
Ct.,Parsippany New Jersey 07054-2520 e mail [log in to unmask]
Thomas Nolan wrote:
>
> Greetings:
> The response from all of you has been very encouraging and
> appreciated. Yes, you can still participate in the survey, "Lay
> Caregivers' Insights into the Needs of Parkinson's Disease Patients".
> Please e-mail your name, address and zip/postal code. This is my
> doctoral dissertation work at Northern Illinois University. All
> replies are confidential and surveys will only be seen by University
> researchers. And, yes, you will get a summary of the results of the
> study. Thanks
>
> Thomas L. Nolan, Jr.
> RE/ACE Office
> (Research & Evaluation in Adult Continuing Education)
> Northern Illinois University
> DeKalb, IL 60115
> 815/753-1621
> [log in to unmask]
=========================================================================
Date: Wed, 9 Jun 1999 13:09:20 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Jennifer Smith <[log in to unmask]>
Organization: Smoky Mountain Artworks
Subject: New Email Address
Comments: To: Alan Belcher <[log in to unmask]>
Comments: cc: Beave <[log in to unmask]>,
"[log in to unmask]" <[log in to unmask]>, Bobby <[log in to unmask]>,
Brenda Rodriguez <[log in to unmask]>,
"[log in to unmask]" <[log in to unmask]>,
Buzzy <[log in to unmask]>,
Cathey Norfleet <[log in to unmask]>,
"Charles T. Meyer, M.D." <[log in to unmask]>,
Chris <[log in to unmask]>,
"[log in to unmask]" <[log in to unmask]>,
Dave Zimmerman <[log in to unmask]>,
David/Sandra Norris <[log in to unmask]>,
Douglas <[log in to unmask]>,
"Dr. Korkeila" <[log in to unmask]>,
"Dr. Stuart Shipko" <[log in to unmask]>,
"Dr. Stuppy" <[log in to unmask]>,
Duggie du Toit <[log in to unmask]>, ELECTRICTION <[log in to unmask]>,
"[log in to unmask]" <[log in to unmask]>,
Gabrielle <[log in to unmask]>, Gary Ely <[log in to unmask]>,
Gina Cass <[log in to unmask]>, Hilary Blue <[log in to unmask]>,
Ivan M Suzman <[log in to unmask]>, Janet and CB <[log in to unmask]>,
JOEL WEATHERS <[log in to unmask]>,
john bjork <[log in to unmask]>,
John Cottingham <[log in to unmask]>,
John I Quist <[log in to unmask]>,
"Kathrynne Holden, MS,RD" <[log in to unmask]>,
"[log in to unmask]" <[log in to unmask]>,
Lori Wolf <[log in to unmask]>, Martha <[log in to unmask]>,
"Martin K. Bayne" <[log in to unmask]>,
"[log in to unmask]" <[log in to unmask]>,
"Mr. Dawson" <[log in to unmask]>,
"[log in to unmask]" <[log in to unmask]>,
pat claybaker <[log in to unmask]>,
"R.T.Thomas" <[log in to unmask]>,
"[log in to unmask]" <[log in to unmask]>,
Robert and Caridad <[log in to unmask]>,
Roger Stevens <[log in to unmask]>,
"[log in to unmask]" <[log in to unmask]>, Sharon <[log in to unmask]>,
"Sharon A. McDonald" <[log in to unmask]>,
Sharon Hotmail <[log in to unmask]>,
Shumaker <[log in to unmask]>,
Stan and Betty <[log in to unmask]>,
Stan or Joan Snyder <[log in to unmask]>,
"[log in to unmask]" <[log in to unmask]>,
Waltah <[log in to unmask]>, Willie and Pat <[log in to unmask]>
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Hi All,
Just letting you know I have a new email address.
[log in to unmask]
Lon and Jennifer Smith
Smoky Mountain Artworks
--
Ars Longa - Vita Brevis
Art is Long - Life is short
:(:) )
=========================================================================
Date: Wed, 9 Jun 1999 13:13:50 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Jennifer Smith <[log in to unmask]>
Organization: Smoky Mountain Artworks
Subject: NON PD: New email address
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Hi Listmemebers,
Just wanted to notify everyone of my new email address
[log in to unmask]
Jennifer Smith
--
Ars Longa - Vita Brevis
Art is Long - Life is short
:(:) )
=========================================================================
Date: Wed, 9 Jun 1999 02:25:04 -0700
Reply-To: [log in to unmask]
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Walter Ervin <[log in to unmask]>
Subject: Ivan/Dystonia
Comments: To: Ivan M Suzman <[log in to unmask]>
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Hello Ivan,
Thanks for your concern and detailed reply. I just now found it because
my ISP does funny things with incoming messages. I was looking for your
reply forward (from the last message), when in fact the isp put it back
under the subject thread. I only found it by accident today, since I
typically run a couple of hundred messages behind. I think you are
right on all counts. ..wme
Ivan M Suzman wrote:
>
> Hi Walter,
>
> I think what we are discussing has great general value. If you wish to
> quote anypart of our conversation and post to the whole List, that would
> be OK with me.
I agree, and am copying to the list. ..wme
> I have hosted a bass section rehearsal today, and am a little overtired.
> So please forgive me for spelling errors and murky phrases. I'll do the
> best I can.
>
> I want to find out more about the dystonia that you have. I think it is
> very unusual for Sinemet CR to cause dystonia. By dystonia, I am
> referring to hard, tight, painful, cramped muscles, especially the toe
> muscles, causing them to flex underneath the foot and not let go.
You have described my arm pain - "hard, tight, painful, cramped
muscles," My wife can even find the knots in my arm. When I am in this
state, by feet are not in pain unless I try to walk on them, but walking
causes pain. When I am 'on', I can walk without pain in my feet. So, I
was ASSUMING that my feet are also in dystonia. However, no curling
under or pain unless I try to walk. ..wme
> This is always (as opposed to sometimes) a sign that I need more
> medication. It occurs either if my nighttime meds at 3:45AM are not
> working, or if my meds during the day are
> blocked by food, especially high-protein food, or if I am late in taking
> a dose, so that my dopamine level dropped down too low.. It can last 10
> minutes to 2 hours.
I'm beginning to agree with you, but the food thing really causes me
problems. There is a history of hypoglycemia in our family, and if I
don't eat I feel terribly weak. I HAVE to start the day with orange
juice to even begin to walk. Funny thing though; if I start with OJ and
exercise (which also raises blood sugar level), I can do without any
meds for at least 2 hours. Then I have to eat and the food blocks the
meds and I can get no on time until after lunch. ANY protein at all
kill meds too. ..wme
> If I am either too cold, underprotected from cool or cold air, or
> overtired, dystonia is more likely. Also if my sugar level is too low.
Same here, but I didn't know the blood sugar level affected it also.
..wme
> With Sinemet CR being more slowly absorbed, it is not as effective in
> stopping dystonia as regular Sinemet, which absorbs quickly. I use them
> together. Regular Sinemet is like first gear and CR like a 3rd gear for
> highway driving.
>
> What I am thinking is that the CR may have been paratially blocked, and
> that your dystonia was NOT due to CR, but rather to protein or food
> blockage.
I hope you are right, and I am going to try the CR again, only this time
try your schedule as much as possible. However, the CR I have is
50/200, and as far as I know, I can only break in two (25/100).
Question: When do you eat and how do you avoid protein? It seems
protein is in everything. Is there any difference between ANIMAL
protein, and vegtable protein (ie beans and rice in combo)? ..wme
> Maybe the CR never got a chance to work.
>
> Also, Walter, did you try it with or without regular Sinemet?
Both ways. However, I have had too many variables to contend with. I
had continued to exercise with light weights until recently, but now
think that the weights were contributing to the arm pain. So I cut them
out too. ..wme
> If you take only regular Sinemet, you could crash off it, go into
> dystonia due to low dopamine, and never have long on-periods. If the CR
> was blocked, the low-dopamine dystonia would appear CONCOMITANTLY and you
> could think that this was being caused by the CR that actually was
> swallowed, but not getting into your system.
Exactly. You don't know how many times I have complained to my wife,
"if I only had a gague to tell me if I'm over or under medicated"!
Another reason I think you are right, is when I took the CR the pain
would usually start within 10 or 15 minutes. And from what you are
saying, that is too soon for overmedication.
> I take EXACTLY what you do, except that I take two more doses of my
> Sinemet- Sinemet CR combo, at bedtime and at about 3:45. I do like your
> overall medication pattern, except that there is nothing to get you
> through the night.
>
> So the next step is for you to tell me about your use of CR. If you took
> it with regular SInemet, it would either cause DYSKINESIA if there was
> too much in your system from the two medications combined, or smooth,
> longer on-periods, if it worked well.
I tried only briefly with regular simemet, had a lot of pain so
discontinued. I don't think I have ever had dyskinesia. ..wme
> If it caused dystonia, I would be surprised. I just want to be sure that
> it wasn't dystonia due to levodopa not getting through the blood-brain
> barrier, not converting to dopamine there.This would be the more likely
> cause of DYSTONIA.
>
> Do you think that the CR could have been taken without adequate
> absorption? Did you take it 30 minutes BEFORE eating? Do you do that
> NOW with the regular Sinemet?
Not being absorbed is a very real possibility. I'm trying to allow 30 -
45 minutes before eating, and an hour after eating. ..wme
> My schedule , not the best, but as good as I can manage, is
>
> Sinemet (3/4 or 1/2 of a 25/100): 6:45AM, 9:30, 12:15PM, 3:15, 6:15PM,
> 9:15, 12:15AM
> , 3:45
> Sinemet CR (3/4 or 1/2 of a 25/100 CR) same as regular Sinemet
> Eldepryl (1/2 of 1 5mg tablet) 6:45 AM, 9:30 AM
> Tasmar (1/2 of a 100 mg pill) 9:30AM, 12:15 PM, 6:15 PM, 12:15 AM
>
> Good wishes for a better day tomorrow. Look forward to hearing from you.
>
> God Bless
>
> Ivan :-)
Thanks Ivan.
Another question. How does Tasmar fit in? i.e. How would you adjust
your schedule if you didn't have Tasmar? One BIG variable that I can't
control is stress. Even small amounts of stress cause me to go off, and
then I find myself asking, "is it the meds schedule or the stress"?
Due to the length of this, I am not sending the previous notes. I am
also changing the subject so my isp won't 'hide' the note from me.
Walter
PS I don't get to spend as much time as I would like to to keep up with
this list, and am usually behind. If you copy me on [log in to unmask] I
will find your reply a lot faster, as I get very few messages there.
=========================================================================
Date: Wed, 9 Jun 1999 11:55:15 -0700
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Barb_MSN <[log in to unmask]>
Subject: Re: A regular "Who Done It?"
I got the same message in my email today, and decided that since I
didn't order the service, I'd just delete the post.
By the way, if any of you ever receive a canned email message such
as the one we're discussing and don't want to join their service,
do NOT reply in ANY WAY, even to send them their own "unsubscribe"
email.
A reply of any kind to one of these "spammers" merely indicates
to their software that there IS a "live body" on the other end of
their original email. Once they have that information, you're
theirs forever!
Soooo... in this case, a non-response IS the best response.
Barb Mallut
[log in to unmask]
-----Original Message-----
From: Bonnie Rowley <[log in to unmask]>
To: [log in to unmask] <[log in to unmask]>
Date: Wednesday, June 09, 1999 4:07 AM
Subject: Re: A regular "Who Done It?"
>Linday,
>That blew my theory - of knowing who something came from.
>
>In a message dated 6/9/1999 1:10:51 AM Eastern Daylight Time,
>[log in to unmask] writes:
>
>> Hi,
>> I realize that no one likes to see the mess below. But it
looks to me
>like
>> someone ("horse" or "bryanc") using supranet.net is the
culprit. Neither
>Ben
>> nor I have a website, so that's not where they got the
addresses.
>> Linda S. W.
>> cg for Ben 69/5
>>
>>
>> Return-path: <[log in to unmask]>
>> Received: from horse.supranet.net (unverified [205.164.160.8])
by
>hamextw01.
>> htcomp.net
>> (Rockliffe SMTPRA 3.2.0) with ESMTP id
<[log in to unmask]>
>> for <[log in to unmask]>;
>> Tue, 8 Jun 1999 16:50:10 -0500
>> Received: from bryanc.supranet.net (ppp11-77.supranet.net
[205.164.160.77])
>> by horse.supranet.net (8.9.3/8.9.3) with SMTP id QAA79369
>> for <[log in to unmask]>; Tue, 8 Jun 1999 16:50:05 -0500 (CDT)
>> (envelope-from [log in to unmask])
>> Message-Id: <[log in to unmask]>
>> X-Mailer: Aureate Group Mail Free Edition
>> From: AgeNet Webmaster <[log in to unmask]>
>> To: <[log in to unmask]>
>> Date: Tue, 08 Jun 1999 16:49:06 -0600
>> Subject: AgeNet Parkinson's News
>> Reply-To: [log in to unmask]
>> Organization: AgeNet, LLC.
>>
>
=========================================================================
Date: Wed, 9 Jun 1999 22:31:51 +0200
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Hans van der Genugten <[log in to unmask]>
Subject: Reply by Agenet regarding emailaddresses
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit
Hi all,
I sent an email to Agenet with some questions.
And I received an answer from David Williams, one of the two persons behind
Agenet.
Below I post both emails.
Hans.
-----------------------
>From: "Hans van der Genugten" <[log in to unmask]>
>To: <[log in to unmask]>
>Subject: Agenet/Parkinson
>Date: Tue, Jun 8, 1999, 8:59 PM
>
> Hello webmaster,
>
> Could you tell me:
> - Where did you get my emailaddress?
> - How you knew of my connection with Parkinson's Disease?
>
> In general:
> Who did you send this email about Agenet?
>
> Thanks in advance for your reply!!
>
> Hans van der Genugten.
>
>
--------------------------
--------------------------
-----Oorspronkelijk bericht-----
Van: David Williams <[log in to unmask]>
Aan: Hans van der Genugten <[log in to unmask]>
Datum: woensdag 9 juni 1999 16:06
Onderwerp: Re: Agenet/Parkinson
We sent this information to people who have expressed an interest in
Parkinson's Disease at various web sites. These names often appear in e-mail
messages and at other locations on the Internet including some published
lists. I do not specically know how we got your name and nor do we know
what your specific association with Parkinson's disease is (doctor, patient,
family member?). If you wish to be deleted from future mailings, we will be
happy to honor your wishes.
We sent the AgeNet message on Parkinson's information to well over 5,000
people. Future information will include articles from a respected
Parkinson's physician, Dr. Mike Rezak.
Do you wish to be deleted from our mailing list?
David Williams
[log in to unmask]
------------------------
=========================================================================
Date: Wed, 9 Jun 1999 17:38:52 -0500
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Catherine S Berk <[log in to unmask]>
Subject: <no subject>
Mime-version: 1.0
X-Priority: 3
Content-type: text/plain; charset="US-ASCII"
Content-transfer-encoding: 7bit
nomail
=========================================================================
Date: Wed, 9 Jun 1999 17:35:46 EDT
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Clare Wilson <[log in to unmask]>
Subject: Re: What is Dyskinesia
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Cynthia, your reporting on your mother's and your grandmother's activities
is clear and to the point. We know exactly what is going on because of your
style of reporting. Dyskinesias are the abnormal involuntary movements,
usually associated with too much antiparkinson medication. I experience
dyskinesia in my legs in the evenings if my last two doses were not
properly separated in time. You will receive other, and better, definitions
I'm sure. You seem to have a handle on what you are doing, and my
thoughts are with you daily.
Clare Wilson
=========================================================================
Date: Wed, 9 Jun 1999 17:37:12 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: john bjork <[log in to unmask]>
Subject: (Non-PD)Parkinsaw, MI: Special Report, June 9, 1999
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Dateline: Parkinsaw, MI
Special Report: Pope Paul Postpones Pilgrimage to Parkinsaw Pending
Previous Plans. Pleased Persecuted Pigs Properly Protected in Parkinsaw
by Premier Porker Premises Protection Plan
June 9, 1999
Well, it's been quite a day here in humid, hot Parkinsaw, MI. First,
although Pope John Paul VI did not travel to Parkinsaw citing his health
and other factors, sources within the Vatican confirm that a
confidential visit was made by one of their representatives to assess
the efficacy of the protection safeguards installed at the Porker and
Goose Sanctuary. The representative, who we will call Father Sarducci,
was in Michigan to see a Detroit Tigers baseball game. Following the
game, he made a secret 500-mile side trip north to Parkinsaw, met with
the Porker and Goose Sanctuary security manager Dudley Doowrong, and was
given a tour of the security controls installed there. Obviously, we
cannot reveal any one security measure lest we compromise the entire
security structure, but Father Sarducci was impressed by the
thoroughness of the security approach, and pronounced the pigs and geese
"properly protected." The envoy was then given a short briefing on the
situation in CT and OH, including the Flying Pigs, and what we now call
"Parcel Pigs," or, pigs en route to the Sanctuary, and appeared
satisfied that everything possible was being done from an animal rights
viewpoint. Mr. Doowrong, who also has PD, told me that he informally
mentioned to the special envoy over a couple cold Levolagers, that many
people think His Holiness should assume a more active role in calling
attention to the devastating nature of Parkinson's Disease world-wide,
be more aggressive in leading the fight to find a cure, and openly
discuss his own experiences with the disease. Father Sarducci smiled
and said something to the effect that no promises, but "he would see
that the message was passed on." With that, the good Father disappeared
as mysteriously as he had arrived. A final item. Given that it was in
the 90's up here this week, those individuals Planning Passages for
Parcel Pigs should Ponder this Poop when Packing Pigs Pokes.
John Bjork
Parkinsaw, MI (An imaginary community for Parkinsonians in Michigan's
Upper Peninsula
"A View from the Lighter SIde of PD"
=========================================================================
Date: Wed, 9 Jun 1999 17:38:42 EDT
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Clare Wilson <[log in to unmask]>
Subject: Re: pallidotomy
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Cynthia, I have a great "Guide for Patients and their Families" published
by APDA with all this information, terminology, etc. I will send you my
extra copy if you forward your mailing address. Or you can order it from
the APDA, by calling l-800-223-2732.
Clare Wilson
=========================================================================
Date: Wed, 9 Jun 1999 18:06:39 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Ivan M Suzman <[log in to unmask]>
Subject: Tutu Prayer published ( The Bridge)
MIME-Version: 1.0
Content-Type: text/plain
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^^^^^^ WARM GREETINGS FROM ^^^^^^^^^^^^ :-)
Ivan Suzman 49/39/36 [log in to unmask] :-)
Portland, Maine land of lighthouses deg. F :-)
********************************************************************
=========================================================================
Date: Wed, 9 Jun 1999 15:30:06 -0700
Reply-To: [log in to unmask]
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: "J. R. Bruman" <[log in to unmask]>
Subject: Re: pallidotomy
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
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Cynthia Shook wrote:
> >>pallidotomy
> I think I'm going to need a medical dictionary. Can someone please enlighten me on this term also.
Anyone serious about keeping up with news regarding PD or any other
medical subject should have a medical dictionary. There are several
good ones on the market, and the one I bought (and use a lot) is
Taber's Encyclopedic Medical Dictionary, 18th ed: F. A. Davis Co.,
Philadelphia. Written mostly for nurses and medical aides rather than
doctors, it uses simple language, has lots of good illustrations and
other general information. Cheers,
Joe
--
J. R. Bruman (818) 789-3694
3527 Cody Road
Sherman Oaks, CA 91403-5013
=========================================================================
Date: Wed, 9 Jun 1999 18:32:20 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Camilla Flintermann <[log in to unmask]>
Subject: Re: Hallucinations
In-Reply-To: <[log in to unmask]>
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
>Hi all:
>Have been lurking for awhile. Claude(diag 1979) is getting hallucinations a
>lot--mostly at night and they are keeping him awake. I have left message
>for his
>Dr. to prescibe an anti-Hal. drug. Anyone out there have any experience with
>them? Thanks, Marilyn D.
Dear Marilyn---there are several anti-hallu. drugs that are used for PWPs.
Earlier ones , Clozaril and(I think also) Zyprexa, required frequent
blood tests. The new one, Seroquel does not. They must be gicen in
smaller doses to PWPs than to schizophrenics, and monitored by the neuro,
but can be very helpful. Peter is taking Seroquel, and it has helped keep
hallu. down and mild--but the neuro said he would probably always have a
few. It is common o have them at night,BTW, as Claude does. Ask your doc
re: Seroquel as I have seen few complaints about it on the list. You can
also find posts in the archives about this subject
the pd list archives web-site
[which is maintained by simon coles]
[and which is part of the pwp web-ring maintained by jerry finch]
is at:
http://james.parkinsons.org.uk/
Camilla Flintermann, CG for Peter 81/70/55
Oxford, Ohio
http://www.newcountry.nu/pd/members/camilla/one.htm
<[log in to unmask]>
"Ask me about the CARE list for
Caregivers of Parkinsonians ! "
=========================================================================
Date: Wed, 9 Jun 1999 18:42:51 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Camilla Flintermann <[log in to unmask]>
Subject: Re: Thanks for your responses
In-Reply-To: <[log in to unmask]>
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Hi Cindy---
You wrote:
>I've called one of the 800 numbers that someone sent to get some free
>literature on Parkinson's.
Good move!
>
>I guess I do sound a little panicy but I'm the type I want all the
>information that I can get so that I am prepared for what is to happen or
>try and counteract inferior treatment.
Good attitude!
SNIPPED
From the information I have
>learned so far...it seems that Parkinsons is more of a condition than a
>disease that has to be maintained (depending on the severity) through
>medicine and diet, as well as adjusting the person's environment to help
>him/her live life to the fullest at what ever stage they are at.
>
>Am I too far off base?
I'm not sure what you mean here-- PD is definitely a disease, and as it
progresses medication is very much needed to keep the PWP
functioning---diet, exercise, attitude all help, but without the meds a
person eventually would freeze up into immobility. The PD will progress at
different speeds and with different symptoms in each P WP--different doses
of different meds may be taken---it gets confusing!
I hope you will find the materials you've asked for to be helpful--there's
a lot to learn, and as you say it is wise to be prepared! May I suggest
that you might find it helpful to join the CARE list, as I do not see your
name on it at present?
>
>Cindy
>
>
>_______________________________________________________________
>Get Free Email and Do More On The Web. Visit http://www.msn.com
Camilla Flintermann, CG for Peter 81/70/55
Oxford, Ohio
http://www.newcountry.nu/pd/members/camilla/one.htm
<[log in to unmask]>
"Ask me about the CARE list for
Caregivers of Parkinsonians ! "
=========================================================================
Date: Wed, 9 Jun 1999 16:55:31 -0600
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: "Kathrynne Holden, MS,RD" <[log in to unmask]>
Organization: Five Star Living, Inc.
Subject: Re: pallidotomy
Comments: To: [log in to unmask]
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Joe, there are some pretty good websites that offer definitions of
medical terms. One is InteliHealth:
http://www.intelihealth.com/IH/ihtIH?t=9276&p=~br,IHC|~st,408|~r,EMIHC000|~b,*|
Another is multilingual -- pick your language:
Multilingual Glossary of technical and popular medical terms in nine
European Languages
This project was commissioned by The European Commission(DG III) and
executed by Heymans Institute of Pharmacology and Mercator School,
Department of applied Linguistics.
http://allserv.rug.ac.be/~rvdstich/eugloss/welcome.html
Best regards,
Kathrynne
"J. R. Bruman" wrote:
>
> Cynthia Shook wrote:
> > >>pallidotomy
> > I think I'm going to need a medical dictionary. Can someone please enlighten me on this term also.
>
> Anyone serious about keeping up with news regarding PD or any other
> medical subject should have a medical dictionary. There are several
> good ones on the market, and the one I bought (and use a lot) is
> Taber's Encyclopedic Medical Dictionary, 18th ed: F. A. Davis Co.,
> Philadelphia. Written mostly for nurses and medical aides rather than
> doctors, it uses simple language, has lots of good illustrations and
> other general information. Cheers,
> Joe
> --
> J. R. Bruman (818) 789-3694
> 3527 Cody Road
> Sherman Oaks, CA 91403-5013
--
Kathrynne Holden, MS, RD
Medical nutrition therapy
Author: "Eat well, stay well with Parkinson's disease"
"Parkinson's disease: assessing and managing unique nutrition needs"
http://www.nutritionucanlivewith.com/
=========================================================================
Date: Wed, 9 Jun 1999 19:00:53 EDT
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: "[Yourfirstname] [Yourlastname]" <[log in to unmask]>
Subject: Re: (Non-PD)Parkinsaw, MI: Special Report, June 9, 1999
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
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"Dear John"
Sounds like the pigs have"taken over".Fantasy out of control.Enough already.
Arnold
=========================================================================
Date: Wed, 9 Jun 1999 11:30:38 -0300
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Joao Paulo Carvalho <[log in to unmask]>
Subject: Re: Tremor drug??????
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
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Dear Marie ,
Have you folks already tried Mirapex ? (I have read it is sometime a good help
with tremors)
Best wishes ,
"Callie M. Judd" wrote:
> Dear Joao: Sorry this reply is late but I'm running 5days behind on my mail
> - to
> many home projects now that school's out- You asked if my husband takes
> Sinimet with his Cogentin - Yes, he is on 800mg Sinimet CR. He has started
> having some problem with dyskinesia so we hoped to reduce the Sinimet by
> taking
> Bromocriptine too - but so far no luck on any reduction-
> We've tried three times before to remove the final 1 mg. Cogentin
> since we
> feel it contributes to his difficulties with constipation and hallucinations
> - but the
> tremors have always been under good control. We are now in the process of
> trying to reduce the Cogentin gradually enough to discontinue it but we
> aren't sure
> if the Sinimet & Bromocriptine will keep the tremors away. We will be keeping
> track if his ongoing but mild hallucinations leave him as we reduce the
> Cogentin,
> (we don't know for sure that the hallucinations aren't caused by the Sinimet
> or the
> Bromo - but the Neuro says the Cogentin is not supposed to be doing him any
> good anymore) The reduction will take about 3-4 weeks - will let you know
> the
> results - if he has to stay on it, it will be a good bet that nothing else
> he's used
> does well against tremor. Any other Cogentin users out there having
> "withdrawel"
> difficulties - using it for tremor reduction?........
--
+----| Joao Paulo de Carvalho |------ +
| [log in to unmask] |
+--------| Salvador-Bahia-Brazil |------+
=========================================================================
Date: Wed, 9 Jun 1999 18:16:00 -0700
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Carole Hercun <[log in to unmask]>
Subject: Re: Hallucinations & NON-PD
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Clozaril requires weekly blood tests for the first six months (to make
sure that the white blood cell count is not depressed), and bi-weekly
blood tests after that.Seroquel, which is similar in mechanism to
Clozaril, does not. Zyprexa also does not require any blood tests, but
the literature suggests that Clozaril and Seroquel, in small doses,(as
little as 50mg.)may be the preferred drugs to use for a Parkinson's
patient experiencing hallucinations.For Schizophrenia, doses as high as
900mg./day are used. Carole Hercun,RNC P.S. NON-PD: Dear Arnold:
Lighten up!
_________________________________________________________
Do You Yahoo!?
Get your free @yahoo.com address at http://mail.yahoo.com
=========================================================================
Date: Wed, 9 Jun 1999 23:54:10 +0100
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Brian Collins <[log in to unmask]>
Subject: Re: Tremor drug??????
In-Reply-To: <[log in to unmask]>
MIME-Version: 1.0
Content-Type: TEXT/PLAIN; CHARSET=US-ASCII
On Wed 09 Jun, Callie M. Judd wrote:
> having some problem with dyskinesia so we hoped to reduce the Sinimet by
> taking
> Bromocriptine too - but so far no luck on any reduction-
> We've tried three times before to remove the final 1 mg. Cogentin
> since we
> feel it contributes to his difficulties with constipation and hallucinations
> - but the
> tremors have always been under good control. We are now in the process of
> trying to reduce the Cogentin gradually enough to discontinue it but we
> aren't sure
> if the Sinimet & Bromocriptine will keep the tremors away. We will be keeping
> track if his ongoing but mild hallucinations leave him as we reduce the
> Cogentin,
> (we don't know for sure that the hallucinations aren't caused by the Sinimet
> or the
> Bromo - but the Neuro says the Cogentin is not supposed to be doing him any
> good anymore) The reduction will take about 3-4 weeks - will let you know
> the
> results - if he has to stay on it, it will be a good bet that nothing else
> he's used
> does well against tremor. Any other Cogentin users out there having
> "withdrawel"
> difficulties - using it for tremor reduction?........
> Hope we can be of help....... Marie
> Carepartner Husband
>
> 69/l2
>
>
>
Marie, I think you have missed the main culprit: The cause of your husbands'
dyskinesia is the Sinemet CR. The vital parameter in takng Sinemet is the
rate of flow of levadopa. Here are some typical values:
Quantity l-dopa Duration Rate of flow
Ordinary Sinemet plus 100mg 2 hrs 50
Sinemet CR 200mg 4 hrs 50
Sinemet LS 50 2 hrs 25
You will see that the popular tabs give the same rate of flow. You need
a certain rate of flow to make up for the missing dopamine cells output.
I will quote my figures, but yours will probably be in the same general
area. My 'bottom line' rate of flow is 37.5mg per hr. Below that value,
I get 'Offs' - above it I get Dyskinesias. Keep in mind that you have
no control over the timescale: all you can do is vary the size of the
dose.
The next point is that you cannot influence the l-dopa-caused dyskinesias
by juggling Cogentin or anything else except l-dopa. You must get the
Sinemet right first, then worry about the rest.
Last, This is a big mouthfull in one go. To see it in more detail, may
I suggest that you read my booklets Living with Levabopa, and A Model
to describe the effect of levadopa.... on the following Web site:
http:/james.parkinsons.org.uk
Regards,
--
Brian Collins <[log in to unmask]>
=========================================================================
Date: Wed, 9 Jun 1999 20:21:15 -0700
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Gordon Seese <[log in to unmask]>
Subject: Re: Combination problems
In-Reply-To: <9F1420C7E94ED211AEA10000F8C992E403D88D35@TXNTE22>
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
At 03:36 PM 6/7/99 -0500, you wrote:
>
> > As your mother is not taking any medications at this time,
>> protein won't It isn't my Mother (56), it's my Grandmother (83). My mom
>is taking care of Grandma (her mother) but since she is partially
>handicapped due to a car wreck back in 1988, Mom depends on me to help her
>with some decisions. I guess things have kind of spilled over to my
>generation. I had mentally prepared myself for taking care of my Mom
>(especially after Dad died in 1994) but I'm in kind of shock about adding
>my Grandma to the list. &&& Grandma in their own place. Us in a place and
>his mom in a place (his mom recently had a mild stroke), So that we can be
>there for all of them. Sorry to be so whiney.
Not whiney, my dear, that is why we are all hee. You and your husband are
very strong people. It makes my caregiving of one seem simple. Hang in
there..REgards, Thea Lou Seese CG Gordon 71/21
=========================================================================
Date: Wed, 9 Jun 1999 20:42:49 -0700
Reply-To: [log in to unmask]
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: "J. R. Bruman" <[log in to unmask]>
Subject: Re: pallidotomy
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Kathrynne Holden, MS,RD wrote:
> Joe, there are some pretty good websites that offer definitions of
> medical terms. One is InteliHealth:
> http://www.intelihealth.com/IH/ihtIH?t=9276&p=~br,IHC|~st,408|~r,EMIHC000|~b,*|
Thanks Kathrynne, but I guess I'm a dinosaur- I still prefer my records
(and dictionaries) on paper. I tried the URL above (which incidentally
is sponsored by Johns Hopkins U) to find out what is a 5-HT receptor.
I'm still looking: can anyone help on this? Cheers,
Joe
--
J. R. Bruman (818) 789-3694
3527 Cody Road
Sherman Oaks, CA 91403-5013
=========================================================================
Date: Wed, 9 Jun 1999 23:30:58 -0500
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Phil Tompkins <[log in to unmask]>
Subject: Re: vascular parkinsonism
In-Reply-To: <[log in to unmask]>
MIME-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7BIT
Barb_MSN asked:
> ... the heart is a muscle .... Does anyone KNOW if the heart CAN be
> affected by PD?
Very interesting question -- if PD affects movement, what about
heart muscle contractions? I got curious and did a little research.
Here's some of what I found. Any additions or corrections to the
following will be appreciated.
Thankfully, the heart does not experience any of the principal
Parkinsonian motor effects -- tremor, bradykinesia, and stiffness --
nor the drug effect dyskinesia. If it did, we would certainly know
about it! This is because the heart's basic activating and control
mechanism is within the heart itself, and not in the motor centers of
the brain. Electrical impulses originating within the upper right
chamber of the heart in specialized muscle tissue called the
sinoatrial node (S-A node) set the basic heartbeat and cause
contactions in those parts of the heart that contract. This gives
the heart a fair degree of independence and isolation from injury
elsewhere in the body. Pretty good design, I'd say.
Hormones such as epinephrine and signals via nerves connected to the
autonomic nervous system modify the basic heartbeat, according to,
e.g., the body's needs for more or less oxygen. It's via the
autonomic nervous system that effects on blood pressure and heartbeat
related to PD occur. This is more the area under discussion, and
here I need to do a lot more research. To be continued (if and when I
am able).
Phil Tompkins
Hoboken NJ
age 61/dx 1990
=========================================================================
Date: Thu, 10 Jun 1999 00:02:13 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: janet paterson <[log in to unmask]>
Subject: Re: pallidotomy / receptor question
In-Reply-To: <[log in to unmask]>
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
hi all
At 20:42 1999/06/09 -0700, a cheery dinosaur wrote, in part:
>...I still prefer my records (and dictionaries) on paper.
>I tried the URL above (which incidentally is sponsored by
>Johns Hopkins U) to find out what is a 5-HT receptor.
>I'm still looking: can anyone help on this?...
try
Specific neurotransmitter systems
<http://www.uams.edu/department_of_psychiatry/syllabus/NEUROTRA/Trans95.htm>
i did a search at google.com and came up with over 500 hits
when you figure out what it is, let me know
janet
janet paterson
52 now / 41 dx / 37 onset
Postal: PO Box 171, Almonte, Ontario, K0A 1A0, Canada
WebUrl: <http://www.geocities.com/SoHo/Village/6263/>
E-mail: [log in to unmask]
=========================================================================
Date: Thu, 10 Jun 1999 06:24:51 +0200
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Hans van der Genugten <[log in to unmask]>
Subject: Re: 5-HT receptor
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit
-----Oorspronkelijk bericht-----
Van: J. R. Bruman <[log in to unmask]>
Aan: [log in to unmask] <[log in to unmask]>
Datum: donderdag 10 juni 1999 5:46
Onderwerp: Re: pallidotomy
>> to find out what is a 5-HT receptor. <<
5-HT = 5-hydroxytryptamine = serotonin
So I suppose its one of the serotonin--receptors.
Hans.
=========================================================================
Date: Thu, 10 Jun 1999 00:27:58 EDT
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: KEn Becker <[log in to unmask]>
Subject: Re: Non pd
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Bob, most of the cartridges can be refilled at home with a kit and ink that
they sell in most places that sell the original factory filled carts. It can
be a big saving, IF you take care not to drip the ink on anything of value,.
I also saw a system that keeps the head and adds a liner that is prefilled. I
don't know if that is available for all printers.
Ken B
=========================================================================
Date: Wed, 9 Jun 1999 22:19:34 -0700
Reply-To: [log in to unmask]
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: "Ronald F. Vetter" <[log in to unmask]>
Organization: retiree - volunteer
Subject: 5-HT receptor
Comments: To: [log in to unmask]
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
http://www.wpic.pitt.edu/ocd/ryan/sld005.htm
will show a slide graphic of subject
--
Ron Vetter 1936, '84 PD dz
[log in to unmask]
http://www.ridgecrest.ca.us/~rfvetter
=========================================================================
Date: Thu, 10 Jun 1999 01:15:54 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: judith richards <[log in to unmask]>
Organization: @Home Network
Subject: News-New Drugs Blamed in 'Sleep Attacks'
MIME-Version: 1.0
Content-Type: text/plain; charset=iso-8859-1
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June 9, 1999
New Drugs Blamed in 'Sleep Attacks'
By LAURAN NEERGAARD AP Medical Writer
WASHINGTON (AP) - Two new drugs for Parkinson's disease may suddenly put
patients to sleep, a dangerous narcolepsy-like side effect termed
``sleep attack'' that has caused at least eight people to have car
wrecks, doctors warned Wednesday.
The Food and Drug Administration is talking with the manufacturers about
whether the drugs need additional warning labels.
Dr. Steven Frucht of Columbia-Presbyterian Medical Center in New York,
who reported the eight cases in the journal Neurology, said Parkinson's
patients should not overreact to the warning and stop taking the drugs,
which can be very helpful at treating Parkinson's symptoms.
``You have to discuss this possibility frankly with patients before
starting this medication,'' advised Frucht, who still prescribes the
medicines. Patients, he added, should talk with their doctors whether
they feel sedated or ever have suffered a sleep attack.
Eight men taking the drug Mirapex, known chemically as pramipexole,
suffered sleep attacks while driving that resulted in accidents,
although none of the patients was injured, Frucht reports.
Four also experienced sleep attacks during business meetings and phone
calls.
Six stopped taking Mirapex and two others reduced the dose, and the
sleep attacks stopped.
But one former Mirapex patient then switched to a second Parkinson's
drug called Requip, known chemically as ropinirole, and suffered another
sleep attack while driving.
The effect appears rare: Over 100,000 Americans take these drugs, and
the FDA said it knew of no additional cases.
But ``unless you ask, many patients won't report this,'' Frucht said.
When the FDA approved Mirapex and Requip in 1997, it noted on the drugs'
labels that they occasionally cause somnolence, and thus driving is not
a good idea until the patient has taken the medicines long enough to
tell if they are susceptible.
But somnolence - that drowsy feeling that even over-the-counter drugs
like antihistamines often cause - is very different from a sleep attack,
said Frucht, describing the attacks as overwhelming and irresistible
sleepiness that comes on without warning.
How long a patient must take the drugs to see if they will be affected
is questionable, he added. Frucht noted that the eight patients who had
car wrecks had taken the medicines anywhere from one month to 14 months
before the sleep attack.
``A sleep attack is for all intents and purposes meaningless if you're
sitting in front of the TV,'' Frucht said. ``But they're driving on the
highway. The next thing they knew they'd hit the car next to them, or
the passenger screamed at them that they're going off the road.''
Frucht and colleagues at three Parkinson's centers alerted the drugs'
manufacturers - Pharmacia & UpJohn for Mirapex and SmithKline Beecham
for Requip - to the eight patients they treated.
Pharmacia & UpJohn said it is investigating whether patients just were
drowsy from the drugs and driving made it worse, or if they indeed
experienced the abrupt attack Frucht described. If so, the next question
is whether patients took additional medications that interacted to cause
the sleep attack.
Between 500,000 and 1.5 million Americans have Parkinson's, which causes
progressive muscle rigidity, tremors and difficulty moving as they
slowly lose a vital brain chemical called dopamine. Mirapex and Requip
work by mimicking dopamine.
Copyright Š 1999 The Associated Press.
--
Judith Richards, London, Ontario, Canada
<[log in to unmask]>
^^^
\ /
\ | / Todays Research
\\ | // ...Tomorrows Cure
\ | /
\|/
```````
=========================================================================
Date: Thu, 10 Jun 1999 00:57:58 -0500
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Linda Warrenburg <[log in to unmask]>
Subject: Re: Non pd -- Ink Cartridges
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit
: KEn wrote--
>Bob, most of the cartridges can be refilled at home with a kit and ink that
>they sell in most places that sell the original factory filled carts. It
can
>be a big saving.
Ken,
There is one problem. I use to refill the ink cartridges myself on my old
printer. But when I had to replace it, I started buying new ones again.
The warrantee on the printer is only good if you use new cartridges. If
something happens that they think was caused by a refilled cartridge, your
warrantee is null and void. So...I'm waiting until my warrantee is up and
then I'm going back to filling them myself and save money, because it is a
substantial savings.
Linda W. cg for Ben 69/5
[log in to unmask]
=========================================================================
Date: Thu, 10 Jun 1999 03:20:06 EDT
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Clare Wilson <[log in to unmask]>
Subject: Billie Graham on TV
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Hi all. Did anyone see Billie Graham on TV tonight? A family member did,
and reported to me that he did not appear to be very inconvenienced or
handicapped by PD. Would like to hear from other PWP folks and their
reactions to his appearance. It had been my impression that he was not
in 'early stages' but I have not seen him for myself.
Clare Wilson
=========================================================================
Date: Thu, 10 Jun 1999 01:10:04 -0700
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Bob Chapman <[log in to unmask]>
Subject: Re: Billy Graham on TV
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I suppose you are referring to Reverend Graham being interviewed by Katie
Curic of the TODAY show. I saw that interview and it appeared he was
attempting to cover up PD Symptoms and that he well may be in a state of
denial of having PD at all.
Bob Chapman
Clare Wilson wrote:
>
> Hi all. Did anyone see Billie Graham on TV tonight? A family member did,
> and reported to me that he did not appear to be very inconvenienced or
> handicapped by PD. Would like to hear from other PWP folks and their
> reactions to his appearance. It had been my impression that he was not
> in 'early stages' but I have not seen him for myself.
> Clare Wilson
=========================================================================
Date: Thu, 10 Jun 1999 04:48:39 EDT
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Clare Wilson <[log in to unmask]>
Subject: Re: Billy Graham on TV
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Bob Chapman: thanks for your reply. My family member conveyed to
me the impression that I might adapt Rev. Graham's positive attitude and
perhaps my symptoms wouldn't be so troublesome. To consider him
to be in denial about his disease is difficult to imagine, but certainly
possible.
Clare Wilson
=========================================================================
Date: Thu, 10 Jun 1999 07:10:52 EDT
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Bonnie Rowley <[log in to unmask]>
Subject: WEB CRAMMING
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Good morning all,
On the preview for Good Morning America, one of the topics will be Web
Cramming - adding charges to your phone bill. UGH!
=========================================================================
Date: Thu, 10 Jun 1999 07:53:08 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Bob Anibal <[log in to unmask]>
Subject: Re: Billy Graham on TV
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Gee, as I said in my message while watching Rev. Graham he didn't seem to
have any visible indicatons of PD - seemed to have it "under control" If he
was covering up he was very successful. I thought he looked quite grand.
Bob Anibal
-----Original Message-----
From: Bob Chapman <[log in to unmask]>
To: [log in to unmask] <[log in to unmask]>
Date: Thursday, June 10, 1999 4:16 AM
Subject: Re: Billy Graham on TV
>I suppose you are referring to Reverend Graham being interviewed by Katie
>Curic of the TODAY show. I saw that interview and it appeared he was
>attempting to cover up PD Symptoms and that he well may be in a state of
>denial of having PD at all.
>
>Bob Chapman
>Clare Wilson wrote:
>>
>> Hi all. Did anyone see Billie Graham on TV tonight? A family member
did,
>> and reported to me that he did not appear to be very inconvenienced or
>> handicapped by PD. Would like to hear from other PWP folks and their
>> reactions to his appearance. It had been my impression that he was not
>> in 'early stages' but I have not seen him for myself.
>> Clare Wilson
=========================================================================
Date: Thu, 10 Jun 1999 09:20:09 -0700
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Don McKinley <[log in to unmask]>
Subject: PARKINSON,SLEEP ATTACKS
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JUDITH,S story on sleep attacks was in our paper. thanks JUDITH i won,t have
to type it out. as have said i would never say what meds i took. well i was
on all strong. but before any thing happened i was taken off. a bad mood
change in me. am now having very bad legs cramps. i don,t know if meds as i
forget to take my night meds. all so it is a hoax about a extra charge for
email. FCC is not going to charge for it. i am now fighting depression. get
over crying. VIVIAN checks list first now for a while. so much i don,t
under stand now. and seem to me lot are finding lot of what is said is
wrong. could be ok.
I.Y.Q. DON AND VIVIAN
LOVE OF MY LIFE-54
BEST MEDS FOR PD IS
LOOK TO LIST FOR HELP
[log in to unmask]
http://www2.wcoil.com/~flash
=========================================================================
Date: Thu, 10 Jun 1999 09:24:47 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: janet paterson <[log in to unmask]>
Subject: Re: PARKINSON,SLEEP ATTACKS
In-Reply-To: <[log in to unmask]>
Mime-Version: 1.0
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At 09:20 1999/06/10 -0700, you wrote:
>JUDITH,S story on sleep attacks was in our paper. thanks JUDITH i won,t have
>to type it out. as have said i would never say what meds i took. well i was
>on all strong. but before any thing happened i was taken off. a bad mood
>change in me. am now having very bad legs cramps. i don,t know if meds as i
>forget to take my night meds. all so it is a hoax about a extra charge for
>email. FCC is not going to charge for it. i am now fighting depression. get
>over crying. VIVIAN checks list first now for a while. so much i don,t
>under stand now. and seem to me lot are finding lot of what is said is
>wrong. could be ok.
>
> I.Y.Q. DON AND VIVIAN
> LOVE OF MY LIFE-54
>
> BEST MEDS FOR PD IS
> LOOK TO LIST FOR HELP
>
> [log in to unmask]
> http://www2.wcoil.com/~flash
hi cyber-dad
bad leg cramps not good for mr. don
only good for mr. pd
mr. pd will make you angry
but mr. don is in charge of tears
that's how he lets you know he's working on the problem
tears are good
you understand lots
mr. pd is the one telling you otherwise
tell him to go play in the traffic
love
sis
janet paterson
52 now / 41 dx / 37 onset
Postal: PO Box 171, Almonte, Ontario, K0A 1A0, Canada
WebUrl: <http://www.geocities.com/SoHo/Village/6263/>
E-mail: [log in to unmask]
=========================================================================
Date: Thu, 10 Jun 1999 10:03:12 EDT
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: William Heitman <[log in to unmask]>
Subject: Re: All dreams must end.
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In a message dated 5/30/99 12:22:24 AM Central Daylight Time,
[log in to unmask] writes:
<<
DON'T GIVE UP, m'dear!
>>
Barb,
You're right, it takes persistence.
After a couple of trials which gave me the idea they had no clue (for
instance, they told me I could go back and fly airplanes for a living. -not
required to do heavy lifting-a sit down job), and other equally goofy stuff,
I finally prevailed on a judge. I believe he started the day convinced I was
a fraud. The day started with a good on session. Then he witnessed me going
from on to dyskinetic to dead "off" before his very eyes.
I asked a recess to get over it but he carried on with my bride. I missed a
dose by 15 minutes and didn't make it back on until the proceedings were
finished
If ya don't educate em, you can't get the goodies. Fortunately, ignorance is
fixable
Regards,
WHH 55/38/37
=========================================================================
Date: Thu, 10 Jun 1999 10:06:18 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Karen deGraaf <[log in to unmask]>
Subject: Re: PARKINSN Digest - 9 Jun 1999 - Special issue (#1999-360)
In-Reply-To: <[log in to unmask]>
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
For a different kind of hero Thank you Janet
The site:
<http://www.geocities.com/SoHo/Village/6263/pienet/joestory/index.html>
is strong and compelling. I appreciate your efforts.
We have some big hurdles to overcome but together we WILL do it.
Any future words on what was investigated and found will obviously be
appreciated.
-Karen deGraaf
~~~~~~~~~~~~~~~~~~~~~email [log in to unmask]
=========================================================================
Date: Thu, 10 Jun 1999 10:27:10 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: janet paterson <[log in to unmask]>
Subject: Re: PARKINSN Digest / a different kind of hero
Comments: cc: [log in to unmask]
In-Reply-To: <[log in to unmask]>
Mime-Version: 1.0
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hi all
At 10:06 1999/06/10 -0400, karen wrote:
>For a different kind of hero Thank you Janet
>The site:
><http://www.geocities.com/SoHo/Village/6263/pienet/joestory/index.html>
>is strong and compelling. I appreciate your efforts.
>
>We have some big hurdles to overcome but together we WILL do it.
>Any future words on what was investigated and found will obviously
>be appreciated.
>
>-Karen deGraaf
>~email [log in to unmask]
thank you for those kind words, karen
i do intend to update the 'thread' of joe's story
as we learn more
janet
janet paterson
52 now / 41 dx / 37 onset
Postal: PO Box 171, Almonte, Ontario, K0A 1A0, Canada
WebUrl: <http://www.geocities.com/SoHo/Village/6263/>
E-mail: [log in to unmask]
=========================================================================
Date: Thu, 10 Jun 1999 11:07:02 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Camilla Flintermann <[log in to unmask]>
Subject: Re: Billie Graham on TV
In-Reply-To: <[log in to unmask]>
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
>Hi all. Did anyone see Billie Graham on TV tonight? A family member did,
>and reported to me that he did not appear to be very inconvenienced or
>handicapped by PD. Would like to hear from other PWP folks and their
>reactions to his appearance. It had been my impression that he was not
>in 'early stages' but I have not seen him for myself.
>Clare Wilson
I did not see Billy Graham, but saw a report of his "crusade" in the paper.
It said he had some trouble with voice, but managed well on the
whole---adding that he had a lot of help before and after the appearance.
Perhaps, like many PWPs, he can "mobilize" himself while on center stage,
and pays for it afterwards? I would think that for him it must be
stressful---and also for Janet Reno, who was shaking visibly in a recent TV
news clip. We've heard of B.G's having PD for a good many years, though
they wouldn't discuss it--I doubt he is in early stages.
Camilla Flintermann, CG for Peter 81/70/55
Oxford, Ohio
http://www.newcountry.nu/pd/members/camilla/one.htm
<[log in to unmask]>
"Ask me about the CARE list for
Caregivers of Parkinsonians ! "
=========================================================================
Date: Thu, 10 Jun 1999 11:38:29 EDT
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: "Callie M. Judd" <[log in to unmask]>
Subject: Re: Tremor drug??????
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Dear Joao: We have not tried Mirapex yet - mostly because we had started on
Bromocriptine and are reluctant to switch meds around too fast , so we're
still
evaluating the benefit of Bromo and studying Mirapex too. Our neuro says
he'll pre-
scribe Mirapex anytime we want it, but won't say much about what it does help.
A while back Brian Collins conducted a survey gathering info about
agonists of
all kinds and a lot of people responded that were on Mirapex. Perhaps when
he
gives us the results of his survey you can check with several Mirapex users
to see
what they say about tremors specifically in their experience. I'll be
interested in
whether Mirapex is a good tremor controller, since I hope to have my husband
off
of the Cogentin this month, and may elect to give Mirapex a try later this
year.
Let's keep in touch - maybe we can figure out the best course of
meds......
Marie
=========================================================================
Date: Thu, 10 Jun 1999 11:26:31 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Jane Koenig <[log in to unmask]>
Subject: Re: News-New Drugs Blamed in 'Sleep Attacks'
In-Reply-To: <[log in to unmask]>
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
At 01:15 AM 6/10/99 -0400, you wrote:
>June 9, 1999
>
>New Drugs Blamed in 'Sleep Attacks'
This was actually reported on my 11pm local TV news last night! Must have
been a slow news day for them.
Jane Koenig
Marietta, GA
=========================================================================
Date: Thu, 10 Jun 1999 12:03:23 EDT
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: "Callie M. Judd" <[log in to unmask]>
Subject: Re: Tremor drug?????? Searching on..........
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Dear Brian: Thanks for the detailed info about Sinimet. I will certainly
study it
thoroughly and hopefully come up with some clues about what will work best
for
Judd against the chronic dyskinesia he is now plagued more with. There are
so
many darned variables to this formula it really can drive a person to
craziness! but
information as you provide can make the process feel so much more hopeful.....
The main change we are attempting right now is to remove the
Cogentin from
his mix altogether, since he has been on it for over l2 years and is down to
lmg/day.
Am I right in my perceptions that "tremor" is distinctly different from
"dyskinsia"?
The "pill rolling tremor " he has had since day one, and the Cogentin has
always
effectively eliminated it from being a problem- but about four years ago he
started
experiencing a "rolling" in his legs and jaw that seems to be a dyskinesia I
finally
found out (on our own, as usual) could be a result of long term Sinimet
usage. He
had been on Sinimet st for about 7 yrs when it first showed up and the Neuro
in
Arkansas agreed to prescribe Sinimet CR for him (at our inquiry about it).
He's been on CR for about 4 years now but the intermittent episodes are
gradually being
more of a problem to him so we requested an agonist which is how we got the
Bromocriptine prescribed. We're up to 20mg/day now and things aren't
changing
much. Perhaps we do need to "fine tune" the Sinimet but I've been reluctant
to do
too much changing too fast. Any suggestions anyone can give will be greatly
appreciated since few definitive answers ever come from the Dr. and the last
time
we saw him he put our appointment interval to a six month rather than a 3
month
time so we don't see him until Aug. again.
The last reduction we tried of Sinimet (to 600mg/day) resulted in
what we
think was a sever episode of dystonia. So we keep muddling on........
By the way, I hope I told Joao, in Brazil, right , that you had done
the survey
on Agonists a while back? I'm subject to remember wrong and things are so
"busy" around here lately, I didn't take time to research it before I said
it.......I want
to interact with the list more, but been lurking mostly lately, and staying
behind.....
Thanks -
Marie in Texas
=========================================================================
Date: Thu, 10 Jun 1999 00:00:44 -0700
Reply-To: [log in to unmask]
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Walter Ervin <[log in to unmask]>
Subject: Re: Ivan/Dystonia
Comments: To: Ivan M Suzman <[log in to unmask]>
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Hello again Ivan,
Just wanted to let you know that since I made the changes you suggested
I have had more on time in the past 24 hours than in the past two
weeks. Its amazing! and I can't believe my good fortune.
Specifically, all I have tried so far is:
I kept my schedule the same, EXCEPT:
1. I added a 25/100 CR at 5pm yesterday, and was on for the rest of the
evening, until I went to bed. (Very unusual and almost never happens.)
2. I added a 25/100 CR at 8am this morning, and am now 'on' and have
been for several hours. You have to remember, I haven't been having ANY
morning on time, so this is truly wonderful. I have even done several
chores which have been on my 'to do' list but have been too much for
me. I am typing with two hands! and am actually glad to be alive.
I have had no signs of dystonia, so all those times I thought I was over
medicated, I was actually under medicated, as you suspected.
I can't thank you enough for your interest and taking your time to share
your knowledge.
Good luck with your concerts,
Walter
Walter Ervin wrote:
>
> Hello Ivan,
>
> Thanks for your concern and detailed reply. I just now found it because
> my ISP does funny things with incoming messages. I was looking for your
> reply forward (from the last message), when in fact the isp put it back
> under the subject thread. I only found it by accident today, since I
> typically run a couple of hundred messages behind. I think you are
> right on all counts. ..wme
>
> Ivan M Suzman wrote:
> >
> > Hi Walter,
> >
> > I think what we are discussing has great general value. If you wish to
> > quote anypart of our conversation and post to the whole List, that would
> > be OK with me.
>
> I agree, and am copying to the list. ..wme
>
>
> > I have hosted a bass section rehearsal today, and am a little overtired.
> > So please forgive me for spelling errors and murky phrases. I'll do the
> > best I can.
> >
> > I want to find out more about the dystonia that you have. I think it is
> > very unusual for Sinemet CR to cause dystonia. By dystonia, I am
> > referring to hard, tight, painful, cramped muscles, especially the toe
> > muscles, causing them to flex underneath the foot and not let go.
>
> You have described my arm pain - "hard, tight, painful, cramped
> muscles," My wife can even find the knots in my arm. When I am in this
> state, by feet are not in pain unless I try to walk on them, but walking
> causes pain. When I am 'on', I can walk without pain in my feet. So, I
> was ASSUMING that my feet are also in dystonia. However, no curling
> under or pain unless I try to walk. ..wme
>
> > This is always (as opposed to sometimes) a sign that I need more
> > medication. It occurs either if my nighttime meds at 3:45AM are not
> > working, or if my meds during the day are
> > blocked by food, especially high-protein food, or if I am late in taking
> > a dose, so that my dopamine level dropped down too low.. It can last 10
> > minutes to 2 hours.
>
> I'm beginning to agree with you, but the food thing really causes me
> problems. There is a history of hypoglycemia in our family, and if I
> don't eat I feel terribly weak. I HAVE to start the day with orange
> juice to even begin to walk. Funny thing though; if I start with OJ and
> exercise (which also raises blood sugar level), I can do without any
> meds for at least 2 hours. Then I have to eat and the food blocks the
> meds and I can get no on time until after lunch. ANY protein at all
> kill meds too. ..wme
>
> > If I am either too cold, underprotected from cool or cold air, or
> > overtired, dystonia is more likely. Also if my sugar level is too low.
>
> Same here, but I didn't know the blood sugar level affected it also.
> ..wme
>
> > With Sinemet CR being more slowly absorbed, it is not as effective in
> > stopping dystonia as regular Sinemet, which absorbs quickly. I use them
> > together. Regular Sinemet is like first gear and CR like a 3rd gear for
> > highway driving.
> >
> > What I am thinking is that the CR may have been paratially blocked, and
> > that your dystonia was NOT due to CR, but rather to protein or food
> > blockage.
>
> I hope you are right, and I am going to try the CR again, only this time
> try your schedule as much as possible. However, the CR I have is
> 50/200, and as far as I know, I can only break in two (25/100).
> Question: When do you eat and how do you avoid protein? It seems
> protein is in everything. Is there any difference between ANIMAL
> protein, and vegtable protein (ie beans and rice in combo)? ..wme
>
> > Maybe the CR never got a chance to work.
> >
> > Also, Walter, did you try it with or without regular Sinemet?
>
> Both ways. However, I have had too many variables to contend with. I
> had continued to exercise with light weights until recently, but now
> think that the weights were contributing to the arm pain. So I cut them
> out too. ..wme
>
> > If you take only regular Sinemet, you could crash off it, go into
> > dystonia due to low dopamine, and never have long on-periods. If the CR
> > was blocked, the low-dopamine dystonia would appear CONCOMITANTLY and you
> > could think that this was being caused by the CR that actually was
> > swallowed, but not getting into your system.
>
> Exactly. You don't know how many times I have complained to my wife,
> "if I only had a gague to tell me if I'm over or under medicated"!
> Another reason I think you are right, is when I took the CR the pain
> would usually start within 10 or 15 minutes. And from what you are
> saying, that is too soon for overmedication.
>
> > I take EXACTLY what you do, except that I take two more doses of my
> > Sinemet- Sinemet CR combo, at bedtime and at about 3:45. I do like your
> > overall medication pattern, except that there is nothing to get you
> > through the night.
> >
> > So the next step is for you to tell me about your use of CR. If you took
> > it with regular SInemet, it would either cause DYSKINESIA if there was
> > too much in your system from the two medications combined, or smooth,
> > longer on-periods, if it worked well.
>
> I tried only briefly with regular simemet, had a lot of pain so
> discontinued. I don't think I have ever had dyskinesia. ..wme
>
> > If it caused dystonia, I would be surprised. I just want to be sure that
> > it wasn't dystonia due to levodopa not getting through the blood-brain
> > barrier, not converting to dopamine there.This would be the more likely
> > cause of DYSTONIA.
> >
> > Do you think that the CR could have been taken without adequate
> > absorption? Did you take it 30 minutes BEFORE eating? Do you do that
> > NOW with the regular Sinemet?
>
> Not being absorbed is a very real possibility. I'm trying to allow 30 -
> 45 minutes before eating, and an hour after eating. ..wme
>
> > My schedule , not the best, but as good as I can manage, is
> >
> > Sinemet (3/4 or 1/2 of a 25/100): 6:45AM, 9:30, 12:15PM, 3:15, 6:15PM,
> > 9:15, 12:15AM
> > , 3:45
> > Sinemet CR (3/4 or 1/2 of a 25/100 CR) same as regular Sinemet
> > Eldepryl (1/2 of 1 5mg tablet) 6:45 AM, 9:30 AM
> > Tasmar (1/2 of a 100 mg pill) 9:30AM, 12:15 PM, 6:15 PM, 12:15 AM
> >
> > Good wishes for a better day tomorrow. Look forward to hearing from you.
> >
> > God Bless
> >
> > Ivan :-)
>
> Thanks Ivan.
> Another question. How does Tasmar fit in? i.e. How would you adjust
> your schedule if you didn't have Tasmar? One BIG variable that I can't
> control is stress. Even small amounts of stress cause me to go off, and
> then I find myself asking, "is it the meds schedule or the stress"?
>
> Due to the length of this, I am not sending the previous notes. I am
> also changing the subject so my isp won't 'hide' the note from me.
>
> Walter
> PS I don't get to spend as much time as I would like to to keep up with
> this list, and am usually behind. If you copy me on [log in to unmask] I
> will find your reply a lot faster, as I get very few messages there.
=========================================================================
Date: Thu, 10 Jun 1999 13:46:46 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Bonnie Cunningham <[log in to unmask]>
Subject: Young Onset Support Groups
MIME-Version: 1.0
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Dear List Members:=20
Two of our new satellite centers within the state of Florida are in the =
planning stages of forming support groups for young PWP. If you would =
like to join such a group and live near one of the centers, please give =
them a call. =20
Fort Lauderdale: Carol Eickhorn (954) 202-1274 and West Palm Beach: =
Sharon Metz (561) 882-9137.=20
Sincerely,=20
Bonnie Cunningham
NPF
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<DIV><FONT face=3DArial>Dear List Members: </FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial>Two of our new satellite centers within the =
state of=20
Florida are in the planning stages of forming support groups for =
young=20
PWP. If you would like to join such a group and live near one of =
the=20
centers, please give them a call. </FONT></DIV>
<DIV><FONT face=3DArial>Fort Lauderdale: Carol Eickhorn (954) =
202-1274 and=20
West Palm Beach: Sharon Metz (561) 882-9137. </FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial>Sincerely, </FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial>Bonnie Cunningham</FONT></DIV>
<DIV><FONT face=3DArial>NPF</FONT></DIV>
<DIV> </DIV>
<DIV> </DIV></BODY></HTML>
------=_NextPart_000_0059_01BEB347.AF25E9E0--
=========================================================================
Date: Fri, 11 Jun 1999 01:56:07 +0800
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Dennis Greene <[log in to unmask]>
Subject: Re: Billy Graham on TV/possibilities
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
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I did not see Billy Graham on TV but it sounds to me as if there are 3
possibilities-
1. his progression is slow and his symptoms so mild that he really is 'in
control'.
(Note - seems unlikely)
2. He experiences the "On/Off" syndrome and was having a good "On".
(Note - in this case he could appear 'normal'; he could even walk about
the set/stage quite freely)
(Note 2 - his 'Off' condition could well be severe)
3. he is a B Type PWP i.e. one whose main symptoms are bradykinesia and
rigidity.
(Note - I too am a B-type, now in my 13th year. I am very used to
having people seeing me "off"[and in a bad way] and remarking how well - and
controlled - I look. Its a familiar story to us B- Types - no tremor = no
PD)
(Note 2 - if this is the case the Rev. Graham probably sat quietly,
appeared calm,moved very little and positioned himself with his head and
body both lined up on the interviewer. If standing he probably used a
podium - and held onto it with both hands. His bility to speak could fall
anywhere across a wide range)
I hope it's #1 - but i doubt it.
Dennis.
+++++++++++++++++++++++++++
Dennis Greene 49/dx 37/ onset 32
There's nothing wrong with me that a cure for PD won't fix!
[log in to unmask]
http://members.networx.net.au/~dennisg/
+++++++++++++++++++++++++++
=========================================================================
Date: Thu, 10 Jun 1999 11:20:04 -0700
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Joan Ruuska <[log in to unmask]>
Subject: B Graham and "leaning"
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Hi PD listers,
I usually lurk but want to report that I saw Billy
Graham on the Today show earlier this week. He was
asked by Katie about his Parkinsons and he said he was
much better due to new medication. At this point he
extended his arms and indicated that they weren't
shaking. He said he had limited his appearances over
the past year but recently had completed a five day
speaking/preaching engagement and showed a clip from
it. He was more interested in mentioning his work for
the Lord than his PD.
When I recently visited my brother who has PD, he
mentioned that in his "off" state, not only does he
lean forward in a hunch, something like a question
mark in appearance, but he was starting to list to the
right. Have any of you noticed a definite lean to one
side or the other while off? My brother is on Sinemet
and Mirapex during the day and Sinemet CR at night.
He has had all the blood work done and will be
starting the new drug, whose name escapes at the
moment, for which he must initially have his blood
tested every two weeks. He is hoping that this will
reduce the sudden and seemingly random off/on periods.
Although he lives in way, way upstate NY (I fly to
Ottawa when I visit), he currently sees Dr. Wolf, a
movement disorder specialist in Boston.
Joan
===
Joan Ruuska
[log in to unmask]
_________________________________________________________
Do You Yahoo!?
Get your free @yahoo.com address at http://mail.yahoo.com
=========================================================================
Date: Thu, 10 Jun 1999 13:24:58 -0500
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Nita Andres <[log in to unmask]>
Subject: Re: Billy Graham on TV/possibilities
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
I think Rev. Graham has late onset type B PD. So does my husband and even out
physician friends don't seem aware that he has PD. His neurologist told me that
it (late onset - in general) progressed more slowly.
However, I once saw B. Graham have to hold on to the podium and accept help to
walk to a chair.
For what it is worth. Nita
Dennis Greene wrote:
> I did not see Billy Graham on TV but it sounds to me as if there are 3
> possibilities-
>
> 1. his progression is slow and his symptoms so mild that he really is 'in
> control'.
> (Note - seems unlikely)
>
> 2. He experiences the "On/Off" syndrome and was having a good "On".
> (Note - in this case he could appear 'normal'; he could even walk about
> the set/stage quite freely)
> (Note 2 - his 'Off' condition could well be severe)
>
> 3. he is a B Type PWP i.e. one whose main symptoms are bradykinesia and
> rigidity.
> (Note - I too am a B-type, now in my 13th year. I am very used to
> having people seeing me "off"[and in a bad way] and remarking how well - and
> controlled - I look. Its a familiar story to us B- Types - no tremor = no
> PD)
> (Note 2 - if this is the case the Rev. Graham probably sat quietly,
> appeared calm,moved very little and positioned himself with his head and
> body both lined up on the interviewer. If standing he probably used a
> podium - and held onto it with both hands. His bility to speak could fall
> anywhere across a wide range)
>
> I hope it's #1 - but i doubt it.
>
> Dennis.
>
> +++++++++++++++++++++++++++
> Dennis Greene 49/dx 37/ onset 32
> There's nothing wrong with me that a cure for PD won't fix!
> [log in to unmask]
> http://members.networx.net.au/~dennisg/
> +++++++++++++++++++++++++++
=========================================================================
Date: Thu, 10 Jun 1999 10:06:50 -0300
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Joao Paulo Carvalho <[log in to unmask]>
Subject: Re: Tremor drug??????
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
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Hi Brian ,
I believe that you probably as it is said that " hit the nail right in the head"
.... :-)
I have read frequently that levodopa is not very effective in the control of
tremors . Would you like to comment on it ? ( as I am one that appreciate yours
comments)
Regards ,
Brian Collins wrote:
> On Wed 09 Jun, Callie M. Judd wrote:
> > having some problem with dyskinesia so we hoped to reduce the Sinimet by
> > taking
> > Bromocriptine too - but so far no luck on any reduction-
> > We've tried three times before to remove the final 1 mg. Cogentin
> > since we
> > feel it contributes to his difficulties with constipation and hallucinations
> > - but the
> > tremors have always been under good control. We are now in the process of
> > trying to reduce the Cogentin gradually enough to discontinue it but we
> > aren't sure
> > if the Sinimet & Bromocriptine will keep the tremors away. We will be keeping
> > track if his ongoing but mild hallucinations leave him as we reduce the
> > Cogentin,
> > (we don't know for sure that the hallucinations aren't caused by the Sinimet
> > or the
> > Bromo - but the Neuro says the Cogentin is not supposed to be doing him any
> > good anymore) The reduction will take about 3-4 weeks - will let you know
> > the
> > results - if he has to stay on it, it will be a good bet that nothing else
> > he's used
> > does well against tremor. Any other Cogentin users out there having
> > "withdrawel"
> > difficulties - using it for tremor reduction?........
> Marie, I think you have missed the main culprit: The cause of your husbands'
> dyskinesia is the Sinemet CR. The vital parameter in takng Sinemet is the
> rate of flow of levadopa. Here are some typical values:
>
> Quantity l-dopa Duration Rate of flow
>
> Ordinary Sinemet plus 100mg 2 hrs 50
>
> Sinemet CR 200mg 4 hrs 50
>
> Sinemet LS 50 2 hrs 25
>
> You will see that the popular tabs give the same rate of flow. You need
> a certain rate of flow to make up for the missing dopamine cells output.
> I will quote my figures, but yours will probably be in the same general
> area. My 'bottom line' rate of flow is 37.5mg per hr. Below that value,
> I get 'Offs' - above it I get Dyskinesias. Keep in mind that you have
> no control over the timescale: all you can do is vary the size of the
> dose.
>
> The next point is that you cannot influence the l-dopa-caused dyskinesias
> by juggling Cogentin or anything else except l-dopa. You must get the
> Sinemet right first, then worry about the rest.--
+----| Joao Paulo de Carvalho |------ +
| [log in to unmask] |
+--------| Salvador-Bahia-Brazil |------+
=========================================================================
Date: Thu, 10 Jun 1999 14:54:51 -0700
Reply-To: [log in to unmask]
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: "J. R. Bruman" <[log in to unmask]>
Subject: 5-HT
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
5-HT 10 Jun 99
First, a generic but sincere "thank you" to the numerous friends
who answered my inquiry so quickly. Not least because my own PC
skills and resources are so limited. I did find out that 5-HT is
5-hydroxytryptamine, or serotonin. One of many neurotransmitters
in the CNS, serotonin has a variety of profound effects on such
things as sleep cycle, bulimia, behavior and mood. And the path
that led me to this odd little subject was so rambling I'm not
sure I can untangle it, but the reason for all my searching and
reading about PD is to find bits of practical lore that will help
to maintain the best quality of life, for me and others with PD.
Like many people, I'm very fond of chocolate. In fact, you might
say I'm a freak for chocolate. My relatives know this, and when
my daughter visited last weekend, she brought a pound or more of
assorted chocolate goodies. And three days after she went home,
it was all finished! Something I've noticed but can't quite
confirm is that when I eat a lot of chocolate, the effects of my
periodic Sinemet dose seem slower and shorter in duration. Now
the dopamine from Sinemet definitely raises spirits in me and
others, because it reaches certain receptors called "pleasure
centers" in the brain, I believe in the hippocampus. And I read
somewhere that some component of chocolate, as well as alcohol,
nicotine, cocaine, and other things good or bad, also is taken
up by "pleasure" receptors in the brain. In fact that is the
general explanation for all kinds of substance addiction.
Now what about the *movement* control centers, such as the
pallidum and striatum, which are the main targets of the
dopamine from our PD medication? Could it be that the "pleasure"
component of chocolate competes with dopamine for access to
those movement receptors? Is such a relation already described
in the scientific literature? It would certainly be interesting,
but no way am I giving up chocolate. I'd only make sure to take
the dose of PD meds first, and THEN pig out on the candy! Cheers,
Joe
--
J. R. Bruman (818) 789-3694
3527 Cody Road
Sherman Oaks, CA 91403-5013
=========================================================================
Date: Thu, 10 Jun 1999 16:29:38 -0600
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: "Kathrynne Holden, MS,RD" <[log in to unmask]>
Organization: Five Star Living, Inc.
Subject: Re: 5-HT
Comments: To: [log in to unmask]
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
"J. R. Bruman" wrote:
> Something I've noticed but can't quite
> confirm is that when I eat a lot of chocolate, the effects of my
> periodic Sinemet dose seem slower and shorter in duration.
> Now what about the *movement* control centers, such as the
> pallidum and striatum, which are the main targets of the
> dopamine from our PD medication? Could it be that the "pleasure"
> component of chocolate competes with dopamine for access to
> those movement receptors?
Could be, but it's also possible that a large amount of chocolate, which
is very high in fat, takes a long time to clear the stomach. If you take
a Sinemet an hour or so after the chocolate, it could mix with the
chocolate and be delayed in reaching the small intestine. This would
result in the slowed and shorter Sinemet effects.
> but no way am I giving up chocolate. I'd only make sure to take
> the dose of PD meds first, and THEN pig out on the candy!
My sentiments exactly!! Chocolate is a MAJOR food group!!
Best,
Kathrynne
--
Kathrynne Holden, MS, RD
Medical nutrition therapy
Author: "Eat well, stay well with Parkinson's disease"
"Parkinson's disease: assessing and managing unique nutrition needs"
http://www.nutritionucanlivewith.com/
=========================================================================
Date: Thu, 10 Jun 1999 19:35:04 EDT
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: KEn Becker <[log in to unmask]>
Subject: Re: Non pd -- Ink Cartridges
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
I know you are correct, Linda, but most printers live through the warranty
period and THEN die, or get sick! You can get a new printer for the price of
5-8 cartridges, right? Also it is almost impossible to get a printer
repaired, at least for a reasonable price, and in a quick turnaround time.
Most places want about $100 just to get started checking it, and I hate to
say it, but probably most of them will not get fixed when you hear the price!
Many devices are being made these days that are not
considered repairable! To get around the warranty problem, why not keep an
original factory filled cartridge on hand, and if problems arise, just clean
up the area where the cartridge goes, put it in and try it. If it does not
correct the problem, I would assume that the refilled cart. did not cause the
problem, so they should be happy to honor the warranty!
Ken B
=========================================================================
Date: Thu, 10 Jun 1999 17:42:03 -0600
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Nancy Burnham <[log in to unmask]>
Subject: Mayo Clinic study
MIME-Version: 1.0
Content-Type: text/plain; charset="x-user-defined"
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Thought this was interesting. Nancy B cg for Don 65/16
Parkinsonism prevalence:
A Mayo Clinic study has found that parkinsonism is three times more common
than was previously thought. The study, published in the journal Neurology,
also showed that men develop parkinsonism more frequently than women.
"Parkinsonism is not a disease itself; rather it describes a group of
diseases that present with similar symptoms," says James H. Bower, M.D., a
Mayo Clinic neurologist and the study's lead investigator. Dr. Bower says
that, previously, Parkinson's disease was believed to be the most common
cause of parkinsonism. However, the study found that Parkinson's disease
accounted for only 42 percent of all cases. For more on Parkinson's disease,
see:
"Parkinson's disease - Treating a mysterious condition"
http://www.mayohealth.org/mayo/9602/htm/parkinso.htm
=========================================================================
Date: Thu, 10 Jun 1999 19:49:31 -0400
Reply-To: Parkinson's Information Exchange <PARKINSN@LISTSERV.UTORONTO.CA>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Hilary Blue <[log in to unmask]>
Subject: Re: vascular parkinsonism
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
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>
> Last night I attended an informative and very interesting talk by Dr
> Lynda Sigmund, my neuro, and the consulting neurologist to our suppport group..
> This has become an annual event = her talk on what's happening in the world
> of PDD medications. But, more to the point, she mentioned'vascular parkinson's".
> She used the term in a discussion on the difference between Parkinson's Disease, and Parkinsonism, the latter being PD symptoms caused by something other than PD. She gave 'vascular parkinsonism' as an example - saying that it was a series of strokes (vascular incidents) in the regions of the brain where dopamine is produced or utilised (eg substantia nigra or basal ganglion) so that these regions are impaired, and unable to do their normal dopamine thing, and thus cause symptoms of PD.
I may be a bit fuzzy on the exact details but essentially that is what she said.
I dont know exactly how that ties in with what has been being said on the
list, as I have not been folooing very closely, but I thought I'd pass on
this tidbit of information.
Hilary Blue
=========================================================================
Date: Thu, 10 Jun 1999 20:20:16 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Bob Anibal <[log in to unmask]>
Subject: Re: Non pd -- Ink Cartridges
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit
In June issue of PCWorld there is an article about refilling cartridges. The
lady in the article buys ink by the pint. The article mentions warranty "
Some companies have led cusdtomers to believe that using refill kits will
void printer warranties, but Hewlett Packard, Epson and other vendors with
whom we spoke say that simply isn't true. A company may legally charge for
any printer repairs caused by a leaky refilled cartridges, but IT MUST HONOR
THE WARRANTY FOR OTHER TYPES OF REPAIRS" ( Caps mine )
Th article mentions a company - Repeat- o-Type that promises to repair
yopur printer if it's damaged by one of its products. I have cut the
article out of the magazine and will send copies to anyone who wishes to
verify my quotes etc. Just send a stamped self addressed envelope
'Nuff said?
Bob Anibal
-----Original Message-----
From: KEn Becker <[log in to unmask]>
To: [log in to unmask] <[log in to unmask]>
Date: Thursday, June 10, 1999 7:42 PM
Subject: Re: Non pd -- Ink Cartridges
>I know you are correct, Linda, but most printers live through the warranty
>period and THEN die, or get sick! You can get a new printer for the price
of
>5-8 cartridges, right? Also it is almost impossible to get a printer
>repaired, at least for a reasonable price, and in a quick turnaround time.
>Most places want about $100 just to get started checking it, and I hate to
>say it, but probably most of them will not get fixed when you hear the
price!
> Many devices are being made these days that are not
>considered repairable! To get around the warranty problem, why not keep an
>original factory filled cartridge on hand, and if problems arise, just
clean
>up the area where the cartridge goes, put it in and try it. If it does not
>correct the problem, I would assume that the refilled cart. did not cause
the
>problem, so they should be happy to honor the warranty!
>Ken B
=========================================================================
Date: Thu, 10 Jun 1999 19:52:11 -0500
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: "Charles T. Meyer, M.D." <[log in to unmask]>
Subject: Dyskinesia and STN
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Recently I have been running into problems with severe dyskinesia even
without meds (except requip) as my STN Stimulator has been turned up.
Has anyone else with STN experienced this or has anybody experienced
dyskinesia without meds being involved in some way. I have had to turn
off the stimulator twice since it was turned up yesterday to get
comfortable? I presume this is a withdrawal from the requip ( I have
taken only about 1000 mg total of Sinemet since I had the stimulator
turned on at the end of May!!!) I Have a call into my doc (neurology). I
have talked to the neurosurgeon and he feels it is part of a withdrawal
from sinemet or Requip.?
Since this STN is so new I am looking for anyone who has gone through
this and gotten to the other side (or not) as the case may be.
Thanks,
--
******************************************************************************************
Charles T. Meyer, M.D.
Middleton (Madison), Wisconsin
[log in to unmask]
******************************************************************************************
=========================================================================
Date: Thu, 10 Jun 1999 20:45:01 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: janet paterson <[log in to unmask]>
Subject: latest barometric figures / including one tom riess
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
hi all
a couple of weeks ago i sent in this message to y'all:
> hi all
>
> a couple of years ago
> i discovered the goldmine which is pubmed
> a source of over 9,000,000 published medical studies/abstracts
>
> if i did a general search way back when
> for "parkinson"-related abstracts added in the prior "30 days",
> i usually found 30 - 40 - 50 abstracts
>
> yesterday i found 143
>
> this is not a one-shot deal
> it is part of a trend which has been getting 'worse' each month
>
> over the next little while
> i will post a few of those abstracts which caught my eye
> for my usual reasons:
> 1. in order to share them with you
> and
> 2. in order to get them into our archives
>
> eventually, and gradually,
> i plan on posting the ones i find most interesting
> [and which may pertain to recent cyber-"threads"]
> in the "medical abstracts" section of
> the "my PIEnet words" section of
> my web site "a new voice"
>
> in the meantime
> keep your eyeballs peeled
>
> JAnet of PIEnet
for some odd reason or other
i felt the urge to go digging at pubmed again tonight
and lo and behold,
the barometric reading is now up to 153!
and not only that
but i found a few more quite interesting abstracts which i will post
and not only that
but i found a very interesting abstract by one of our cyber-family!
tom riess himself!
[of blue glasses, striped carpets, and 'funny walks' fame]
congratulations tom!
keep those ocular orbs on alert for imminent in-coming pub-med-missiles
JAnet of PIEnet
janet paterson
52 now / 41 dx / 37 onset
Postal: PO Box 171, Almonte, Ontario, K0A 1A0, Canada
WebUrl: <http://www.geocities.com/SoHo/Village/6263/>
E-mail: [log in to unmask]
=========================================================================
Date: Thu, 10 Jun 1999 21:06:46 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: janet paterson <[log in to unmask]>
Subject: PMID: 10350920: Gait and PD: a conceptual model for an
augmented-reality based therapeutic device.
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Gait and Parkinson's disease:
a conceptual model for an augmented-reality based therapeutic device.
This chapter presents an augmented-reality based therapeutic device
designed to overcome gait problems associated with Parkinson's Disease (PD).
A normal model of gait is proposed followed by a model of Parkinsonian gait
with the goal of construction of a gait enabling therapeutic device.
The fundamental underlying tenet of the model is that vision pathology is
responsible for the majority of Parkinsonian gait pathology.
The basis for such a claim is the well documented phenomenon known as
Kinesia Paradoxa, whereby in the presence of certain so-called visual cues
a PD subject can be transformed from a totally immobile, helpless victim of
this disease into a near normal walking individual.
Several gait-enabling devices are also described.
Stud Health Technol Inform 1998;58:200-8
Riess TJ
PMID: 10350920, UI: 99183550
http://www.ncbi.nlm.nih.gov/
janet paterson
52 now / 41 dx / 37 onset
Postal: PO Box 171, Almonte, Ontario, K0A 1A0, Canada
WebUrl: <http://www.geocities.com/SoHo/Village/6263/>
E-mail: [log in to unmask]
=========================================================================
Date: Thu, 10 Jun 1999 21:07:15 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: janet paterson <[log in to unmask]>
Subject: PMID: 10360765: ABT-431, new D1 receptor agonist,
may surpass levodopa
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
ABT-431, a D1 receptor agonist prodrug, has efficacy in Parkinson's disease.
Studies in animal models show a selective D1 receptor agonist with full
functional efficacy compared with dopamine to have antiparkinsonian
efficacy of similar magnitude to levodopa, without the same propensity for
inducing dyskinesia.
To date, no such agent has been tested in humans.
ABT-431 is the prodrug of A-86929, a full, selective D1 receptor agonist.
Subjects (n = 14) with levodopa-responsive Parkinson's disease received
five doses of ABT-431 (5, 10, 20, 30, and 40 mg) and one of placebo after a
12-hour levodopa holiday.
Response was assessed by using the Unified Parkinson's Disease Rating Scale
motor subsection.
Dyskinesia was separately graded.
ABT-431 showed efficacy significantly superior to placebo at doses of 10 mg
and more, and of similar magnitude to that seen with levodopa.
Dyskinesia was reduced in several patients after receiving ABT-431.
There were no serious adverse events, the most common minor events being
nausea and emesis, dizziness, and hypotension.
Assuming that ABT-431 is not transformed in humans into an unknown active
D2 metabolite, and remains selective for D1 receptors, it is the first
dopamine D1 receptor agonist to demonstrate a full antiparkinsonian effect
in patients with Parkinson's disease.
These preliminary findings also suggest that it may exhibit a reduced
tendency to provoke dyskinesia.
The emergence of a well-tolerated D1 agonist should allow for the
development of a better understanding of the relation between motor
efficacy and dyskinesia in Parkinson's disease.
Ann Neurol 1999 Jun;45(6):736-41
Rascol O, Blin O, Thalamas C, Descombes S, Soubrouillard C, Azulay P,
Fabre N, Viallet F, Lafnitzegger K, Wright S, Carter JH, Nutt JG
Clinical Investigation Centre, Department of Pharmacology, INSERM U455,
University Hospital, Toulouse, France.
PMID: 10360765, UI: 99287510
http://www.ncbi.nlm.nih.gov/
janet paterson
52 now / 41 dx / 37 onset
Postal: PO Box 171, Almonte, Ontario, K0A 1A0, Canada
WebUrl: <http://www.geocities.com/SoHo/Village/6263/>
E-mail: [log in to unmask]
=========================================================================
Date: Thu, 10 Jun 1999 21:41:56 -0400
Reply-To: [log in to unmask]
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Michel Margosis <[log in to unmask]>
Subject: TV
Comments: To: PARKLISTE <[log in to unmask]>
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
I just found out that public television will be showing Dr. Morabito
and his great Dane aide Victor. Check your locality on internet:
www.petpartofthefamily.com as a new 13 part series on pets
hosted by Gary Burhoff (Radar in Mash).
In the Washington DC area this will be shown on WETA
channel 26 on Saturday 19 June 1999 at 6:00 PM.
=========================================================================
Date: Fri, 11 Jun 1999 03:43:23 +0200
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Hans van der Genugten <[log in to unmask]>
Subject: Re: Dyskinesia and STN
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit
-----Oorspronkelijk bericht-----
Van: Charles T. Meyer, M.D. <[log in to unmask]>
Aan: [log in to unmask] <[log in to unmask]>
Datum: vrijdag 11 juni 1999 2:57
Onderwerp: Dyskinesia and STN
Hi Charlie,
>> severe dyskinesia even without meds (except requip) <<
Agonists can NOT cause dyskinesia, l-dopa can.
To fast withdrawal of l-dopa can also give dyskinesia.
How much requip did you use before the STN?
How much now?
How much Sinemet before the STN?
How much now?
>> as my STN Stimulator has been turned up. <<
Both sides?
And how much of which meds are you told to take less for compensation?
>> I presume this is a withdrawal from the requip <<
NO. That would cause IMO cramps and OFF.
>> ( I have taken only about 1000 mg total of Sinemet <<
A day, I presume?
>> he feels it is part of a withdrawal from sinemet or Requip.? <<
Sinemet.
Or still too much Sinemet compared with the too high upturned stimulator.
Hans.
=========================================================================
Date: Fri, 11 Jun 1999 03:58:44 +0200
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Hans van der Genugten <[log in to unmask]>
Subject: Re: TV
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit
-----Oorspronkelijk bericht-----
Van: Michel Margosis <[log in to unmask]>
Aan: [log in to unmask] <[log in to unmask]>
Datum: vrijdag 11 juni 1999 3:42
Onderwerp: TV
The correct URL:
www.petspartofthefamily.com
Hans.
=========================================================================
Date: Thu, 10 Jun 1999 22:11:40 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Ivan M Suzman <[log in to unmask]>
Subject: Re: vascular parkinsonism
MIME-Version: 1.0
Content-Type: text/plain
Content-Transfer-Encoding: 7bit
On Wed, 9 Jun 1999 23:30:58 -0500 Phil Tompkins <[log in to unmask]>
writes, in part:
>Barb_MSN asked:
>
>> ... the heart is a muscle .... Does anyone KNOW if the heart CAN be
>> affected by PD?
>
>Very interesting question -- if PD affects movement, what about
>heart muscle contractions?
>
>Hormones such as epinephrine and signals via nerves connected to the
>autonomic nervous system modify the basic heartbeat,
>Phil Tompkins
>Hoboken NJ
>age 61/dx 1990
Hi Phil,
Epinephrine is produced from norepinephrine, which in turn is produced
from
dopamine. If the dopamine supply is abnormal, do you think this could in
turn
change the autonomic nervous signalling to the sino-atrial node of the
heart?
Ivan
^^^^^^ WARM GREETINGS FROM ^^^^^^^^^^^^ :-)
Ivan Suzman 49/39/36 [log in to unmask] :-)
Portland, Maine land of lighthouses deg. F :-)
********************************************************************
=========================================================================
Date: Fri, 11 Jun 1999 04:21:37 +0200
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Hans van der Genugten <[log in to unmask]>
Subject: PMID: 10356065 The clinical spectrum of varying subthalamic
nucleus activity.
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit
Brain 1999 Jun;122(Pt 6):1133-1146
From off-period dystonia to peak-dose chorea: The clinical spectrum of
varying subthalamic nucleus activity.
Krack P, Pollak P, Limousin P, Benazzouz A, Deuschl G, Benabid AL
Department of Clinical and Biological Neurosciences, Joseph Fourier
University, Grenoble, France, Neurology Department, Christian Albrecht
Universitat, Kiel, Germany and MRC Human Movement and Balance Unit, Queen
Square, London, UK.
The effect of chronic bilateral high-frequency stimulation of the
subthalamic nucleus (STN) on levodopa-induced dyskinaesias was investigated
in eight patients with fluctuating Parkinson's disease complicated by
functionally disabling off-period dystonia. All of the patients also had
severe diphasic and peak-dose chorea, so that it was possible to study the
effect of high-frequency stimulation on the different types of
levodopa-induced dyskinaesias. Off-period fixed dystonia was reduced by 90%
and off-period pain by 66%. After acute levodopa challenge, high-frequency
stimulation of the STN reduced diphasic mobile dystonia by 50% and peak-dose
choreic dyskinaesias by 30%. The effect of bilateral high-frequency
stimulation of the STN on the Unified Parkinson's Disease Rating Scale motor
score had the same magnitude as the preoperative effect of levodopa. This
allowed the levodopa dose to be reduced by 47%. The combination of reduced
medication and continuous high-frequency stimulation of the STN reduced the
duration of on-period diphasic and peak-dose dyskinaesias by 52% and the
intensity by 68%. Acute high-frequency stimulation of the STN mimics an
acute levodopa challenge, concerning both parkinsonism and dyskinaesias, and
suppresses off-period dystonia. Increasing the voltage can induce repetitive
dystonic dyskinaesias, mimicking diphasic levodopa-induced dyskinaesias. A
further increase in voltage leads to a shift from a diphasic-pattern
dystonia to a peak-dose pattern choreodystonia. Chronic high-frequency
stimulation of the STN also mimics the benefit of levodopa on parkinsonism
and improves all kinds of levodopa-induced dyskinaesias to varying degrees.
Off-period dystonia, associated with neuronal hyperactivity in the STN is
directly affected by stimulation and disappears immediately. The effect of
chronic high-frequency stimulation of the STN on diphasic and peak-dose
dyskinaesias is more complex and is related directly to the functional
inhibition of the STN and indirectly to the replacement of the pulsatile
dopaminergic stimulation by continuous functional inhibition of the STN.
Chronic high-frequency stimulation of the STN allows a very gradual increase
in stimulation parameters with increasing beneficial effect on parkinsonism
while reducing the threshold for the elicitation of stimulation-induced
dyskinaesias. In parallel with improvement of parkinsonism, the levodopa
dose can be gradually decreased. As diphasic dystonic dyskinaesias are
improved to a greater degree than peak-dose dyskinaesias, both direct and
indirect mechanisms may be involved. Peak-dose choreatic dyskinaesias,
associated with little evidence of parkinsonism and thus with low neuronal
activity in the STN, are improved, mostly indirectly. Fixed off-period
dystonia, mobile diphasic dystonia and peak-dose choreodystonia seem to
represent a continuous clinical spectrum reflecting a continuous spectrum of
underlying activity patterns of STN neurons.
PMID: 10356065
----------------------------------------------------------------------------
----
=========================================================================
Date: Fri, 11 Jun 1999 04:26:41 +0200
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Hans van der Genugten <[log in to unmask]>
Subject: PMID: 10356064 Sequential bilateral transplantation in
Parkinson's disease: Effects of the second graft.
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
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Brain 1999 Jun;122(Pt 6):1121-1132
Sequential bilateral transplantation in Parkinson's disease: Effects of the
second graft.
Hagell P, Schrag A, Piccini P, Jahanshahi M, Brown R, Rehncrona S, Widner H,
Brundin P, Rothwell JC, Odin P, Wenning GK, Morrish P, Gustavii B, Bjorklund
A, Brooks DJ, Marsden CD, Quinn NP, Lindvall O
Division of Neurology and Division of Neurosurgery, Department of Clinical
Neuroscience and Department of Obstetrics and Gynaecology, University
Hospital and Division of Neurobiology, Department of Physiology and
Neuroscience, University of Lund, Lund, Sweden and University Department of
Clinical Neurology and MRC Human Movement and Balance Unit, Institute of
Neurology, National Hospital for Neurology and Neurosurgery and MRC
Cyclotron Unit, Hammersmith Hospital, London, UK.
Five parkinsonian patients who had received implants of human embryonic
mesencephalic tissue unilaterally in the striatum 10-56 months earlier were
grafted with tissue from four to eight donors into the putamen (four
patients) or the putamen plus the caudate nucleus (one patient) on the other
side, and were followed for 18-24 months. After 12-18 months, PET showed a
mean 85% increase in 6-L-[18F]fluorodopa uptake in the putamen with the
second graft, whereas there was no significant further change in the
previously transplanted putamen. Two patients exhibited marked additional
improvements after their second graft: 'on-off' fluctuations virtually
disappeared, movement speed increased, and L-dopa could be withdrawn in one
patient and reduced by 70% in the other. The improvement in one patient was
moderate. Two patients with atypical features, who responded poorly to the
first graft, worsened following the second transplantation. These findings
indicate that sequential transplantation in patients does not compromise the
survival and function of either the first or the second graft. Moreover,
putamen grafts that restore fluorodopa uptake to normal levels can give
improvements of major therapeutic value.
PMID: 10356064
----------------------------------------------------------------------------
----
=========================================================================
Date: Fri, 11 Jun 1999 10:34:54 +0800
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Dennis Greene <[log in to unmask]>
Subject: Re: Dyskinesia and STN
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit
> Agonists can NOT cause dyskinesia, l-dopa can.
Hans,
Whilst what you say is correct it does not give the full picture.
Dyskinesia can be and is affected by agonists. My speculation is that the
presence of the agonist reduces the need for levodopa, hence a dose which
was right becomes an overdose and dyskinesia results.
In recent years I have had more success at controlling dyskinesia by
adjusting the level of my agonist intake than by adjusting sinemet.
Dennis.
+++++++++++++++++++++++++++
Dennis Greene 49/dx 37/ onset 32
There's nothing wrong with me that a cure for PD won't fix!
[log in to unmask]
http://members.networx.net.au/~dennisg/
+++++++++++++++++++++++++++
=========================================================================
Date: Thu, 10 Jun 1999 19:54:44 -0700
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Gordon Seese <[log in to unmask]>
Subject: Re: Tremor drug?????? Searching on..........
In-Reply-To: <[log in to unmask]>
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
At 12:03 PM 6/10/99 EDT, you wrote:
>Dear Brian: Thanks for the detailed info about Sinimet. I will certainly
>study it
>thoroughly and hopefully come up with some clues about what will work best
>for
>Judd against the chronic dyskinesia he is now plagued more with. There are
>so
>many darned variables to this formula it really can drive a person to
>craziness! but
>information as you provide can make the process feel so much more
hopeful.....
> The main change we are attempting right now is to remove the
>Cogentin from
>his mix altogether, since he has been on it for over l2 years and is down to
>lmg/day.
>Am I right in my perceptions that "tremor" is distinctly different from
>"dyskinsia"?
>The "pill rolling tremor " he has had since day one, and the Cogentin has
>always
>effectively eliminated it from being a problem- but about four years ago he
>started
>experiencing a "rolling" in his legs and jaw that seems to be a dyskinesia I
>finally
>found out (on our own, as usual) could be a result of long term Sinimet
>usage. He
>had been on Sinimet st for about 7 yrs when it first showed up and the Neuro
>in
>Arkansas agreed to prescribe Sinimet CR for him (at our inquiry about it).
>He's been on CR for about 4 years now but the intermittent episodes are
>gradually being
>more of a problem to him so we requested an agonist which is how we got the
>Bromocriptine prescribed. We're up to 20mg/day now and things aren't
>changing
>much. Perhaps we do need to "fine tune" the Sinimet but I've been reluctant
>to do
>too much changing too fast. Any suggestions anyone can give will be greatly
>appreciated since few definitive answers ever come from the Dr. and the last
>time
>we saw him he put our appointment interval to a six month rather than a 3
>month
>time so we don't see him until Aug. again.
> The last reduction we tried of Sinimet (to 600mg/day) resulted in
>what we
>think was a sever episode of dystonia. So we keep muddling on........
> By the way, I hope I told Joao, in Brazil, right , that you had done
>the survey
>on Agonists a while back? I'm subject to remember wrong and things are so
>"busy" around here lately, I didn't take time to research it before I said
>it.......I want
>to interact with the list more, but been lurking mostly lately, and staying
>behind.....
> Thanks -
> Marie in Texas
>
> Marie; Gordon has used Sinemet for 20 years and I agree, we've seen them
all.However, our good Doctor has an idea. We alternate 25/200 with 10/100
during the day. I think it helped. Dr. was thinking of less carbidopa.
Also, from the Oregon Medical School's Dr. John Nutt was the idea of a
Tums when you take each dose. Tums enhances medications. Two friends who
are RN'' recalled that from their studies and hadn't thought of it since,
said oone.
Regards, Thea Lou Seese CG Gordon 71/21
=========================================================================
Date: Thu, 10 Jun 1999 22:25:25 -0500
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: J Finch <[log in to unmask]>
Subject: A real worm!
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
This one is very real, so watch out fot it. A virus
that will destroy your hard drive. Once again, NEVER
open an email attachment with a .exe on the end. NEVER.
More information can be found at:
http://www.sarc.com/avcenter/venc/data/worm.explore.zip.html
You will be doing yourself a big favor by reading about
it and, if you already opened it, there is a
description of how to remove it. It "might" come in the
form of an email such as:
Hi Receipient Name!
I received your email and I shall send you a reply
ASAP.
Till then, take a look at the attached zipped docs.
bye or sincerely Receipient Name
Your name and the senders' name are copied from your
address book.
------------------------------------
Worm.ExploreZip contains a very malicious payload.
Worm.ExploreZip utilizes
Microsoft Outlook, Outlook
Express, and Microsoft Exchange to mail itself out
by replying to unread messages in
your Inbox. The payload of the worm will
destroy any file with the
extension .h, .c, .cpp, .asm, .doc, .ppt, or .xls on
your
hard drive(s), as well as any
mapped drives, each time it is executed. The worm
will also search the mapped drives
for Windows installations and copy itself to
the Windows directory, and then
modify the WIN.INI file. This will infect
systems without e-mail clients.
This continues to occur until the worm is
removed.
You may receive this worm as a
file attachment named "zipped_files.exe".
When run, this executable will
copy itself to your Windows System directory
with the filename "Explore.exe",
or your Windows directory with the filename
"_setup.exe". The worm modifies
your WIN.INI or registry such that the
"Explore.exe" or "_setup.exe" file
is executed each time you start Windows.
Worm.ExploreZip was first
discovered in Israel and submitted to the Symantec
AntiVirus Research Center on June
6, 1999.
--
Help us save the horses! Habitat for Horses, Inc.
A lifetime home for abused, endangered horses.
http://www.habitatforhorses.org/
=========================================================================
Date: Thu, 10 Jun 1999 22:35:55 -0500
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Nita Andres <[log in to unmask]>
Subject: Re: A real worm!
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
My son , computer scientist says the same thing. Never open a .exe post
-- not ever.
Thanks, I will update my virus catcher (I hope ) now. Nita
J Finch wrote:
> This one is very real, so watch out fot it. A virus
> that will destroy your hard drive. Once again, NEVER
> open an email attachment with a .exe on the end. NEVER.
>
> More information can be found at:
> http://www.sarc.com/avcenter/venc/data/worm.explore.zip.html
> You will be doing yourself a big favor by reading about
> it and, if you already opened it, there is a
> description of how to remove it. It "might" come in the
> form of an email such as:
>
> Hi Receipient Name!
>
> I received your email and I shall send you a reply
> ASAP.
>
> Till then, take a look at the attached zipped docs.
>
> bye or sincerely Receipient Name
>
> Your name and the senders' name are copied from your
> address book.
>
> ------------------------------------
> Worm.ExploreZip contains a very malicious payload.
> Worm.ExploreZip utilizes
> Microsoft Outlook, Outlook
> Express, and Microsoft Exchange to mail itself out
> by replying to unread messages in
> your Inbox. The payload of the worm will
> destroy any file with the
> extension .h, .c, .cpp, .asm, .doc, .ppt, or .xls on
> your
> hard drive(s), as well as any
> mapped drives, each time it is executed. The worm
> will also search the mapped drives
> for Windows installations and copy itself to
> the Windows directory, and then
> modify the WIN.INI file. This will infect
> systems without e-mail clients.
> This continues to occur until the worm is
> removed.
>
> You may receive this worm as a
> file attachment named "zipped_files.exe".
> When run, this executable will
> copy itself to your Windows System directory
> with the filename "Explore.exe",
> or your Windows directory with the filename
> "_setup.exe". The worm modifies
> your WIN.INI or registry such that the
> "Explore.exe" or "_setup.exe" file
> is executed each time you start Windows.
>
> Worm.ExploreZip was first
> discovered in Israel and submitted to the Symantec
> AntiVirus Research Center on June
> 6, 1999.
> --
> Help us save the horses! Habitat for Horses, Inc.
> A lifetime home for abused, endangered horses.
> http://www.habitatforhorses.org/
=========================================================================
Date: Thu, 10 Jun 1999 22:18:42 -0500
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Kathy Kunz <[log in to unmask]>
Subject: Re: B Graham and "leaning"
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit
Joan asked about "leaners" and I'm one. Get's so bad on rare occasions that
I fall out of the chair. Daughter noticed the lean on a visit home and went
out and bought us matching chairs for our office, complete with lumbar
support (for Don's back) and 4 other settings for assorted problems---also
has arms to keep me from tumbling over the side. What a difference!
Kathy Kunz
-----Original Message-----
From: Joan Ruuska <[log in to unmask]>
To: [log in to unmask] <[log in to unmask]>
Date: Thursday, June 10, 1999 1:32 PM
Subject: B Graham and "leaning"
SNIP
I recently visited my brother who has PD, he
>mentioned that in his "off" state, not only does he
>lean forward in a hunch, something like a question
>mark in appearance, but he was starting to list to the
>right. Have any of you noticed a definite lean to one
>side or the other while off? My brother is on Sinemet
>and Mirapex during the day and Sinemet CR at night.
>He has had all the blood work done and will be
>starting the new drug, whose name escapes at the
>moment, for which he must initially have his blood
>tested every two weeks. He is hoping that this will
>reduce the sudden and seemingly random off/on periods.
>
>Although he lives in way, way upstate NY (I fly to
>Ottawa when I visit), he currently sees Dr. Wolf, a
>movement disorder specialist in Boston.
>
>Joan
>===
>
>Joan Ruuska
>[log in to unmask]
>_________________________________________________________
>Do You Yahoo!?
>Get your free @yahoo.com address at http://mail.yahoo.com
>
=========================================================================
Date: Thu, 10 Jun 1999 21:04:07 -0700
Reply-To: [log in to unmask]
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Murray Charters <[log in to unmask]>
Subject: Re: pallidotomy & good dictionary
Comments: cc: [log in to unmask]
In-Reply-To: <[log in to unmask]>
MIME-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7BIT
Hi janet, Joe, Kathrynne, Cynthia.......
> Joe, there are some pretty good websites that offer definitions of
> medical terms. One is InteliHealth:
> http://www.intelihealth.com/IH/ihtIH?t=9276&p=~br,IHC|~st,408|~r,EMIHC000|~b,*|
> Another is multilingual -- pick your language:
> Multilingual Glossary of technical and popular medical terms in nine
> European Languages
> http://allserv.rug.ac.be/~rvdstich/eugloss/welcome.html
> Kathrynne
> > Cynthia Shook wrote:
> > > >>pallidotomy
> > > I think I'm going to need a medical dictionary. Can someone please enlighten me on this term also.
And of course......... you could try janet's cyber wwwinnebago.....
hop on in (its a homey welcome warm kinda ride) at:
http://www.geocities.com/SoHo/Village/6263/
'n click on to the PIEnet 'n click on the links
at healthlinks: medical resources on the wwweb you will find:
"The Online Medical Dictionary"
and if you back out 'n click on reference links: general resources
on the wwweb you can find One Look Dictionaries (search over 400
dictionaries in one step!) and A Web of Online Dictionaries (an
index of over 800 online dictionaries in over 160 languages -
including Trekkie)
Don't get sidetracked in the Ben 'n Jerries link!!
All the best ............. Murray
[log in to unmask]
=========================================================================
Date: Fri, 11 Jun 1999 04:25:04 +0000
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Reuben Isberg <[log in to unmask]>
Subject: UNSUBSCRIBE
Comments: cc: [log in to unmask]
I will re-subscribe with another E-mail address.
Thank you, Al Isberg
=========================================================================
Date: Thu, 10 Jun 1999 21:16:34 -0700
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: JaneRoss <[log in to unmask]>
Subject: Re: Dyskinesia and STN
In-Reply-To: <[log in to unmask]>
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Charles,
I have had some light dyskinesia from time to time which seemed unrelated
to my surgery and couldn't be related to Sinemet because I quit taking it a
year and a half ago.
Now I'm having multiple problems with mirapex even though I only take 1mg
twice a day.
I continue to be one sided due to my dead battery but hope to get some
answers next weekend when I am up there for training to become a peer
counselor for the surgery at OHSU.
Wish I could be of more help to you as you find youe way .
Sounds like you may have to wide of a setting but I'm not a Dr. or a
professional. If you find the cause please let me know.
TIP: Do you know how to tell wheither you are turned on or not? Use an AM
radio set at the lowest frecrency below 540 and put it next to your
stimulator and you will hear a static sound.
jjjane
http://www.geocities.com/soho/village/6263/pienet/people/hithross.html
=========================================================================
Date: Fri, 11 Jun 1999 01:46:45 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: janet paterson <[log in to unmask]>
Subject: "a new voice" one month later
Comments: cc: barb patterson <[log in to unmask]>
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
hi all
[including and especially barb p. our list 'mom']
i can't believe it's been a month since telling you about my website
but... times flies when... one is unpacking...!
in nerdese, the site has had 1000 'hits' since my announcement
i have no idea what that 'means' in terms of volume on the web
and i don't think it matters
except
that each 'hit' means that a cyber-sibling has dropped by
and that in and of itself
means a lot to me
i think this list is a miracle of its time
but it's hard to describe what happens here to an 'outsider'
i've included those aspects of 'us' which i think are most important
i am open to suggestions in that regard
since pd is the reason
i got sent back to 'school' to do some more 'larnin'
and
since pd is the reason
i found barb's list
and
since pd is the reason
i am being paid to 'just breathe' by the gummint of ontario canada
i had to smack my forehead one day and say
aha, i get it now!
so till i get further instructions
i consider this my full time job
i can't think of a greater bunch of people to work with
JAnet of PIEnet
ps
i was 'baby-sitting' you lot all day and no one even noticed!
hah!
back to you, barb!
janet paterson
52 now / 41 dx / 37 onset
Postal: PO Box 171, Almonte, Ontario, K0A 1A0, Canada
WebUrl: <http://www.geocities.com/SoHo/Village/6263/>
E-mail: [log in to unmask]
=========================================================================
Date: Fri, 11 Jun 1999 02:09:55 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: janet paterson <[log in to unmask]>
Subject: PMID: 10349504: Therapy of behavioral disorders in PD
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Therapy of behavioral disorders in Parkinson's disease.
Behavioral disturbances in Parkinson's disease (PD) are a common source of
disability to both patients and their families, but there is a considerable
controversy regarding their frequency and their neuropathological and
neurochemical bases.
Since they are so common, the disorders associated with PD should be well
recognized, and proper management by neurologists is required.
The most frequent behavioral disturbances encountered in patients with PD
are depression, anxiety, cognitive impairment and dementia.
Also frequent are sleep disorders such as sleep fragmentation, REM sleep
behavior disorder, insomnia and altered dreaming.
The most troublesome situations come from drug-induced psychiatric states,
such as delusional states, hallucinations, paranoid ideation, delirium, and
confusion.
The treatment of these behaviors is reviewed here.
Biomed Pharmacother 1999 Apr;53(3):149-53
Valldeoriola F, Molinuevo J
Neurology Service,
Hospital Clinic Universitari, University of Barcelona, SPAIN
PMID: 10349504, UI: 99279121
http://www.ncbi.nlm.nih.gov/
janet paterson
52 now / 41 dx / 37 onset
PO Box 171 Almonte Ontario K0A 1A0 Canada
a new voice http://www.geocities.com/SoHo/Village/6263/
[log in to unmask]
=========================================================================
Date: Fri, 11 Jun 1999 02:09:46 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: janet paterson <[log in to unmask]>
Subject: PMID: 10350403: Accuracy of diagnosis in patients with presumed PD
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Accuracy of diagnosis in patients with presumed Parkinson's disease.
OBJECTIVES: to study the diagnostic accuracy for parkinsonism and
Parkinson's disease in a community-based sample of subjects on
anti-parkinsonian medication.
METHODS: computerized prescribing records in general practice were used to
create a community-based disease register for Parkinson's disease. Subjects
were examined to establish the likely diagnosis using recommended clinical
diagnostic criteria.
RESULTS: of 402 cases, parkinsonism was confirmed in 74% and clinically
probable Parkinson's disease in 53%. The commonest causes of misdiagnosis
were essential tremor, Alzheimer's disease and vascular
pseudo-parkinsonism. Over one-quarter of subjects did not benefit from
anti-parkinsonian medication.
CONCLUSIONS: there is difficulty in diagnosing parkinsonism and Parkinson's
disease in elderly subjects and we suggest early referral of those
suspected of having parkinsonism for specialist assessment.
Age Ageing 1999 Mar;28(2):99-102
Meara J, Bhowmick BK, Hobson P
University Department of Geriatric Medicine,
Glan Clwyd Hospital, Rhyl, North Wales, UNITED KINGDOM
PMID: 10350403, UI: 99277906
http://www.ncbi.nlm.nih.gov/
janet paterson
52 now / 41 dx / 37 onset
PO Box 171 Almonte Ontario K0A 1A0 Canada
a new voice http://www.geocities.com/SoHo/Village/6263/
[log in to unmask]
=========================================================================
Date: Fri, 11 Jun 1999 02:09:38 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: janet paterson <[log in to unmask]>
Subject: PMID: 10352867: Management of PD: a review of current and new
therapies.
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Management of Parkinson's disease:
a review of current and new therapies.
The management of Parkinson's disease has undergone recent changes with the
advent of new therapies, both pharmacotherapy and surgery. Available
interventions are discussed.
Levodopa remains the mainstay of therapy. New drugs include the dopamine
agonists and COMT inhibitors.
New dopamine agonists which may have a levodopa "sparing effect;" it has
been suggested that some of the drugs should be considered as first line
treatments for newly diagnosed Parkinson's disease patients. We review
roles of these drugs.
The concept of neuroprotection in neurodegenerative disorders such as
Parkinson's disease became popular in the mid 1980s and it is hoped that
eventually therapy will be directed at slowing progression of the disease.
A great deal more work needs to be done before a suitable agent is
identified as being neuroprotective. Potential neuroprotective agents are
reviewed.
Surgical therapies for Parkinson's disease consisting of various forms of
lesion surgery as well as stimulation procedures are reviewed.
Complications of drug therapy include motor problems such as motor response
fluctuations, as well as psychiatric complications including
levodopa-induced psychosis.
Atypical neuroleptic agents and ECT for psychiatric syndromes associated
with Parkinson's disease are discussed.
Algorithms for the management of early disease as well as the management of
psychosis in Parkinson's disease are included.
Treatment options for advanced disease are tabulated.
Can J Neurol Sci 1999 May;26(2):89-103
Mendis T, Suchowersky O, Lang A, Gauthier S
University of Ottawa, Ottawa Civic Hospital, SCO Hospitals, Ontario, CANADA
PMID: 10352867, UI: 99281133
http://www.ncbi.nlm.nih.gov/
janet paterson
52 now / 41 dx / 37 onset
PO Box 171 Almonte Ontario K0A 1A0 Canada
a new voice http://www.geocities.com/SoHo/Village/6263/
[log in to unmask]
=========================================================================
Date: Fri, 11 Jun 1999 02:33:42 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Hilary Blue <[log in to unmask]>
Subject: putting on weight
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Porky Porkinson the Parkinson Pig has a weight problem! The poor fellow has
put on so much weight he can barely drag himself around. ANd now he gets tired
so easily. WE went last night to the monthly meeting of our support group. As
expected there was a large turnout - Dr SIgmund, founder of the group, and
very popular neurologist in the capital area was giving her lecture on what's
new in Parkinson's medication - plus a pretty thorough description of what is
PD and what are the latest theories and hopes for a cure etc. At the start, it
was still a bit light to show slides , so Porky grabbed the opportunity to
take center stage. ANd then he went on a tour of all the tables. By the time
he completed the circuit and came back to me he was groanig in discomfort. I
don't know which is worse, he said - th ose metallic coins leave an awful
taste, but those folded dollars make my throat dry .
"porky", i admonished him. " That's the price of fame - if you are going to be
popular and collect lots of PENNIES FOR PARKINSON'Syoundromegoing to fill up."
"i know" he sniffed, "but that doesn't mean I'm going to be comfortable with it"
I couldn't believe my ears. After all that enthusiasm, al''l I washearing now
was complaints. ANd th en another, slightly paler, softer pink face appeared.
IT was Porquetta. Give Porky a break, she said. Next time, I'll go out with
you, and he can stay home and grumble.
Hilary Blue (on behalf of Porky Porkinson Parkinson' Pig}
=========================================================================
Date: Thu, 10 Jun 1999 22:47:53 -0000
Reply-To: Constance Tate <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Constance Tate <[log in to unmask]>
Subject: on and off ?
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit
dear janet
can someone please tell me what is meant by on time and off time.i
watch my husband and he seems about the same except he dozes off if he is
reading or watching tv and no one else is in the room.he stays awake if
anybody is in the room with him.
i wake him up and tell him to lay down so he doesn't get a stiff
neck.would it be better if i left him alone?
he really doesn't talk about pd except he will say he has it.he also has a
tumor near the pituitary gland and doesn't want to
change meds or even go to the doctor's unless they call him .all told he
must be doing okay as he drives well and there is nothing wrong with his
appitite.at 78 he still rakes the yard and takes the trash to the dump.
Jack has always been a hard worker and still does all the odd jobs around
the house...
would like advice .
connie tate
=========================================================================
Date: Fri, 11 Jun 1999 04:17:04 -0700
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Bob Chapman <[log in to unmask]>
Subject: Re: Billy Graham on TV/possibilities
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Whenever I see a message from "Dennis Greene" in my list of unread
messages, I know that there will at least be something worthwhile and well
spoken in the messages to follow. Damn Dennis it's great to have you back
on-line, pull up a chair and stay for awhile.
Bob Chapman
Dennis Greene wrote:
>
> I did not see Billy Graham on TV but it sounds to me as if there are 3
> possibilities-
>
> 1. his progression is slow and his symptoms so mild that he really is 'in
> control'.
> (Note - seems unlikely)
>
> 2. He experiences the "On/Off" syndrome and was having a good "On".
> (Note - in this case he could appear 'normal'; he could even walk about
> the set/stage quite freely)
> (Note 2 - his 'Off' condition could well be severe)
>
> 3. he is a B Type PWP i.e. one whose main symptoms are bradykinesia and
> rigidity.
> (Note - I too am a B-type, now in my 13th year. I am very used to
> having people seeing me "off"[and in a bad way] and remarking how well - and
> controlled - I look. Its a familiar story to us B- Types - no tremor = no
> PD)
> (Note 2 - if this is the case the Rev. Graham probably sat quietly,
> appeared calm,moved very little and positioned himself with his head and
> body both lined up on the interviewer. If standing he probably used a
> podium - and held onto it with both hands. His bility to speak could fall
> anywhere across a wide range)
>
> I hope it's #1 - but i doubt it.
>
> Dennis.
>
> +++++++++++++++++++++++++++
> Dennis Greene 49/dx 37/ onset 32
> There's nothing wrong with me that a cure for PD won't fix!
> [log in to unmask]
> http://members.networx.net.au/~dennisg/
> +++++++++++++++++++++++++++
=========================================================================
Date: Fri, 11 Jun 1999 07:42:32 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: janet paterson <[log in to unmask]>
Subject: Re: Billy Graham on TV/possibilities
In-Reply-To: <[log in to unmask]>
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
hi all
At 04:17 1999/06/11 -0700, bob wrote, in part:
>... Damn Dennis it's great to have you back on-line,
>pull up a chair and stay for awhile.
>Bob Chapman
i second that emotion
janet
janet paterson
52 now / 41 dx / 37 onset
PO Box 171 Almonte Ontario K0A 1A0 Canada
a new voice http://www.geocities.com/SoHo/Village/6263/
[log in to unmask]
=========================================================================
Date: Fri, 11 Jun 1999 07:41:10 -0500
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Phil Tompkins <[log in to unmask]>
Subject: Re: vascular parkinsonism
In-Reply-To: <[log in to unmask]>
MIME-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7BIT
Ivan M Suzman wrote:
> Epinephrine is produced from norepinephrine, which in turn is
> produced from dopamine. If the dopamine supply is abnormal, do you
> think this could in turn change the autonomic nervous signalling to
> the sino-atrial node of the heart?
Ivan,
I believe that the production of epinephine you refer to occurs in
the adrenal glands, which also produce dopamine. The abnormal
dopamine supply (PD) is in the subtatia nigra.
Phil
=========================================================================
Date: Fri, 11 Jun 1999 08:27:29 EDT
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Gerry & Brig Haines <[log in to unmask]>
Subject: Re: Why does Michael Claeys attack a PWP??
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Ivan and List,
I have to tell you I also thought Mike C. was complimenting you when he made
those statements. We all know you are the kind of the PWP who does not give
up and that's what Mike meant(my opinion). Plus knowing Mike, he would never
insult anyone in this community.
Gerry
=========================================================================
Date: Fri, 11 Jun 1999 07:39:46 -0500
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: double a enterprises <[log in to unmask]>
Subject: caregiver spouses/hard decesions
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit
It's been awhile since I posted anything to the list. Lots of changes
causing lots of stress. Many of us are being diagnoses in our late 30s to
early 50s, at a time when a lot of our marriages are going into some new
phases as well. I found an excellent resource book, "Surviving Your
Spouse's Chronic Illness" by Chris McGonicle. It is well written, in
simple terms, by caregivers who have been there. It covers the good, the
bad and the ugly, and does it in a non-judgmental way. If you are a
caregiver who doesn't have a support group, this book might help.
If you are the spouse with the chronic illness, this book might help you
understand some of what is going on, at least it did with me. It also makes
you aware of some of the decisions you might need to think about in the
future.
I cant say I enjoyed reading this book, it made me cry, laugh, nod and
agree, and want to say "no, that isn't right" etc. Its hard for me to read
a book these days, the pages shake too bad. I read this one cover to cover
without stopping. I hope this helps someone else
bob
=========================================================================
Date: Fri, 11 Jun 1999 09:16:15 EDT
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Sharon Douglas <[log in to unmask]>
Subject: Re: PMID: 10352867: Management of PD: a review of current and new
...
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Hello Janet,
........... "Surgical therapies for Parkinson's disease consisting of various
forms of
lesion surgery as well as stimulation procedures are reviewed."...........
Being new at this, how do I get more information on this?
Thanks, Sharon for Bob
=========================================================================
Date: Fri, 11 Jun 1999 08:21:01 -0500
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Billie Cook <[log in to unmask]>
Subject: unhappy camper
Comments: To: [log in to unmask]
Content-Type: Text/Plain; Charset=US-ASCII
Content-Transfer-Encoding: 7Bit
MIME-Version: 1.0 (WebTV)
hi ya'll...we have a most unhappy camper here....me!! they (3 drs) tell
me gotta go the feeding tube route and my hubby agrees. Me, don't think
this is what I want to do but doesn't seem like there's much choice at
this point. Am waiting now for call back on scheduling time...:-( (
:'''-(
woe is me.
Billie
=========================================================================
Date: Fri, 11 Jun 1999 10:15:37 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: janet paterson <[log in to unmask]>
Subject: QT: interrupted
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
for sleep, riches and health to be truly enjoyed
they must be interrupted
jean paul richter
janet paterson
52 now / 41 dx / 37 onset
PO Box 171 Almonte Ontario K0A 1A0 Canada
a new voice http://www.geocities.com/SoHo/Village/6263/
[log in to unmask]
=========================================================================
Date: Fri, 11 Jun 1999 07:24:57 PDT
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Cynthia Shook <[log in to unmask]>
Subject: Grandma --- trying Simment R CR need Info ASAP
Mime-Version: 1.0
Content-Type: text/plain; format=flowed
Here's the latest on my grandmother after neuro visit
Mild Parkinson's trying Sinement R CR for 7 days
Dementia (Dr seems more concerned about this than the Parkinson's
can anyone give me any input)
I need to find out what to watch for (reaction, side affects)
and how to tell if improvement. Mom is giving grandma vitamins
and the package says something about them slowing the absorption
of the sinement. How far apart should we space the Sinement and Vitamins.
Since Grandma isn't eating enough she needs the vitamins.
Thanks to everyone for helping.
Cindy
_______________________________________________________________
Get Free Email and Do More On The Web. Visit http://www.msn.com
=========================================================================
Date: Fri, 11 Jun 1999 09:26:13 -0500
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
Comments: RFC822 error: <W> MESSAGE-ID field duplicated. Last occurrence
was retained.
From: Arthur Hirsch <[log in to unmask]>
Subject: The dust has settled
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Shortly after John Bjork's posting about AgeNet on 6 June, there was a hue
and cry about that posting - for what I believe was the wrong reason. In
fact I commend John for posting it - and for the disclaimer that he used -
but he did it the wrong way.
There is nothing wrong with posting false information to the list. (of
course, there's nothing right about it either) - as all of us know that the
list contains much deceiving, outdated, false information, and we sort it
out with each others' help. I'm not accusing AgeNet of being any of these,
but if it were, it would just be so much chaff to separate from the wheat.
There is nothing wrong with discussing a product or service that somebody
somewhere may make money on or referring to such a person or company's
website. Most of the websites on the World Wide Web were placed there for
commercial purposes. But we zealously guard this list against becoming
anybody's commercial tool.
Maybe I missed it, but I'm surprised that nobody else caught this point:
What is wrong is the fact that HTML material was sent to the list. Many of
our listmembers have e-mail clients that cannot handle HTML, and we have
made as effort to restrict the list to plain text for that reason. Had the
posting about AgeNet been in plain text, in would have been less obtrusive
and it would not have stirred up as much dust.
So let this serve as a reminder.....
Art
________________________________________________________________
Arthur Hirsch {} [log in to unmask] {} Lewisville, TX {} 972-434-2377
(nickname on instant mail, ICQ, and chat programs is cutterson)
________________________________________________________________
PAN Forum, other photos, and my approach to links:
http://www.fortunecity.com/meltingpot/farley/817/
________________________________________________________________
=========================================================================
Date: Fri, 11 Jun 1999 10:29:45 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: janet paterson <[log in to unmask]>
Subject: NPD: a word a day = skein
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
hi all
i subscribe to AWAD = a word a day e-mail service
[highly recommended]
[duh! - why didn't i put it in the "links" pages?]
[i'll do that next]
one of the meanings for "skein" is:
>2. A flock of geese or similar birds in flight.
>[Middle English skeine, from Old French escaigne.]
which i thought was interesting enough
but then the awad editor noted:
>(When not in flight, it is a gaggle of geese. -Anu)
and my mind started drifting to pseudo-geese and flying pigs...
janet
janet paterson
52 now / 41 dx / 37 onset
PO Box 171 Almonte Ontario K0A 1A0 Canada
a new voice http://www.geocities.com/SoHo/Village/6263/
[log in to unmask]
=========================================================================
Date: Fri, 11 Jun 1999 08:46:41 -0600
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: "Kathrynne Holden, MS,RD" <[log in to unmask]>
Organization: Five Star Living, Inc.
Subject: Re: unhappy camper
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Dear Billie,
I can sure understand your woe. Eating is among the great pleasures of
life for most of us, and the feeding tube is no substitute. However,
it's often possible to use tube feeding along with regular eating --
have the doctors mentioned this possibility? This allows people to
maintain a healthy weight and get all the fluids, vitamins, and minerals
they need, and still have the pleasure of eating regular meals with
family and friends.
Also, have you seen a speech pathologist? A speech pathologist can be a
great help in assisting with chewing/swallowing difficulties, and should
work closely with a registered dietitian who can assure that you get the
nourishment you need.
Please keep us all informed about your progress -- we'll be wishing you
well and hoping for news.
Best regards,
Kathrynne
Billie Cook wrote:
>
> hi ya'll...we have a most unhappy camper here....me!! they (3 drs) tell
> me gotta go the feeding tube route and my hubby agrees. Me, don't think
> this is what I want to do but doesn't seem like there's much choice at
> this point. Am waiting now for call back on scheduling time...:-( (
> :'''-(
> woe is me.
> Billie
--
Kathrynne Holden, MS, RD
Medical nutrition therapy
Author: "Eat well, stay well with Parkinson's disease"
"Parkinson's disease: assessing and managing unique nutrition needs"
http://www.nutritionucanlivewith.com/
=========================================================================
Date: Fri, 11 Jun 1999 09:08:08 -0600
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: "Kathrynne Holden, MS,RD" <[log in to unmask]>
Organization: Five Star Living, Inc.
Subject: Re: Grandma --- trying Simment R CR need Info ASAP
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Cynthia Shook wrote:
> Here's the latest on my grandmother after neuro visit
> Mild Parkinson's trying Sinement R CR for 7 days. Mom is giving grandma vitamins
> and the package says something about them slowing the absorption
> of the sinement. How far apart should we space the Sinement and Vitamins.
> Since Grandma isn't eating enough she needs the vitamins.
Yes, she does need the vitamins. Iron, protein, and large amounts of
vitamin B6 can interfere with Sinemet absorption. Just be sure she gets
the Sinemet an hour or so before the vitamins, so the Sinemet can get
into her bloodstream before the vitamins can interfere.
If the doctor hasn't mentioned it, Sinemet, although best taken about 30
minutes before meals, can cause nausea on an empty stomach. Many doctors
will advise taking it with meals at first, until the body adjusts.
Another possibility is to take the Sinemet with some vanilla wafers or
graham crackers, and possibly some ginger ale -- these are low in
protein, and can help reduce nausea, while not blocking Sinemet
absorption.
Best,
Kathrynne
--
Kathrynne Holden, MS, RD
Medical nutrition therapy
Author: "Eat well, stay well with Parkinson's disease"
"Parkinson's disease: assessing and managing unique nutrition needs"
http://www.nutritionucanlivewith.com/
=========================================================================
Date: Fri, 11 Jun 1999 11:05:48 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: john bjork <[log in to unmask]>
Subject: Re: The dust has settled
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Art: I couldn't agree with you more, nor could I have said it better myself.
IN fact, that's what I was trying to say. I don't think it would have been
improper for me to have sent a notice about the information I thought might be
of use to the group. And, in that case, whether it was of use or not would
have been up to each member's opinion, should they have decided to access it.
Unfortunately, I swiftly forwarded the AgeNet posting which came to me intact
to the entire list. I should have simply made the reference to the information
available, not the information itself, especially when it was not in plain
text.
I don't want to beat myself senseless here over a laspse in judgement, but I do
agree with you that a lesson has been learned the hard way about forwarding
information to each and every member on the list--in lieu of simply making
available a reference to the information.
Arthur Hirsch wrote:
> Shortly after John Bjork's posting about AgeNet on 6 June, there was a hue
> and cry about that posting - for what I believe was the wrong reason. In
> fact I commend John for posting it - and for the disclaimer that he used -
> but he did it the wrong way.
>
> There is nothing wrong with posting false information to the list. (of
> course, there's nothing right about it either) - as all of us know that the
> list contains much deceiving, outdated, false information, and we sort it
> out with each others' help. I'm not accusing AgeNet of being any of these,
> but if it were, it would just be so much chaff to separate from the wheat.
>
> There is nothing wrong with discussing a product or service that somebody
> somewhere may make money on or referring to such a person or company's
> website. Most of the websites on the World Wide Web were placed there for
> commercial purposes. But we zealously guard this list against becoming
> anybody's commercial tool.
>
> Maybe I missed it, but I'm surprised that nobody else caught this point:
>
> What is wrong is the fact that HTML material was sent to the list. Many of
> our listmembers have e-mail clients that cannot handle HTML, and we have
> made as effort to restrict the list to plain text for that reason. Had the
> posting about AgeNet been in plain text, in would have been less obtrusive
> and it would not have stirred up as much dust.
>
> So let this serve as a reminder.....
>
> Art
>
> ________________________________________________________________
>
> Arthur Hirsch {} [log in to unmask] {} Lewisville, TX {} 972-434-2377
> (nickname on instant mail, ICQ, and chat programs is cutterson)
> ________________________________________________________________
>
> PAN Forum, other photos, and my approach to links:
> http://www.fortunecity.com/meltingpot/farley/817/
> ________________________________________________________________
=========================================================================
Date: Fri, 11 Jun 1999 11:23:33 -0700
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Don McKinley <[log in to unmask]>
Subject: NPD- PIGS
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit
hey what happened not much on PIG,S to day. bet i know why they went to my
home in ARKCANSAW. and my razor backs had them for snack. you see us razor
backs are a mean bunch. lolo gotch Camilla. one from MI. lolo am lot better
today. rember my pills.
I.Y.Q. DON AND VIVIAN
LOVE OF MY LIFE-54
REMBER YOUR MATE OF YOUR LOVE
BETS MEDS. FOR PD IS
LOVE AND UNDERSTAND OF YOU
[log in to unmask]
http://www2.wcoil.com/~flash
=========================================================================
Date: Fri, 11 Jun 1999 11:20:24 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: janet paterson <[log in to unmask]>
Subject: Re: The dust has settled / a gauntlet is tossed
In-Reply-To: <[log in to unmask]>
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
hi all
At 09:26 1999/06/11 -0500, art wrote, in part:
>Shortly after John Bjork's posting about AgeNet on 6 June, there was
>a hue and cry about that posting - for what I believe was the wrong
>reason. In fact I commend John for posting it - and for the disclaimer
>that he used - but he did it the wrong way...
as i recall,
initially, there was confusion about where the post had come from
and whether the entire list had been 'spammed' by agenet:
since we are a 'private' list
[i.e. our names are not available to potential spammers]
this was a 'legitimate' cause for concern
>There is nothing wrong with posting false information to the list.
>(of course, there's nothing right about it either) - as all of us
>know that the list contains much deceiving, outdated, false
>information, and we sort it out with each others' help. I'm not
>accusing AgeNet of being any of these, but if it were, it would
>just be so much chaff to separate from the wheat...
i'm not sure i understand your point here
if there's nothing 'wrong' or 'right' with posting
false information to the list
what are we left with?
maybe the intention behind the posting?
posting false information deliberately could be deemed 'wrong'
although i doubt any cyber-family-member would post such
posting false information in error could be deemed 'wrong'
but i prefer to use the softer, gentler term 'goof-up'
much less judgmental, imho
>There is nothing wrong with discussing a product or service
>that somebody somewhere may make money on or referring to
>such a person or company's website...
nope, nothing at all,
as long as the financial interest is declared as such
if the financial interest is deliberately concealed
behind another stated purpose or mission
then what we have is fraud
plain and simple
>Most of the websites on the World Wide Web
>were placed there for commercial purposes...
i dunno about this; i have my doubts,
but i don't know where such statistics would be maintained
>But we zealously guard this list against
>becoming anybody's commercial tool...
soitenly!
our list mom wouldn't like it
that wasn't the reason she created this list in the first place
>Maybe I missed it, but I'm surprised that nobody else caught
>this point: What is wrong is the fact that HTML material was
>sent to the list...
i didn't miss it
i just didn't comment on it
i figured it was an 'honest' mistake
i figure we are all entitled and even bound to make them
how about writing up a newbie's guide to e-mail
and i'll post it in the "internet for newbies" section of the PIEnet site?
huh?
jaNET of pieNET
janet paterson
52 now / 41 dx / 37 onset
PO Box 171 Almonte Ontario K0A 1A0 Canada
a new voice http://www.geocities.com/SoHo/Village/6263/
[log in to unmask]
=========================================================================
Date: Fri, 11 Jun 1999 11:46:58 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Camilla Flintermann <[log in to unmask]>
Subject: Re: QT: interrupted
In-Reply-To: <[log in to unmask]>
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Oh Janet, all CGs will praise your name for presenting this gem---we're
experts in the "interrupted sleep" department !
>for sleep, riches and health to be truly enjoyed
>they must be interrupted
>
>jean paul richter
>
>
>janet paterson
>52 now / 41 dx / 37 onset
>PO Box 171 Almonte Ontario K0A 1A0 Canada
>a new voice http://www.geocities.com/SoHo/Village/6263/
>[log in to unmask]
---just for fun!........ Camilla <[log in to unmask]>
http://www.newcountry.nu/pd/members/camilla/one.htm
Laughter-- :-) :-)
the best medecine !
=========================================================================
Date: Fri, 11 Jun 1999 12:09:52 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: "Teresa V. Bohuszewicz" <[log in to unmask]>
Subject: Re: i dont get it ti teg tnod i :eR
In-Reply-To: <[log in to unmask]>
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit
That subject heading is cute. I got that.
Teresa, Daughter of Mama (57/43/38)
-----Original Message-----
From: Parkinson's Information Exchange
[mailto:[log in to unmask]]On Behalf Of janet paterson
Sent: Wednesday, June 09, 1999 11:38 AM
To: [log in to unmask]
Subject: Re: i dont get it ti teg tnod i :eR
hi boys and girls
At 23:35 1999/06/08 -0400, i wrote:
>bemused and befuddled
i take it all back
put it down to taaarrd 'n' hot
janet
eating crow
janet paterson
52 now / 41 dx / 37 onset
Postal: PO Box 171, Almonte, Ontario, K0A 1A0, Canada
WebUrl: <http://www.geocities.com/SoHo/Village/6263/>
E-mail: [log in to unmask]
=========================================================================
Date: Fri, 11 Jun 1999 12:26:33 -0400
Reply-To: [log in to unmask]
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Michel Margosis <[log in to unmask]>
Subject: Pets on TV
Comments: To: "Caregivers Are Really Essential (CARE)"
<[log in to unmask]>
MIME-Version: 1.0
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boundary="------------B994D236846775BA9A8A381F"
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I just found out that public television will be showing Dr. Morabito
and his great Dane Victor, his best friend and health aide.
Check for time and channel in your locality on on the Internet:
www.petspartofthefamily.com as a new 13 part series on pets
hosted by Gary Burhoff (remember Radar in Mash).
In the Washington DC area this will be shown on WETA
channel 26 on Saturday 19 June 1999 at 6:00 PM.
--------------B994D236846775BA9A8A381F
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<HTML>
I just found out that public television will be showing Dr. Morabito
<BR>and his great Dane Victor, his best friend and health aide.
<BR>Check for time and channel in your locality on on the Internet:
<BR><A HREF="netscape">www.petspartofthefamily.com</A> as a
new 13 part series on pets
<BR>hosted by Gary Burhoff (remember Radar in Mash).
<BR>In the Washington DC area this will be shown on WETA
<BR>channel 26 on Saturday 19 June 1999 at 6:00 PM.</HTML>
--------------B994D236846775BA9A8A381F--
=========================================================================
Date: Fri, 11 Jun 1999 11:30:19 -0600
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: "M. Dawn Legan" <[log in to unmask]>
Subject: sinemet/oranges
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii; x-mac-type="54455854";
x-mac-creator="4D4F5353"
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Since sinemet taken with orange juice takes effect relatively quickly,
I'm assuming the same for eating an orange with sinemet. Correct?
Heidi
=========================================================================
Date: Fri, 11 Jun 1999 12:39:00 -0700
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: David and Sandra Norris <[log in to unmask]>
Subject: JUST ANOTHER DAY IN THE LIFE
Comments: To: Mike <[log in to unmask]>
MIME-Version: 1.0
Content-Type: multipart/mixed;
boundary="----=_NextPart_000_000A_01BEB407.618799C0"
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------=_NextPart_000_000A_01BEB407.618799C0
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charset="iso-8859-1"
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WHO IS THAT IN THE MIRROR
I walked by the bathroom mirror this morning and had an unpleasant surprise.
I did not know the person staring back at me. I saw the unmoving, frozen
face of another...another what, I have no idea. A stranger?
Today's experience taught me a new meaning to the "masked expression".
Through eighteen years of parkinson's disease I have known the term "masked"
to be the inability to use facial muscles due to bradykinesia and rigidity.
Finding the stranger, hauntingly staring back at me, the masked expression
became the stranger that I would always see.
Quite crazily I began to ask; "What have you done with Sandra?" Just as
quickly as I had asked, I saw a movement; it was fleeting, if at all. A
single tear fell from the strange face. I looked closer and there reflected
in the mirror were my eyes, conveying the sadness felt in my heart at the
realization that the masked stranger was going to be staying for awhile.
Although the new and strange face looks rather old to me, old in years some
would say, I would prefer wise in pd years. The glimpse of the eyes add
familiarity, a warmness of life. The realization that they are my eyes
bring a calmness, a hope of knowing that just because the face is changing
the eyes remain the same. The inner soul is affected by the strange face;
but, desires to go on living. This soul desires and searches for a better
and brighter tomorrow in living with parkinson's disease.
Who is that in the mirror? A strange face, with a knowing vision of a
brighter and better tomorrow.
Sandra L. Norris
David and Sandy Norris
"Faith is the daring of the soul to go farther
than it can see." William Newton Clarke
Sandy 38/dx'd for 11/had pd for 19yrs
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name="Sandra Norris.vcf"
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filename="Sandra Norris.vcf"
BEGIN:VCARD
VERSION:2.1
N:Norris;David/Sandra
FN:David/Sandra Norris
NICKNAME:DaveSa
EMAIL;PREF;INTERNET:[log in to unmask]
REV:19990611T193900Z
END:VCARD
------=_NextPart_000_000A_01BEB407.618799C0--
=========================================================================
Date: Fri, 11 Jun 1999 12:34:41 -0400
Reply-To: Jeana <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Jeana <[log in to unmask]>
Organization: A~Gora Express
Subject: Re: JUST ANOTHER DAY IN THE LIFE
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit
Beautiful Sandra. It really touched me. Thanks.
Jeana
46/14/33
=========================================================================
Date: Fri, 11 Jun 1999 12:55:01 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: janet paterson <[log in to unmask]>
Subject: Re: PMID: 10352867: Management of PD: a review...
In-Reply-To: <[log in to unmask]>
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
hi all
At 09:16 1999/06/11 EDT, sharon wrote:
>Hello Janet,
>... "Surgical therapies for Parkinson's disease consisting of
>various forms of lesion surgery as well as stimulation procedures
>are reviewed."...
>Being new at this, how do I get more information on this?
>Thanks, Sharon for Bob
good question, sharon!
i just did a quick surf 'n' search
starting with the links in the PIEnet web pages
e.g. "hope through research" at ninds sounded promising
but no - not current enough...
i dug through google a bit...
the parkinson's web site at harvard is under renovation...
the surgery sites all promote surgery, period [natch]...
i thought i would be able to find a good, current, basic overview of pd
and its treatment possibilities and options
but i'm danged if i can find one...
anyone else?
the really simple answer to your questions is:
1. as pd progresses, motor difficulties and fluctuations ["on"-"off"]
can become less and less manageable with pharmaceuticals only.
surgery can be an option but is usually a measure of last resort.
[especially now, with so many new meds available
and in the pipeline - in my humble opinion]
2. pallidotomy destroys the specific brain cells
which are causing motor difficulties and fluctuations
- it is irreversible surgery
3. deep brain stimulation [dbs]
or
sub-thalamic n-something [stn]
are brain surgeries which involve implanting a device
somewhat like a pace-maker for the heart - the minute levels
of electric current to specific brain cells
can correct motor difficulties and fluctuations
with very precise adjustment - reversible surgery
4. listmembers who have shared their surgery experiences
are automatically promoted to "hole-in-the-head-gang" status;
their stories are available at the pienet/people section of my website
i'm going to add your deceptively simple question
to my pd for newbies list!
janet
janet paterson
52 now / 41 dx / 37 onset
PO Box 171 Almonte Ontario K0A 1A0 Canada
a new voice http://www.geocities.com/SoHo/Village/6263/
[log in to unmask]
=========================================================================
Date: Fri, 11 Jun 1999 13:07:11 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: janet paterson <[log in to unmask]>
Subject: Re: PMID: 10352867: Management of PD: a review ...
In-Reply-To: <[log in to unmask]>
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
hi again sharon
... and of course the REALLY short answer to your question
is to obtain a copy of the full article [at a library?],
of which i posted the abstract!
i.e
"Can J Neurol Sci 1999 May;26(2):89-103"
= Canadian Journal of Neurological Science
- May 1999 - issue 26[2] - pages 89-103
janet
janet paterson
52 now / 41 dx / 37 onset
PO Box 171 Almonte Ontario K0A 1A0 Canada
a new voice http://www.geocities.com/SoHo/Village/6263/
[log in to unmask]
=========================================================================
Date: Fri, 11 Jun 1999 10:20:15 -0300
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Joao Paulo Carvalho <[log in to unmask]>
Subject: Trojan Horse
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Hi all ,please take care :
----
CERT Advisory CA-99-06 ExploreZip Trojan Horse Program
Original issue date: Thursday June 10, 1999
Source: CERT/CC
Systems Affected
* Machines running Windows 95, Windows 98, or Windows NT.
* Any mail handling system could experience performance
problems or
a denial of service as a result of the propagation of this
Trojan
horse program.
Overview
The CERT Coordination Center continues to receive reports and
inquiries regarding various forms of malicious executable
files that
are propagated as file attachments in electronic mail.
Most recently, the CERT/CC has received reports of sites
affected by
ExploreZip, a Windows Trojan horse program.
I. Description
The CERT/CC has received reports of a Trojan horse program
that is
propagating in email attachments. This program is called
ExploreZip.
The number and variety of reports we have received indicate
that this
has the potential to be a widespread attack affecting a
variety of
sites.
Our analysis indicates that this Trojan horse program requires
the
victim to run the attached zipped_files.exe program in order
install a
copy of itself and enable propagation.
Based on reports we have received, systems running Windows 95,
Windows
98, and Windows NT are the target platforms for this Trojan
horse
program. It is possible that under some mailer configurations,
a user
might automatically open a malicious file received in the form
of an
email attachment. This program is not known to exploit any new
vulnerabilities. While the primary transport mechanism of this
program
is via email, any way of transferring files can also propagate
the
program.
The ExploreZip Trojan horse has been propagated in the form of
email
messages containing the file zipped_files.exe as an
attachment. The
body of the email message usually appears to come from a known
email
correspondent, and may contain the following text:
I received your email and I shall send you a reply ASAP.
Till then, take a look at the attached zipped docs.
The subject line of the message may not be predictable and may
appear
to be sent in reply to previous email.
Opening the zipped_files.exe file causes the program to
execute. At
this time, there is conflicting information about the exact
actions
taken by zipped_files.exe when executed. One possible reason
for
conflicting information may be that there are multiple
variations of
the program being propagated, although we have not confirmed
this one
way or the other. Currently, we have the following general
information
on actions taken by the program.
* The program searches local and networked drives (drive
letters C
through Z) for specific file types and attempts to erase
the
contents of the files, leaving a zero byte file. The
targets may
include Microsoft Office files, such as .doc, .xls, and
.ppt, and
various source code files, such as .c, .cpp, .h, and .asm.
* The program propagates by replying to any new email that
is
received by an infected computer. A copy of
zipped_files.exe is
attached to the reply message.
* The program creates an entry in the Windows 95/98 WIN.INI
file:
run=C:\WINDOWS\SYSTEM\Explore.exe
On Windows NT systems, an entry is made in the system
registry:
[HKEY_CURRENT_USER\Software\Microsoft\Windows
NT\CurrentVersion\Windows]
run = "c:\winnt\system32\explore.exe"
* The program creates a file called explore.exe in the
following
locations:
Windows 95/98 - c:\windows\system\explore.exe
Windows NT - c:\winnt\system32\explore.exe
This file is a copy of the zipped_files.exe Trojan horse,
and the
file size is 210432 bytes.
MD5 (Explore.exe) = 0e10993050e5ed199e90f7372259e44b
We will update this advisory with more specific information as
we are
able to confirm details. Please check the CERT/CC web site for
the
current version containing a complete revision history.
II. Impact
* Users who execute the zipped_files.exe Trojan horse will
infect
the host system, potentially causing targeted files to be
destroyed.
* Indirectly, this Trojan horse could cause a denial of
service on
mail servers. Several large sites have reported
performance
problems with their mail servers as a result of the
propagation of
this Trojan horse.
III. Solution
Use virus scanners
In order to detect and clean current viruses you must keep
your
scanning tools up to date with the latest definition files.
--
Cheers,
+----| Joao Paulo de Carvalho |------ +
| [log in to unmask] |
+--------| Salvador-Bahia-Brazil |------+
=========================================================================
Date: Fri, 11 Jun 1999 15:33:22 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Camilla Flintermann <[log in to unmask]>
Subject: Re: putting on weight/ Pennies for PD plan
In-Reply-To: <[log in to unmask]>
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
>Porky Porkinson the Parkinson Pig has a weight problem! The poor fellow has
>put on so much weight he can barely drag himself around.
Hilary reported poor Porky's problem---too much "avoirdepois"--- dare I
suggest that he has been acting "piggy", gobbling down all offered
coins--so what does he expect!
Porky and friends might like to know that we think we've hit on a way to
collect those pennies here in our little city. Because we are a
university town, there are always student groups looking for charitable
projects--in fact, the Greeks are required to have something every year.
This represents a source of "personpower" to be utilized--so I've made
contact with several campus orgs, even though the students won't be back
till fall.
One such group is the club for Pre-Physical therapy/Pre Occupational
Therapy students. 2 of these seniors last year came weekly to work with
Peter on exercise---the adviser thinks the group might be interested in the
Pennies project.
Next I called the office of PanHellenic Affairs/Interfraternity Council,
and learned that we could submit a proposal to them--and would need 50
copies for all the greek orgs!
I then called an old friend who is an adviser to a non-Greek "Service
fraternity" (Alpha Phi Omega,now coed,BTW) and he was sure they would want
to help--they have about 600 members! I figure we will have to educate
them about PD, recruit students who will make contacts with stores, etc for
placing of canisters, and will collect and record the money. Our support
group here is very small and not really into advocacy, but very supportive
of this plan.
I mention all this in some detail in the hope it may inspire others in
similar situations to consider using student power--some of them pronbably
have grandparents with PD!
Camilla Flintermann, CG for Peter 81/70/55
Oxford, Ohio
http://www.newcountry.nu/pd/members/camilla/one.htm
<[log in to unmask]>
"Ask me about the CARE list for
Caregivers of Parkinsonians ! "
=========================================================================
Date: Fri, 11 Jun 1999 15:42:58 -0700
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: David and Sandra Norris <[log in to unmask]>
Subject: MAKING AN AFGHAN TO BE RAFFLED FOR RESEARCH
Comments: To: Joan Snyder <[log in to unmask]>
MIME-Version: 1.0
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Hello PWP family,
I am writing this to enlist your help and at the same time we will be doing
something for the cause. Many of you know that I have been visiting Joan
Snyder quite a bit. She is such an inspiration that she has the capability
of stirring a fire within a person to get off of one's hind end to do
something positive. I love to crochet and am wanting to do something to
raise money for the pd cause. I had an idea to do a "Sampler" Afghan of 7
inch by 7 inch squares of all the different pattern stitches to represent
all the many different blends of people that have pd or are caregivers or
have friends that have pd.
This is where the LIST family comes in. Anyone out there male, female, or
even child that wants to do a square for the afghan please let me know. You
can do a 7 inch by 7 inch square of any color, any pattern and mail it to
me. I will put the afghan together. I am planning another trip up to see
Joan and plan on raffling the afghan for money for the pd cause. I will be
leaving town on June 30 for Illinois and won't return til July 13. So you
can mail the squares to my address before June 30. After that I will need to
get Joan's approval before I give her address so that you will be able to
send them there.
Requirements: 7 inch by 7 inch square of any color.
Any pattern
Would like to have it by June 30.
Border: 2 rows of navy blue single crochet
Mail to: Sandra Norris
210 Berry Street
Statesville, NC 28677
Could you respond though by a yes or no via the list....
I formally thank Shari Weaver for helping me with this idea.
Thanks so much....HAPPY CROCHETING ....ANY OF THOSE THAT DON'T CROCHET
...IF YOU CAN KNIT ....THAT WILL WORK TOO....
Hope to hear from ya soon.
Sandy
David and Sandy Norris
"Faith is the daring of the soul to go farther
than it can see." William Newton Clarke
Sandy 38/dx'd for 11/had pd for 19yrs
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BEGIN:VCARD
VERSION:2.1
N:Norris;David/Sandra
FN:David/Sandra Norris
NICKNAME:DaveSa
EMAIL;PREF;INTERNET:[log in to unmask]
REV:19990611T224257Z
END:VCARD
------=_NextPart_000_0011_01BEB421.144A80E0--
=========================================================================
Date: Fri, 11 Jun 1999 02:24:34 +0100
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Brian Collins <[log in to unmask]>
Subject: Re: Tremor drug?????? Searching on..........
In-Reply-To: <[log in to unmask]>
MIME-Version: 1.0
Content-Type: TEXT/PLAIN; CHARSET=US-ASCII
On Thu 10 Jun, Callie M. Judd wrote:
> The main change we are attempting right now is to remove the
> Cogentin from
> his mix altogether, since he has been on it for over l2 years and is down to
> lmg/day.
> Am I right in my perceptions that "tremor" is distinctly different from
> "dyskinsia"?
> The "pill rolling tremor " he has had since day one, and the Cogentin has
> always
> effectively eliminated it from being a problem- but about four years ago he
> started
> experiencing a "rolling" in his legs and jaw that seems to be a dyskinesia I
> finally
> found out (on our own, as usual) could be a result of long term Sinimet
> usage. He
> had been on Sinimet st for about 7 yrs when it first showed up and the Neuro
> in
> Arkansas agreed to prescribe Sinimet CR for him (at our inquiry about it).
> He's been on CR for about 4 years now but the intermittent episodes are
> gradually being
> more of a problem to him so we requested an agonist which is how we got the
> Bromocriptine prescribed. We're up to 20mg/day now and things aren't
> changing
> much. Perhaps we do need to "fine tune" the Sinimet but I've been reluctant
> to do
> too much changing too fast. Any suggestions anyone can give will be greatly
> appreciated since few definitive answers ever come from the Dr. and the last
> time
> we saw him he put our appointment interval to a six month rather than a 3
> month
> time so we don't see him until Aug. again.
> The last reduction we tried of Sinimet (to 600mg/day) resulted in
> what we
> think was a sever episode of dystonia. So we keep muddling on........
> By the way, I hope I told Joao, in Brazil, right , that you had done
> the survey
> on Agonists a while back? I'm subject to remember wrong and things are so
> "busy" around here lately, I didn't take time to research it before I said
> it.......I want
> to interact with the list more, but been lurking mostly lately, and staying
> behind.....
> Thanks -
> Marie in Texas
>
>
>
Hello Marie, I sympathise with you trying to understand what is going on.
One of your problems is I think that you attribute too much to the drugs.
I do not believe that different drugs affect different symptoms - it
doesn't work like that. Imagine all your PD symptoms stacked-up in the
order of how much Sinemet it takes to affect them. This is how it is:
anyone else will probably have different symptoms, or the same symptoms
stacked up in a different order. Either way, their results will be
irrelevant to you.
I hope you get on OK with Bromocryptine. I don't like it myself (Bad
psychological side effects) And it is not selective in which dopamine
receptors it stimulates, unlike the later Agonists. I get on well
with Permax myself.
I start a 2-week vacation tomorrow, I am stopping my mail, so if you
call me, use my personal address, then I will have a record when I return,
Regards
--
Brian Collins <[log in to unmask]>
=========================================================================
Date: Fri, 11 Jun 1999 16:14:01 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Hilary Blue <[log in to unmask]>
Subject: Re: MAKING AN AFGHAN TO BE RAFFLED FOR RESEARCH
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
I think this is a positively wonderful idea, and I'm going to my closet to dig
up some yarn as soon as I finish this. You remind me - back in high school,
our service society used to collect 7'' knitted squares, and join them into
blankets for the homeless. But this idea of yours has deeper significance, as
each person's style and individuality will shine through. I love it!
Hilary Blue
David and Sandra Norris wrote:
>
> Hello PWP family,
>
> I am writing this to enlist your help and at the same time we will be doing
> something for the cause. Many of you know that I have been visiting Joan
> Snyder quite a bit. She is such an inspiration that she has the capability
> of stirring a fire within a person to get off of one's hind end to do
> something positive. I love to crochet and am wanting to do something to
> raise money for the pd cause. I had an idea to do a "Sampler" Afghan of 7
> inch by 7 inch squares of all the different pattern stitches to represent
> all the many different blends of people that have pd or are caregivers or
> have friends that have pd.
>
> This is where the LIST family comes in. Anyone out there male, female, or
> even child that wants to do a square for the afghan please let me know. You
> can do a 7 inch by 7 inch square of any color, any pattern and mail it to
> me. I will put the afghan together. I am planning another trip up to see
> Joan and plan on raffling the afghan for money for the pd cause. I will be
> leaving town on June 30 for Illinois and won't return til July 13. So you
> can mail the squares to my address before June 30. After that I will need to
> get Joan's approval before I give her address so that you will be able to
> send them there.
>
> Requirements: 7 inch by 7 inch square of any color.
> Any pattern
> Would like to have it by June 30.
> Border: 2 rows of navy blue single crochet
> Mail to: Sandra Norris
> 210 Berry Street
> Statesville, NC 28677
> Could you respond though by a yes or no via the list....
>
> I formally thank Shari Weaver for helping me with this idea.
>
> Thanks so much....HAPPY CROCHETING ....ANY OF THOSE THAT DON'T CROCHET
> ...IF YOU CAN KNIT ....THAT WILL WORK TOO....
>
> Hope to hear from ya soon.
>
> Sandy
>
> David and Sandy Norris
>
> "Faith is the daring of the soul to go farther
> than it can see." William Newton Clarke
> Sandy 38/dx'd for 11/had pd for 19yrs
>
> ------------------------------------------------------------------------
>
> David/Sandra Norris <[log in to unmask]>
>
> David/Sandra Norris
> <[log in to unmask]>
> Additional Information:
> Version 2.1
> Last Name Norris
> First NameDavid/Sandra
> Revision 19990611T224257Z
=========================================================================
Date: Fri, 11 Jun 1999 14:56:50 -0700
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Barb_MSN <[log in to unmask]>
Subject: Re: JUST ANOTHER DAY IN THE LIFE
Sandy...
Ya know... that @^&! mask is just one more dehumanizing indignity,
that PD slams us with over the years.
I have often felt the need when I'm in a
"heavy-duty-mask-day-mode" to be recognized by others as a living,
breathing, ALIVE human being at those times.
Years ago, when I first became aware that I had a PD mask at
times, when I felt the need to have my presence as a member of the
human race reconfirmed I'd go to a local mall where I'd stroll
down the main concourse and meet the eyes of everyone glancing my
way. And as our eyes met, I'd give 'em a great big ear-to-ear
smile.
I had to FORCE my face into those smiles, too, because the PD had
such a grip on my facial muscles that without making the conscious
effort to smile, I simply COULDN'T smile.
A funny thing always happened when I'd make eye contact and smile
at a stranger in the mall - they smiled back at me, and both they
AND I continued to smile as we passed each other and walked on.
Eventually smiling and facial movement became easier to do and
once again became HABIT. But I still go to the mall to shop upon
occasion and you can bank on it that when I'm there, I STILL
stroll down the concourse making eye contact with stranger and
smiling at 'em. And HEY - THEY still smile back! <smiling>
Barb Mallut
[log in to unmask],msn.com
-----Original Message-----
From: David and Sandra Norris <[log in to unmask]>
To: [log in to unmask] <[log in to unmask]>
Date: Friday, June 11, 1999 9:38 AM
Subject: JUST ANOTHER DAY IN THE LIFE
>WHO IS THAT IN THE MIRROR
>
>
>I walked by the bathroom mirror this morning and had an
unpleasant surprise.
>I did not know the person staring back at me. I saw the
unmoving, frozen
>face of another...another what, I have no idea. A stranger?
>
>Today's experience taught me a new meaning to the "masked
expression".
>Through eighteen years of parkinson's disease I have known the
term "masked"
>to be the inability to use facial muscles due to bradykinesia and
rigidity.
>Finding the stranger, hauntingly staring back at me, the masked
expression
>became the stranger that I would always see.
>
>Quite crazily I began to ask; "What have you done with Sandra?"
Just as
>quickly as I had asked, I saw a movement; it was fleeting, if
at all. A
>single tear fell from the strange face. I looked closer and
there reflected
>in the mirror were my eyes, conveying the sadness felt in my
heart at the
>realization that the masked stranger was going to be staying for
awhile.
>
>Although the new and strange face looks rather old to me, old in
years some
>would say, I would prefer wise in pd years. The glimpse of the
eyes add
>familiarity, a warmness of life. The realization that they are
my eyes
>bring a calmness, a hope of knowing that just because the face is
changing
>the eyes remain the same. The inner soul is affected by the
strange face;
>but, desires to go on living. This soul desires and searches for
a better
>and brighter tomorrow in living with parkinson's disease.
>
>Who is that in the mirror? A strange face, with a knowing vision
of a
>brighter and better tomorrow.
>
>Sandra L. Norris
>David and Sandy Norris
>
>"Faith is the daring of the soul to go farther
>than it can see." William Newton Clarke
>Sandy 38/dx'd for 11/had pd for 19yrs
>
=========================================================================
Date: Fri, 11 Jun 1999 17:58:45 -0700
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: "George J. Lussier" <[log in to unmask]>
Subject: The Puppy and the Man with Parkinsons
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
THE PUPPY AND THE MAN WITH PARKINSONS
Once upon a recent time there was a puppy of mixed breed including
lab and pit bull . And there was a man ; he to was of mixed breed
in a sense but of more importance he was 60 years old and had Parkinsons
Disease, a debilitating neurological disease that more than likely
would leave him in a nursing home and nearly did. A few years ago
he was in horrible shape and spirits but through the wisdom of his
neurologist and his own unwillingness to give up he chose to go the
sugical route. Today he is doing well although given his decision
to take on a puppy you wonder about his mental health.
But the Man with Parkinsons thought long and hard about taking on
such a long-term commitment. He is a practical man, a realist, who
thought he had allocated enough time, energy, money and true love.
To his credit he had studied the litter of nine since the day of their
entrance. This was no whimsical decision but it was an erroneous one.
Whatever he had allocated wasn't anywhere near enough as he found
out when the seventh week rolled around and the puppy seemed ready
to move away from his family.
The puppy is black and white in color with one black eye and one
albino-like light eye. She did not respond to any name including her
given name of "Pinto" or "Crash" as the Man with Parkinsons was fond
of calling her. Within 6 months she will weigh in at about 65 lb.
Even as he type out this story she is asleep close by he can almost
see her growing. As a puppy she reasoned that her primary objective
was not to learn her name but, as puppies all over the world were
doing, "search, seek-out and destroy" But this is not what this story is all about because while irritating to the Man with Parkinson it is really no big deal, What we are going to talk about is walking the puppy.
The Man with Parkinsons had some lofty ambitions that he and his
dog would go on long and very pleasant walks. A man and his dog has
become a puppy and his man. He though aloud: "How could such a sweet,
new born learn such dastardly ways to literally trip me up?." And
the Puppy thought silently: "Where do I come up with such great tripping
strategies" (To say nothing of my neat and very sophisticated language).
And at that moment the Man with Parkinson and Pinto looked at each
other and realized in harmony that Pinto has a tripping gene. It's
all in the gene pool! But alas this insight did not interrupt the
negative behavior because there was no agreement that the behavior
was indeed negative.
Although the Man with Parkinsons knew that ALL relationships were
a struggle he thought that this might be a bit easier. Wrong! OK,
so they didn't have to worry whether or not dinner was to be dutch treat
or should they kiss on the first date. There were other issues that
only someone with a movement disorder would think about. Issues/questions
like, is Pinto neurologically and physiologically ready to respond
to training? If so, when and how best to do this "obedience" training?
Is the Man with Parkinsons able to do this training? With the help
of a seasoned trainer they are about to find out. Be sure and read the
next installment in this very true story
=========================================================================
Date: Fri, 11 Jun 1999 18:19:30 -0700
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: David and Sandra Norris <[log in to unmask]>
Subject: THANKS A MILLION
MIME-Version: 1.0
Content-Type: multipart/mixed;
boundary="----=_NextPart_000_0016_01BEB436.F2D79180"
This is a multi-part message in MIME format.
------=_NextPart_000_0016_01BEB436.F2D79180
Content-Type: text/plain;
charset="iso-8859-1"
Content-Transfer-Encoding: 7bit
THANKS BARB MSN
David and Sandy Norris
"Faith is the daring of the soul to go farther
than it can see." William Newton Clarke
Sandy 38/dx'd for 11/had pd for 19yrs
------=_NextPart_000_0016_01BEB436.F2D79180
Content-Type: text/x-vcard;
name="Sandra Norris.vcf"
Content-Transfer-Encoding: 7bit
Content-Disposition: attachment;
filename="Sandra Norris.vcf"
BEGIN:VCARD
VERSION:2.1
N:Norris;David/Sandra
FN:David/Sandra Norris
NICKNAME:DaveSa
EMAIL;PREF;INTERNET:[log in to unmask]
REV:19990612T011930Z
END:VCARD
------=_NextPart_000_0016_01BEB436.F2D79180--
=========================================================================
Date: Fri, 11 Jun 1999 18:09:46 -0400
Reply-To: [log in to unmask]
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: David Silverman <[log in to unmask]>
Subject: Re Welcome
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Barbara:
Thank you for your Welcome message upon my subscribing to the
List. Actually, I was a member before but just had to rejoin because my
computer wiped out my subscription.
In any case, I am a Caregiver for my dear friend, Muriel
(66/ 4 1/2). She had been very active but while working started to note
her handwriting getting smaller and smaller. This turned out to be the
first symptom. Ultimately, she started occasionally falling when one of
her feet would stick to the ground while walking. She took a bad fall in
the kitchen last year and did no damage but after the one week
hospitalization found that her legs had become rubbery. She now uses a
power wheelchairand has some aides assistiing her during the week--with
dressing and bathroom routines. She also developed swallowing problems
and I have had to do the Heimlich manoever on her about eight times in
the last two years. However, she is now very careful and no longer eats
foods that are liable to stick. Her hands do not work too well and as a
result of finger contractions she often drops food and takes a long time
to eat. However, we can now joke about it and I sometimes ask her for
her ETA for dessert. We both find that Humor is a tremendous help. I
subscribe to some Humor lists but sometimes we can just clown
around---even if its "Black" humor. She will be seeing a new, local
neurologist in a few weeks and is expected to get
speech and swallowing tests and therapy and also physical therapy. We
are starting to go to local Parkinson lectures and support groups and I
believe this will be very helpful---I hope. I tell her about the letters
to the List and she finds them very instructive and helpful .
I wish everybody well and thank you all for your
letters and helpful comments and information.
David
Silverman
=========================================================================
Date: Fri, 11 Jun 1999 18:58:17 -0700
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Don McKinley <[log in to unmask]>
Subject: IS ANY ONE GETTING MY MAIL TO LIST?
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit
ether i am not getting to the list or i am on every ones bad list.
JUST HURD A GOOD JOKE FROM TIC TACK DOE
ONE OF THE STARS WAS A GOD MOTHER TO A FRIEND OF HERS. SHE
WENT FOR A VISIT. THE LITTLE GIRL WAS ABOUT 3 ANY HOW SHE WENT TO TELL HER
DAD SHE WAS HERE. SHE CAME BACK A SAID DADDY WAS. TAKING A SHOWER AND SAID
WAS JUST LIKE A HORSE AS HE HAD A TAIL BETWEEN HIS LEGS. people says little
ones are dump. it goes to show they are not all bad. how she said like a
horse so how to explain that to a 3 year old?
I.Y.Q. DON AND VIVIAN
[log in to unmask]
=========================================================================
Date: Fri, 11 Jun 1999 18:18:38 -0700
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: MURPH23 <[log in to unmask]>
Subject: Re: The Puppy and the Man with Parkinsons
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit
Great story
Give her time she will come around, PEPPER did but I dont know how. It
seems it just happened one day.
MURPH23 lost in a small village in Arkansas
=========================================================================
Date: Fri, 11 Jun 1999 16:38:42 -0700
Reply-To: [log in to unmask]
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: "Ronald F. Vetter" <[log in to unmask]>
Organization: retiree - volunteer
Subject: Re: IS ANY ONE GETTING MY MAIL TO LIST?
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
i imagine we are all getting messages from you, Don.
some of us do not have much to say
others are not inclined to type
maybe you would enjoy chatting. there is more responsse immediately if
there arre several chatting
i do not like to chat - partly because i seldom find anyone home. also
i do not like to tie up phone line too much.
best wishes to you and Vivian
--
Ron Vetter 1936, '84 PD dz
[log in to unmask]
http://www.ridgecrest.ca.us/~rfvetter
=========================================================================
Date: Fri, 11 Jun 1999 19:41:08 EDT
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Clare Wilson <[log in to unmask]>
Subject: Re: JUST ANOTHER DAY IN THE LIFE
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Barb, a lovely way to reverse our images. Thank you for writing this
response about the mask. I feel my mask more keenly on some days
more than on other days. No comprendez! But in the future, will
consciously make that effort to break into it.
Clare Wilson
=========================================================================
Date: Fri, 11 Jun 1999 19:45:33 EDT
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Clare Wilson <[log in to unmask]>
Subject: Re: MAKING AN AFGHAN TO BE RAFFLED FOR RESEARCH
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Sandy, I love to knit. Could knitted squares be incorporated with crocheted
squares? If not, I could get a HOW TO book on crocheting and learn quickly
enough. Used to be able to years ago. What a fun project. Great idea.
Let me know if you can.
Clare Wilson
=========================================================================
Date: Sat, 12 Jun 1999 07:49:04 +0800
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Dennis Greene <[log in to unmask]>
Subject: Re: QT: interrupted/comments
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit
Janet Paterson quoted:
>for sleep, riches and health to be truly enjoyed
>they must be interrupted
Comments:
Sleep: I REALLY enjoy sleep - mine is often interrupted.
Riches: I'll have to take Jean Paul Richter's word on this one - you can't
interrupt what hasn't yet started.
Health : As I am still experiencing the interruption I'll have to take JPR's
word on this one too. I look forward to having its truth confirmed in the
not to distant future.
Dennis.
=========================================================================
Date: Fri, 11 Jun 1999 16:57:35 PDT
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Pennie Farnham <[log in to unmask]>
Subject: Re: sinemet/oranges
Mime-Version: 1.0
Content-Type: text/plain; format=flowed
>>My husband (Terry) has a question on Sinement Cr. Do we want it speed up
>>by taking anything but water. As it is to be releast slowly?
>Since sinemet taken with orange juice takes effect relatively quickly,
>I'm assuming the same for eating an orange with sinemet. Correct?
>
>Heidi
______________________________________________________
Get Your Private, Free Email at http://www.hotmail.com
=========================================================================
Date: Fri, 11 Jun 1999 20:11:16 -0700
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: David and Sandra Norris <[log in to unmask]>
Subject: Re: MAKING AN AFGHAN TO BE RAFFLED FOR RESEARCH
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit
Claire,
absolutely !!! you can knit an 8 x 8 inch square. Glad to hear you wish to
participate.
Thanks!!!
Sandy
David and Sandy Norris
"Faith is the daring of the soul to go farther
than it can see." William Newton Clarke
Sandy 38/dx'd for 11/had pd for 19yrs
----- Original Message -----
From: Clare Wilson <[log in to unmask]>
To: <[log in to unmask]>
Sent: Friday, June 11, 1999 4:45 PM
Subject: Re: MAKING AN AFGHAN TO BE RAFFLED FOR RESEARCH
> Sandy, I love to knit. Could knitted squares be incorporated with
crocheted
> squares? If not, I could get a HOW TO book on crocheting and learn
quickly
> enough. Used to be able to years ago. What a fun project. Great idea.
> Let me know if you can.
> Clare Wilson
=========================================================================
Date: Fri, 11 Jun 1999 17:23:25 -0700
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Gordon Seese <[log in to unmask]>
Subject: Re: MAKING AN AFGHAN TO BE RAFFLED FOR RESEARCH
In-Reply-To: <001401beb45b$c31e0260$350e060c@acer>
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
At 03:42 PM 6/11/99 -0700, you wrote:
>Hello PWP family,
>
>I am writing this to enlist your help and at the same time we will be doing
>something for the cause. Many of you know that I have been visiting Joan
>Snyder quite a bit. She is such an inspiration that she has the capability
>of stirring a fire within a person to get off of one's hind end to do
>something positive. I love to crochet and am wanting to do something to
>raise money for the pd cause. I had an idea to do a "Sampler" Afghan of 7
>inch by 7 inch squares of all the different pattern stitches to represent
>all the many different blends of people that have pd or are caregivers or
>have friends that have pd.
>
>This is where the LIST family comes in. Anyone out there male, female, or
>even child that wants to do a square for the afghan please let me know. You
>can do a 7 inch by 7 inch square of any color, any pattern and mail it to
>me. I will put the afghan together. I am planning another trip up to see
>Joan and plan on raffling the afghan for money for the pd cause. I will be
>leaving town on June 30 for Illinois and won't return til July 13. So you
>can mail the squares to my address before June 30. After that I will need to
>get Joan's approval before I give her address so that you will be able to
>send them there.
>
>Requirements: 7 inch by 7 inch square of any color.
> Any pattern
> Would like to have it by June 30.
> Border: 2 rows of navy blue single crochet
>Mail to: Sandra Norris
> 210 Berry Street
> Statesville, NC 28677
>Could you respond though by a yes or no via the list....
>
>I formally thank Shari Weaver for helping me with this idea.
>
>Thanks so much....HAPPY CROCHETING ....ANY OF THOSE THAT DON'T CROCHET
>...IF YOU CAN KNIT ....THAT WILL WORK TOO....
>
>Hope to hear from ya soon.
>
>Sandy
>
>David and Sandy Norris
>
>"Faith is the daring of the soul to go farther
>than it can see." William Newton Clarke
>Sandy 38/dx'd for 11/had pd for 19yrs
>
>Attachment Converted: "C:\attach\Sandra Norris2.vcf"
> Great idea. What fun! I only q1uilt, so if you decided to do a quilt
after this great success, let me know. Thea Lou Seese
=========================================================================
Date: Fri, 11 Jun 1999 21:37:19 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Camilla Flintermann <[log in to unmask]>
Subject: Special list for Caregivers
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
NEWCOMERS TO THE PD LIST : DO YOU KNOW ABOUT "CARE" ?
CARE is a sublist of this one, which was created because it appeared that
the caregivers (CGs)of people with Parkinsons (PWPs) needed a place where
they could find support of all kinds, vent frustrations, and exchange ideas
without fear of hurting anyone's feelings. It is, so to speak, a "virtual"
support group, as many CGs do not have a local group , or are "long
distance CGs'".
The CARE list (Caregivers Are Really Essential) is much smaller than the
main PD list, so there is less traffic daily and fewer messages to read.
It does NOT shut off participation on the main PD list, although a few CGs
find both lists are too much to follow, and decide to read only CARE. We
operate through a listserv at Miami University in Oxford, OH, and are a
*closed* list, meaning that any CG who wishes to join should send to:
[log in to unmask]
this command --in body of post:--no signature, please:
SUBscribe CARE your full name
The request will be forwarded to the co-owners of the list, who will add
you, and send you further instructions.
Questions? Ask me--- Camilla Flintermann, [log in to unmask]
or---Jeff Jones, [log in to unmask]
=========================================================================
Date: Fri, 11 Jun 1999 21:41:21 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Camilla Flintermann <[log in to unmask]>
Subject: Re: IS ANY ONE GETTING MY MAIL TO LIST?
In-Reply-To: <[log in to unmask]>
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
>ether i am not getting to the list or i am on every ones bad list.
>
Ok Don, we read you loud and clear---don't always have time to respond but
please know you are getting through---and causing a few chuckles!
---just for fun!........ Camilla <[log in to unmask]>
http://www.newcountry.nu/pd/members/camilla/one.htm
Laughter-- :-) :-)
the best medecine !
=========================================================================
Date: Fri, 11 Jun 1999 21:51:02 EDT
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Bonnie Rowley <[log in to unmask]>
Subject: Re: THANKS A MILLION
Comments: To: [log in to unmask]
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Please stop sending that attachment.
In a message dated 6/11/1999 6:17:03 PM Eastern Daylight Time,
[log in to unmask] writes:
>
> File: Sandra Norris.vcf (161 bytes)
> DL Time (32000 bps): < 1 minute
>
> THANKS BARB MSN
> David and Sandy Norris
>
> "Faith is the daring of the soul to go farther
> than it can see." William Newton Clarke
> Sandy 38/dx'd for 11/had pd for 19yrs
>
>
=========================================================================
Date: Fri, 11 Jun 1999 20:52:51 -0500
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Billie Cook <[log in to unmask]>
Subject: unhappy camper
Content-Type: Text/Plain; Charset=US-ASCII
Content-Transfer-Encoding: 7Bit
MIME-Version: 1.0 (WebTV)
thanks for all the encouragement....they sure do mean alot. you are all
very special people!!!.
The tube is scheduled for this coming Monday at 12:30. BFN Billie Cook
=========================================================================
Date: Fri, 11 Jun 1999 22:35:47 EDT
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Jessie Masterson <[log in to unmask]>
Subject: Re: unhappy camper
Comments: To: [log in to unmask]
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Dear Anna,
It is always a surprise to have my mail go through. But it is fun.
Did you write a letter to Grandpa Bill and to me. If it did the letter went
through so fast. I missed the whole letter. They tend to hide .
The pool is open for a picnic Saturday.
Write if the letter was sent. Love, Grandma Jessie
=========================================================================
Date: Fri, 11 Jun 1999 21:05:48 -0600
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Nancy Burnham <[log in to unmask]>
Subject: Surviving Your Spouse's Chronic Illness
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit
I've been going to write about this book also. Chris McGonicle lives in
Helena, Montana and I went to a lunch meeting one day where she was the
speaker. I purchased the book from her, but haven't had time to read it
yet. When she was 29 her husband was diagnosed with MS. She couldn't find
any literature to answer her many questions so after he died she decided to
write this book. She has a PH D in English.
Nancy B cg for Don 16/65
-----Original Message-----
From: double a enterprises <[log in to unmask]>
To: [log in to unmask] <[log in to unmask]>
Date: Friday, June 11, 1999 6:38 AM
Subject: caregiver spouses/hard decesions
>It's been awhile since I posted anything to the list. Lots of changes
>causing lots of stress. Many of us are being diagnoses in our late 30s to
>early 50s, at a time when a lot of our marriages are going into some new
>phases as well. I found an excellent resource book, "Surviving Your
>Spouse's Chronic Illness" by Chris McGonicle. It is well written, in
>simple terms, by caregivers who have been there. It covers the good, the
>bad and the ugly, and does it in a non-judgmental way. If you are a
>caregiver who doesn't have a support group, this book might help.
>If you are the spouse with the chronic illness, this book might help you
>understand some of what is going on, at least it did with me. It also
makes
>you aware of some of the decisions you might need to think about in the
>future.
>I cant say I enjoyed reading this book, it made me cry, laugh, nod and
>agree, and want to say "no, that isn't right" etc. Its hard for me to read
>a book these days, the pages shake too bad. I read this one cover to cover
>without stopping. I hope this helps someone else
>bob
>
=========================================================================
Date: Fri, 11 Jun 1999 20:14:52 -0700
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Gordon Seese <[log in to unmask]>
Subject: Re: IS ANY ONE GETTING MY MAIL TO LIST?
In-Reply-To: <v03102810b38732c82b56@[134.53.29.212]>
Mime-Version: 1.0
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At 09:41 PM 6/11/99 -0400, you wrote:
>>ether i am not getting to the list or i am on every ones bad list.
>>
>
>Ok Don, we read you loud and clear---don't always have time to respond but
>please know you are getting through---and causing a few chuckles!
>
>
> ---just for fun!........ Camilla <[log in to unmask]>
>
> http://www.newcountry.nu/pd/members/camilla/one.htm
>
> Laughter-- :-) :-)
> the best medecine !
>
> You are doing fine in Mt. Shasta California. Always glad to see you
there..Regards, Thea and Gordon Seese
=========================================================================
Date: Fri, 11 Jun 1999 20:22:28 -0700
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Gordon Seese <[log in to unmask]>
Subject: Re: The Puppy and the Man with Parkinsons
In-Reply-To: <[log in to unmask]>
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
At 05:58 PM 6/11/99 -0700, you wrote:
> THE PUPPY AND THE MAN WITH PARKINSONS
>
>Once upon a recent time there was a puppy of mixed breed including
>lab and pit bull . And there was a man ; he to was of mixed breed
>in a sense but of more importance he was 60 years old and had Parkinsons
>Disease, a debilitating neurological disease that more than likely
>would leave him in a nursing home and nearly did. A few years ago
>he was in horrible shape and spirits but through the wisdom of his
>neurologist and his own unwillingness to give up he chose to go the
>sugical route. Today he is doing well although given his decision
>to take on a puppy you wonder about his mental health.
>
>
>But the Man with Parkinsons thought long and hard about taking on
>such a long-term commitment. He is a practical man, a realist, who
>thought he had allocated enough time, energy, money and true love.
>To his credit he had studied the litter of nine since the day of their
>entrance. This was no whimsical decision but it was an erroneous one.
>Whatever he had allocated wasn't anywhere near enough as he found
>out when the seventh week rolled around and the puppy seemed ready
>to move away from his family.
>
> The puppy is black and white in color with one black eye and one
>albino-like light eye. She did not respond to any name including her
>given name of "Pinto" or "Crash" as the Man with Parkinsons was fond
>of calling her. Within 6 months she will weigh in at about 65 lb.
>Even as he type out this story she is asleep close by he can almost
>see her growing. As a puppy she reasoned that her primary objective
>was not to learn her name but, as puppies all over the world were
>doing, "search, seek-out and destroy" But this is not what this story is
all about because while irritating to the Man with Parkinson it is really
no big deal, What we are going to talk about is walking the puppy.
>
> The Man with Parkinsons had some lofty ambitions that he and his
>dog would go on long and very pleasant walks. A man and his dog has
>become a puppy and his man. He though aloud: "How could such a sweet,
>new born learn such dastardly ways to literally trip me up?." And
>the Puppy thought silently: "Where do I come up with such great tripping
>strategies" (To say nothing of my neat and very sophisticated language).
>And at that moment the Man with Parkinson and Pinto looked at each
>other and realized in harmony that Pinto has a tripping gene. It's
>all in the gene pool! But alas this insight did not interrupt the
>negative behavior because there was no agreement that the behavior
>was indeed negative.
>
> Although the Man with Parkinsons knew that ALL relationships were
>a struggle he thought that this might be a bit easier. Wrong! OK,
>so they didn't have to worry whether or not dinner was to be dutch treat
>or should they kiss on the first date. There were other issues that
>only someone with a movement disorder would think about. Issues/questions
>like, is Pinto neurologically and physiologically ready to respond
>to training? If so, when and how best to do this "obedience" training?
>Is the Man with Parkinsons able to do this training? With the help
>of a seasoned trainer they are about to find out. Be sure and read the
>next installment in this very true story
>
> You should be starting training now.Being very fond of the Lab breed, the
dog will probably be tractable. I must admit I am interested in hearing
more of this story. I am active in the Humane Society here and we have no
animals, anymore.The most I know of in this group is 17, but we do think of
a dog a lot..Just one..Regards Thea and Gordon Seese
=========================================================================
Date: Fri, 11 Jun 1999 20:23:48 -0700
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: JaneRoss <[log in to unmask]>
Subject: DBS Councelor
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
I will be in Portland, Oregon next week learning the ins and outs of being
a councelor for future DBS surgery patients. If you have any faith in me
just email your questions to me and I'll try to get some answers back to
you.
jjjane
http://www.geocities.com/soho/village/6263/pienet/people/hithross.html
=========================================================================
Date: Fri, 11 Jun 1999 20:58:23 -0700
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: David Moreland <[log in to unmask]>
Subject: Two dogs- non PD
In-Reply-To: <[log in to unmask]>
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Non PD1
We have two very nice dogs which we are not giving the care that they
need. One is a white Austrailian Cattle Dog. She is about two years old and
she is spayed and in good health. She is good with kids and with adults.
She is very smart.Free to good home.
The other is about seven years old. She is part pit Bull and part dog down
the street. She is very gentle with children. She would make a good
companion for an older person. She too is free to a good home. We live in
Salem, Oregon. Our phone number is (503)378-1368.
Yours and His
David L. Moreland
http://www.teleport.com/~davelm/moreland_home.html
=========================================================================
Date: Sat, 12 Jun 1999 00:31:14 EDT
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: KEn Becker <[log in to unmask]>
Subject: Re: IS ANY ONE GETTING MY MAIL TO LIST?
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
You're coming through in Fla.!!! Glad you took pills and feel better! You
are always on my "good" list, Don! Hi to Vivian and the rest of the
family.......
[log in to unmask]
=========================================================================
Date: Sat, 12 Jun 1999 00:35:03 EDT
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: "Callie M. Judd" <[log in to unmask]>
Subject: Re: Tremor drug??????
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
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Dear Margie: Thanks for the words about Cogentin- We are presently reducing
it
according to the exact method you described - times before I think we went
too
fast - if there is one thing we've learned about this situation is that you
have to
"creep" in and "creep" out of new things - especially my husband - maybe it's
just
that he's been fighting the condition for almost l3 yr. now and is almost
70yr. old.
My sensitivity is going to have to increase along with his.......
Marie
=========================================================================
Date: Sat, 12 Jun 1999 13:10:54 +0800
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Elizabeth Leslie <[log in to unmask]>
Subject: ... ANOTHER DAY IN THE LIFE ... of a VERY sad face.
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
While I think I'm slowly - a la bradykinetic mode <g> - coming to terms
with the strange face that often confronts me in the mirror, I was totally
unprepared for this exquisitely poignant experience recently that left me
feeling unspeakably down for days.
I was in a crowded department store restroom in the city, standing drying
my hands, when I heard a little voice say " ... a VERY sad face." I looked
down and there was a little boy of about 5 (under 6-yr old boys aare
permitted in women's restrooms here) looking up at me. He looked
frightened, but nodded 'yes' when I asked him if it was my face he was
talking about. So I told him gently that I have a disease that sometimes
makes it hard for me to smile, and said something pretty hollow about being
'happy on the inside' - obviously a lie because close to end-of-dose and
tired, as well as being acutely 'touched' by the child's need to 'speak
what he saw' I was struggling against tears. His granny was very
apologetic, saying "there's nothing quite like the brutal honesty of a
child". She thanked me for not taking offence, and I asked her if she'd
use the incident to teach her grandchildren about PD ... I hope she did,
but she probably knows very little anyway.
I cried on/off for about 2 days aafter this incident, but the strange thing
is that looking back on it I realise I'd found myself - not for the first
time - in the ironic position of comforting and reassuring others over what
was clearly an 'injury' to me ... like immediately post-dx when, to my huge
surprise, I spent a lot of time comforting distressed family and friends.
On reflection, this reaction is healthy because it forces me to step out of
my own immediaate anguish, but it puzzles me too. Is it just a female
response? do we revert to some innate nurturing role in situations like
this? Do blokes feel/do it too?
I wanted to post about this earlier, but to be truthful it just hurt too
much. So thanks Sandy and Barb for opening a space I feel OK enough in to
air it - Sandy for what you say about eyes ... reminding me that my friends
often remark on the light and life in my eyes ... and Barb for reminding me
of something I know but don't always remember - that facial expression can
be as much a matter of habit as of mood/affliction. It's funny that in our
far distant 'corners' of the globe we're playing the same games ... for
some time I've been confronting people's gazes/stares with bold eye contact
followed by whatever semblance of a 'dazzler' I can muster at the time, and
it never fails to throw 'em ... but it's probably a fine line we stumble
between being perceived as pleasant <:-)-ing> personages or as labile
<g-ing> ... ? loons.
:)s and <g>s to you all
Beth Leslie 55/52/?40
Fremantle
Western Australia
=========================================================================
Date: Sat, 12 Jun 1999 01:24:44 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: janet paterson <[log in to unmask]>
Subject: Re: QT: interrupted
In-Reply-To: <[log in to unmask]>
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
hey all
At 10:15 1999/06/11 -0400, i wrote:
>for sleep, riches and health to be truly enjoyed
>they must be interrupted
>
>jean paul richter
i am struck by how many people are struck by this quote
is it not another side of that old blues saw
"you don't miss your water til your well runs dry"
?
personally,
i don't mind having my sleep interrupted
and never have...
i love drifting off to asleep!
janet
janet paterson
52 now / 41 dx / 37 onset
PO Box 171 Almonte Ontario K0A 1A0 Canada
a new voice http://www.geocities.com/SoHo/Village/6263/
[log in to unmask]
=========================================================================
Date: Sat, 12 Jun 1999 02:37:31 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Ivan M Suzman <[log in to unmask]>
Subject: Re: ... ANOTHER DAY IN THE LIFE ... of a VERY sad face.
MIME-Version: 1.0
Content-Type: text/plain
Content-Transfer-Encoding: 7bit
Hi Beth,
I feel that this nurturing reaction IS more of a female
response.. In my own case, I have had a long, rocky road to learn
how to inspire others despite my pain, and to be, as often as I can be, a
role
model. So I put on my heroic face for the public as much as possible.
My nurturing side comes out when other men and women who
are in distress ask me to listen to them--we often commisserate and
then end up becoming closer friends.
Ivan
:- )
Am I a "bloke?" I enjoy so much the Australian
words that are in use on the opposite side of the globe.
On Sat, 12 Jun 1999 13:10:54 +0800 Elizabeth Leslie
<[log in to unmask]> writes:
>
>is that looking back on it I realise I'd found myself - not for the
>first
>time - in the ironic position of comforting and reassuring others over
>what
>was clearly an 'injury' to me ... like immediately post-dx when, to my
>huge
>surprise, I spent a lot of time comforting distressed family and
>friends.
>On reflection, this reaction is healthy because it forces me to step
>out of
>my own immediaate anguish, but it puzzles me too. Is it just a
>female
>response? do we revert to some innate nurturing role in situations
>like
>this? Do blokes feel/do it too?
>
=========================================================================
Date: Sat, 12 Jun 1999 05:55:27 EDT
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Clare Wilson <[log in to unmask]>
Subject: AFGHAN to be RAFFLED
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Sandy: Forgive my lack of expertise here, but does the navy blue border
of two rows single crochet need to be included in the 7X7 overall dimension?
OR, do we complete the 7X7 and then add the 2 rows of border?
Clare Wilson
=========================================================================
Date: Sat, 12 Jun 1999 06:14:38 -0700
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: David and Sandra Norris <[log in to unmask]>
Subject: Re: AFGHAN to be RAFFLED
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit
Clare: You missed the updated post .. Please don't ask for forgiveness.
My daddy taught me that there are no such things as stupid questions. The
update was that the OVERALL piece should be 8 inches by 8 inches. Thanks
again for participating. I am looking forward to putting together all the
different squares and creating a story of with colors and different styles.
Sandy
----- Original Message -----
From: Clare Wilson <[log in to unmask]>
To: <[log in to unmask]>
Sent: Saturday, June 12, 1999 2:55 AM
Subject: AFGHAN to be RAFFLED
> Sandy: Forgive my lack of expertise here, but does the navy blue border
> of two rows single crochet need to be included in the 7X7 overall
dimension?
> OR, do we complete the 7X7 and then add the 2 rows of border?
> Clare Wilson
=========================================================================
Date: Sat, 12 Jun 1999 06:43:59 -0500
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Stan or Joan Snyder <[log in to unmask]>
Subject: A plea for your wiriting contributions:
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
> Hi,
>
> The Letting Go - A PD Story
>
> Well, what do you think? By now you will have had the chance to drop in on
> Jane and Marc's remarkable collection at
> http://www.parkinsonalliance.net/page1.htm , and will have formed your first
> opinions. Hopefully you agree with us that a book relating to and
> complimenting the art show is just crying out to be put together. As you
> are aware the book in question is well on its way to becoming a reality and
> we would like to tell you something of what is envisaged.
>
> First, while the book is inspired by, and relates to, the art show it will
> be able to stand in its own right.
>
> Second, the book will show the reader the reality of living with PD; from
> the fear, anger and physical incapacity to the spirit, fortitude and
> courage.
>
> Third, the book will comprise extracts from the art show together with
> poems, short stories, anecdotes, etc. which need not be specifically about
> Parkinson's Disease but must be clearly related to it in some way.
>
> Fourth, the contributions can be from any source, but it is envisioned that
> they will be primarily from PWP, carers, and family members and friends of
> PWP.
>
> Fifth, a large number of works have already been collected for probable
> inclusion in the book and a general appeal for submissions has been posted
> to the PD list.
>
> Thank you to those who have already responded.
>
> To those of you who have yet to respond, please do - we would really like to
> hear from you!
>
> Thanks,
Dennis Greenee, Margaret Tuchman, Joan Snyder, Jane Scott
=========================================================================
Date: Sat, 12 Jun 1999 08:06:53 -0700
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Don McKinley <[log in to unmask]>
Subject: Re: The Puppy and the Man with Parkinsons
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
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-----Original Message-----
From: MURPH23 <[log in to unmask]>
To: [log in to unmask] <[log in to unmask]>
Date: Friday, June 11, 1999 4:24 PM
Subject: Re: The Puppy and the Man with Parkinsons
>Great story
>Give her time she will come around, PEPPER did but I dont know how. It
>seems it just happened one day.
>
>
>
>MURPH23 lost in a small village in Arkansas
>how far are you from FAIRFIELD BAY
I.Y.Q. DON AND VIVIAN
[log in to unmask]
=========================================================================
Date: Sat, 12 Jun 1999 05:22:52 -0700
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Carole Hercun <[log in to unmask]>
Subject: Re: Faces,Writing & Connecticut Pigs
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
To Beth, Barb, & Sandy: It is such a universally feminine thing, to
want to be pretty-and another thing that PD robs from us-by stripping
our faces of the expressiveness that adds the spark of life. However, I
am trying to look on the bright side-assuming there is one...I have a
(female)boss who is 5 years younger than I am and who has spent a
fortune for chemical peels and boutox injections into her face to
paralyze the nerves and eliminate wrinkles, who is constantly
complaining that my lack of lines on my face makes me look younger than
her. Ironic, huh??
To Stan & Joan: Book sounds like a WONDERFUL idea. I'd love to make a
contribution. I'd help with the afghan, too, but I can't kinit or
crochet worth a damnn. To Don: Arkansas raxorbacks may be
tougher, but Connecticut pigs are smarter.
Carole 53?51/?45
_________________________________________________________
Do You Yahoo!?
Get your free @yahoo.com address at http://mail.yahoo.com
=========================================================================
Date: Sat, 12 Jun 1999 08:26:14 -0500
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: "Charles T. Meyer, M.D." <[log in to unmask]>
Subject: Re: Dyskinesia and STN
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Jane,
Thanks for your reply. It is interesting that you have had dyskinesia unrelated
to to the Surgery and the Sinemet. Is the dyskinesia worse with the Mirapex?
Like Dennis and Hans say Mirapex and Requip are not supposed to cause
dyskinesia but I have been around medicine long enough to be aware that there
is a often a difference between "supposed to cause" and "does cause". And I
learned the radio trick last week. Sometimes it is hard to find. but it does
work. The settings I think are pretty close together (if you are talking about
the spacing of the electrodes). If you are talking about pulse length I don't
know how long they are.
Good luck on your peer councilor training.
Charlie
JaneRoss wrote:
> Charles,
>
> I have had some light dyskinesia from time to time which seemed unrelated
> to my surgery and couldn't be related to Sinemet because I quit taking it a
> year and a half ago.
>
> Now I'm having multiple problems with mirapex even though I only take 1mg
> twice a day.
>
> I continue to be one sided due to my dead battery but hope to get some
> answers next weekend when I am up there for training to become a peer
> counselor for the surgery at OHSU.
>
> Wish I could be of more help to you as you find youe way .
>
> Sounds like you may have to wide of a setting but I'm not a Dr. or a
> professional. If you find the cause please let me know.
>
> TIP: Do you know how to tell wheither you are turned on or not? Use an AM
> radio set at the lowest frecrency below 540 and put it next to your
> stimulator and you will hear a static sound.
>
> jjjane
> http://www.geocities.com/soho/village/6263/pienet/people/hithross.html
--
******************************************************************************************
Charles T. Meyer, M.D.
Middleton (Madison), Wisconsin
[log in to unmask]
******************************************************************************************
=========================================================================
Date: Sat, 12 Jun 1999 09:09:21 -0500
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: "Charles T. Meyer, M.D." <[log in to unmask]>
Subject: Re: Dyskinesia and STN
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Hans,
Thank you for your reply and especially for the excellent report from
"Brain". My problem is that I have been taking almost no Sinemet ( perhaps a
1/4 or 1/2 tab / day for the past week ) or 2. I had been taking 22 mg of
sinemet/day prior to the stimulator being turned on, 3 weeks ago about 16
since and now down to 12 except for a day when I skipped most of it. Both
sides of the stimulator have been turned on and up simultaneously although at
different settings depending on how much I could tolerate. The experience of
the surgeons with STN is not great and it is quite possible that they have
set the stimulator too high too fast. You seem to indicate that slower
progression is the way to go with this as opposed to sudden marked change.
Hans do you have STN yourself and how were you started regarding settings.
I got a private e-mail from Pewter Dawkins saying that the setting should be
no more than about 1.6 (from memory) and the frequency much higher per Dr.
Pollak. I will get the full article from Brain and read it closely.
Thanks,
Charlie
Hans van der Genugten wrote:
> -----Oorspronkelijk bericht-----
> Van: Charles T. Meyer, M.D. <[log in to unmask]>
> Aan: [log in to unmask] <[log in to unmask]>
> Datum: vrijdag 11 juni 1999 2:57
> Onderwerp: Dyskinesia and STN
>
> Hi Charlie,
>
> >> severe dyskinesia even without meds (except requip) <<
>
> Agonists can NOT cause dyskinesia, l-dopa can.
> To fast withdrawal of l-dopa can also give dyskinesia.
> How much requip did you use before the STN?
> How much now?
> How much Sinemet before the STN?
> How much now?
>
> >> as my STN Stimulator has been turned up. <<
> Both sides?
> And how much of which meds are you told to take less for compensation?
>
> >> I presume this is a withdrawal from the requip <<
>
> NO. That would cause IMO cramps and OFF.
>
> >> ( I have taken only about 1000 mg total of Sinemet <<
>
> A day, I presume?
>
> >> he feels it is part of a withdrawal from sinemet or Requip.? <<
>
> Sinemet.
> Or still too much Sinemet compared with the too high upturned stimulator.
>
> Hans.
--
******************************************************************************************
Charles T. Meyer, M.D.
Middleton (Madison), Wisconsin
[log in to unmask]
******************************************************************************************
=========================================================================
Date: Sat, 12 Jun 1999 10:46:48 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: janet paterson <[log in to unmask]>
Subject: Re: How do I ? / get to PubMed from one of your PMID postings ?
In-Reply-To: <19990611224841.NMVV25382.mail.rdc1.az.home.com@cx44791-a>
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
hi all
At 15:51 1999/06/11 -0700, one of us wrote, in part:
>...I got to the page of the nih,
>but I do not know how to view the
>abstract or the article referred to.
>Please help with a "how to" ...
i'm glad you asked;
for some reason the "core" wwweb page address
[minus all the "search" gobbledeegook]
at the bottom of each PubMed abstract
that i post to the list
is this one:
The National Center for Biotechnology Information
<http://www.ncbi.nlm.nih.gov/>
if you want to go to PubMed and look at the abstract for yourself
go to the above wwweb address and then select "PubMed"
which takes you to the "real" PubMed page at:
Welcome to PubMed
<http://www.ncbi.nlm.nih.gov/PubMed/>
copy the PMID [PubMed IDentification] number of the article you are looking
for
into the search window
select "search"
and bob's yer uncle!
[or should be]
[once you've found the abstract you were looking for
an interesting option is "related articles"]
i'll post this message in the "newbie nook"
in the wwweb wwwinnebago for future reference
janet
the nosy digger
somewhat like those truffle snuffling pigs in italy
janet paterson
52 now / 41 dx / 37 onset
PO Box 171 Almonte Ontario K0A 1A0 Canada
a new voice http://www.geocities.com/SoHo/Village/6263/
[log in to unmask]
=========================================================================
Date: Sat, 12 Jun 1999 08:10:52 -0700
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: JaneRoss <[log in to unmask]>
Subject: Re: Dyskinesia and STN
In-Reply-To: <[log in to unmask]>
Mime-Version: 1.0
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Charles,
Come to think about it more, have decided that it might be surgery
related. Seems I haven't had any dyskinesia since my battery died.
Before our discussion I was assuming it was the Mirapex because that was
all I was taking. Now I'm not sure.
>Jane,
>
>Thanks for your reply. It is interesting that you have had dyskinesia
>unrelated
>to to the Surgery and the Sinemet. Is the dyskinesia worse with the Mirapex?
>Like Dennis and Hans say Mirapex and Requip are not supposed to cause
>dyskinesia but I have been around medicine long enough to be aware that there
>is a often a difference between "supposed to cause" and "does cause". And I
>learned the radio trick last week. Sometimes it is hard to find. but it does
>work. The settings I think are pretty close together (if you are talking about
>the spacing of the electrodes). If you are talking about pulse length I don't
>know how long they are.
>
>Good luck on your peer councilor training.
>
>Charlie
>
>--
>*******************************************************************************
>***********
>
>Charles T. Meyer, M.D.
>Middleton (Madison), Wisconsin
>[log in to unmask]
>*******************************************************************************
>***********
jjjane
http://www.geocities.com/soho/village/6263/pienet/people/hithross.html
=========================================================================
Date: Sat, 12 Jun 1999 18:55:34 +0200
Reply-To: [log in to unmask]
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Maryse Schild <[log in to unmask]>
Subject: Re: PMID: 10350920: Gait and PD: a conceptual model for an
augmented-reality based therapeutic device.
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How could one know more about those gait-enabling devices?
Maryse
janet paterson a écrit:
> Gait and Parkinson's disease:
> a conceptual model for an augmented-reality based therapeutic device.
>
> This chapter presents an augmented-reality based therapeutic device
> designed to overcome gait problems associated with Parkinson's Disease (PD).
>
> A normal model of gait is proposed followed by a model of Parkinsonian gait
> with the goal of construction of a gait enabling therapeutic device.
>
> The fundamental underlying tenet of the model is that vision pathology is
> responsible for the majority of Parkinsonian gait pathology.
>
> The basis for such a claim is the well documented phenomenon known as
> Kinesia Paradoxa, whereby in the presence of certain so-called visual cues
> a PD subject can be transformed from a totally immobile, helpless victim of
> this disease into a near normal walking individual.
>
> Several gait-enabling devices are also described.
>
> Stud Health Technol Inform 1998;58:200-8
> Riess TJ
> PMID: 10350920, UI: 99183550
> http://www.ncbi.nlm.nih.gov/
>
> janet paterson
> 52 now / 41 dx / 37 onset
> Postal: PO Box 171, Almonte, Ontario, K0A 1A0, Canada
> WebUrl: <http://www.geocities.com/SoHo/Village/6263/>
> E-mail: [log in to unmask]
=========================================================================
Date: Sat, 12 Jun 1999 17:07:55 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Camilla Flintermann <[log in to unmask]>
Subject: Re: caregiver spouses/hard decesions
In-Reply-To: <004001beb407$7d69a980$150c71cf@doublea>
Mime-Version: 1.0
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Thanks for the book suggestion-- I'm adding it to the resource list!
_________
>It's been awhile since I posted anything to the list. Lots of changes
>causing lots of stress. Many of us are being diagnoses in our late 30s to
>early 50s, at a time when a lot of our marriages are going into some new
>phases as well. I found an excellent resource book, "Surviving Your
>Spouse's Chronic Illness" by Chris McGonicle. It is well written, in
>simple terms, by caregivers who have been there. It covers the good, the
>bad and the ugly, and does it in a non-judgmental way. If you are a
>caregiver who doesn't have a support group, this book might help.
>If you are the spouse with the chronic illness, this book might help you
>understand some of what is going on, at least it did with me. It also makes
>you aware of some of the decisions you might need to think about in the
>future.
>I cant say I enjoyed reading this book, it made me cry, laugh, nod and
>agree, and want to say "no, that isn't right" etc. Its hard for me to read
>a book these days, the pages shake too bad. I read this one cover to cover
>without stopping. I hope this helps someone else
>bob
Camilla Flintermann, CG for Peter 81/70/55
Oxford, Ohio
http://www.newcountry.nu/pd/members/camilla/one.htm
<[log in to unmask]>
"Ask me about the CARE list for
Caregivers of Parkinsonians ! "
=========================================================================
Date: Sat, 12 Jun 1999 18:13:00 EDT
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Doug Lenhart <[log in to unmask]>
Subject: Contact info request
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I'm wanting to trade some information with Tom Reiss. If you are on the
listserve or if someone knows Dr. Reiss's E-mail, please reply to me at
[log in to unmask]
Dr. Doug Lenhart
=========================================================================
Date: Sun, 13 Jun 1999 00:31:42 +0200
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Hans van der Genugten <[log in to unmask]>
Subject: Re: Contact info request
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-----Oorspronkelijk bericht-----
Van: Doug Lenhart <[log in to unmask]>
Aan: [log in to unmask] <[log in to unmask]>
Datum: zondag 13 juni 1999 0:15
Onderwerp: Contact info request
Hello Doug,
>> I'm wanting to trade some information with Tom Reiss. If you are on the
listserve or if someone knows Dr. Reiss's E-mail, please reply to me at
[log in to unmask]
Dr. Doug Lenhart <<
I have forwarded your message to Tom Riess.
Hans.
=========================================================================
Date: Sat, 12 Jun 1999 15:55:39 -0000
Reply-To: Constance Tate <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Constance Tate <[log in to unmask]>
Subject: Fw: greetings
Comments: To: "kathy mathews." <[log in to unmask]>,
Kathy Matthews <[log in to unmask]>
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charset="iso-8859-1"
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-----Original Message-----
From: Constance Tate <[log in to unmask]>
To: kathy mathews. <[log in to unmask]>
Cc: [log in to unmask] <[log in to unmask]>
Date: Saturday, June 12, 1999 3:54 PM
Subject: greetings
hi kathy
just a few words to see how you are coming along.fair weather friends =
have a tendancy to wonder how to alter their feelings toward someone =
with an illness,it rather reminds me of the way single friends are at a =
before.also over the years i have watched couples ignore after even best =
friends get married and the single ones think they are now not =
interested in the same topics that were theirs before.the same with =
widows- former freinds drop them so they don't have to deal with an odd =
person and are afrid to tell the widow she can bring acompanion to even =
things out.
we humans are a funny lot so you have to have a sense of humor to =
survive what fate hands us.as long as we can find some little absurbity =
to laugh at even if it is at ourselves we will prevail.
up here in our mountains the trees are green and the dogwood are as =
large and pretty as can be.there really is no better place to live than =
anywhere in so cal keep your chin up.lets keep in touch
connie=20
=20
=20
=20
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<HTML>
<HEAD>
<META content=3Dtext/html;charset=3Diso-8859-1 =
http-equiv=3DContent-Type><!DOCTYPE HTML PUBLIC "-//W3C//DTD W3 =
HTML//EN">
<META content=3D'"MSHTML 4.72.3110.7"' name=3DGENERATOR>
</HEAD>
<BODY bgColor=3D#ffffff>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2><B>-----Original =
Message-----</B><BR><B>From:=20
</B>Constance Tate <<A=20
href=3D"mailto:[log in to unmask]">[log in to unmask]</A>><BR><B>To:=
=20
</B>kathy mathews. <<A=20
href=3D"mailto:[log in to unmask]">[log in to unmask]</A>=
><BR><B>Cc:=20
</B><A href=3D"mailto:[log in to unmask]">[log in to unmask]</A> =
<<A=20
href=3D"mailto:[log in to unmask]">[log in to unmask]</A>><BR><B>Dat=
e:=20
</B>Saturday, June 12, 1999 3:54 PM<BR><B>Subject:=20
</B>greetings<BR><BR></DIV></FONT>
<DIV><FONT color=3D#000000 size=3D2>hi kathy</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2> just a few words to see =
how you are=20
coming along.fair weather friends have a tendancy to wonder how to alter =
their=20
feelings toward someone with an illness,it rather reminds me of the way =
single=20
friends are at a before.also over the years i have watched couples =
ignore after=20
even best friends get married and the single ones think they are now not =
interested in the same topics that were theirs before.the same with =
widows-=20
former freinds drop them so they don't have to deal with an odd person =
and are=20
afrid to tell the widow she can bring acompanion to even things=20
out.</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2> we humans are a funny lot so =
you have to=20
have a sense of humor to survive what fate hands us.as long as we can =
find some=20
little absurbity to laugh at even if it is at ourselves we will=20
prevail.</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT><FONT size=3D2> up here =
in our=20
mountains the trees are green and the dogwood are as large and pretty as =
can=20
be.there really is no better place to live than anywhere in so cal keep =
your=20
chin up.lets keep in touch</FONT></DIV>
<DIV><FONT size=3D2> connie </FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV></BODY></HTML>
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=========================================================================
Date: Sat, 12 Jun 1999 19:05:53 -0500
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: "Nancy S. Shlaes" <[log in to unmask]>
Subject: Article on "Sleep Effect Found in Parksinson's Drugs"
MIME-Version: 1.0
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I came across an interesting (and somewhat frightening) article in the
NYTimes on June 10 withthe headline "Sleep Effect Found in Parkinson's
Drugs". The article can be found at
www.nytimes.com/yr/mo/day/news/national/science/hlth-parkinsons-drug.html.
The drugs discussed are Mirapex and Requip are the article reports
traffic accidents due to some somnolence due to these drugs
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<html>
I came across an interesting (and somewhat frightening) article in the
NYTimes on June 10 withthe headline <i>"Sleep Effect Found in Parkinson's
Drugs". </i>The article can be found at www.nytimes.com/yr/mo/day/news/national/science/hlth-parkinsons-drug.html.
<p>The drugs discussed are Mirapex and Requip are the article reports traffic
accidents due to some somnolence due to these drugs</html>
--------------3A816B767E0EE979F0074080--
=========================================================================
Date: Fri, 11 Jun 1999 17:29:38 -0500
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Linda Potter <[log in to unmask]>
Subject: Re: unhappy camper
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Life is short - eat dessert first!
Yours in faith that a cure will be found-
Linda Potter 50/49dx'd
Bilie - As a nurse I know that you have some major decisions to make
right now . There's nothing that I can do except let you know that I'm
praying for you. This is a personal decision that you will need to weigh
- the pros and cons are to considered. Do you have your power of attorney
for health care done? If so, review what you had decided - if not, now's
the time to get one done. Investigate what a feeding tube would involve,
how it would affect you physically and emotionally. Think about what you
can tolerate. I'm rambling, I'm sorry, but this subject is one that I
know I will also need to address in my own future. My mortality is
evident to me, but is a difficukt concept for some to come to grips with.
Rest assured, you will be watched over by a power greater thaan any of
us. God bless you, Billie.there is no right or wrong decision. Linda
=========================================================================
Date: Sat, 12 Jun 1999 22:10:02 -0700
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: David and Sandra Norris <[log in to unmask]>
Subject: A SECOND PLEA
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Dear List Family,
This is a second plea for any and all crocheters out there to help with an
afghan of collective 8 by 8 inch squares, any color, any stitch, with a
single crocheted navy border. Send all squares to : 210 Berry St.
Statesville, NC 28677
After I receive the squares I will put together the afghan and raffle it
while I am in Chillicothe,Illinois visiting Joan Snyder. All monies will be
donated to research.
I am anxious to see the finished piece. All the many colors that represent
all the many individuals affected with pd. Thanks again for your time....
Sandy Norris
=========================================================================
Date: Sat, 12 Jun 1999 22:29:57 -0700
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: ERVIN J MCCARTHY <[log in to unmask]>
Subject: Re: Article on "Sleep Effect Found in Parksinson's Drugs"
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Nancy, I tried pulling up the page on sleepy effects but got a "page =
could not be found" Could you please give a summary of the article about =
Mirapex? Thank You
[log in to unmask]
----- Original Message -----=20
From: Nancy S. Shlaes=20
To: [log in to unmask]
Sent: Saturday, June 12, 1999 5:05 PM
Subject: Article on "Sleep Effect Found in Parksinson's Drugs"
I came across an interesting (and somewhat frightening) article in the =
NYTimes on June 10 withthe headline "Sleep Effect Found in Parkinson's =
Drugs". The article can be found at =
www.nytimes.com/yr/mo/day/news/national/science/hlth-parkinsons-drug.html=
.=20
The drugs discussed are Mirapex and Requip are the article reports =
traffic accidents due to some somnolence due to these drugs=20
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<HTML><HEAD>
<META content=3D"text/html; charset=3Diso-8859-1" =
http-equiv=3DContent-Type>
<META content=3D"MSHTML 5.00.2314.1000" name=3DGENERATOR>
<STYLE></STYLE>
</HEAD>
<BODY bgColor=3D#ffffff>
<DIV><FONT size=3D2>Nancy, I tried pulling up the page on sleepy effects =
but got a=20
"page could not be found" Could you please give a summary of the article =
about=20
Mirapex? Thank You</FONT></DIV>
<DIV> </DIV>
<DIV><A=20
href=3D"mailto:[log in to unmask]">[log in to unmask]</A>=
</DIV>
<BLOCKQUOTE=20
style=3D"BORDER-LEFT: #000000 2px solid; MARGIN-LEFT: 5px; MARGIN-RIGHT: =
0px; PADDING-LEFT: 5px; PADDING-RIGHT: 0px">
<DIV style=3D"FONT: 10pt arial">----- Original Message ----- </DIV>
<DIV=20
style=3D"BACKGROUND: #e4e4e4; FONT: 10pt arial; font-color: =
black"><B>From:</B>=20
<A href=3D"mailto:[log in to unmask]" =
[log in to unmask]>Nancy S.=20
Shlaes</A> </DIV>
<DIV style=3D"FONT: 10pt arial"><B>To:</B> <A=20
href=3D"mailto:[log in to unmask]"=20
=
[log in to unmask]>[log in to unmask]</A> =
</DIV>
<DIV style=3D"FONT: 10pt arial"><B>Sent:</B> Saturday, June 12, 1999 =
5:05=20
PM</DIV>
<DIV style=3D"FONT: 10pt arial"><B>Subject:</B> Article on "Sleep =
Effect Found=20
in Parksinson's Drugs"</DIV>
<DIV><BR></DIV>I came across an interesting (and somewhat frightening) =
article=20
in the NYTimes on June 10 withthe headline <I>"Sleep Effect Found in=20
Parkinson's Drugs". </I>The article can be found at <A=20
=
href=3D"http://www.nytimes.com/yr/mo/day/news/national/science/hlth-parki=
nsons-drug.html">www.nytimes.com/yr/mo/day/news/national/science/hlth-par=
kinsons-drug.html</A>.=20
<P>The drugs discussed are Mirapex and Requip are the article reports =
traffic=20
accidents due to some somnolence due to these drugs=20
</P></BLOCKQUOTE></BODY></HTML>
------=_NextPart_000_000E_01BEB523.19E3E0C0--
=========================================================================
Date: Sun, 13 Jun 1999 04:48:16 +0200
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Hans van der Genugten <[log in to unmask]>
Subject: Re: Dyskinesia and STN
MIME-Version: 1.0
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-----Oorspronkelijk bericht-----
Van: Charles T. Meyer, M.D. <[log in to unmask]>
Aan: [log in to unmask] <[log in to unmask]>
Datum: zaterdag 12 juni 1999 16:13
Onderwerp: Re: Dyskinesia and STN
Charlie,
>> report from "Brain". <<
IMO the article says that a "wrong" combination of voltage and pulse can
cause dyskinetic-like movements.
>> The experience of the surgeons with STN is not great and it is quite
possible that they have set the stimulator too high too fast. <<
If I were your doctor that has little experience, I would have chosen a
slower approach.
>> Hans do you have STN yourself <<
NO, but I know a few PWP with DBS and one with a bi-lateral DBS of the STN.
He could -within a certain range set by the doctor- adjust his settings. Is
that possible for you?
>> no more than about 1.6 (from memory) and the frequency much higher per
Dr. Pollak. <<
I think that is individually different, so doesn't have to be right
applicable for you.
If you want to establish the cause of the dyskinesias:
[ IF you are going to do this, I STRONGLY advise you to consult your neuros
FIRST]
Day one: Left stimulator OUT, riight one ON, take meds and see where
dyskinesias appear.
Day two: Right one OUT, left one ON, take meds and see again what happens.
Day three: Both OUT (as long as you can sustain that) , take meds and see.
Day four: Both ON, NO meds and see.
DAy five: Left ON, rIGht OUT, NO meds.
DAy six: Right ON, Left OUT, NO meds.
Through combining the results, you can see what (combination) is the cause
of the dyskinesias.
Perhaps this is easier: you insist with your neuros:
1 ) they ask for advise from THEIR teachers-neuros.
2) adjust your settings sooner as planned , or at least let them explain
how this is caused.
NB: last friday there was a meeting of doctors from france, holland and
belgium about DBS of the STN etc.
I was invited but could not attend because of another appointment. I shall
ask if there are any transcripts available.
Hans.
=========================================================================
Date: Sat, 12 Jun 1999 22:05:29 -0500
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Elizabeth Meeks <[log in to unmask]>
Subject: Re: A SECOND PLEA
In-Reply-To: David and Sandra Norris <[log in to unmask]>'s message of Sat, 12
Jun 1999 22:10:02 -0700
Content-Type: Text/Plain; Charset=US-ASCII
Content-Transfer-Encoding: 7Bit
MIME-Version: 1.0 (WebTV)
I knit and will be happy to make a square for you. When do you need it ?
Liz M
Texas USA
=========================================================================
Date: Sat, 12 Jun 1999 19:55:53 -0000
Reply-To: Constance Tate <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Constance Tate <[log in to unmask]>
Subject: Fw: greetings
Comments: To: Kathy Matthews <[log in to unmask]>
MIME-Version: 1.0
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boundary="----=_NextPart_000_005C_01BEB50D.B03F66E0"
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-----Original Message-----
From: Constance Tate <[log in to unmask]>
To:Kathy Matthews <[log in to unmask]>
Cc: constance te <[log in to unmask]>
Date: Saturday, June 12, 1999 3:55 PM
Subject: Fw: greetings
-----Original Message-----
From: Constance Tate <Cc: [log in to unmask] Subject: greetings
hi kathy
just a few words to see how you are coming along.fair weather friends =
have a tendancy to wonder how to alter their feelings toward someone =
with an illness,it rather reminds me of the way single friends are at a =
before.also over the years i have watched couples ignore after even best =
friends get married and the single ones think they are now not =
interested in the same topics that were theirs before.the same with =
widows- former freinds drop them so they don't have to deal with an odd =
person and are afrid to tell the widow she can bring acompanion to even =
things out.
we humans are a funny lot so you have to have a sense of humor to =
survive what fate hands us.as long as we can find some little absurbity =
to laugh at even if it is at ourselves we will prevail.
up here in our mountains the trees are green and the dogwood are as =
large and pretty as can be.there really is no better place to live than =
anywhere in so cal keep your chin up.lets keep in touch
connie=20
=20
=20
=20
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http-equiv=3DContent-Type><!DOCTYPE HTML PUBLIC "-//W3C//DTD W3 =
HTML//EN"><!DOCTYPE HTML PUBLIC "-//W3C//DTD W3 HTML//EN">
<META content=3D'"MSHTML 4.72.3110.7"' name=3DGENERATOR>
</HEAD>
<BODY bgColor=3D#ffffff>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2><B>-----Original =
Message-----</B><BR><B>From:=20
</B>Constance Tate <<A=20
href=3D"mailto:[log in to unmask]">[log in to unmask]</A>><BR><B>To:=
</B>Kathy=20
Matthews <<A=20
href=3D"mailto:[log in to unmask]">[log in to unmask]</=
A>><BR><B>Cc:=20
</B>constance te <<A=20
href=3D"mailto:[log in to unmask]">[log in to unmask]</A>><BR><B>Dat=
e:=20
</B>Saturday, June 12, 1999 3:55 PM<BR><B>Subject: </B>Fw:=20
greetings<BR><BR></DIV></FONT>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2><B>-----Original =
Message-----</B><BR><B>From:=20
</B>Constance Tate <<B>Cc: </B><A=20
href=3D"mailto:[log in to unmask]">[log in to unmask]</A> <B>Subject:=20
</B>greetings<BR><BR></DIV></FONT>
<DIV><FONT color=3D#000000 size=3D2>hi kathy</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2> just a few words to see =
how you are=20
coming along.fair weather friends have a tendancy to wonder how to alter =
their=20
feelings toward someone with an illness,it rather reminds me of the way =
single=20
friends are at a before.also over the years i have watched couples =
ignore after=20
even best friends get married and the single ones think they are now not =
interested in the same topics that were theirs before.the same with =
widows-=20
former freinds drop them so they don't have to deal with an odd person =
and are=20
afrid to tell the widow she can bring acompanion to even things=20
out.</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2> we humans are a funny lot so =
you have to=20
have a sense of humor to survive what fate hands us.as long as we can =
find some=20
little absurbity to laugh at even if it is at ourselves we will=20
prevail.</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT><FONT size=3D2> up here =
in our=20
mountains the trees are green and the dogwood are as large and pretty as =
can=20
be.there really is no better place to live than anywhere in so cal keep =
your=20
chin up.lets keep in touch</FONT></DIV>
<DIV><FONT size=3D2> connie </FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV></BODY></HTML>
------=_NextPart_000_005C_01BEB50D.B03F66E0--
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Date: Sat, 12 Jun 1999 23:51:03 -0400
Reply-To: [log in to unmask]
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: David Silverman <[log in to unmask]>
Subject: [Fwd: Re Welcome]
MIME-Version: 1.0
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Message-ID: <[log in to unmask]>
Date: Fri, 11 Jun 1999 18:09:46 -0400
From: David Silverman <[log in to unmask]>
Reply-To: [log in to unmask]
X-Mailer: Mozilla 4.5 [en]C-DIAL (Win95; U)
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To: "[log in to unmask]" <[log in to unmask]>
Subject: Re Welcome
Content-Type: text/plain; charset=us-ascii
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Barbara:
Thank you for your Welcome message upon my subscribing to the
List. Actually, I was a member before but just had to rejoin because my
computer wiped out my subscription.
In any case, I am a Caregiver for my dear friend, Muriel
(66/ 4 1/2). She had been very active but while working started to note
her handwriting getting smaller and smaller. This turned out to be the
first symptom. Ultimately, she started occasionally falling when one of
her feet would stick to the ground while walking. She took a bad fall in
the kitchen last year and did no damage but after the one week
hospitalization found that her legs had become rubbery. She now uses a
power wheelchairand has some aides assistiing her during the week--with
dressing and bathroom routines. She also developed swallowing problems
and I have had to do the Heimlich manoever on her about eight times in
the last two years. However, she is now very careful and no longer eats
foods that are liable to stick. Her hands do not work too well and as a
result of finger contractions she often drops food and takes a long time
to eat. However, we can now joke about it and I sometimes ask her for
her ETA for dessert. We both find that Humor is a tremendous help. I
subscribe to some Humor lists but sometimes we can just clown
around---even if its "Black" humor. She will be seeing a new, local
neurologist in a few weeks and is expected to get
speech and swallowing tests and therapy and also physical therapy. We
are starting to go to local Parkinson lectures and support groups and I
believe this will be very helpful---I hope. I tell her about the letters
to the List and she finds them very instructive and helpful .
I wish everybody well and thank you all for your
letters and helpful comments and information.
David
Silverman
--------------F9C74220AE34720F7FDA3D4C--
=========================================================================
Date: Sat, 12 Jun 1999 23:55:06 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: john bjork <[log in to unmask]>
Subject: Weekly Parkinsaw, MI Report: A View from the Lighter Side of PD,
June 13, 99
MIME-Version: 1.0
Content-Type: text/plain; charset=iso-8859-1
Content-Transfer-Encoding: 8bit
Dateline: Parkinsaw, MI
A View from the Lighter Side
June 13, 1999
Welcome to the imaginary community for Parkinsonians situated in
Michigan's Upper Peninsula. We're a friendly town, love to have
visitors, and stay busy with a variety of activities. We have a
world-class Parkinson's Disease medical facility, great restaurants,
entertainment, fishing, hunting camping and more. Our Chamber of
Commerce is delighted you are paying us a visit. So, come on in
stranger, pull up a barstool and let's get acquainted.
Heat Wave in Early June?
I don't know about where you live but here in the Upper Peninsula it's
supposed to be relatively mild this early in the year. Thanks to that
La Nina weather condition, however, it's been near 90 degrees all week,
and its still spring. Is there any chance of the icebergs melting up in
the Arctic? Weather patterns are changing that much is clear. Maybe
I'll go down to Miami for the Fourth of July. It would be a shame to
miss the Park-A-Thon, though. They've added a "Rolling Over in Bed"
competition which should be fun to watch.
Another Invention from Parkinsaw Entrepreneurs
The other day over at the Northern Lights microbrewery I met with Bobby
Benson, a long-time resident of Parkinsaw, about his new business
opportunity. Bobby is 65, a true mountain of a man, with hands like
they could rip the head right off your shoulders. He is full-bearded,
with a booming baritone voice. He described his invention as if he were
referring to a secret lover. "John," he said, "there is nothing on the
market to rival this new product. We're completely confident you'll
decide to join us once you realize the awesome potential here." "Bobby,
I'm due at the golf course in 30 minutes. Tell me what this thing is,
how much it costs, and why I would want one."
Bobby Benson took a deep breath, and started in: "John, have you ever
gotten up in the middle of the night, half asleep, and had to use the
bathroom?" Since I grew up here on earth I confessed that I had. "Have
you ever had to use the commode during one of these situations?" Again,
I revealed that I had, but I was confused as to where he was going with
this. "Well, what would have happened if you had tried to sit on the
commode, but the seat was up and you didn't notice it. Come on now,
what would have happened?" Suddenly, the light bulb went off above my
head just like in a cartoon. I had heard of this problem where if you
live with a significant other, you'd die of embarrassment, or if you
live alone, well, most of us don't ever even contemplate the horror of
enduring that experience. My throat went dry, and my tremor started up
right on cue as I immediately realized the pervasiveness of the problem
area, and the attractiveness of a product that could resolve it.
Product? What was the product! What was he selling?
I told Bobby that I got the picture, but what was the product he had
invented? "Listen to me John. I've developed a device that
automatically sounds an alarm if you attempt to sit on the commode if
the seat is not in place. Did you hear what I said? You and millions
more will never have to worry about 'Accidental Commode Entrapment
Syndrome' again! And John, listen to me now. This is the perfect
product for Parkinsaw and for Parkinsonians! Why we're always
forgetting to put the toilet seat down where it belongs. It's a product
that will be purchased by every individual suffering from this
devastating disease. Alzheimer's patients too! They need this product
even more than we Parkinsonians do. And, the clincher, my friend, is
that women are always complaining about the man leaving the seat up.
Well, this little baby can be set to sound an alarm right after use. If
the seat is not immediately lowered into place, a pleasant bell-tone
sounds reminding the person to lower the seat into place." "Bobby," I
said, "In my humble opinion, you've got a winner. Get me the
particulars, and I'm sure I'll want in. It's a great idea.
Incidentally, what do you call the product?" Bobby said: "I call it
the "Seat-B-Down. And I've already thought up our slogan: 'You'll
Never Frown with Seat-B-Down'." We shook hands, and I went off for my
golf match with that catchy refrain ringing in my head. What a country!
The Golf Outing
I read somewhere that golf is the ideal game for Parkinsonians. The
game demands astounding hand-eye coordination, strength, it uses many of
the major muscle groups, it's great exercise, and it gets you outside.
So, what's not to like? Well, the benefit of the game of golf to a
particular individual depends to a great extent on the person's
emotional make-up. If you're frustrated easily, get angry at stupid
mistakes you make, go totally ballistic when you miss a putt that would
have given you the lowest score you've ever had, and become depressed
and upset when you cannot for the life of you remember from one day to
the next how to hit the stupid ball, and you're a Parkie, you're in for
some long, very unpleasant afternoons. Here's a true story of one such
occasion:
Arnie Bergman practiced all week on the hitting range so as not to make
a fool of himself when teeing off at the annual Parkinson's Disease
Outing. His practice drives off the tee have been awesome, long and
straight, beauties to behold. Sunday arrives, and he joins his foursome
at the Club. The other three players tee off, knocking the ball out of
sight right down the middle of the fairway. They all watch him as he
steps up to the tee. Arnie begins his ritual of addressing the ball,
when he feels the first tickle of his tremor kicking in. How could this
happen, he wonders, he took his pills on time! The club is shaking now,
as he tries to line-up the ball. Suddenly, he's completely forgotten
every single lesson, article, or insight he's ever-learned about golf
and teeing off. He's rigid and tight, and as he looks down at that
little white ball, he realizes he has about the same chance of hitting
it like his buddies as walking on water.
Arnie Bergman decides just to swing and not worry about it, before the
tremor gets worse. He swings. Strike one. The ball didn't even move.
He goes through the ritual again, the tremor increases, as his partners
get nervous. He swings again. Strike two, as he hits the ground six
inches behind the ball, sending a shower of sod and grass all over the
tee. Now the emotional vectors are changing. He's not only nervous
now, he's in a white rage, which exacerbates his tremor. He's coming
apart and he knows it shows. He grips the club like a war axe, and in a
crazed, lurching action, swings like a mad man, hitting the ball
straight up into the air, about 10 feet from the tee. He's so enraged
now, he's babbling incoherently to himself. He tees up another ball.
Exhausted, he somehow remembers a lesson where he was taught to relax
when teeing off. His tremor is now world-class, so a complete swing is
out of the question. He stiffly addresses the ball, and takes a
half-swing, making contact with the ball as is sails straight ahead
about ten yards, rolling short of the ladies tee.
But, wait a minute here. It's a nice day, the beer is cold, and maybe
if he relaxes a bit he'll be able to recover. Maybe his drugs were
delayed by that Egg-McMuffin he had for breakfast, and haven't kicked in
yet. And, after all, there are still 17 more chances to show everyone
how good he is, and how all that practice paid off. That's the ticket!
Arnie suddenly senses a rush of confidence as he feels the tremor ease
away now. He pictures his next ball soaring down range about 200
yards. But what if I shank it? What if I miss-hit the ball again? As
he approaches the ladies tee, looking for his last ball, the worry and
anxiety start up again, and he feels strangely alone and vulnerable. He
wishes now he had bought that new set of clubs. "C'mon Arnie," Tom
Shelton shouts, "Hit the thing and let's get moving. You're holding
things up. Returning to the men's tee, he lines up the ball, and
somehow executes a near-perfect swing, sending the ball down the fairway
a respectable 180 yards. "Good one, Arnie, that'll play." He smiles
with pride, knowing all along it was just a temporary bout of anxiety.
It's a great day! What a great game! "Get behind me, you stupid
disease," he mutters to himself, I won't be seeing you anymore today!"
Well, at least not until then next shot, he worries, as he climbs into
the golf cart and disappears over the hill to look for his ball.
So, that's it for this week my friends. Dusk is settling in up here,
the deer are stirring, and the mosquitoes are remarkably plentiful
given the low water levels and lack of rain. So, I'm off to the
Northern Lights for a couple of Levolagers, and a meeting with Dudley
Doowrong. Incidentally, I shot a 96 for nine today. I should stay with
shooting baskets. Golf! As has been said, golf is a good walk
spoiled. Now, don't forget : Don't let nasty old PD rob you of your
smile, laughter and sense of humor granted to you by God. These
qualities belong to us. Let's fight together to keep them.
John Bjork
Parkinsaw, MI
"We May be Slow, But We're Not Too Sure"
=========================================================================
Date: Sun, 13 Jun 1999 00:16:59 EDT
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Clare Wilson <[log in to unmask]>
Subject: Re: A SECOND PLEA
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Sandy, I'm on my second square. It's fun alternating stitches for effect,
and to keep both sides as the 'right' side. I'm knitting the square and
will crochet the navy border last. First I must learn to crochet.
Clare Wilson
=========================================================================
Date: Sun, 13 Jun 1999 05:53:46 -0700
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: David and Sandra Norris <[log in to unmask]>
Subject: Re: A SECOND PLEA
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit
OK Clare keep up the good work glad you are having fun!
sandy
----- Original Message -----
From: Clare Wilson <[log in to unmask]>
To: <[log in to unmask]>
Sent: Saturday, June 12, 1999 9:16 PM
Subject: Re: A SECOND PLEA
> Sandy, I'm on my second square. It's fun alternating stitches for effect,
> and to keep both sides as the 'right' side. I'm knitting the square and
> will crochet the navy border last. First I must learn to crochet.
> Clare Wilson
=========================================================================
Date: Sun, 13 Jun 1999 05:55:47 -0700
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: David and Sandra Norris <[log in to unmask]>
Subject: Re: A SECOND PLEA
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit
Thanks a million. I need it by June 30 th. any stitch, any color, 8 x 8
inch square, navy border. Any more questions just ask.
Sandy
----- Original Message -----
From: Elizabeth Meeks <[log in to unmask]>
To: <[log in to unmask]>
Sent: Saturday, June 12, 1999 8:05 PM
Subject: Re: A SECOND PLEA
> I knit and will be happy to make a square for you. When do you need it ?
>
> Liz M
> Texas USA
=========================================================================
Date: Sun, 13 Jun 1999 08:01:07 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Hilary Blue <[log in to unmask]>
Subject: Re: A SECOND PLEA
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Is anybody from your part of the world coming to the PAN forum? Because if
there is, I could collect up the squares from this area and send them along to
you with such a person.
BTW, who IS going to the Forum?
hilary blue
David and Sandra Norris wrote:
>
> OK Clare keep up the good work glad you are having fun!
> sandy
>
> ----- Original Message -----
> From: Clare Wilson <[log in to unmask]>
> To: <[log in to unmask]>
> Sent: Saturday, June 12, 1999 9:16 PM
> Subject: Re: A SECOND PLEA
>
> > Sandy, I'm on my second square. It's fun alternating stitches for effect,
> > and to keep both sides as the 'right' side. I'm knitting the square and
> > will crochet the navy border last. First I must learn to crochet.
> > Clare Wilson
=========================================================================
Date: Sun, 13 Jun 1999 08:34:17 -0500
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Billie Cook <[log in to unmask]>
Subject: where are you
Comments: To: [log in to unmask]
Content-Type: Text/Plain; Charset=US-ASCII
Content-Transfer-Encoding: 7Bit
MIME-Version: 1.0 (WebTV)
is anybody else not getting messages? know it's weekend but usually a
few get through...but today only 3. sure miss 'em.
Billie Cook
=========================================================================
Date: Sun, 13 Jun 1999 09:36:01 EDT
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Clare Wilson <[log in to unmask]>
Subject: Re: where are you
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Billy, I just found three this morning, also. Have no idea what's going
on.
Clare Wilson
=========================================================================
Date: Sun, 13 Jun 1999 10:02:58 EDT
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: KEn Becker <[log in to unmask]>
Subject: Re: where are you
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Email is VERY light today, i bet it is stacking up somewhere, maybe in Don
McKinley's attic, or in a back room at the NorthernLights, in Parkinsaw? OR,
maybe a PIG ate the email? LOL
Ken B
=========================================================================
Date: Sun, 13 Jun 1999 10:12:56 EDT
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Bonnie Rowley <[log in to unmask]>
Subject: Re: "Fund the Cure" stamps
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
I think this is nice - so why can't it be done for PD (also)???
There are cancer drives, etc., giving cancer regular attention. The Post
Office should not be singling out for just 1 "disease".
In a message dated 6/5/1999 3:49:30 AM Eastern Daylight Time,
[log in to unmask] writes:
> > -------Special Note From Fund The CURE-------
> >
> > Help raise $16,000.000 for breast cancer research
> >
> > The US Postal Service recently released a new stamp "Fund the Cure" to
> help
> > fund breast cancer research.
> >
> > The stamp has a face value of $.33 but costs $.40 with the additional
$.07
> > all going to the research fund. A book of stamps costs $8.00 instead of
> the
> > usual $6.60. If all the stamps are sold an incredible $16,000.000 will be
> > raised for this really vital research.
> >
> > To support this endeavor please take the time to purchase these
> special"Fund
> > the Cure" stamps .
> >
> > Breast Cancer is not just a woman's issue!
>
>
=========================================================================
Date: Sun, 13 Jun 1999 10:24:04 EDT
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Bonnie Rowley <[log in to unmask]>
Subject: Re: where are you
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Yea, the PIG ate 'em!
In a message dated 6/13/1999 10:04:25 AM Eastern Daylight Time,
[log in to unmask] writes:
> Email is VERY light today, i bet it is stacking up somewhere, maybe in Don
> McKinley's attic, or in a back room at the NorthernLights, in Parkinsaw?
OR,
> maybe a PIG ate the email? LOL
> Ken B
>
=========================================================================
Date: Sun, 13 Jun 1999 08:31:51 -0600
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: "Kathrynne Holden, MS,RD" <[log in to unmask]>
Organization: Five Star Living, Inc.
Subject: Re: where are you
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
My e-mail has been extremely light since yesterday noon. I've been
wondering if the latest virus has caused some serious trouble?
Kathrynne
KEn Becker wrote:
>
> Email is VERY light today, i bet it is stacking up somewhere, maybe in Don
> McKinley's attic, or in a back room at the NorthernLights, in Parkinsaw? OR,
> maybe a PIG ate the email? LOL
> Ken B
--
Kathrynne Holden, MS, RD
Medical nutrition therapy
Author: "Eat well, stay well with Parkinson's disease"
"Parkinson's disease: assessing and managing unique nutrition needs"
http://www.nutritionucanlivewith.com/
=========================================================================
Date: Sun, 13 Jun 1999 09:37:11 -0500
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Nita Andres <[log in to unmask]>
Subject: Re: "Fund the Cure" stamps
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Bonnie, I am handing out petitions to fund the Udall bill and writing my senators
and legislator about this funding. I don't know how many people on this list are
able to be that politically active. It doesn't take hard physical work ,( except
walking about the neighborhood, that is difficult because if it is not really hot
, it is raining here ) but it takes an amazing amount of talking to explain why
this is necessary, It is really difficult because even our MD friends did not
recognize that my husband has Parkinson's disease ( no tremor ) and they are not
neurologists.
I wonder if all of us wrote about the stamps , if it would do any good. Nita
Bonnie Rowley wrote:
> I think this is nice - so why can't it be done for PD (also)???
> There are cancer drives, etc., giving cancer regular attention. The Post
> Office should not be singling out for just 1 "disease".
>
> In a message dated 6/5/1999 3:49:30 AM Eastern Daylight Time,
> [log in to unmask] writes:
>
> > > -------Special Note From Fund The CURE-------
> > >
> > > Help raise $16,000.000 for breast cancer research
> > >
> > > The US Postal Service recently released a new stamp "Fund the Cure" to
> > help
> > > fund breast cancer research.
> > >
> > > The stamp has a face value of $.33 but costs $.40 with the additional
> $.07
> > > all going to the research fund. A book of stamps costs $8.00 instead of
> > the
> > > usual $6.60. If all the stamps are sold an incredible $16,000.000 will be
> > > raised for this really vital research.
> > >
> > > To support this endeavor please take the time to purchase these
> > special"Fund
> > > the Cure" stamps .
> > >
> > > Breast Cancer is not just a woman's issue!
> >
> >
=========================================================================
Date: Sun, 13 Jun 1999 11:06:19 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Hilary Blue <[log in to unmask]>
Subject: Re: where are you
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Porky Porkinson the Parkinson Pig is quick to take offense! He does not eat
mail, he says, not even Email
Any way he had such a hearty meal yesterday- at MAIN STREET BAGEL, in Fairfax,
Va. This remarkable mom and pop style eating place has the most delicious
bagels in the area - and all their food is home made. Porky and I were eating
with a group of friends one day , and I was telling the ladies about PENNNIES
FOR PARKINSON'S, When the proprietress approaches me and says " are you
collecting for Parkinson's?" Yes I say. 'can we take part" she says. 'We could
collect money here in the restaurant" SHE asked ME !!!! And yesterday she gave
me two huge bags of money = well I have still to count it, but its worth it
.Apparently she has a friend with PD.
So, Porky had quite enuff to eat - and doisnt need any email! IN his spare
time he is trying to learn to crochet. Porquetta is sticking to knitting she
likes making squares on the diagonal - starting with one stitch, and
increasing one in every row - that way you can be sure of having an exact
square, and measuring the side accurately, she says.
Hilary Blue ( on beholf of Porky and Porquetta Porkinson)
*********AAAAAAAAAAAAAA
Bonnie Rowley wrote:
>
> Yea, the PIG ate 'em!
>
> In a message dated 6/13/1999 10:04:25 AM Eastern Daylight Time,
> [log in to unmask] writes:
>
> > Email is VERY light today, i bet it is stacking up somewhere, maybe in Don
> > McKinley's attic, or in a back room at the NorthernLights, in Parkinsaw?
> OR,
> > maybe a PIG ate the email? LOL
> > Ken B
> >
=========================================================================
Date: Sun, 13 Jun 1999 11:13:44 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Hilary Blue <[log in to unmask]>
Subject: Pope in Poland
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Did anybody else take note of the report that the Pope suffered a bad fall
yesterday. It was reported tha he needed several stitches. No cause or reason
was given, but it was stated that "he suffers form Parkinson's" It was just
mentiooned again on the radio.
Hilary B Lue
=========================================================================
Date: Sun, 13 Jun 1999 08:10:46 -0700
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Carole Hercun <[log in to unmask]>
Subject: Non-PD: THE PIGS ARE COMING!Or When Pigs fly...
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
First of all, if any pigs ate the missing e-mail,
which has been light here too, it must have been Don's
Alabama razorbacks. My Connecticut pigs would never
stoop so low. Speaking of which, I am missing two
planeloads of pigs. I sent them off, fur coats on
their backs,(because John didn't mention the fact that
it was
100 degrees in Parkinsaw and we naturally assumed
Alaska and Parkinsaw were synonomous,) squealing and
squabbling because they couldn't sit next to the Pope,
to sanctuary in the piggy paradise that is
Parkinsaw...
And they have disappeared. Has anyone sighted any
flying pigs? Not winged pigs. Those are Cincinnati
piggy "angels". I'm talking about pigs with
parachutes.Please answer as I am frantic with worry.
Concerned Carole in Connecticut
P.S. Is Parkinsaw anywhere near the Bermuda
triangle??
_________________________________________________________
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=========================================================================
Date: Sun, 13 Jun 1999 11:23:23 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: "Teresa V. Bohuszewicz" <[log in to unmask]>
Subject: Re: The Puppy and the Man with Parkinsons
In-Reply-To: <[log in to unmask]>
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I enjoyed this.
Teresa, Daughter of Mama (57/43/38)
-----Original Message-----
From: Parkinson's Information Exchange
[mailto:[log in to unmask]]On Behalf Of George J. Lussier
Sent: Friday, June 11, 1999 8:59 PM
To: [log in to unmask]
Subject: The Puppy and the Man with Parkinsons
THE PUPPY AND THE MAN WITH PARKINSONS
Once upon a recent time there was a puppy of mixed breed including
lab and pit bull . And there was a man ; he to was of mixed breed
in a sense but of more importance he was 60 years old and had Parkinsons
Disease, a debilitating neurological disease that more than likely
would leave him in a nursing home and nearly did. A few years ago
he was in horrible shape and spirits but through the wisdom of his
neurologist and his own unwillingness to give up he chose to go the
sugical route. Today he is doing well although given his decision
to take on a puppy you wonder about his mental health.
But the Man with Parkinsons thought long and hard about taking on
such a long-term commitment. He is a practical man, a realist, who
thought he had allocated enough time, energy, money and true love.
To his credit he had studied the litter of nine since the day of their
entrance. This was no whimsical decision but it was an erroneous one.
Whatever he had allocated wasn't anywhere near enough as he found
out when the seventh week rolled around and the puppy seemed ready
to move away from his family.
The puppy is black and white in color with one black eye and one
albino-like light eye. She did not respond to any name including her
given name of "Pinto" or "Crash" as the Man with Parkinsons was fond
of calling her. Within 6 months she will weigh in at about 65 lb.
Even as he type out this story she is asleep close by he can almost
see her growing. As a puppy she reasoned that her primary objective
was not to learn her name but, as puppies all over the world were
doing, "search, seek-out and destroy" But this is not what this story is all
about because while irritating to the Man with Parkinson it is really no big
deal, What we are going to talk about is walking the puppy.
The Man with Parkinsons had some lofty ambitions that he and his
dog would go on long and very pleasant walks. A man and his dog has
become a puppy and his man. He though aloud: "How could such a sweet,
new born learn such dastardly ways to literally trip me up?." And
the Puppy thought silently: "Where do I come up with such great tripping
strategies" (To say nothing of my neat and very sophisticated language).
And at that moment the Man with Parkinson and Pinto looked at each
other and realized in harmony that Pinto has a tripping gene. It's
all in the gene pool! But alas this insight did not interrupt the
negative behavior because there was no agreement that the behavior
was indeed negative.
Although the Man with Parkinsons knew that ALL relationships were
a struggle he thought that this might be a bit easier. Wrong! OK,
so they didn't have to worry whether or not dinner was to be dutch treat
or should they kiss on the first date. There were other issues that
only someone with a movement disorder would think about. Issues/questions
like, is Pinto neurologically and physiologically ready to respond
to training? If so, when and how best to do this "obedience" training?
Is the Man with Parkinsons able to do this training? With the help
of a seasoned trainer they are about to find out. Be sure and read the
next installment in this very true story
=========================================================================
Date: Sun, 13 Jun 1999 11:23:28 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: "Teresa V. Bohuszewicz" <[log in to unmask]>
Subject: Re: Two dogs- non PD
In-Reply-To: <[log in to unmask]>
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I hope you find a good home for them. I will say a little prayer for them.
Teresa, Daughter of Mama (57/43/38)
-----Original Message-----
From: Parkinson's Information Exchange
[mailto:[log in to unmask]]On Behalf Of David Moreland
Sent: Friday, June 11, 1999 11:58 PM
To: [log in to unmask]
Subject: Two dogs- non PD
Non PD1
We have two very nice dogs which we are not giving the care that they
need. One is a white Austrailian Cattle Dog. She is about two years old and
she is spayed and in good health. She is good with kids and with adults.
She is very smart.Free to good home.
The other is about seven years old. She is part pit Bull and part dog down
the street. She is very gentle with children. She would make a good
companion for an older person. She too is free to a good home. We live in
Salem, Oregon. Our phone number is (503)378-1368.
Yours and His
David L. Moreland
http://www.teleport.com/~davelm/moreland_home.html
=========================================================================
Date: Sun, 13 Jun 1999 11:23:45 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: "Teresa V. Bohuszewicz" <[log in to unmask]>
Subject: Re: ... ANOTHER DAY IN THE LIFE ... of a VERY sad face.
In-Reply-To: <v01540b03b387fb4bfa78@[134.115.82.39]>
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You may be surprised that your sad face prodded a little boy to be curious
and, therefore, caused his granny to reflect on your words. Maybe the
granny has come across others who are, also, suffering from PD or other
illness and this was the "straw" that moved her into educating herself about
PD.
Teresa, Daughter of Mama (57/43/38)
-----Original Message-----
From: Parkinson's Information Exchange
[mailto:[log in to unmask]]On Behalf Of Elizabeth Leslie
Sent: Saturday, June 12, 1999 1:11 AM
To: [log in to unmask]
Subject: ... ANOTHER DAY IN THE LIFE ... of a VERY sad face.
While I think I'm slowly - a la bradykinetic mode <g> - coming to terms
with the strange face that often confronts me in the mirror, I was totally
unprepared for this exquisitely poignant experience recently that left me
feeling unspeakably down for days.
I was in a crowded department store restroom in the city, standing drying
my hands, when I heard a little voice say " ... a VERY sad face." I looked
down and there was a little boy of about 5 (under 6-yr old boys aare
permitted in women's restrooms here) looking up at me. He looked
frightened, but nodded 'yes' when I asked him if it was my face he was
talking about. So I told him gently that I have a disease that sometimes
makes it hard for me to smile, and said something pretty hollow about being
'happy on the inside' - obviously a lie because close to end-of-dose and
tired, as well as being acutely 'touched' by the child's need to 'speak
what he saw' I was struggling against tears. His granny was very
apologetic, saying "there's nothing quite like the brutal honesty of a
child". She thanked me for not taking offence, and I asked her if she'd
use the incident to teach her grandchildren about PD ... I hope she did,
but she probably knows very little anyway.
I cried on/off for about 2 days aafter this incident, but the strange thing
is that looking back on it I realise I'd found myself - not for the first
time - in the ironic position of comforting and reassuring others over what
was clearly an 'injury' to me ... like immediately post-dx when, to my huge
surprise, I spent a lot of time comforting distressed family and friends.
On reflection, this reaction is healthy because it forces me to step out of
my own immediaate anguish, but it puzzles me too. Is it just a female
response? do we revert to some innate nurturing role in situations like
this? Do blokes feel/do it too?
I wanted to post about this earlier, but to be truthful it just hurt too
much. So thanks Sandy and Barb for opening a space I feel OK enough in to
air it - Sandy for what you say about eyes ... reminding me that my friends
often remark on the light and life in my eyes ... and Barb for reminding me
of something I know but don't always remember - that facial expression can
be as much a matter of habit as of mood/affliction. It's funny that in our
far distant 'corners' of the globe we're playing the same games ... for
some time I've been confronting people's gazes/stares with bold eye contact
followed by whatever semblance of a 'dazzler' I can muster at the time, and
it never fails to throw 'em ... but it's probably a fine line we stumble
between being perceived as pleasant <:-)-ing> personages or as labile
<g-ing> ... ? loons.
:)s and <g>s to you all
Beth Leslie 55/52/?40
Fremantle
Western Australia
=========================================================================
Date: Sun, 13 Jun 1999 08:20:47 -0700
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Carole Hercun <[log in to unmask]>
Subject: Fwd: Re: where are you
MIME-Version: 1.0
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Note: forwarded message attached.
YES !!! Let me amend that. I'm obviously not happy
that the Pope has fallen. Just that the Vatican has
acknowledged his PD. Carole
_________________________________________________________
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=========================================================================
Date: Sun, 13 Jun 1999 11:35:22 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: "Teresa V. Bohuszewicz" <[log in to unmask]>
Subject: Re: where are you
In-Reply-To: <[log in to unmask]>
MIME-Version: 1.0
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I've been getting them all.
Teresa, Daughter of Mama (57/43/38)
-----Original Message-----
From: Parkinson's Information Exchange
[mailto:[log in to unmask]]On Behalf Of Billie Cook
Sent: Sunday, June 13, 1999 9:34 AM
To: [log in to unmask]
Subject: where are you
is anybody else not getting messages? know it's weekend but usually a
few get through...but today only 3. sure miss 'em.
Billie Cook
=========================================================================
Date: Sun, 13 Jun 1999 11:38:38 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: "Teresa V. Bohuszewicz" <[log in to unmask]>
Subject: Re: Pope in Poland
In-Reply-To: <[log in to unmask]>
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Yes, the news media made a reference to his PD but didn't actually come out
and say that the fall was due to the disease. He did have to have three
stitches on his head.
Teresa, Daughter of Mama (57/43/38)
-----Original Message-----
From: Parkinson's Information Exchange
[mailto:[log in to unmask]]On Behalf Of Hilary Blue
Sent: Sunday, June 13, 1999 11:14 AM
To: [log in to unmask]
Subject: Pope in Poland
Did anybody else take note of the report that the Pope suffered a bad fall
yesterday. It was reported tha he needed several stitches. No cause or
reason
was given, but it was stated that "he suffers form Parkinson's" It was just
mentiooned again on the radio.
Hilary B Lue
=========================================================================
Date: Sun, 13 Jun 1999 08:00:42 -0500
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: "Nancy S. Shlaes" <[log in to unmask]>
Subject: Re: Article on "Sleep Effect Found in Parksinson's Drugs"
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Ervin - Judith Richards has included a much more informative article
than mine. My article would add nothing, but if you still want it I
will figure how to send it to you so that it is not an attachment.
Nancy S deGrazia
ERVIN J MCCARTHY wrote:
> Nancy, I tried pulling up the page on sleepy effects but got a "page
> could not be found" Could you please give a summary of the article
> about Mirapex? Thank You [log in to unmask]
>
> ----- Original Message -----
> From: Nancy S. Shlaes
> To: [log in to unmask]
> Sent: Saturday, June 12, 1999 5:05 PM
> Subject: Article on "Sleep Effect Found in Parksinson's
> Drugs"
> I came across an interesting (and somewhat frightening)
> article in the NYTimes on June 10 withthe headline "Sleep
> Effect Found in Parkinson's Drugs". The article can be
> found at
> www.nytimes.com/yr/mo/day/news/national/science/hlth-parkinsons-drug.html.
>
> The drugs discussed are Mirapex and Requip are the article
> reports traffic accidents due to some somnolence due to
> these drugs
>
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Ervin - Judith Richards has included a much more informative article than
mine. My article would add nothing, but if you still want it I will
figure how to send it to you so that it is not an attachment.
<p>Nancy S deGrazia
<p>ERVIN J MCCARTHY wrote:
<blockquote TYPE=CITE><style></style>
<font size=-1>Nancy, I tried pulling
up the page on sleepy effects but got a "page could not be found" Could
you please give a summary of the article about Mirapex? Thank You</font> <a href="mailto:[log in to unmask]">[log in to unmask]</a>
<blockquote
style="BORDER-LEFT: #000000 2px solid; MARGIN-LEFT: 5px; MARGIN-RIGHT: 0px; PADDING-LEFT: 5px; PADDING-RIGHT: 0px">
<div style="FONT: 10pt arial">----- Original Message -----</div>
<div
style="BACKGROUND: #e4e4e4; FONT: 10pt arial; font-color: black"><b>From:</b>
<a href="mailto:[log in to unmask]" title="[log in to unmask]">Nancy
S. Shlaes</a></div>
<div style="FONT: 10pt arial"><b>To:</b> <a href="mailto:[log in to unmask]" title="[log in to unmask]">[log in to unmask]</a></div>
<div style="FONT: 10pt arial"><b>Sent:</b> Saturday, June 12, 1999 5:05
PM</div>
<div style="FONT: 10pt arial"><b>Subject:</b> Article on "Sleep Effect
Found in Parksinson's Drugs"</div>
I came across an interesting (and somewhat frightening) article in
the NYTimes on June 10 withthe headline <i>"Sleep Effect Found in Parkinson's
Drugs". </i>The article can be found at <a href="http://www.nytimes.com/yr/mo/day/news/national/science/hlth-parkinsons-drug.html">www.nytimes.com/yr/mo/day/news/national/science/hlth-parkinsons-drug.html</a>.
<p>The drugs discussed are Mirapex and Requip are the article reports traffic
accidents due to some somnolence due to these drugs</blockquote>
</blockquote>
</body>
</html>
--------------B8B7A1E3A2EC1A1C52CDB7C6--
=========================================================================
Date: Sun, 13 Jun 1999 13:22:08 -0700
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: ERVIN J MCCARTHY <[log in to unmask]>
Subject: Re: Article on "Sleep Effect Found in Parksinson's Drugs"
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Nancy, thank you so much for the response, Judith did post the article.
[log in to unmask]
----- Original Message -----=20
From: Nancy S. Shlaes=20
To: [log in to unmask]
Sent: Sunday, June 13, 1999 6:00 AM
Subject: Re: Article on "Sleep Effect Found in Parksinson's Drugs"
Ervin - Judith Richards has included a much more informative article =
than mine. My article would add nothing, but if you still want it I =
will figure how to send it to you so that it is not an attachment.=20
Nancy S deGrazia=20
ERVIN J MCCARTHY wrote:=20
Nancy, I tried pulling up the page on sleepy effects but got a "page =
could not be found" Could you please give a summary of the article about =
Mirapex? Thank You [log in to unmask]
----- Original Message -----
From: Nancy S. Shlaes
To: [log in to unmask]
Sent: Saturday, June 12, 1999 5:05 PM
Subject: Article on "Sleep Effect Found in Parksinson's Drugs"
I came across an interesting (and somewhat frightening) article =
in the NYTimes on June 10 withthe headline "Sleep Effect Found in =
Parkinson's Drugs". The article can be found at =
www.nytimes.com/yr/mo/day/news/national/science/hlth-parkinsons-drug.html=
.=20
The drugs discussed are Mirapex and Requip are the article reports =
traffic accidents due to some somnolence due to these drugs
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charset="iso-8859-1"
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<!DOCTYPE HTML PUBLIC "-//W3C//DTD HTML 4.0 Transitional//EN">
<HTML><HEAD>
<META content=3D"text/html; charset=3Diso-8859-1" =
http-equiv=3DContent-Type>
<META content=3D"MSHTML 5.00.2314.1000" name=3DGENERATOR></HEAD>
<BODY bgColor=3D#ffffff>
<DIV><FONT size=3D2>Nancy, thank you so much for the response, Judith =
did post the=20
article.</FONT></DIV>
<DIV> </DIV>
<DIV><A=20
href=3D"mailto:[log in to unmask]">[log in to unmask]</A>=
</DIV>
<BLOCKQUOTE=20
style=3D"BORDER-LEFT: #000000 2px solid; MARGIN-LEFT: 5px; MARGIN-RIGHT: =
0px; PADDING-LEFT: 5px; PADDING-RIGHT: 0px">
<DIV style=3D"FONT: 10pt arial">----- Original Message ----- </DIV>
<DIV=20
style=3D"BACKGROUND: #e4e4e4; FONT: 10pt arial; font-color: =
black"><B>From:</B>=20
<A href=3D"mailto:[log in to unmask]" =
[log in to unmask]>Nancy S.=20
Shlaes</A> </DIV>
<DIV style=3D"FONT: 10pt arial"><B>To:</B> <A=20
href=3D"mailto:[log in to unmask]"=20
=
[log in to unmask]>[log in to unmask]</A> =
</DIV>
<DIV style=3D"FONT: 10pt arial"><B>Sent:</B> Sunday, June 13, 1999 =
6:00 AM</DIV>
<DIV style=3D"FONT: 10pt arial"><B>Subject:</B> Re: Article on "Sleep =
Effect=20
Found in Parksinson's Drugs"</DIV>
<DIV><BR></DIV>Ervin - Judith Richards has included a much more =
informative=20
article than mine. My article would add nothing, but if you =
still want=20
it I will figure how to send it to you so that it is not an =
attachment.=20
<P>Nancy S deGrazia=20
<P>ERVIN J MCCARTHY wrote:=20
<BLOCKQUOTE TYPE=3D"CITE">
<STYLE></STYLE>
<FONT size=3D-1>Nancy, I tried pulling up the page on sleepy effects =
but got a=20
"page could not be found" Could you please give a summary of the =
article=20
about Mirapex? Thank You</FONT> <A=20
=
href=3D"mailto:[log in to unmask]">[log in to unmask]</A>=
=20
<BLOCKQUOTE=20
style=3D"BORDER-LEFT: #000000 2px solid; MARGIN-LEFT: 5px; =
MARGIN-RIGHT: 0px; PADDING-LEFT: 5px; PADDING-RIGHT: 0px">
<DIV style=3D"FONT: 10pt arial">----- Original Message -----</DIV>
<DIV=20
style=3D"BACKGROUND: #e4e4e4; FONT: 10pt arial; font-color: =
black"><B>From:</B>=20
<A href=3D"mailto:[log in to unmask]" =
[log in to unmask]>Nancy=20
S. Shlaes</A></DIV>
<DIV style=3D"FONT: 10pt arial"><B>To:</B> <A=20
href=3D"mailto:[log in to unmask]"=20
=
[log in to unmask]>[log in to unmask]</A></=
DIV>
<DIV style=3D"FONT: 10pt arial"><B>Sent:</B> Saturday, June 12, =
1999 5:05=20
PM</DIV>
<DIV style=3D"FONT: 10pt arial"><B>Subject:</B> Article on "Sleep =
Effect=20
Found in Parksinson's Drugs"</DIV> I came across an =
interesting (and=20
somewhat frightening) article in the NYTimes on June 10 withthe =
headline=20
<I>"Sleep Effect Found in Parkinson's Drugs". </I>The =
article can be=20
found at <A=20
=
href=3D"http://www.nytimes.com/yr/mo/day/news/national/science/hlth-parki=
nsons-drug.html">www.nytimes.com/yr/mo/day/news/national/science/hlth-par=
kinsons-drug.html</A>.=20
<P>The drugs discussed are Mirapex and Requip are the article =
reports=20
traffic accidents due to some somnolence due to these=20
drugs</P></BLOCKQUOTE></BLOCKQUOTE></BLOCKQUOTE></BODY></HTML>
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=========================================================================
Date: Sun, 13 Jun 1999 09:33:44 -0000
Reply-To: Constance Tate <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Constance Tate <[log in to unmask]>
Subject: pd question
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dear janet
help please- my husband started limping this morning and said that =
he must have twiit hurt it was hurtsted his leg.after quizzing him he =
said that it hurt by his hip.being this is sunday i cant get him to our =
doctor and i am wondering if i should
get him to emergency before tomorrow or would it be okay to wait until =
tomorrow and get him to the doctor.i would really appreciate any =
opinion.
connie tate
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charset="iso-8859-1"
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<!DOCTYPE HTML PUBLIC "-//W3C//DTD W3 HTML//EN">
<HTML>
<HEAD>
<META content=3Dtext/html;charset=3Diso-8859-1 =
http-equiv=3DContent-Type>
<META content=3D'"MSHTML 4.72.3110.7"' name=3DGENERATOR>
</HEAD>
<BODY bgColor=3D#ffffff>
<DIV><FONT size=3D2></FONT> </DIV>
<DIV><FONT size=3D2></FONT> </DIV>
<DIV><FONT size=3D2>dear janet</FONT></DIV>
<DIV><FONT size=3D2> help please- my husband =
started=20
limping this morning and said that he must have twiit hurt it was =
hurtsted his=20
leg.after quizzing him he said that it hurt by his hip.being this is =
sunday i=20
cant get him to our doctor and i am wondering if i should</FONT></DIV>
<DIV><FONT size=3D2></FONT> </DIV>
<DIV><FONT size=3D2></FONT> </DIV>
<DIV><FONT size=3D2>get him to emergency before tomorrow or would =
it be okay=20
to wait until tomorrow and get him to the doctor.i would really =
appreciate any=20
opinion.</FONT></DIV>
<DIV><FONT size=3D2> connie=20
tate</FONT></DIV></BODY></HTML>
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=========================================================================
Date: Sun, 13 Jun 1999 11:35:52 -0300
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Joao Paulo Carvalho <[log in to unmask]>
Subject: Stem cells
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See folks this new from NY Times :
By NICHOLAS WADE
n a possible glimpse at the brain surgery of the
future, biologists have
partly cured mice of a disease resembling multiple
sclerosis by
injecting restorative cells into their brains.
The cells migrated all over the brain and took the
correct action to repair
the neural disease, in this case a lack of the sheath
that covers certain
nerve cells and helps speed their conduction of
electrical signals.
The approach is founded on the
use of stem
cells, the special regenerative
cells with
which organs renew and repair
themselves.
Dr. Evan Y. Snyder and his
colleagues at
Harvard Medical School worked
with
neural stem cells, the progenitor
cells that
develop into all of the other
specialized cells
of the brain.
Dr. Snyder said that his experiment showed, in
principle, that neural stem
cells can migrate all over the brain and develop into
the right kinds of
specialized cells. Hence human neural stem cells could
serve to treat
diseases that affect the whole brain, like Alzheimer's
and multiple
sclerosis.
The subjects of Dr. Snyder's study, which was reported
in today's issue
of the Proceedings of the National Academy of Science,
were "shiverer"
mice, so called because they shiver uncontrollably
throughout their
generally short adult life.
The mice's problem is a mutation in the gene that makes
myelin, the
material that sheathes the long extensions of certain
nerve cells. Because
the gene is disrupted, the oligodendrocytes, the
special cells that do the
cladding, are ineffective.
In his experiment, Dr. Snyder injected neural stem
cells from a normal
mouse into newborn shiverer mice, into the brain region
from which the
stem cells originate. The new stem cells spread all
over the brain,
transformed themselves into oligodendrocytes and
churned out myelin to
wrap around the cells.
The shivering abated in more than half the treated
mice, and some
seemed fully normal.
It was long thought that people die with the same set
of brain cells that
they are born with. But recent findings have shown that
new brain cells
are continually created from neural stem cells, at
least in certain regions of
the brain. Dr. Snyder believes that neural stem cell
activity may be quite
high in normal adult brains and even higher in diseased
brains.
Even if neural stem cells do not migrate much in the
adult brain, it may be
possible to equip them with genes that reawaken the
migratory instincts
of their youth, Dr. Snyder believes. Stem cells are
particularly amenable
to genetic manipulation.
For a next step, he plans to repeat his experiment in
adult mice, then
perhaps with monkeys, and then in an appropriate
clinical setting. Dr.
Snyder envisions a new approach to many brain diseases,
based on the
use of neural stem cells. "It's very conceivable that
within this decade we
will have a genuine contribution to make to brain
repair," he said.
Dr. Snyder's optimism is shared by other biologists who
work on stem
cells, both in the brain and other organs, and who see
themselves as
opening up a new field of medicine based on the body's
own repair
system.
The use of stem cells, together with the signals that
control the cells'
behavior, is sometimes known as regenerative medicine.
"We do believe this represents a paradigm shift, that
it's a whole new
way of repairing the brain by trying to invoke
fundamental principles of
brain development," Dr. Snyder said.
Dr. Ron McKay, a neural stem cell expert at the
National Institutes of
Health, said Dr. Snyder's experiment was "pretty
impressive" in showing
how much of the shiverer mouse brains could be
re-sheathed in myelin.
It proved the concept, he said, that if neural stem
cells are injected at the
right stage in the brain's development, they will
develop into the
appropriate kind of specialized cell. "I am utterly
confident in the
correctness of the conclusion," he said.
--
Cheers ,
+----| Joao Paulo de Carvalho |------ +
| [log in to unmask] |
+--------| Salvador-Bahia-Brazil |------+
=========================================================================
Date: Sun, 13 Jun 1999 13:38:21 -0700
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: ERVIN J MCCARTHY <[log in to unmask]>
Subject: Fw: Fw: US Postal Ser wants .05 Surcharge
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit
This message has a host bill number attached to it that would make it more
legitimate.
----- Original Message -----
>
Sent: Saturday, June 12, 1999 5:52 PM
Subject: Fw: Fw: US Postal Ser wants .05 Surcharge
>
>
> Sent: Saturday, June 12, 1999 11:29 AM
> Subject: Re: Fw: US Postal Ser wants .05 Surcharge
>
>
> >
> >
> >
> > >
> > >
> > > Dear Internet Subscriber:
> > > Please read the following carefully if you intend to
> > > stay online and continue using email: The last few
> > > months have revealed an alarming trend in the
> > > Government of the United States attempting to quietly
> > > push through legislation that will affect your use of
> > > the Internet. Under proposed legislation the U.S.
> > > Postal Service will be attempting to bilk email users
> > > out of "alternate postage fees". Bill 602P will permit
> > > the Federal Govt to charge a 5 cent surcharge on
> > > every email delivered, by billing Internet Service
> > > Providers at source. The consumer would then be
> > > billed in turn by the ISP. Washington D.C. lawyer
> > > Richard Stepp is
> > > working without pay to prevent this legislation from
> > > becoming law. The U.S. Postal Service is claiming that
> > > lost revenue due to the proliferation of email is
> > > costing nearly $230,000,000 in revenue per year. You
> > > may have noticed their recent ad campaign "There is
> > > nothing like a letter". Since the average citizen
> > > received about 10 pieces of email per day in 1998, the
> > > cost to the typical individual would be an additional
> > > 50 cents per day, or over $180 dollars per year, above
> > > and beyond their regular Internet costs. Note that
> > > this would be money paid directly to the U.S. Postal
> > > Service for a service they do not even provide. The
> > > whole point of the Internet is democracy and
> > > non-interference. If the federal government is
> > > permitted to tamper with our
> > > liberties by adding a surcharge to email, who knows
> > > where it will end. You are already paying an
> > > exorbitant price for snail mail because of bureacratic
> > > efficiency. It currently takes up to 6 days for a
> > > letter to be
> > > delivered from New York to Buffalo. If the U.S. Postal
> > > Service is allowed to tinker with email, it will mark
> > > the end of the "free" Internet in the United States.
> > > One congressman, Tony Schnell (r) has even suggested a
> > > "twenty to forty dollar per month surcharge on all
> > > Internet service" above and beyond the government's
> > > proposed email charges. Note that most of the major
> > > newspapers have ignored the story, the only exception
> > > being the Washingtonian which called the idea of email
> > > surcharge "a useful concept who's time has come"
> > > March 6th 1999 Editorial) Don't sit by and watch your
> > > freedoms erode away!
> > > Send this email to all Americans on your list and tell
> > > your friends and relatives to write to their
> > > congressman and say "No!" to Bill 602P.
> > > Kate Turner Assistant to Richard Stepp, Berger, Stepp and Gorman
> > > Attorneys at Law 216 Concorde Street, Vienna, Va.
> > >
> >
> >
>
=========================================================================
Date: Sun, 13 Jun 1999 13:35:55 EDT
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Gerry & Brig Haines <[log in to unmask]>
Subject: Re: A SECOND PLEA
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Hilary, Brig and I are going to the Forum
Gerry
=========================================================================
Date: Sun, 13 Jun 1999 14:11:36 EDT
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: ".Joan Waterman" <[log in to unmask]>
Subject: Re: A SECOND PLEA
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Gerry & Brig,
Could the forum have any bearing on getting FDA's full approval of the
STNDBS? If so, it would be wonderful to have that settled. Whatever you are
to deal with, good luck we're backing you!
Ruth Clark
=========================================================================
Date: Sun, 13 Jun 1999 13:49:00 -0500
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Phil Tompkins <[log in to unmask]>
Subject: Levodopa vs. gastric emptying?
MIME-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7BIT
Hello,
We know that Sinemet has to get through the stomach to the small
intestines to be absorbed.
Here's a question. I just found this:
MEDICAL OBSERVER MAGAZINE V4 #8:PART 5, Article "GASTROPARESIS: A
MOTILITY DISORDER". Contains a statement made in 1995 attributed to
Australian researcher Dr. Michael Horowitz, an associate professor
of medicine at the University of Adelaide-Royal Adelaide Hospital in
South Australia to the effect that levodopa delays gastric emptying.
http://www.cph.upm.edu.ph/mobs/mobs_aug95_p5.html
Is this correct? If so, then are we are all standing on our own
bootstraps? Or, if correct, does it apply only to levodopa and not
to Sinemet?
Phil Tompkins
Hoboken NJ
age 61/dx 1990
=========================================================================
Date: Sun, 13 Jun 1999 14:24:22 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Camilla Flintermann <[log in to unmask]>
Subject: Re: Fw: Fw: US Postal Ser wants .05 Surcharge
In-Reply-To: <007901beb5dc$ae1fba20$43769cd1@erv>
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
This has been posted before--and also the fact that there is NO SUCH law
firm and NO SUCH PERSONS was stated in the "hoax" website. It is
definitely NOT true. Please check before sending these things!
SEE BELOW the item from the website that discredits it:
Sun, Jun 13, 1999
David Emery - your About.com Guide to:
Urban Legends and Folklore
archive of legends & netlore:
U.S. Postal Tax on Email?
Posted: 05/22/99
Here's an item straight out of the hoax recycling bin. A "new" email
forward claims that the
U.S. Postal Service is attempting to levy a 5-cent surcharge on every
email delivered within the
United States.
Funny thing is, a virtually identical message circulating one month ago
claimed that the same
thing was about to happen in Canada.
False, in both cases (see comments below).
Subject: E-MAIL SURCHARGE
Dear Internet Subscriber:
Please read the following carefully if you intend to stay online
and continue using email: The last few months have revealed an
alarming trend in the Government of the United States attempting
to quietly push through legislation that will affect your use of
the Internet. Under proposed legislation the U.S. Postal Service
will be attempting to bilk email users out of "alternate postage
fees". Bill 602P will permit the Federal Govt to charge a 5 cent
surcharge on every email delivered, by billing Internet Service
Providers at source. The consumer would then be billed in turn by
the ISP. Washington D.C. lawyer Richard Stepp is working without
pay to prevent this legislation from becoming law.
The U.S. Postal Service is claiming that lost revenue due to the
proliferation of email is costing nearly $230,000,000 in revenue
per year. You may have noticed their recent ad campaign "There is
nothing like a letter". Since the average citizen received about
10 pieces of email per day in 1998, the cost to the typical
individual would be an additional 50 cents per day, or over $180
dollars per year, above and beyond their regular Internet costs.
Note that this would be money paid directly to the U.S. Postal
Service for a service they do not even provide. The whole point of
the Internet is democracy and non-interference. If the federal
government is permitted to tamper with our liberties by adding a
surcharge to email, who knows where it will end. You are already
paying an exorbitant price for snail mail because of bureacratic
efficiency. It currently takes up to 6 days for a letter to be
delivered from New York to Buffalo. If the U.S. Postal Service is
allowed to tinker with email, it will mark the end of the "free"
Internet in the United States. One congressman, Tony Schnell (r)
has even suggested a "twenty to forty dollar per month surcharge
on all Internet service" above and beyond the government's
proposed email charges. Note that most of the major newspapers
have ignored the story, the only exception being the Washingtonian
which called the idea of email surcharge "a useful concept who's
time has come" March 6th 1999 Editorial) Don't sit by and watch
your freedoms erode away!
Send this email to all Americans on your list and tell your
friends and relatives to write to their congressman and say "No!"
to Bill 602P.
Kate Turner Assistant to Richard Stepp, Berger, Stepp and Gorman
Attorneys at Law 216 Concorde Street, Vienna, Va.
Guide's note: Compare the above to the Canadian version of one month ago.
Someone has
simply taken that hoax and "localized" it by replacing Canadian references
with U.S.
equivalents. No points for cleverness or originality on this one.
Here's an excerpt from the U.S. Postal Service's response:
A completely false rumor concerning the U.S. Postal Service is being
circulated over the Internet via e-mail.
The e-mail message claims that a "Congressman Schnell" has
introduced "Bill
602P" to allow the federal government to impose a 5-cent surcharge
on each
e-mail message delivered over the Internet. The money would be
collected by
Internet Service Providers and then turned over to the Postal Service.
No such proposed legislation exists. In fact, no "Congressman
Schnell" exists.
Roy Betts, manager of media relations for the Postal Service,
set the record straight for reporters: "It's obviously a hoax."
Er... evidently not so obvious to everyone who's forwarded
the email alert. Rumors of rate hikes or surcharges for Internet
access, no matter how preposterous, never fail to generate
hysteria among rank and file users. Witness the furor over the
similar 'modem tax' legend of a decade ago, or the more recent
long distance access charge rumors that have resulted in the
FCC's offices being swamped with protests for the past couple
of years.
Current Net Hoaxes
More Legends & Netlore
Camilla Flintermann, CG for Peter 81/70/55
Oxford, Ohio
http://www.newcountry.nu/pd/members/camilla/one.htm
<[log in to unmask]>
"Ask me about the CARE list for
Caregivers of Parkinsonians ! "
=========================================================================
Date: Sun, 13 Jun 1999 14:28:27 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: john bjork <[log in to unmask]>
Subject: Re: Non-PD: THE PIGS ARE COMING!Or When Pigs fly...
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Carole: It looks like my communications aren't making it to CT. Maybe
they're being intercepted by Suspicious Surly Spies Subverting Speedy
Sojourn to Selected Safe Sanctuary. Although the mutant geese have
landed safely in Parkinsaw, and are indeed at the sanctuary, no word has
been received of the Flying Pigs of Cincinnati. Maybe they are safe in
Ohio at the Porker Hall of Fame. Alas, His Holiness was not able to
make the trip to Parkinsaw; instead he charged a special envoy, Father
Sarducci, of NY, to ostensibly go to Detroit to see a Tigers game (They
need all the help from the Pope that they can get, I'll tell you that
much), and then to make a secret side trip to Parkinsaw to meet with
Dudley Doowrong about the condition of the security controls at the
sanctuary. The good Father gave his approval as to the efficacy of the
security measures. In order to make the journey to Parkinsaw, I advised
that the area was in the midst of a heat wave, which has since abated.
(If you don't like the weather hear, just wait 5 minutes---it will
change). But, the pigs will be fine here with no fur coats at least
until Deer Season...the 15th of November. Incidentally, if there are
any hard to fit porkers, we have a Haberdashery in town who could fit
King Kong. (They have great pigskin gloves!) So, Carole, I hope this
information is not intercepted by the Secret Surly Spies, so you will be
fully current with the project.
John Bjork
Parkinsaw, MI
Carole Hercun wrote:
> First of all, if any pigs ate the missing e-mail,
> which has been light here too, it must have been Don's
> Alabama razorbacks. My Connecticut pigs would never
> stoop so low. Speaking of which, I am missing two
> planeloads of pigs. I sent them off, fur coats on
> their backs,(because John didn't mention the fact that
> it was
> 100 degrees in Parkinsaw and we naturally assumed
> Alaska and Parkinsaw were synonomous,) squealing and
> squabbling because they couldn't sit next to the Pope,
> to sanctuary in the piggy paradise that is
> Parkinsaw...
> And they have disappeared. Has anyone sighted any
> flying pigs? Not winged pigs. Those are Cincinnati
> piggy "angels". I'm talking about pigs with
> parachutes.Please answer as I am frantic with worry.
> Concerned Carole in Connecticut
> P.S. Is Parkinsaw anywhere near the Bermuda
> triangle??
>
> _________________________________________________________
> Do You Yahoo!?
> Get your free @yahoo.com address at http://mail.yahoo.com
=========================================================================
Date: Sun, 13 Jun 1999 14:53:24 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Camilla Flintermann <[log in to unmask]>
Subject: Re: Non-PD: THE PIGS ARE COMING!Or When Pigs fly...
In-Reply-To: <[log in to unmask]>
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
John B. wrote:
Although the mutant geese have
>landed safely in Parkinsaw, and are indeed at the sanctuary, no word has
>been received of the Flying Pigs of Cincinnati. Maybe they are safe in
>Ohio at the Porker Hall of Fame.
I can assure you that the flying porkies are in fact nearing Parkinsaw as I
write. They have been spotted on radar--this time, no confusion as to
their identity, and are reported to be about 50 miles from Parkinsaw---as
the pig flies. Please see to it that the landing lights are turned on at
the Sanctuary, should it be evening when they arrive, so they may land
safely. At last count they numbered 12, and include pigs of all ages and
both sexes. ( No fur coats among them, as those would make it hard to flap
their wings, obviously. ) I am sure the good citizens of Parkinsaw have
made adequate arrangements to care for them after their exhausting
journey. On their behalf, and that of the pig-preferring people of
Cincinnati, I thank you in advance!
---just for fun!........ Camilla <[log in to unmask]>
http://www.newcountry.nu/pd/members/camilla/one.htm
Laughter-- :-) :-)
the best medecine !
=========================================================================
Date: Sun, 13 Jun 1999 21:22:23 +0200
Reply-To: [log in to unmask]
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: "Dr. Ralph Warsinsky" <[log in to unmask]>
Organization: [log in to unmask]
Subject: Re: Article on "Sleep Effect Found in Parksinson's Drugs"
MIME-Version: 1.0
Content-Type: multipart/alternative;
boundary="------------733EDC41B8CD0EF1CB3A1FA6"
--------------733EDC41B8CD0EF1CB3A1FA6
Content-Type: text/plain; charset=iso-8859-1; x-mac-type="54455854"; x-mac-creator="4D4F5353"
Content-Transfer-Encoding: 8bit
Dear all,
since I´m new on the mailing list, could anyone please forward the
article posted recently to mee too. Thanks so much an the best wishes to
all.
Ralph
ERVIN J MCCARTHY wrote:
> Nancy, thank you so much for the response, Judith did post the
> article. [log in to unmask]
>
> ----- Original Message -----
> From: Nancy S. Shlaes
> To: [log in to unmask]
> Sent: Sunday, June 13, 1999 6:00 AM
> Subject: Re: Article on "Sleep Effect Found in Parksinson's
> Drugs"
> Ervin - Judith Richards has included a much more
> informative article than mine. My article would add
> nothing, but if you still want it I will figure how to send
> it to you so that it is not an attachment.
>
> Nancy S deGrazia
>
> ERVIN J MCCARTHY wrote:
>
> > Nancy, I tried pulling up the page on sleepy effects but
> > got a "page could not be found" Could you please give a
> > summary of the article about Mirapex? Thank You
> > [log in to unmask]
> >
> > ----- Original Message -----
> > From: Nancy S. Shlaes
> > To: [log in to unmask]
> > Sent: Saturday, June 12, 1999 5:05 PM
> > Subject: Article on "Sleep Effect Found in
> > Parksinson's Drugs"
> > I came across an interesting (and somewhat
> > frightening) article in the NYTimes on June 10
> > withthe headline "Sleep Effect Found in
> > Parkinson's Drugs". The article can be found at
> > www.nytimes.com/yr/mo/day/news/national/science/hlth-parkinsons-drug.html.
> >
> > The drugs discussed are Mirapex and Requip are
> > the article reports traffic accidents due to
> > some somnolence due to these drugs
> >
--------------733EDC41B8CD0EF1CB3A1FA6
Content-Type: text/html; charset=us-ascii
Content-Transfer-Encoding: 7bit
<!doctype html public "-//w3c//dtd html 4.0 transitional//en">
<html>
<body bgcolor="#FFFFFF">
Dear all,
<p>since I´m new on the mailing list, could anyone please forward
the article posted recently to mee too. Thanks so much an the best wishes
to all.
<br>Ralph
<p>ERVIN J MCCARTHY wrote:
<blockquote TYPE=CITE> <font size=-1>Nancy, thank you so much for
the response, Judith did post the article.</font> <a href="mailto:[log in to unmask]">[log in to unmask]</a>
<blockquote
style="BORDER-LEFT: #000000 2px solid; MARGIN-LEFT: 5px; MARGIN-RIGHT: 0px; PADDING-LEFT: 5px; PADDING-RIGHT: 0px">
<div style="FONT: 10pt arial">----- Original Message -----</div>
<div
style="BACKGROUND: #e4e4e4; FONT: 10pt arial; font-color: black"><b>From:</b>
<a href="mailto:[log in to unmask]" title="[log in to unmask]">Nancy
S. Shlaes</a></div>
<div style="FONT: 10pt arial"><b>To:</b> <a href="mailto:[log in to unmask]" title="[log in to unmask]">[log in to unmask]</a></div>
<div style="FONT: 10pt arial"><b>Sent:</b> Sunday, June 13, 1999 6:00 AM</div>
<div style="FONT: 10pt arial"><b>Subject:</b> Re: Article on "Sleep Effect
Found in Parksinson's Drugs"</div>
Ervin - Judith Richards has included a much more informative article
than mine. My article would add nothing, but if you still want it
I will figure how to send it to you so that it is not an attachment.
<p>Nancy S deGrazia
<p>ERVIN J MCCARTHY wrote:
<blockquote TYPE="CITE"><font size=-1>Nancy, I tried pulling up the page
on sleepy effects but got a "page could not be found" Could you please
give a summary of the article about Mirapex? Thank You</font> <a href="mailto:[log in to unmask]">[log in to unmask]</a>
<blockquote
style="BORDER-LEFT: #000000 2px solid; MARGIN-LEFT: 5px; MARGIN-RIGHT: 0px; PADDING-LEFT: 5px; PADDING-RIGHT: 0px">
<div style="FONT: 10pt arial">----- Original Message -----</div>
<div
style="BACKGROUND: #e4e4e4; FONT: 10pt arial; font-color: black"><b>From:</b>
<a href="mailto:[log in to unmask]" title="[log in to unmask]">Nancy
S. Shlaes</a></div>
<div style="FONT: 10pt arial"><b>To:</b> <a href="mailto:[log in to unmask]" title="[log in to unmask]">[log in to unmask]</a></div>
<div style="FONT: 10pt arial"><b>Sent:</b> Saturday, June 12, 1999 5:05
PM</div>
<div style="FONT: 10pt arial"><b>Subject:</b> Article on "Sleep Effect
Found in Parksinson's Drugs"</div>
I came across an interesting (and somewhat frightening) article in
the NYTimes on June 10 withthe headline <i>"Sleep Effect Found in Parkinson's
Drugs". </i>The article can be found at <a href="http://www.nytimes.com/yr/mo/day/news/national/science/hlth-parkinsons-drug.html">www.nytimes.com/yr/mo/day/news/national/science/hlth-parkinsons-drug.html</a>.
<p>The drugs discussed are Mirapex and Requip are the article reports traffic
accidents due to some somnolence due to these drugs</blockquote>
</blockquote>
</blockquote>
</blockquote>
</body>
</html>
--------------733EDC41B8CD0EF1CB3A1FA6--
=========================================================================
Date: Sun, 13 Jun 1999 15:48:13 EDT
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Maryhelen Davila <[log in to unmask]>
Subject: Re: tips for a successful trip-new thread
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Hi Joan
Re Flying, here my input
Always ask for an aisle seat - pick the seat that permits my worst "parkie"
side to be facing the aisle. I'm uncomfortable trying to keep from bothering
someone sitting next to me.
take your own small water bottle along with your pills - (no matter where you
go)
I refer my seat be behind another seat because when off, My feet need
something to brace against to hold me up.
take plenty of money for tips (get $50 in single $1 bills) - and don't be
bashful. I usually travel alome. And the minute I get to the airport, I'm
greeted by a porter. And although it's costing me a couple dollars, it's
worth it. Start out with a porter that you can pay to take you every step of
the way -- don't have him/her dro you offf at the ticket ciunter, then get
another one to the gate, to the luggage pick - up, or to the taxi pick-up
area. Ask the porter att the beginning if he/she's willing to stick with you
all the waay -- I negotiate with him/her up front before Ilet myself be
wheeled away.
Keepy
=========================================================================
Date: Sun, 13 Jun 1999 15:48:06 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: judith richards <[log in to unmask]>
Organization: @Home Network
Subject: Re: Article on "Sleep Effect Found in Parksinson's Drugs"
Comments: To: [log in to unmask]
MIME-Version: 1.0
Content-Type: text/plain; charset=iso-8859-1
Content-Transfer-Encoding: 8bit
Dr. Ralph Warsinsky wrote:
> since I´m new on the mailing list, could anyone please forward the
> article posted recently to me too.
June 9, 1999
New Drugs Blamed in 'Sleep Attacks'
By LAURAN NEERGAARD AP Medical Writer
WASHINGTON (AP) - Two new drugs for Parkinson's disease may suddenly put
patients to sleep, a dangerous narcolepsy-like side effect termed
``sleep attack'' that has caused at least eight people to have car
wrecks, doctors warned Wednesday.
The Food and Drug Administration is talking with the manufacturers about
whether the drugs need additional warning labels.
Dr. Steven Frucht of Columbia-Presbyterian Medical Center in New York,
who reported the eight cases in the journal Neurology, said Parkinson's
patients should not overreact to the warning and stop taking the drugs,
which can be very helpful at treating Parkinson's symptoms.
``You have to discuss this possibility frankly with patients before
starting this medication,'' advised Frucht, who still prescribes the
medicines. Patients, he added, should talk with their doctors whether
they feel sedated or ever have suffered a sleep attack.
Eight men taking the drug Mirapex, known chemically as pramipexole,
suffered sleep attacks while driving that resulted in accidents,
although none of the patients was injured, Frucht reports.
Four also experienced sleep attacks during business meetings and phone
calls.
Six stopped taking Mirapex and two others reduced the dose, and the
sleep attacks stopped.
But one former Mirapex patient then switched to a second Parkinson's
drug called Requip, known chemically as ropinirole, and suffered another
sleep attack while driving.
The effect appears rare: Over 100,000 Americans take these drugs, and
the FDA said it knew of no additional cases.
But ``unless you ask, many patients won't report this,'' Frucht said.
When the FDA approved Mirapex and Requip in 1997, it noted on the drugs'
labels that they occasionally cause somnolence, and thus driving is not
a good idea until the patient has taken the medicines long enough to
tell if they are susceptible.
But somnolence - that drowsy feeling that even over-the-counter drugs
like antihistamines often cause - is very different from a sleep attack,
said Frucht, describing the attacks as overwhelming and irresistible
sleepiness that comes on without warning.
How long a patient must take the drugs to see if they will be affected
is questionable, he added. Frucht noted that the eight patients who had
car wrecks had taken the medicines anywhere from one month to 14 months
before the sleep attack.
``A sleep attack is for all intents and purposes meaningless if you're
sitting in front of the TV,'' Frucht said. ``But they're driving on the
highway. The next thing they knew they'd hit the car next to them, or
the passenger screamed at them that they're going off the road.''
Frucht and colleagues at three Parkinson's centers alerted the drugs'
manufacturers - Pharmacia & UpJohn for Mirapex and SmithKline Beecham
for Requip - to the eight patients they treated.
Pharmacia & UpJohn said it is investigating whether patients just were
drowsy from the drugs and driving made it worse, or if they indeed
experienced the abrupt attack Frucht described. If so, the next question
is whether patients took additional medications that interacted to cause
the sleep attack.
Between 500,000 and 1.5 million Americans have Parkinson's, which causes
progressive muscle rigidity, tremors and difficulty moving as they
slowly lose a vital brain chemical called dopamine. Mirapex and Requip
work by mimicking dopamine.
Copyright Š 1999 The Associated Press.
--
Judith Richards, London, Ontario, Canada
<[log in to unmask]>
^^^
\ /
\ | / Todays Research
\\ | // ...Tomorrows Cure
\ | /
\|/
```````
=========================================================================
Date: Sun, 13 Jun 1999 15:56:11 EDT
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Maryhelen Davila <[log in to unmask]>
Subject: Re: Spread the word/PENNIES FOR PARKINSONS
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
My 20+ years w
Personnel Analyst
Federal Labor Standards Officer
Program Aide
Administrative Assistant
Courts Contract Compliance Enforcement
Commercial Art
Advertising
=========================================================================
Date: Sun, 13 Jun 1999 15:57:05 EDT
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Maryhelen Davila <[log in to unmask]>
Subject: Re: blind men and elephants
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
.
.
Hilay
I agree. Maybe the 'Alliance' can help us find a way.
Maryhelen
In a message dated 99-04-26 11:53:51 EDT, you write:
<< Our reactions were that we were the people
living with this dire disease, we were the people caring for those with this
dire disease and time after time, we were being asked to pay for the
privellege. ANd we had both come to the conclusion, that the time had come to
move outwards, to seek fresh fields and pastures new - to find people willing
to donate who wouldn't feel they were being bled dry. >>
=========================================================================
Date: Sun, 13 Jun 1999 15:56:55 EDT
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Maryhelen Davila <[log in to unmask]>
Subject: Re: PET Scans
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
I had 2 PET scans. One was Flouradopa. The second was Glucose I took these
because the doctors at Mayo Clinic believe that I have somehing that mimicks
PD but it's not idiopathic PD - PD plus is a litle tougher than regular PD.
They were trying to fit it into one of the other categories like Shy Dragger,
Supranucleur (can't spell these ) etc. etc. So they took the two PET scans
and learned that the usual areas affected in PD weren't really affected as
far as the PET scan could tell. They found other areas affected, which have
had me scared to death for three years now. Due to their findings I'm no
longer a candidate for PD related surgeries, and doctors seem to hesitate
anytimee they try changing meds. I go through H_ LL with any change. But
although I put all the doctor together from the Muhammad Ali research Center
of excellance, the Mayo at Scottsdale and the Doc who did the scans at UCLA,
they still say they don't know for sure what it is They told me to wait two
years (it's been three). But now I can't get the insurance to cover it (last
time they paid a part of it.. it's ws almost 2,000 bucks a shot. Multiply
that times two (flouradopa and glucose) plus the air flight tickets, the
hotel, etc etc and the ordeal of having to go off all PD meds for a day
before taking the pictures, it's super expensive in more ways than one. So
I'm saving my pennies hoping it won't be much longer. All they're going to
ccheck form is to see what direction this disease (Parkinsonism) is going. I
know for a fact it's pulling me downhill, but I want to learn ore. If my kids
ever get this sh_tty disease, maybe I can leave behind some detailed info
about my "condition" so they stand a better chance. Sorry I got so wordy.This
is a real sensitive issue for me (PET Scans).
Good Luck
Maryhelen
=========================================================================
Date: Sun, 13 Jun 1999 15:56:53 EDT
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Maryhelen Davila <[log in to unmask]>
Subject: Re: East meets West
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
ABSOLUTELY WONDERFUL!!
YOU DO SUCH GOOD FOR US!
THANK YOU!
=========================================================================
Date: Sun, 13 Jun 1999 17:54:17 EDT
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: [log in to unmask]
Subject: Harvard Health Letter
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
To: Happy Hunters and Serious Searchers- PWP variety,
The HARVARD HEALTH LETTER,Vol.II,No.2, June,1999,, pp 1-3
MedicalProgress: "New Hope for Parkinson' Treatment's"
brings us up to date and offers encouraging news stating:
"Research efforts to find treatments to slow, halt,
or even
reverse the disease's course are more active than ever before."
=========================================================================
Date: Sun, 13 Jun 1999 18:06:14 EDT
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Parkinson's Disease Foundation <[log in to unmask]>
Subject: Re: Sunday in the Park
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
cappi --
your posting (about raising money with your mom for "puppies for parkinson's"
or whatever it's called) was wonderful. i'm jealous. you canines have ALL
the fun.
sir toby belch (robin elliott's feline)
=========================================================================
Date: Sun, 13 Jun 1999 18:10:53 EDT
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: [log in to unmask]
Subject: Fwd: Harvard Health Letter,,,(continuing...computer bumped me)
MIME-Version: 1.0
Content-Type: multipart/mixed; boundary="part1_947a902.2495866d_boundary"
--part1_947a902.2495866d_boundary
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
HappyHunters...etc
The Harvaard Health Letter editors invite you to visit their website :
http://harvardhealthpubs.org/Harvard_Search
which indexes over 2000 articlesfrom all five of the Harvard health
newsletters.
You can download some at no charge, and others for a small fee.
Give it a whirl ...I'm headed there right now..
[log in to unmask] (Mary Manfredi) Hapy hunting !
1
--part1_947a902.2495866d_boundary
Content-Type: message/rfc822
Content-Disposition: inline
Return-path: [log in to unmask]
From: [log in to unmask]
Full-name: Mehmoirs
Message-ID: <[log in to unmask]>
Date: Sun, 13 Jun 1999 17:54:17 EDT
Subject: Harvard Health Letter
To: [log in to unmask]
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
X-Mailer: AOL 3.0 16-bit for Windows sub 61
To: Happy Hunters and Serious Searchers- PWP variety,
The HARVARD HEALTH LETTER,Vol.II,No.2, June,1999,, pp 1-3
MedicalProgress: "New Hope for Parkinson' Treatment's"
brings us up to date and offers encouraging news stating:
"Research efforts to find treatments to slow, halt,
or even
reverse the disease's course are more active than ever before."
--part1_947a902.2495866d_boundary--
=========================================================================
Date: Sun, 13 Jun 1999 18:09:23 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Ivan M Suzman <[log in to unmask]>
Subject: PWP on stage; and in wheelchair for parade
Comments: cc: [log in to unmask]
MIME-Version: 1.0
Content-Type: text/plain
Content-Transfer-Encoding: 7bit
^^^^^^ WARM GREETINGS FROM ^^^^^^^^^^^^ :-)
Ivan Suzman 49/39/36 [log in to unmask] :-)
Portland, Maine land of lighthouses 78 sticky deg. F :-
********************************************************************
Hi folks,
Hello fello PWP'ers-here I am again cutting a path through the
undergrowth...
I've memorized 18 of 19 songs now - the last one tonight - Elijah Chorus
by Mendelssohn. I still wonder how on Earth I was given the strength
to do all this singing and memorizing in my 14th year of PD.
Oh, Camilla, yes I know Chanticleer- wonderful, clear harmonies!!
Also, our chorus director asked me to write notes about Siyahamba ("We
are
Marching") - a tribute to Nelson Mandela - so, that's in the works, AND
we have a church service and gala parade through Portland on
Saturday--and I am helping to organize a wheelchaired and disabled
persons' delegation that moves SLOWLY, with caregivers and special
friends, through the ENTIRE parade route--
AND, there is talk of TV coverage at the parade- which would be my first
ever appearance IN PUBLIC in a wheelchair--
And, I have developed a scratchy voice from so much rehearsing and
telephoning and excitement....and PD affecting my vocal cords and lung
expansion.
So it's on to technical rehearsal Tues, dress rehearsal Wed, and in
tuxedo,
shows at 8PM, Thurs, Fri and Saturday.
Wish me luck,
Ivan :-0 (singing bass solos)
=========================================================================
Date: Sun, 13 Jun 1999 18:27:48 EDT
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Maryhelen Davila <[log in to unmask]>
Subject: I'M SORRY FOR ERROR MESSAGES
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Dear members
Please try to ignore messages from [log in to unmask] received today (Sunday
6/13/99).
I haven't been able to use the keyboard and Dragon Systems can' seem to
transcribe rom my dictation effforts for a while. Over eagerness to read the
LIST and the lack of assistance (now have for this note) Imy uncontrollable
fingers landed all over the keyboard hitting keys ithey shouldn''t have,
sending old copies of messages, drafts never sent, some meant to have sent
but never did... etc. Some might've been written in the despair of strong
OFF's or in venting that was written just to cool it - but wasn't sent
because it was realized after cooling off that the feelings were wrong in the
first place or a situation changed ----The nightmare of any email author. I
don't recall any messages like that for which I hadn't already apoloized when
I screwed up the first time around, most were very positive I'm sure, but I
MUST EXPRESS TO EVERYONE - NO INCONVENIENCE, CONFUSION OR OFFENSE WAS
INTENDED - I'M SORRY. .
Maryhelen
Pleasenot havng anyone
=========================================================================
Date: Sun, 13 Jun 1999 18:20:52 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Paul Myhre <[log in to unmask]>
Subject: Persistent Abnormal Smells
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit
My name is Norma Myhre and new to the PARKINSN list. I started having
tremors 3 1/2 - 4 years ago and was diagnosed with PD this past March. I am
a participant in a 2 year study and I am taking either Sinemet or
Ropinirole. The tremors seem to be mostly under control but am having
trouble with cramping in my arms, hands and slightly in the legs, sleepless
nights and achiness. Thank you all for sharing information on these
problems and others.
I have an odd problem in that I have experienced a persistent abnormal smell
for the last 2 1/2 years. No one in the family, friends, and especially
those who claim to have a very keen sense of smell can detect the odor.
After CAT scans, x-rays and other tests of the sinuses and nostrils, I was
told it was something I probably will have to live with. I even went to a
hypnotist without any help. Very frustrating! In reading the "The PDF
NEWS" Fall/Winter 1998-1999 issue under "Mary's Mailbag" on page 14 there is
an article "What's That Smell?". It says "We've heard from some PWPs
who've lost their sense of smell, from others who complain of persistent
abnormal smells, .........". Last Monday I sent an e-mail to the PDF
Organization asking for help but have not heard from them. I have also
asked for help from the neurologist but to no avail.
Any information or referrals you might have will be greatly appreciated.
Thank you.
Norma
E-Mail Address: [log in to unmask]
P.S. Barbara Patterson - Thank you for your "Welcome" message.
=========================================================================
Date: Sun, 13 Jun 1999 16:37:01 -0600
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: "M. Dawn Legan" <[log in to unmask]>
Subject: Re: PET Scans
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii; x-mac-type="54455854";
x-mac-creator="4D4F5353"
Content-Transfer-Encoding: 7bit
It seems that a year or so ago I read that there was a new contrast meduim or
new type of scan to show more clearly what's going on in our dopamine-producing
(or not) cells. Does anyone remember this, & is anyone aware of where one might
get such a scan, even if it is still experimental?
Maryhelen Davila wrote:
> I had 2 PET scans. One was Flouradopa. The second was Glucose
=========================================================================
Date: Sun, 13 Jun 1999 18:42:41 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Ivan M Suzman <[log in to unmask]>
Subject: Re: I'M SORRY FOR ERROR MESSAGES
MIME-Version: 1.0
Content-Type: text/plain
Content-Transfer-Encoding: 7bit
Maryhelen,
Nothing in your posts is in any way offensive in my humble opinion. It
shows rather the brave fight you are somehow able to continue fighting.
PD is sometimes ugly, but what it does TO you, your fingers and your
words does not make YOU any problem to me.
I want you to know that I always am watching for your messages.
By the way, list-friends, I heard from several sources that Maryhelen
Davila is widely recognized as having moved Senator McCain's heart so
much that he cried when she once went to see him, and he soon thereafter
became the sponsor of the Udall Bill.
I know sometimes we all make mistakes , but believe me, we forgive you,
Maryhelen!
Ivan :-)
On Sun, 13 Jun 1999 18:27:48 EDT Maryhelen Davila <[log in to unmask]>
writes:
>Dear members
>
>Please try to ignore messages from [log in to unmask] received today
>(Sunday
>6/13/99).
>
>I haven't been able to use the keyboard and Dragon Systems can' seem
>to
>transcribe rom my dictation effforts for a while. Over eagerness to
>read the
>LIST and the lack of assistance (now have for this note) Imy
>uncontrollable
>fingers landed all over the keyboard hitting keys ithey shouldn''t
>have,
>sending old copies of messages, drafts never sent, some meant to have
>sent
>but never did... etc. Some might've been written in the despair of
>strong
>OFF's or in venting that was written just to cool it - but wasn't
>sent
>because it was realized after cooling off that the feelings were wrong
>in the
>first place or a situation changed ----The nightmare of any email
>author. I
>don't recall any messages like that for which I hadn't already
>apoloized when
>I screwed up the first time around, most were very positive I'm sure,
>but I
>MUST EXPRESS TO EVERYONE - NO INCONVENIENCE, CONFUSION OR OFFENSE WAS
>INTENDED - I'M SORRY. .
>Maryhelen
>
>Pleasenot havng anyone
^^^^^^ WARM GREETINGS FROM ^^^^^^^^^^^^ :-)
Ivan Suzman 49/39/36 [log in to unmask] :-)
Portland, Maine land of lighthouses 77 deg. F :-)
********************************************************************
=========================================================================
Date: Sun, 13 Jun 1999 18:46:44 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Jennifer Smith <[log in to unmask]>
Organization: Smoky Mountain Artworks
Subject: NON PD: Email change again!
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Sorry to junk things up but wanted to let everyone know that my email
address is going back to the original. The server I signed on with is
unacceptable and they tried to stick me with a 36 month contract without
telling me upfront. Sorry to be a bother but I am back to
[log in to unmask]
Also, I am signing off for the next month or so. My husband has been
ill and I am working alone and just dont have the energy or the time to
handle the volume of mail until the season is over. I will miss you all
and will be back on as soon as possible. Have a wonderful summer.
Jennifer Smith
--
Ars Longa - Vita Brevis
Art is Long - Life is short
:(:) )
=========================================================================
Date: Sun, 13 Jun 1999 19:38:17 EDT
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: [log in to unmask]
Subject: Re: HARVARD HEALTH LETTER
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
COnt:
I found it ! (I'm not 100% computer literate...you prrobably noticed)
For my computer setup - AOL- one must begin with URL
To wit:
URL; http://www.harvardhealthpubs.org/Harvard_Search
The site is loaded !
[log in to unmask] (Mary Manfredi) fourscoreplus two dx15
=========================================================================
Date: Sun, 13 Jun 1999 19:39:15 -0500
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Nita Andres <[log in to unmask]>
Subject: Re: Mucuna pruiens
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
my husband has found that this more palatable ( for him ) in a little
milk and chocolate syrup with some sugar. He does have a sweet tooth. We
are still experimenting. We bought the one from Utah. Hope this makes
sense to you. I put it on the list because I do not know who if anyone
is taking it. Nita
=========================================================================
Date: Sun, 13 Jun 1999 18:05:27 -0700
Reply-To: [log in to unmask]
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Murray Charters <[log in to unmask]>
Subject: Re: Persistent Abnormal Smells
In-Reply-To: <000301beb5eb$277d07c0$e681ffd0@NLMPRM>
MIME-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7BIT
On 13 Jun 99 at 18:20, Norma Myhre wrote:
> My name is Norma Myhre and new to the PARKINSN list. I started having
> tremors 3 1/2 - 4 years ago and was diagnosed with PD this past March. I am
> a participant in a 2 year study and I am taking either Sinemet or
> Ropinirole. The tremors seem to be mostly under control but am having
> trouble with cramping in my arms, hands and slightly in the legs, sleepless
> nights and achiness. Thank you all for sharing information on these
> problems and others.
>
> I have an odd problem in that I have experienced a persistent abnormal smell
> for the last 2 1/2 years. No one in the family, friends, and especially
> those who claim to have a very keen sense of smell can detect the odor.
> After CAT scans, x-rays and other tests of the sinuses and nostrils, I was
> told it was something I probably will have to live with. I even went to a
> hypnotist without any help. Very frustrating! In reading the "The PDF
> NEWS" Fall/Winter 1998-1999 issue under "Mary's Mailbag" on page 14 there is
> an article "What's That Smell?". It says "We've heard from some PWPs
> who've lost their sense of smell, from others who complain of persistent
> abnormal smells, .........". Last Monday I sent an e-mail to the PDF
> Organization asking for help but have not heard from them. I have also
> asked for help from the neurologist but to no avail.
>
Norma, this is an interesting post.... I seem to have lost my sense
of smell most of the time, but at other times I'm convinced I can
smell something "abnormal" but no one else seems to know what I am
talking about.... I worry that perhaps my body releases chemicals
and I smell bad due to my daily intake of drugs but I have been
reassured that it is not the case. Any ideas anyone??
>
> Any information or referrals you might have will be greatly appreciated.
>
> Thank you.
>
> Norma
>
all the best Norma and welcome to the "PIEnet"... Murray
[log in to unmask]
=========================================================================
Date: Sun, 13 Jun 1999 21:21:18 EDT
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Clare Wilson <[log in to unmask]>
Subject: Re: PWP on stage; and in wheelchair for parade
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
To Ivan: I don't think luck will have any bearing on your performances next
weekend. It's pure professionalism, hard work, and God being with you.
And the PWP supporters rooting for you.
Clare Wilson
=========================================================================
Date: Sun, 13 Jun 1999 22:28:24 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Hilary Blue <[log in to unmask]>
Subject: Re: Persistent Abnormal Smells
Comments: To: [log in to unmask]
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Like you, Murray, I have practically no sense of smell, EXCEPT, when I am
getting a migraine . That has always been part of the aura - light becomes too
bright, sounds become toO loud, everything feels too tight - and smells become
too strong - and that still persists. Even though at normal times i do not
smell anything, pleasant or unpleasant, when i am premigraine, normal ordnary
smells that i could not detect become too strong.
Hilary Blue.
Murray Charters wrote:
>
> On 13 Jun 99 at 18:20, Norma Myhre wrote:
>
> > My name is Norma Myhre and new to the PARKINSN list. I started having
> > tremors 3 1/2 - 4 years ago and was diagnosed with PD this past March. I am
> > a participant in a 2 year study and I am taking either Sinemet or
> > Ropinirole. The tremors seem to be mostly under control but am having
> > trouble with cramping in my arms, hands and slightly in the legs, sleepless
> > nights and achiness. Thank you all for sharing information on these
> > problems and others.
> >
> > I have an odd problem in that I have experienced a persistent abnormal smell
> > for the last 2 1/2 years. No one in the family, friends, and especially
> > those who claim to have a very keen sense of smell can detect the odor.
> > After CAT scans, x-rays and other tests of the sinuses and nostrils, I was
> > told it was something I probably will have to live with. I even went to a
> > hypnotist without any help. Very frustrating! In reading the "The PDF
> > NEWS" Fall/Winter 1998-1999 issue under "Mary's Mailbag" on page 14 there is
> > an article "What's That Smell?". It says "We've heard from some PWPs
> > who've lost their sense of smell, from others who complain of persistent
> > abnormal smells, .........". Last Monday I sent an e-mail to the PDF
> > Organization asking for help but have not heard from them. I have also
> > asked for help from the neurologist but to no avail.
> >
>
> Norma, this is an interesting post.... I seem to have lost my sense
> of smell most of the time, but at other times I'm convinced I can
> smell something "abnormal" but no one else seems to know what I am
> talking about.... I worry that perhaps my body releases chemicals
> and I smell bad due to my daily intake of drugs but I have been
> reassured that it is not the case. Any ideas anyone??
>
> >
> > Any information or referrals you might have will be greatly appreciated.
> >
> > Thank you.
> >
> > Norma
> >
>
> all the best Norma and welcome to the "PIEnet"... Murray
> [log in to unmask]
=========================================================================
Date: Sun, 13 Jun 1999 22:59:48 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Camilla Flintermann <[log in to unmask]>
Subject: NPF Resources outside the USA
Comments: cc: CARE list <[log in to unmask]>
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Friends-- As we often get inquiries about PD resources in other countries
than the USA, I was interested to note that the National PD Assn. supports
affiliated Centers of Excellence in 9 other countries:
China, Argentina, The Netherlands, Japan (2), England, France,
Israel (2),
Canada (2), and Spain.
Persons interested in knowing more about these centers should call the NPF
at 1-800-327-4545 or write them at 1501 N.W. 9th Ave, Bob Hope Road,
Miami,Florida, 33136-1494
Camilla Flintermann, CG for Peter 81/70/55
Oxford, Ohio
http://www.newcountry.nu/pd/members/camilla/one.htm
<[log in to unmask]>
"Ask me about the CARE list for
Caregivers of Parkinsonians ! "
=========================================================================
Date: Sun, 13 Jun 1999 22:58:15 EDT
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: KEn Becker <[log in to unmask]>
Subject: Re: I'M SORRY FOR ERROR MESSAGES
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Relax, Maryhelen, you are among "friends and family"!!! :-)))
Ken B
=========================================================================
Date: Sun, 13 Jun 1999 22:43:50 -0500
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Billie Cook <[log in to unmask]>
Subject: Re: "Fund the Cure" stamps
In-Reply-To: Bonnie Rowley <[log in to unmask]>'s message of Sun, 13 Jun 1999
10:12:56 EDT
Content-Type: Text/Plain; Charset=US-ASCII
Content-Transfer-Encoding: 7Bit
MIME-Version: 1.0 (WebTV)
Bonnie....that seems like a good idea...but where to start?
Billie Cook
=========================================================================
Date: Sun, 13 Jun 1999 23:36:17 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Ivan M Suzman <[log in to unmask]>
Subject: Re: Prevalence of PD
MIME-Version: 1.0
Content-Type: text/plain
Content-Transfer-Encoding: 7bit
List-friends -
Again, I think that the discussion about our numbers is so important that
this
is worth re-posting.
Thank you, Dr. Winterkorn.
Ivan S.
On Sun, 6 Jun 1999 13:55:24 EDT "Jacqueline Winterkorn, PhD, MD"
<[log in to unmask]> writes:
>According to the recent authoritative review of PD in the New England
>Journal
>of Medicine [Lang and Lozano NEJM 339:1044-1053, 1998] Idiopathic PD
>"affects
>over 1 million people in North America." This estimate does not
>include
>people with Parkinson's plus or parkinsonism. The authors also point
>out that
>"Underdiagnosis is common; in recent door-to-door studies, up to 24%
>of cases
>were newly detected at the time of the survey." The authors report
>that
>"neurodegenerative diseases are projected to surpass cancer as the
>second
>most common cause of death among the elderly by the year 2040."
>Jacqueline Winterkorn, PhD, MD
^^^^^^ WARM GREETINGS FROM ^^^^^^^^^^^^ :-)
Ivan Suzman 49/39/36 [log in to unmask] :-)
Portland, Maine land of lighthouses deg. F :-)
********************************************************************
=========================================================================
Date: Sun, 13 Jun 1999 21:12:42 -0700
Reply-To: [log in to unmask]
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: "J. R. Bruman" <[log in to unmask]>
Subject: Re: Levodopa vs. gastric emptying?
MIME-Version: 1.0
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Phil Tompkins wrote:
> We know that Sinemet has to get through the stomach to the small
> intestines to be absorbed.
> Here's a question. I just found this:
> MEDICAL OBSERVER MAGAZINE V4 #8:PART 5, Article "GASTROPARESIS: A
> MOTILITY DISORDER". Contains a statement made in 1995 attributed to
> Australian researcher Dr. Michael Horowitz, an associate professor
> of medicine at the University of Adelaide-Royal Adelaide Hospital in
> South Australia to the effect that levodopa delays gastric emptying.
> http://www.cph.upm.edu.ph/mobs/mobs_aug95_p5.html
>
> Is this correct? If so, then are we are all standing on our own
> bootstraps? Or, if correct, does it apply only to levodopa and not
> to Sinemet?
My own experience, and that of several acquaintances having PD,
contradicts the conventional wisdom that levodopa is absorbed only via
the small intestine. We find that letting the (regular) Sinemet
tablet dissolve in the mouth instead of washing it down with water lets
it "kick in" in a minute or less, instead of a half hour or so. This
practice also lets one take the tablet right after a meal instead of
waiting for the stomach to empty. I haven't seen this reported in the
scientific literature, but I'm told of at least one well-known
professional who advises his patients likewise. Cheers,
Joe
--
J. R. Bruman (818) 789-3694
3527 Cody Road
Sherman Oaks, CA 91403-5013
=========================================================================
Date: Sun, 13 Jun 1999 21:21:01 -0700
Reply-To: [log in to unmask]
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: "J. R. Bruman" <[log in to unmask]>
Subject: Re: Persistent Abnormal Smells
MIME-Version: 1.0
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Paul Myhre wrote:
> My name is Norma Myhre and new to the PARKINSN list. I started having
> tremors 3 1/2 - 4 years ago and was diagnosed with PD this past March. I am
> a participant in a 2 year study and I am taking either Sinemet or
> Ropinirole. The tremors seem to be mostly under control but am having
> trouble with cramping in my arms, hands and slightly in the legs, sleepless
> nights and achiness. Thank you all for sharing information on these
> problems and others.
>
> I have an odd problem in that I have experienced a persistent abnormal smell
> for the last 2 1/2 years. No one in the family, friends, and especially
> those who claim to have a very keen sense of smell can detect the odor.
> After CAT scans, x-rays and other tests of the sinuses and nostrils, I was
> told it was something I probably will have to live with. I even went to a
> hypnotist without any help. Very frustrating! In reading the "The PDF
> NEWS" Fall/Winter 1998-1999 issue under "Mary's Mailbag" on page 14 there is
> an article "What's That Smell?". It says "We've heard from some PWPs
> who've lost their sense of smell, from others who complain of persistent
> abnormal smells, .........". Last Monday I sent an e-mail to the PDF
> Organization asking for help but have not heard from them. I have also
> asked for help from the neurologist but to no avail.
>
> Any information or referrals you might have will be greatly appreciated.
It sounds a bit odd but I too have had olfactory hallucinations (not
recently or often). The sensation was a kind of "chemical" odor related
to, but unlike, turpentine, toluene, benzole, etc. that I knew weren't
really present. I thought hallucinations came with the various dopamine
agonists for PD, but I don't take any. Cheers,
Joe
--
J. R. Bruman (818) 789-3694
3527 Cody Road
Sherman Oaks, CA 91403-5013
=========================================================================
Date: Sun, 13 Jun 1999 21:25:15 -0700
Reply-To: [log in to unmask]
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: "J. R. Bruman" <[log in to unmask]>
Subject: Re: PET Scans
MIME-Version: 1.0
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M. Dawn Legan wrote:
>
> It seems that a year or so ago I read that there was a new contrast meduim or
> new type of scan to show more clearly what's going on in our dopamine-producing
> (or not) cells. Does anyone remember this, & is anyone aware of where one might
> get such a scan, even if it is still experimental?
PET scans will probably be limited for a long time to research, since
the radioactive "markers" to be injected don't last long and are usually
made in a cyclotron, a facility far beyond the means of most hospitals.
Cheers,
Joe
--
J. R. Bruman (818) 789-3694
3527 Cody Road
Sherman Oaks, CA 91403-5013
=========================================================================
Date: Mon, 14 Jun 1999 03:20:44 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: janet paterson <[log in to unmask]>
Subject: Re: Persistent Abnormal Smells
In-Reply-To: <[log in to unmask]>
Mime-Version: 1.0
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hi all
At 18:20 1999/06/13 -0400, norma wrote, in part:
>My name is Norma Myhre and new to the PARKINSN list...
>I have an odd problem in that I have experienced a
>persistent abnormal smell for the last 2 1/2 years...
i understand that
olfactory "irregularities" are a fairly common secondary symptom of pd
[as opposed to new factory irregularities]
one of the funniest 'list hustle' experiences here
was the scammer who signed on in order to promote
sales in aromatherapy!
janet
ps
try a search in the archives using "smell" or "olfactory"
janet paterson
52 now / 41 dx / 37 onset
PO Box 171 Almonte Ontario K0A 1A0 Canada
a new voice http://www.geocities.com/SoHo/Village/6263/
[log in to unmask]
=========================================================================
Date: Mon, 14 Jun 1999 00:14:10 -0600
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: "B. BRUCE ANDERSON" <[log in to unmask]>
Subject: I'm back, e-mailwise.
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
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I have been NO MAIL since 5/31, & am still away from home in Denver visiting
my best friend since i was 4 yrs old, whose father died recently at age 82,
severely affected by PD.
Please note my temporary AT&T e-mail address -good until the end of the
month, when it goes back to [log in to unmask]
Hilary & Randall, our collective letters finally got off to Oprah's
partner, Gerry Laybourne, on 6/6. i never was able to get her home
address, so sent them to her office marked, "NOT A RESUME - PERSONAL." Keep
yur fingers crossed!!
Bruce Anderson [53, 5]
[log in to unmask]
Schooley's Mtn., NJ
=========================================================================
Date: Mon, 14 Jun 1999 03:36:11 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: janet paterson <[log in to unmask]>
Subject: Re: Persistent Abnormal Smells / ps
In-Reply-To: <[log in to unmask]>
Mime-Version: 1.0
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... one more thing ...
At 18:20 1999/06/13 -0400, norma wrote, in part:
>After CAT scans, x-rays and other tests of the sinuses and
>nostrils, I was told it was something I probably will have
>to live with. ... I have also
>asked for help from the neurologist but to no avail...
feeling a tad 'short' tonight
i will say this:
if your neuro hasn't heard of this as a secondary pd symptom
it's time to look for a new one
a pd specialist
janet
janet paterson
52 now / 41 dx / 37 onset
PO Box 171 Almonte Ontario K0A 1A0 Canada
a new voice http://www.geocities.com/SoHo/Village/6263/
[log in to unmask]
=========================================================================
Date: Mon, 14 Jun 1999 04:04:36 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: janet paterson <[log in to unmask]>
Subject: PMID: 10348474: Quetiapine for drug-induced psychosis in PD
Mime-Version: 1.0
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Quetiapine for the treatment of drug-induced psychosis in Parkinson's disease.
Quetiapine is an atypical antipsychotic with clozapine-like pharmacology
but without associated agranulocytosis.
We report our complete experience with quetiapine for the treatment of
drug-induced psychosis (DIP) in Parkinson's disease (PD).
Thirty-five patients with PD and DIP aged 75 years (range, 58-89) with a
mean PD duration of 8.4 years on an average of 427 mg levodopa per day
received a mean dose of 40.6 mg quetiapine daily.
Twenty of 24 neuroleptic-naive patients reported marked improvement of
psychosis without a decline in motor function as assessed by the Unified
Parkinson's Disease Rating Scale (UPDRS-motor).
Ten patients had a baseline and 4-week follow-up assessment using the
Mini-Mental Status Examination (MMSE) and Brief Psychiatric Rating Scale
(BPRS).
The improvement in BPRS score (32.6 versus 22.8) was clinically and
statistically significant (p = 0.024).
Three of 24 were unable to tolerate quetiapine because of orthostatic
hypotension, headache, nausea, and persistence of hallucinations.
One patient died of an unrelated cause.
We also tried to switch 11 psychiatrically stable patients on clozapine
(eight) and olanzapine (three).
Five patients made this transition without a loss of effect as measured on
BPRS and MMSE.
Six did not (five on clozapine, one on olanzapine) because of confusion,
erratic behavior, and increased hallucinations.
No crossover failure had worsened PD except for increased tremor in one.
Quetiapine is useful and well-tolerated as a first drug to treat DIP in PD
but must be used cautiously to replace other atypical antipsychotic drugs.
Mov Disord 1999 May;14(3):484-7
Fernandez HH, Friedman JH, Jacques C, Rosenfeld M
Department of Neurology, Brown University School of Medicine, Memorial
Hospital of Rhode Island, Pawtucket 02860, USA.
PMID: 10348474, UI: 99276230
<http://www.ncbi.nlm.nih.gov/PubMed/>
janet paterson
52 now / 41 dx / 37 onset
PO Box 171 Almonte Ontario K0A 1A0 Canada
a new voice http://www.geocities.com/SoHo/Village/6263/
[log in to unmask]
=========================================================================
Date: Mon, 14 Jun 1999 04:07:44 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: janet paterson <[log in to unmask]>
Subject: PMID: 10348468: Clinical rating of dyskinesias in PD: use and
reliability
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Clinical rating of dyskinesias in Parkinson's disease:
use and reliability of a new rating scale.
Drug-induced dyskinesias (DID) manifested as hyperkinetic and/or dystonic
movements or postures are common problems in Parkinson's disease (PD).
Novel therapeutic interventions may offer possibilities to counteract these
common adverse effects of an otherwise necessary treatment.
To be able to evaluate the effects of such interventions on DID, reliable
and relevant clinical assessment tools are needed.
We tested the inter- and intrarater reliability of a new clinical
dyskinesia rating scale consisting of separate ratings of different body
parts, including lateralization and separate ratings of dystonia and
hyperkinesias.
Interrater reliability was tested both with and without a defined scoring
code and clarification of the dystonia section.
The nondefined version was also tested for intrarater reliability.
Thirteen raters independently reviewed 23 videotape sequences showing PD
patients performing standardized motor tests.
Inter- and intrarater agreement was significant in all evaluations, and no
differences were detected when comparing ratings performed with the defined
and nondefined version of the scale.
The rationale for, and the role and use of, the present scale are addressed.
Mov Disord 1999 May;14(3):448-55
Hagell P, Widner H
Department of Clinical Neuroscience, University Hospital, Lund, Sweden.
PMID: 10348468, UI: 99276224
<http://www.ncbi.nlm.nih.gov/PubMed/>
janet paterson
52 now / 41 dx / 37 onset
PO Box 171 Almonte Ontario K0A 1A0 Canada
a new voice http://www.geocities.com/SoHo/Village/6263/
[log in to unmask]
=========================================================================
Date: Mon, 14 Jun 1999 04:10:59 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: janet paterson <[log in to unmask]>
Subject: PMID: 9387804: Neuroleptic malignant syndrome in PD: risk factors.
Mime-Version: 1.0
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Neuroleptic malignant syndrome in parkinsonian patients: risk factors.
A syndrome resembling the neuroleptic malignant syndrome (NMS) is known to
develop occasionally following interruption of dopaminergic medications in
patients with Parkinson's disease.
However, NMS can develop even without withdrawal of antiparkinsonian drugs.
In parkinsonian patients who continually received dopaminergic medications,
the development of NMS occurred exclusively in warm seasons, May to August.
The development of NMS could occur at any season in association with the
cessation of dopaminergic drugs.
A female parkinsonian patient showed two episodes of NMS during the
premenstrual period.
It is suggested that hot weather or dehydration and aggravation of
parkinsonism premenstrually constitute risk factors for the development of
NMS, in addition to withdrawal of antiparkinsonian drugs.
Eur Neurol 1997;38 Suppl 2:56-9
Kuno S, Mizuta E, Yamasaki S
Utano National Hospital, Narutaki, Kyoto, Japan.
[log in to unmask]
PMID: 9387804, UI: 98046997
<http://www.ncbi.nlm.nih.gov/PubMed/>
janet paterson
52 now / 41 dx / 37 onset
PO Box 171 Almonte Ontario K0A 1A0 Canada
a new voice http://www.geocities.com/SoHo/Village/6263/
[log in to unmask]
=========================================================================
Date: Mon, 14 Jun 1999 04:28:45 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: janet paterson <[log in to unmask]>
Subject: The Latest PD Overview: Harvard Health Letter May 1999
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MEDICAL PROGRESS
New Hope for Parkinsons Treatments
Ever since the British doctor James Parkinson first described the disease
that bears his name in 1817, the search for Parkinsons treatments has been
marked by both hope and disappointment. In the 1940s and 50s, for example,
doctors were optimistic that an operation called pallidotomy could reduce
or halt the tremors, rigidity, and slowed movements that characterize this
degenerative brain disorder. But their hopes were soon tempered by concerns
that the procedure carried too high a risk of inflicting severe
neurological damage.
Because of this, and because of the arrival of the drug levodopa (L-dopa)
in 1968, pallidotomy was subsequently abandoned. With none of the hazards
of surgery, L-dopa could control tremor, relieve painfully slow movements,
and reduce rigidity. Today, the
most widely used and effective form of the drug is Sinemet, a combination
of levodopa and a related substance called carbidopa, which helps prevent
L-dopa from breaking down before it reaches the brain.
However, as more patients were treated with L-dopa over the years, it
became obvious that the drug has its own share of problems. For reasons
scientists dont understand, the medications benefits wane. After about
five years, approximately half of those taking Sinemet fall into an
"on-off" pattern, in which "frozen" periods of impaired movement
(bradykinesia) alternate with intervals of excessive and uncontrolled movement
(dyskinesia).
Now, scientists and doctors have once again emerged from their labs and
clinics with a spate of hopeful discoveries - as well as improvements to
previous therapies. Pallidotomy, for example, has returned in the past few
years as a much safer procedure, and one that is particularly effective at
reducing the dyskinesia caused by long-term Sinemet use. Meanwhile, several
new medications have recently become available that may enhance the
effectiveness of L-dopa or reduce or delay its use.
Parkinsons disease is one of several illnesses that cause parkinsonism - a
term that refers to any condition marked by slow, trembling, or rigid
movements. But Parkinsons disease carries a unique neurological signature:
the selective, progressive death of nerve cells in a small area of the
brain called the substantia nigra. These specialized cells manufacture the
chemical messenger dopamine, which is essential for smooth
and normal movement.
Although Parkinsons is not a terminal illness, its symptoms worsen over
time as more and more nerve cells are destroyed. No one knows what causes
the disease, which affects about 1 million Americans, but older age seems
to be the most important risk factor. The majority of affected individuals
are diagnosed after age 65, although about 10% have a less common,
early-onset form of the disease that strikes before 40.
L-dopa remains the "gold standard" of Parkinsons treatment; it works by
increasing the amount of dopamine in the brain. However, because the drugs
effectiveness diminishes over time, most doctors recommend delaying
treatment with Sinemet as long as
possible and starting with other drugs.
In 1997, the U.S. Food and Drug Administration (FDA) approved two new drugs
- pramipexole (Mirapex), manufactured by Pharmacia & Upjohn, and ropinirole
(Requip), from SmithKline Beecham Pharmaceuticals - that may put off the
use of L-dopa. These
medications are the latest additions to an existing class of drugs called
dopamine agonists, which trick the brain into believing there is more
dopamine on hand than there really is.
The new drugs are approved for both early use as single-drug therapies and
to be taken in combination with Sinemet later on. All dopamine agonists can
cause nausea, confusion, and nightmares, but the new drugs are believed to
cause fewer of these side effects than older members of this class.
In early 1998, the FDA approved tolcapone (Tasmar), the first of a new
class of Parkinsons medications called COMT inhibitors. These drugs
enhance the effectiveness of levodopa by blocking the enzyme
catechol-O-methyltransferase, which causes L-dopa to break down before
reaching the brain. Tasmar was initially intended for individuals who were
responding fairly well to Sinemet as well as those in whom Sinemets
effectiveness had waned.
However, in light of a report issued late last year linking Tasmar to three
fatal liver injuries, the medication is now recommended only for people who
do not have severe movement abnormalities and who do not respond to or are
not appropriate candidates for other available treatments. The report,
which was released by the FDA and Hoffman-LaRoche, Inc., Tasmars
manufacturer, also advised anyone taking the drug to have frequent blood
tests to monitor liver function.
Surgery makes a comeback
Pallidotomy has gained new popularity in recent years. A five-year Harvard
study presented at a neurological conference last year indicated that about
70% of 85 Parkinsons patients who underwent pallidotomy experienced good
to excellent improvements in mobility. Last year, Medicare agreed to cover
the cost of the
surgery, which ranges from $20,000 to $40,000. Only 5%-10% of patients,
whose symptoms can no longer be controlled by Sinemet, are candidates for
pallidotomy. Although the surgery wont cure the disease, it can improve
slowed movements, rigidity, and
tremor and lessen the uncontrolled movements caused as a side effect of
Sinemet. The operation targets one side of the globus pallidus, an area of
the brain that appears to become overactive in Parkinsons patients.
Surgeons use magnetic resonance imaging
(MRI) to visualize the globus pallidus and then insert an electrode probe
to destroy a small portion of its cells. Pallidotomy relieves symptoms
mainly on one side of the body, because operating on both sides of the
brain is very risky.
Pallidotomy is safer than it used to be due to improvements in imaging
technology that allow doctors to more accurately target the right area of
the brain. However, it still carries risks; the most serious complication
is stroke, which occurs in about 1%-3%
of cases.
In August 1997, the FDA approved an implanted electronic brain stimulator
that can reduce tremors in many people with Parkinsons disease or
essential tremor, a disorder that causes involuntary shaking but no other
symptoms. (For more on essential tremor, see Harvard Health Letter, March
1999.) An electrode is surgically inserted into one side of the thalamus,
the part of the brain believed to cause tremors. A wire attached to the
electrode is threaded just under the scalp and connected to a
pacemaker-like generator implanted near the collarbone. When activated, the
device sends a constant stream of electrical waves to the brain, blocking
tremors.
In the genes
In 1997 and 1998, scientists identified for the first time two gene
abnormalities present in Parkinsons patients whose families have a high
prevalence of the disease, indicating that at least some cases are
inherited. Both abnormalities cause the body to
produce an altered version of a protein that plays a role in the function
of nerve cells.
A subsequent study in the January 27, 1999, Journal of the American Medical
Association suggested that heredity has a major influence in causing only
the early-onset form of the disease. Researchers led by those at the
Parkinsons Institute in Sunnyvale, California, contacted 19,842 male twins
age 65 and older and identified 172 twin pairs in which at least one twin
had Parkinsons.
If the condition is hereditary, the investigators reasoned, the rate of
twins both having the disease should be lower among fraternal twins, who
share some but not all of the same genes, than among identical ones, whose
genetic makeups are exactly alike. In individuals who were diagnosed after
age 50, the rate of twins who both had the disease was similar among
fraternal and identical twins. However, in those diagnosed at 50 or
younger, the rate was much lower in fraternal twins.
Making the diagnosis
Unfortunately, there is no single test that can nail down a Parkinsons
diagnosis. Instead, doctors make the call based on the presence of tremor,
stiffness, and slowed
movement. However, this often leads to misdiagnosis, since many other
conditions - including essential tremor, drug-induced parkinsonism, and
arthritis - can cause similar symptoms.
For the past ten years, scientists around the world have been working to
find a way to visualize the characteristic loss of dopamine-producing cells
that occurs in the brains of Parkinsons patients. In one line of research,
Harvard investigators identified a chemical called altropane, which binds
to dopamine nerve cells and lights them up on a special imaging instrument
- a single photon emission computed tomography (SPECT) machine. After being
injected with a small amount of altropane, a person would place her or his
head in the machine, which visualizes the brain. Meanwhile, Yale
researchers have been studying another promising imaging agent, called
beta-CIT, which could also be
used with SPECT to identify Parkinsons.
SPECT instruments can be found in almost every medical center in the
country, and doctors are currently testing the safety and effectiveness of
altropane and similar agents. Thus, a reliable diagnostic test for
Parkinsons disease could be a reality within a few years.
On the horizon
Researchers are currently investigating a number of agents that they hope
can somehow prevent dopamine-producing nerve cells from dying. One such
compound, called glial-derived neurotrophic factor (GDNF), is a naturally
occurring substance that has been found to markedly improve Parkinsons
symptoms in animal studies. GDNF is currently being tested in human trials
of individuals with advanced Parkinsons.
Another experimental approach involves transplanting dopamine-producing
human or pig fetal cells into the brains of Parkinsons patients. In
preliminary studies, these transplants improved patients symptoms for up
to two years and enabled some of them to lower their dose of L-dopa.
However, this field of inquiry is plagued by controversy; opponents argue
that the use of human fetal tissue is morally wrong and that using pig
cells could pose unknown risks.
Several research teams are currently experimenting with genetically
engineered skin cells and a variety of other human and animal cells that
can be "taught" to produce dopamine. Cell transplantation is a hot area of
investigation, but its benefits
will probably not be available to Parkinsons patients for many years.
Although doctors still dont know what causes Parkinsons or how to cure
it, research efforts to find treatments to slow, halt, or even reverse the
diseases relentless progression are more active than ever before. There
will be setbacks, of course. But for both investigators determined to find
answers and individuals living with the disease, hope springs eternal.
References:
Lang AE and Lozano AM. Medical Progress: Parkinson's Disease,
First of Two Parts. New England Journal of Medicine, October 8,
1998, 339: 1044-53.
Lang AE and Lozano AM. Medical Progress: Parkinson's Disease,
Second of Two Parts. New England Journal of Medicine, October 15,
1998, 339: 1130-43.
Tanner CM, et al. Parkinson's Disease in Twins: An Etiologic
Study. Journal of the American Medical Association, January 27,
1999, 281: 341-46.
Web sites:
American Parkinson's Disease Association at
<http://www.apdaparkinson.com>
National Institute of Neurological Disorders and Stroke at
<http://www.ninds.parkinson.org>
National Parkinson Foundation Inc. at
<http://www.parkinson.org>
Harvard Health Letter
Volume 24 Number 8 June 1999
Editor-in-Chief Stephen E. Goldfinger, M.D.
Editor Leah R. Garnett
Web related inquiries: [log in to unmask]
<http://www.harvardhealthpubs.org/Ltxt.html>
janet paterson
52 now / 41 dx / 37 onset
PO Box 171 Almonte Ontario K0A 1A0 Canada
a new voice http://www.geocities.com/SoHo/Village/6263/
[log in to unmask]
=========================================================================
Date: Mon, 14 Jun 1999 07:37:40 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: janet paterson <[log in to unmask]>
Subject: QT: final
Mime-Version: 1.0
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Final
the question concerns all the creatures living within you
you write your name in the appropriate place the date
already you're taking too long
already you're late and getting later
already your loved ones are leaving
already you've started over
already to no avail
if you knew how this subject of all subjects eluded you
would you know where to look for it
whether your name is written backward or forward
and those numbers what they mean
your hand the one holding the pen your mind
already your mind
James Baker Hall
The Mother on the Other Side of the World
Sarabande Books
Copyright =A9 1999 by James Baker Hall.
All rights reserved.
Reproduced by Poetry Daily with permission.
<http://www.poems.com/>
janet paterson
52 now / 41 dx / 37 onset
PO Box 171 Almonte Ontario K0A 1A0 Canada
a new voice http://www.geocities.com/SoHo/Village/6263/
[log in to unmask]
=========================================================================
Date: Mon, 14 Jun 1999 08:07:20 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: john bjork <[log in to unmask]>
Subject: Harvard Health Letter- PD Update
Comments: To: [log in to unmask]
MIME-Version: 1.0
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Janet: Thanks for making the Harvard Health Letter Report on PD
available. I thought it was an excellent overview of the disease, and
the latest treatments as well.
John Bjork
=========================================================================
Date: Mon, 14 Jun 1999 08:11:02 EDT
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: ".Joan Waterman" <[log in to unmask]>
Subject: Re: Dyskinesia and STN
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Hans,
I certainly am appreciating all your information about the STNDBS as I am
anticipating taking that route as soon as it is totally approved. It scares
me to think about it, but it frightens me more to think of life without it!
Ruth Clark
=========================================================================
Date: Mon, 14 Jun 1999 08:46:57 EDT
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Bonnie Rowley <[log in to unmask]>
Subject: Re: Harvard Health Letter- PD Update
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janet,
I second John's THANKS.
In a message dated 6/14/1999 8:26:37 AM Eastern Daylight Time,
[log in to unmask] writes:
> Janet: Thanks for making the Harvard Health Letter Report on PD
> available. I thought it was an excellent overview of the disease, and
> the latest treatments as well.
>
> John Bjork
>
=========================================================================
Date: Mon, 14 Jun 1999 08:48:41 EDT
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Gina Cass <[log in to unmask]>
Subject: Travel No More/Beaten - Long Piece
Comments: To: [log in to unmask], [log in to unmask], [log in to unmask], [log in to unmask]
Comments: cc: [log in to unmask], [log in to unmask]
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TO: My fellow PD's (maybe not in spirit but in disease)
I need to tell you this tale for me to get it out, not necessarily to have
you respond or even understand.
I was invited to New Hampshire by friends for a rest of 2 yrs of changes,
flight from Elkhart, Indiana to Manchester, New Hampshire was uneventful. I
stayed for a week and headed back to Indiana on Friday, June 10 flying a well
known Airline that I will name after I talk to the CEO, on their position.
My first flight out of Manchester was late, making me miss my connection in
Newark, NJ. They had advance notice that I needed a wheelchair to get to the
next gate on the other side of the airport which was not there. It seemed to
be a hinderance to get one and the person pushing was having a conversation
with someone I could not see. They were discussing a picture of a fire and
if this person had taken the photo.
Like I stated I missed my connection in Newark to Cleveland. The next flight
to Cleveland was the one I was booked on this one was delayed due to a light
that would not light. Yes the thing that it was attached to had to work and
was but we needed that light, I understand. I started flying at 10:05AM EDT.
from New Hampshire. I asked at each leg of this adventure to preboard due to
using a cane.
Was told that was fine but had to remind them each time. One time they
completely forgot and I had to battle the crowd, which don't care if you walk
or not.
They no longer have meals on the flights so I was having a problem finding
things to eat. Need to eat after some of the meds. O'hare I found best to
get a light something to eat OH that is later.
I finally got to Cleveland, OHIO. I kept telling my hosts I did not want to
go to Cleveland. Over and over was my lament. But Cleveland is a hub city
of this particular Airline. I orginally started with a 4 hr layover in
Cleveland but due to missed flights, hobbling to gates etc, I had about 1 hr.
This was a trek from Concourse C to B opposite sides of the airport (Why are
they so far apart?) I had not been able to take my meds, I was hot, tired and
upset. But I had done so well this whole week. I was right "on". While
standing in line at the check-in I found out my flight from Cleveland had
been delayed. Twenty minutes later the flight was cancelled. Due to
weather. I looked around and not a cloud or problem appeared. I felt it
coming, but I could not stop any of it. Standing in line, I mentally went
away. A wonderful young woman, her husband and daughter together asked if I
was OK. She took a hold of my arm, took me out of line, set me down, and
asked if I was diabetic (I could only nod), I couldn't get out the fact I had
Parkinson's. My Tremors had gone crazy. I was shaking so violently that it
was hard to hold my ticket. They gave me juice, candy and something in a
tube called glucose. Told me they first thought I was drunk or needed a
drink and then realized that something else was wrong due to the color of my
skin, plus the fact of the cold, clammy touch. The Airline representative
commented that she was going to get to me next. TOO LATE
An ambulance was called, Perimedics put me in ambulance, and took me to a
hospital due to the fact that my blood pressure was dangerously high and my
blood sugar was so high. They kept saying something about my heart and
wanting to give me Nitro. In my confused state I cannot remember what they
said. I will call hospital and have them tell me.
Nice little hospital, close to airport. Doctor was very busy, say him only
very briefly but was hooked to D5 to lower everything. I told them I needed
something to eat to take meds which I was allowed to use my own was given a
snack that was wonderful. I was treated to a 6hr stint there with various
nurses visiting, sitting on my bed and talking, a wife of another Emergency
Room guest bringing her chair over to my cube and sitting with me. I do have
a way with some people of being there for them and putting them at ease. Two
ladies from the airline brought me Vouchers to go to a Hotel that night what
was left of it, to stay the night, Taxi Vouchers, and meal vouchers. They
finally arrived after 3 hrs of promises that the vouchers were on there way.
Remember the Airport is very close to the Hospital. I was finally released
and got a cab. The young man was very rude to start but I just wanted to get
to a room, take a shower and rest. He refused to take my travel voucher due
to the fact he picked me up at the hospital and not the airport. So I paid
him. Got into Hotel and asked for my room and was told I did not have a
room. The real confusing part was they had my luggage. Why did it go there
if I had no room? I cracked, crying, I called home to rant, when the hotel
staff person said they had a room at the other hotel for me and a shuttle to
take me. I ended up 25 minutes away from the airport now and not 5 minutes,
1:30 AM no food (I had some trail mix luckly) and so upset I could not get
right to sleep. I had about 4 hrs sleep, ordered breakfast that cost $11.23
when the voucher was for only $8.00, and I ordered just a basic no frills
breakfast.
Got a shuttle, just for me to the airport for the flight the Airline had put
me on. Which the Airport was a zoo, then I got to the check-in and again my
flight was cancelled due to weather (South Bend nor Cleveland had a weather
problem, I checked). The next( 12:00) flight was cancelled (Feeling like
the "Out-of-Towner). They had put me on a 1:45 PM flight on another airline
to Chicago O'Hare now. This flight had been schduled to leave at 12:03 now
was leaving at 1:45 PM, I felt that this would end up like the other flights.
I went up to the counter, placed my ticket up there and said I am very ill
and I need to get home now. She looked at me and agreed so booked me on the
1:30 PM flight to Chicago as I wanted to travel with the couple that had been
there for me. This flight was delayed. We got to Chicago O'hare with no
problems. No Wheelchair again, they called for one but it never came. No
Electric Cart either and I was so scared that I would miss the next and final
flight. From D Concourse to B Concourse walking with my cane but I made it
with time to spare. Also, found a little stand and got some water, and a
lunchable to eat to take meds. This flight was delayed once not due to
weather but something else. Oh yes the flight never came.
I finally got to South Bend, Indiana (Notre Dame Fame) with one piece of
luggage with the other piece coming 20 minutes later.
This is a Nightmare that wouldn't end. I am beat physically and emotionally.
I lack the faith that I did have in myself. I know many will say don't
travel alone, but I am new at this. I have always been fiercely independent
and now have to confront my limitations.
I just needed to get this out and thanks for understanding.
gina
=========================================================================
Date: Mon, 14 Jun 1999 09:03:27 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: janet paterson <[log in to unmask]>
Subject: Re: Harvard Health Letter- PD Update
In-Reply-To: <[log in to unmask]>
Mime-Version: 1.0
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hey john and bonnie and all
thanks for your thanks re posting this
i owe it to mary manfredi digger extraordinaire who found it
and to sharon cg for bob who asked the simple question about surgeries
this one is going on the bus!
janet
janet paterson
52 now / 41 dx / 37 onset
PO Box 171 Almonte Ontario K0A 1A0 Canada
a new voice http://www.geocities.com/SoHo/Village/6263/
[log in to unmask]
=========================================================================
Date: Mon, 14 Jun 1999 09:14:39 EDT
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Bonnie Rowley <[log in to unmask]>
Subject: I ASK AGAIN - "Fund the Cure" Stamps ?
Comments: To: [log in to unmask]
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PIE & CARE
Listen up!
If this is true that the Post Office offers stamps that contribute to the
fund raising for the research of cancer - is it right that cancer be singled
out by the PO? Mail around the world has to use postage so this is not just a
U.S. issue.
Do we go to legislators or do we go to Post Office officials to get PD in on
this contribution deal? Who do we contact to have stamps printed up for PD &
it's research?
Bonnie
daughter of Jim 77/3
=========================================================================
Date: Mon, 14 Jun 1999 09:50:12 -0700
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Don McKinley <[log in to unmask]>
Subject: PENNIES FOR PARKINSON
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hi i got 5 cans out for pennies do not know how much yet. am going to let
them be for a while. oh did i say i gave in and accept vice pres. of our
support group. has any one yet tried a lazier light to walk with? hate to
buy one to see if it works. because of the hot whether VIVIAN got me some
new to drink. in place of so much water,ice tea. was getting lot of leg
cramps. they said i was loosing my leech. lights. they said that was very
bad. its been 90 to 93 all i do is set. oh well what are we PWP suppose to
know. lolo and my razor backs are all fence in so they did not get email.
maybe CINNY. FLYING PIGS. whitish it white hat might ship some your way lolo
VIVIAN is going to help a friend of our of 50 years get a wig. (cancer) they
give her 6 months to a year. when i first got PD. she was hear for me. some
one is coming from church i said no i got to try to be on my own.
I.Y.Q. DON AND VIVIAN
LOVE OF MY LIFE-54
BEST MEDS FOR PD IS
TO SMILE AT A STRANGER
[log in to unmask]
http://wcoil.com/~flash
=========================================================================
Date: Mon, 14 Jun 1999 09:51:42 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: janet paterson <[log in to unmask]>
Subject: Re: Travel No More/Beaten / not beaten,
just a tough test - passed!
Comments: cc: gina cass <[log in to unmask]>
In-Reply-To: <[log in to unmask]>
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
my dear gina
At 08:48 1999/06/14 EDT, you wrote, in part:
>...I need to tell you this tale for me to get it out,
>not necessarily to have you respond or even understand...
i know that it helps simply to get some frustrations 'out'
and also that physically writing it all down
not just talking about it
helps the best in terms of brain chemistry
>I was invited to New Hampshire by friends for a rest of 2 yrs of
>changes, flight from Elkhart, Indiana to Manchester, New Hampshire
>was uneventful. I stayed for a week and headed back to Indiana
>on Friday, June 10 flying a well known Airline that I will name
>after I talk to the CEO, on their position...
>They had advance notice that I needed a wheelchair to get to the
>next gate on the other side of the airport which was not there...
my last experience with 'asking for assistance'
not easy for a stubborn independent cuss like me
[sounds familiar]
was christmas 97 when i flew from bermuda to ottawa
moving 'home' with some of my worldly goods and my four cats
i was advised by a close friend to take the 'assistance' from my front door
whether i 'needed' it or not, whether i was 'on' or not
it makes a 'statement' to arrive at the airport
in a wheelchair
i have concluded since that this was very wise and very clever advice
it doesn't make any 'statement' to arrive on foot / cane
and then say you 'might' need a wheelchair
so i was wheeled into each plane and wheeled out of each plane
[two stops]
so, each time, i had a 'pusher' who was 'in charge' of me
a human
an airport staffer
who knew all the ropes and cut through all the red tape
it was like being a v.i.p.
i sat quietly serenely twiddling my thumbs and looking around
while the 'pusher' and the ticket agents worked their magic
each time when they were done,
i held out my hand and the completed ticket folder was placed in it
right side up
going through customs and immigration at the ottawa airport
was equally painless and peaceful
even though i was moving back to canada after an absence of 16 years
had a container of possessions following me by ocean freight
and had a slew of veterinary inspected and certified
felines with me
the 'pusher' dealt with the customs officers
came back to me to ask one or two pertinent questions
hustled right back to them
and
voila
i was on my regal stately wheeled way once again
[as stately as possible with four cat carrier boxes howling beside me]
my papers and documents and shipping manifests and declarations
all stamped and approved and no problemmo
'welcome home, ms paterson'
>It seemed to be a hinderance to get one and the person pushing
>was having a conversation with someone I could not see...
at one stage
when the wheelchair and 'pusher' hadn't arrived at the plane
and i was due to make a connection
the flight attendant
[who had seen me walk [slowly] up the aisle to the exit]
asked me if i 'really' needed the wheelchair
and looked impatient to get off duty
[she had to wait while the 'pusher' was located]
i was not in the guilt trip acceptance mode at that time
i simply said 'yes'
and sat down
the ultimate immoveable object
>They no longer have meals on the flights so I was having
>a problem finding things to eat. Need to eat after some
>of the meds. O'hare I found best to get a light something
>to eat OH that is later...
since i am on a 90 minute med schedule
whenever i walk out the front door, i run through my checklist:
"keys: check, money: check, meds: check, coke: check, cookies: check"
it all goes into my admittedly large carryall bag
[aka the "schlepper"]
[i got it at hammacher schlemmer]
>I lack the faith that I did have in myself. I know many
>will say don't travel alone, but I am new at this. I have
>always been fiercely independent and now have to confront
>my limitations...
you can't lose 'faith' in yourself
just because you went through a difficult time
you didn't bring the difficulty on yourself
the fact that you are home and writing about it to us
says to me that you got through it and are learning from it even now
that was the whole point of the exercise
'confronting our limitations' doesn't mean rolling over and playing dead
it means looking at the situation from both sides of the perception screen
and taking the most graceful route
you are not responsible for the way people treat you
you are only responsible for the way you treat others
if 'walking' and 'caning' doesn't produce the responses you need
then you have the choice of 'upping the ante' to 'wheeling'
doesn't cost any extra
and is less stressful on all concerned
i.e. it may be a new [and possibly uncomfortable] experience for you
[trust me, you'll get over that!]
but it's a familiar 'been there, been trained in that' experience for the
staff
they 'expected me' to be in a wheelchair
and by gum
i gave them what they expected
>I just needed to get this out and thanks
>for understanding.
thanks for telling us
you've inspired me to write this
maybe, with a little luck, our combined tales will help others
love
janet
janet paterson
52 now / 41 dx / 37 onset
PO Box 171 Almonte Ontario K0A 1A0 Canada
a new voice http://www.geocities.com/SoHo/Village/6263/
[log in to unmask]
=========================================================================
Date: Mon, 14 Jun 1999 08:58:21 -0500
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Linda Warrenburg <[log in to unmask]>
Subject: Re: "Fund the Cure" Stamps
MIME-Version: 1.0
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Bonnie, you wrote:
> If this is true that the Post Office offers stamps that contribute to the
> fund raising for the research of cancer -
It is true. When I first saw the post re: the stamps, I thought that it had
to be a hoax. But I found the web site for the US Postal Service, & low and
behold, it was there in print. As who to contact, I wouldn't have the
foggiest....maybe our Senators? Maybe someone else will know who to
contact.
Linda, CG for Ben 69/5
=========================================================================
Date: Mon, 14 Jun 1999 10:20:00 EDT
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Virginia Christiansen <[log in to unmask]>
Subject: ANOTHER DAY IN THE LIFE ... of a VERY sad face.
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"You may be surprised that your sad face prodded a little boy to be curious
and, therefore, caused his granny to reflect on your words. Maybe the
granny has come across others who are, also, suffering from PD or other
illness and this was the "straw" that moved her into educating herself about
PD."
Your story strikes me that this was a caring young boy who wanted to help
someone with a sad face. Children are intuitive and it was not meant to be
mean .... I think he cared and your response was wonderful.
Virginia Christianse
[log in to unmask]
White Plains, NY
=========================================================================
Date: Mon, 14 Jun 1999 09:32:26 -0500
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Terry Kempf <[log in to unmask]>
Subject: Re: Persistent Abnormal Smells
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Norma,
I have smelled a sweet, hard to describe smell now and then. I thought
it was half an hour or so after taking Artane, but I'm not sure. I need to
do the diary thing keeping track of what I do when and when things haappen
like the smell.
Terry
----------
> From: Paul Myhre <[log in to unmask]>
> To: [log in to unmask]
> Subject: Persistent Abnormal Smells
> Date: Sunday, June 13, 1999 5:20 PM
>
> My name is Norma Myhre and new to the PARKINSN list. I started having
> tremors 3 1/2 - 4 years ago and was diagnosed with PD this past March. I
am
> a participant in a 2 year study and I am taking either Sinemet or
> Ropinirole. The tremors seem to be mostly under control but am having
> trouble with cramping in my arms, hands and slightly in the legs,
sleepless
> nights and achiness. Thank you all for sharing information on these
> problems and others.
>
> I have an odd problem in that I have experienced a persistent abnormal
smell
> for the last 2 1/2 years. No one in the family, friends, and especially
> those who claim to have a very keen sense of smell can detect the odor.
> After CAT scans, x-rays and other tests of the sinuses and nostrils, I
was
> told it was something I probably will have to live with. I even went to
a
> hypnotist without any help. Very frustrating! In reading the "The PDF
> NEWS" Fall/Winter 1998-1999 issue under "Mary's Mailbag" on page 14 there
is
> an article "What's That Smell?". It says "We've heard from some PWPs
> who've lost their sense of smell, from others who complain of persistent
> abnormal smells, .........". Last Monday I sent an e-mail to the PDF
> Organization asking for help but have not heard from them. I have also
> asked for help from the neurologist but to no avail.
>
> Any information or referrals you might have will be greatly appreciated.
>
> Thank you.
>
> Norma
>
> E-Mail Address: [log in to unmask]
>
> P.S. Barbara Patterson - Thank you for your "Welcome" message.
=========================================================================
Date: Mon, 14 Jun 1999 09:40:58 -0500
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Terry Kempf <[log in to unmask]>
Subject: Re: Mucuna pruiens
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I did a search on Mucuna Pruriens and found several Halucinogenic
references. This is one:
I am experienced with this substance so I should have been prepared! It
started with a slight tingling in my forearms and around my neck. In the
beginning I ignored it, but it soon took complete control of my mental
state. As it hit me I noticed the telltale cloud of sparkly purple
filaments floating about my head. I could have marveled at the way the sun
reflected from these microscopic hairs, but I confess I was otherwise
engaged. As I raced up the hill ripping off my shirt I could barely contain
the mounting anxiety. I left my machete down below along the fence I had
been clearing. Now I could only think of running cool water over my burning
arms and face. That was forty-five minutes ago, now, after standing in the
shower for 30 minutes it seems to have subsided. Mucuna Pruriens indeed!
So I wonder just what this Mucuna Pruriens really is.
Be careful,
Terry
----------
> From: Nita Andres <[log in to unmask]>
> To: [log in to unmask]
> Subject: Re: Mucuna pruiens
> Date: Sunday, June 13, 1999 7:39 PM
>
> my husband has found that this more palatable ( for him ) in a little
> milk and chocolate syrup with some sugar. He does have a sweet tooth. We
> are still experimenting. We bought the one from Utah. Hope this makes
> sense to you. I put it on the list because I do not know who if anyone
> is taking it. Nita
=========================================================================
Date: Mon, 14 Jun 1999 09:50:03 -0500
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Nita Andres <[log in to unmask]>
Subject: Re: Mucuna pruiens
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
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Oh my, thank you. I got a lot of information on this product- but as usual the
information , although pretty good and from a university in the states . I will
tell my husband. Mirapex was not the best experience we have had either. How
long did you take it before this started. Nita
Terry Kempf wrote:
> I did a search on Mucuna Pruriens and found several Halucinogenic
> references. This is one:
>
> I am experienced with this substance so I should have been prepared! It
> started with a slight tingling in my forearms and around my neck. In the
> beginning I ignored it, but it soon took complete control of my mental
> state. As it hit me I noticed the telltale cloud of sparkly purple
> filaments floating about my head. I could have marveled at the way the sun
> reflected from these microscopic hairs, but I confess I was otherwise
> engaged. As I raced up the hill ripping off my shirt I could barely contain
> the mounting anxiety. I left my machete down below along the fence I had
> been clearing. Now I could only think of running cool water over my burning
> arms and face. That was forty-five minutes ago, now, after standing in the
> shower for 30 minutes it seems to have subsided. Mucuna Pruriens indeed!
>
> So I wonder just what this Mucuna Pruriens really is.
>
> Be careful,
>
> Terry
>
> ----------
> > From: Nita Andres <[log in to unmask]>
> > To: [log in to unmask]
> > Subject: Re: Mucuna pruiens
> > Date: Sunday, June 13, 1999 7:39 PM
> >
> > my husband has found that this more palatable ( for him ) in a little
> > milk and chocolate syrup with some sugar. He does have a sweet tooth. We
> > are still experimenting. We bought the one from Utah. Hope this makes
> > sense to you. I put it on the list because I do not know who if anyone
> > is taking it. Nita
=========================================================================
Date: Mon, 14 Jun 1999 11:14:49 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: judith richards <[log in to unmask]>
Organization: @Home Network
Subject: News-Avigen's Gene Therapy Technology Shows Promise
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Content-Type: text/plain; charset=iso-8859-1
Content-Transfer-Encoding: 8bit
June 14, 1999
Company Press Release
Avigen's Gene Therapy Technology Shows Promise for Treating Parkinson's
Disease
Research Presented by Dr. Krys Bankiewicz at The American Society of
Gene Therapy Meeting Holds Promise for Novel Therapeutic Approach to
Treating Common Neurological Disease
WASHINGTON, June 14, 1999 /PRNewswire/ -- Krys Bankiewicz, M.D., Ph.D.,
of the National Institutes of Health, in collaboration with Avigen, Inc.
(Nasdaq: AVGN - news) and Lawrence Berkeley National Laboratory
presented research results of studies in primates suggesting the
potential for Avigen's gene therapy technology to treat Parkinson's
disease. Parkinson's disease is a neurological disorder characterized by
a decrease in spontaneous movements, gait difficulty, postural
instability, rigidity and tremor, which result from a decrease in the
availability of the neuro-transmitter dopamine in the brain. Speaking at
The American Society of Gene Therapy Conference in Washington, DC, Dr.
Bankiewicz announced that dopamine activity could be restored in a
primate model of Parkinson's disease following treatment with Avigen's
adeno associated virus (AAV) vector.
``Researchers in the field of gene therapy have encountered many
obstacles in their attempt to develop an effective therapeutic approach
to treating genetic disorders,'' commented Dr. Bankiewicz. ``Avigen's
AAV based approach to treating Parkinson's disease may hold promise for
the broader application of treating a variety of genetically based
conditions,'' he said. Dr. Bankiewicz's findings represent an important
advance in the potential development of gene therapy treatment for
Parkinson's disease, a common and devastating neuro-degenerative disease
affecting over one million people in the United States.
The strategy behind gene therapy is to provide the patient with the
genetic information needed in order to restore certain biological
activities within the cell. The challenge to date has been to identify a
mechanism by which genetic information can be successfully transferred
to the appropriate cells to the body. Viruses have been identified as
possible delivery agents; however, many viruses are harmful or even
deadly and are effective only under certain carefully controlled
conditions. As a result of its progress with its AAV vector system,
Avigen researchers may have developed a potential solution to this
challenge.
``We are enthusiastic about the possible application of Avigen's gene
therapy technology to Parkinson's disease,'' said John Monahan, Ph.D.,
President and CEO of Avigen. ``If our research findings continue to
exhibit the promise which they have to date, our AAV vector system may
provide an attractive therapeutic alternative for certain genetically
based diseases.''
<snip>
SOURCE: Avigen, Inc.
Copyright Š 1999 PRNewswire.
http://biz.yahoo.com/prnews/990614/dc_avigen__1.html
--
Judith Richards, London, Ontario, Canada
<[log in to unmask]>
^^^
\ /
\ | / Todays Research
\\ | // ...Tomorrows Cure
\ | /
\|/
```````
=========================================================================
Date: Mon, 14 Jun 1999 11:17:52 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: judith richards <[log in to unmask]>
Organization: @Home Network
Subject: Heat-related deaths preventable
MIME-Version: 1.0
Content-Type: text/plain; charset=iso-8859-1
Content-Transfer-Encoding: 8bit
Heat-related deaths preventable
NEW YORK, June 11, 1999 (Reuters Health) -- Close to 400 people die
every year in the US due to heat-related illnesses, according to the
Centers for Disease Control and Prevention (CDC). Such deaths are
largely preventable, the federal agency notes.
"During 1979-1995, exposure to extreme hot temperatures caused an annual
average of 381 deaths in the United States," according to a CDC report
issued on Thursday.
The youngest and oldest members of the population -- infants and people
over 65 -- are at greatest risk when temperatures are sustained at or
above 105 degrees Fahrenheit during the day, and 80 degrees at night,
note health officials.
"Measures for preventing heat-related illness and death include
spending time in air-conditioned environments, increasing
nonalcoholic fluid intake, exercising only during cooler parts of the
day, and taking cool-water baths," write CDC officials. "Elderly
persons should be encouraged to take advantage of air-conditioned
environments (e.g. shopping malls and public libraries), even if only
for part of the day."
People who live alone, or have cardiovascular disease or respiratory
disease have an added risk for heat-related death. Others with increased
risk include those taking certain drugs, such as antipsychotics, major
tranquilizers, tricyclic antidepressants, antihistamines, some
over-the-counter sleeping pills, and some drugs used to treat
PARKINSON'S disease.
When a heat wave is predicted, families and friends should check
on homebound elderly, and take precautions with children, according to
the CDC. People required to spend time outdoors for work should beware
of signs of heat exhaustion, such as dizziness, weakness, and fatigue.
SOURCE: Morbidity and Mortality Weekly Report 1999;48:469-473.
--
Judith Richards, London, Ontario, Canada
<[log in to unmask]>
^^^
\ /
\ | / Todays Research
\\ | // ...Tomorrows Cure
\ | /
\|/
```````
=========================================================================
Date: Mon, 14 Jun 1999 11:27:18 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Jane Koenig <[log in to unmask]>
Subject: Re: Travel No More/Beaten - Long Piece
In-Reply-To: <[log in to unmask]>
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Dear Gina,
What a horror story! Congrats on finally making it. REST!
Know that that travel saga would wear out even the healthiest 20yr old.
JaneK
(don't travel much anymore because I couldn't handle the hassles)
=========================================================================
Date: Mon, 14 Jun 1999 11:32:09 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Camilla Flintermann <[log in to unmask]>
Subject: Re: I ASK AGAIN - "Fund the Cure" Stamps ?
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
------------------------------------------------
Bonnie--I have no idea where to connect on this. Just got stamps for
"Prostate Cancer Awareness"
( no surcharge to raise funds, though.) Perhaps this is a question to put
to NPF or APDA? Maybe a Senator or Congressman has an "in" and some clout?
Other thoughts?????
>---------------------- Information from the mail header
>-----------------------
>Sender: "Caregivers Are Really Essential (CARE)"
> <[log in to unmask]>
>Poster: [log in to unmask]
>Subject: I ASK AGAIN - "Fund the Cure" Stamps ?
>-------------------------------------------------------------------------------
>
>PIE & CARE
>Listen up!
>
>If this is true that the Post Office offers stamps that contribute to the
>fund raising for the research of cancer - is it right that cancer be singled
>out by the PO? Mail around the world has to use postage so this is not just a
>U.S. issue.
>
>Do we go to legislators or do we go to Post Office officials to get PD in on
>this contribution deal? Who do we contact to have stamps printed up for PD &
>it's research?
>
>Bonnie
>daughter of Jim 77/3
Camilla Flintermann, CG for Peter 81/70/55
Oxford, Ohio
http://www.newcountry.nu/pd/members/camilla/one.htm
<[log in to unmask]>
"Ask me about the CARE list for
Caregivers of Parkinsonians ! "
=========================================================================
Date: Mon, 14 Jun 1999 11:32:47 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Camilla Flintermann <[log in to unmask]>
Subject: Re: I ASK AGAIN - "Fund the Cure" Stamps ?
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
-------------------------------------------------------
I have bought the breast cancer stamps, and as you may remember, there is
an extra charge of a couple of cents, which is what goes to the cancer
research---thus, only persons who wish to support it are charged that
extra---or buy the stamps. It doesn't come out of the base cost of the
postage, in fact.
>---------------------- Information from the mail header
>-----------------------
>Sender: "Caregivers Are Really Essential (CARE)"
> <[log in to unmask]>
>Poster: Linda Warrenburg <[log in to unmask]>
>Subject: Re: I ASK AGAIN - "Fund the Cure" Stamps ?
>-------------------------------------------------------------------------------
>
>Bonnie, you wrote:
>> If this is true that the Post Office offers stamps that contribute to the
>> fund raising for the research of cancer -
>
>It is true. When I first saw the post re: the stamps, I thought that it had
>to be a hoax. But I found the web site for the US Postal Service, & low and
>behold, it was there in print. As who to contact, I wouldn't have the
>foggiest....maybe our Senators? Maybe someone else will know who to
>contact.
>
>Linda, CG for Ben 69/5
Camilla Flintermann, CG for Peter 81/70/55
Oxford, Ohio
http://www.newcountry.nu/pd/members/camilla/one.htm
<[log in to unmask]>
"Ask me about the CARE list for
Caregivers of Parkinsonians ! "
=========================================================================
Date: Mon, 14 Jun 1999 11:44:55 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Camilla Flintermann <[log in to unmask]>
Subject: Re: Travel No More/Beaten - Long Piece
In-Reply-To: <[log in to unmask]>
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Dear Gina-- I just read your account of the "trip from H---", and then
Janet's response, which seemed very helpful. I would echo her point that
you were in no way to blame for any of the problems, and it can be a
learning experience about when to accept a bit of help along the way, so as
to be able to be independent later. I'm sorry it was such a nightmare, but
glad you survived to tell us about it---and it was good to see you back on
the list again!
{{{{{{{{{{{{{{GINA}}}}}}}}}}}
Camilla Flintermann, CG for Peter 81/70/55
Oxford, Ohio
http://www.newcountry.nu/pd/members/camilla/one.htm
<[log in to unmask]>
"Ask me about the CARE list for
Caregivers of Parkinsonians ! "
=========================================================================
Date: Mon, 14 Jun 1999 10:45:01 -0500
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Nita Andres <[log in to unmask]>
Subject: Re travel
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Gina and everyone else considering travel. I took my elderly mother and
aunt to my sisters wedding. There was NO way they could have walked
those distances. gina you did well to have money available, what I did
was have ten dollars in plain sight 9 almost waving it) and at each end
of the trip we got a lot of help. Mother thought I was awful, but she
was in one of those wheel chairs, not trying to get help. It is a sad
commentary, but these tactics are necessary. I thought I would never
make it - but that money in sight helped. Not nice, but effective. The
sky caps need money also, so they helped a lot. Nita
=========================================================================
Date: Mon, 14 Jun 1999 12:21:21 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Camilla Flintermann <[log in to unmask]>
Subject: Re: PENNIES FOR PARKINSON
In-Reply-To: <[log in to unmask]>
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
>hi i got 5 cans out for pennies do not know how much yet. am going to let
>them be for a while.
Good for you!
oh did i say i gave in and accept vice pres. of our
>support group.
Good for you AGAIN!
has any one yet tried a lazier light to walk with?
We haven't tried it yet--probably should!
SNIPPED
my razor backs are all fence in so they did not get email.
>maybe CINNY. FLYING PIGS.
Hey, no fair ! Those pigs are innocent as the day is long --- LOL
And you do come up with some great signatures!
> BEST MEDS FOR PD IS
> TO SMILE AT A STRANGER
>
>
Take care in this heat---
>
> JUST 0000000
> TO 0/ 0 000
> SAY HI! 0| o o |0 CAMILLA
> 0| ^ |0
>. ......... ...o00o..........\.. *.. ./.......o00o...........
>| | | | | | | | |
>| | | | | | | | |
>
><[log in to unmask]>
>
> http://www.newcountry.nu/pd/members/camilla/one.htm
>
=========================================================================
Date: Mon, 14 Jun 1999 11:20:03 -0500
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: "Charles T. Meyer, M.D." <[log in to unmask]>
Subject: Re: Persistent Abnormal Smells
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
HI Norma,
I agree with others that persistent abnormal smells are common in PD. I had them
in fact prior to actually being diagnosed! At the same time loss of sense of
smell is also common. I have had both, but I didn't find out how common a symptom
it was(or that it was related at all to PD) until I joined the list
I disagree with Janet that you ought to consider dumping your MD if he didn't know
about that as a symptom of PD however. If he is otherwise competent. it is a
common although largely unwritten about symptom that can and does occur. While it
may indicate some inexperience with PD- unless he/she is giving other indications
that he is not knowledgeable about more major aspects of PD I would let it go
by. I know a number of neurologists that do(did) not know about that symptom
and are otherwise competent. Also In all my experience with PD specialists I never
have been asked that as a diagnostic question in spite of the symptoms prevalence.
Charlie
"J. R. Bruman" wrote:
> Paul Myhre wrote:
> > My name is Norma Myhre and new to the PARKINSN list. I started having
> > tremors 3 1/2 - 4 years ago and was diagnosed with PD this past March. I am
> > a participant in a 2 year study and I am taking either Sinemet or
> > Ropinirole. The tremors seem to be mostly under control but am having
> > trouble with cramping in my arms, hands and slightly in the legs, sleepless
> > nights and achiness. Thank you all for sharing information on these
> > problems and others.
> >
> > I have an odd problem in that I have experienced a persistent abnormal smell
> > for the last 2 1/2 years. No one in the family, friends, and especially
> > those who claim to have a very keen sense of smell can detect the odor.
> > After CAT scans, x-rays and other tests of the sinuses and nostrils, I was
> > told it was something I probably will have to live with. I even went to a
> > hypnotist without any help. Very frustrating! In reading the "The PDF
> > NEWS" Fall/Winter 1998-1999 issue under "Mary's Mailbag" on page 14 there is
> > an article "What's That Smell?". It says "We've heard from some PWPs
> > who've lost their sense of smell, from others who complain of persistent
> > abnormal smells, .........". Last Monday I sent an e-mail to the PDF
> > Organization asking for help but have not heard from them. I have also
> > asked for help from the neurologist but to no avail.
> >
> > Any information or referrals you might have will be greatly appreciated.
>
> It sounds a bit odd but I too have had olfactory hallucinations (not
> recently or often). The sensation was a kind of "chemical" odor related
> to, but unlike, turpentine, toluene, benzole, etc. that I knew weren't
> really present. I thought hallucinations came with the various dopamine
> agonists for PD, but I don't take any. Cheers,
> Joe
> --
> J. R. Bruman (818) 789-3694
> 3527 Cody Road
> Sherman Oaks, CA 91403-5013
--
******************************************************************************************
Charles T. Meyer, M.D.
Middleton (Madison), Wisconsin
[log in to unmask]
******************************************************************************************
=========================================================================
Date: Mon, 14 Jun 1999 12:49:11 EDT
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Bonnie Rowley <[log in to unmask]>
Subject: Re: "Fund the Cure" Stamps
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Linda,
or anyone else,
Can someone post the url for the postal service?
In a message dated 6/14/1999 10:21:16 AM Eastern Daylight Time,
[log in to unmask] writes:
>
> It is true. When I first saw the post re: the stamps, I thought that it
had
> to be a hoax. But I found the web site for the US Postal Service, & low
and
> behold, it was there in print. As who to contact, I wouldn't have the
> foggiest....maybe our Senators? Maybe someone else will know who to
> contact.
>
> Linda, CG for Ben 69/5
>
=========================================================================
Date: Mon, 14 Jun 1999 09:58:12 -0700
Reply-To: [log in to unmask]
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: "J. R. Bruman" <[log in to unmask]>
Subject: Re: PMID: 9387804: Neuroleptic malignant syndrome in PD: risk
factors.
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
janet paterson wrote:
>
> Neuroleptic malignant syndrome in parkinsonian patients: risk factors.
>
> A syndrome resembling the neuroleptic malignant syndrome (NMS) is known to
> develop occasionally following interruption of dopaminergic medications in
> patients with Parkinson's disease.
>
> However, NMS can develop even without withdrawal of antiparkinsonian drugs.
>
> In parkinsonian patients who continually received dopaminergic medications,
> the development of NMS occurred exclusively in warm seasons, May to August.
>
> The development of NMS could occur at any season in association with the
> cessation of dopaminergic drugs.
>
> A female parkinsonian patient showed two episodes of NMS during the
> premenstrual period.
>
> It is suggested that hot weather or dehydration and aggravation of
> parkinsonism premenstrually constitute risk factors for the development of
> NMS, in addition to withdrawal of antiparkinsonian drugs.
As an added note- Roche Labs, in the new package insert for tolcapone
(Tasmar) mention that during the extensive formal trials they had
some reports of what might have been neuroleptic malignant syndrome,
possibly from abrupt withdrawal of some PD drug in some trial subjects
on starting Tasmar, but they weren't sure. Cheers,
Joe
--
J. R. Bruman (818) 789-3694
3527 Cody Road
Sherman Oaks, CA 91403-5013
=========================================================================
Date: Mon, 14 Jun 1999 10:07:59 -0700
Reply-To: [log in to unmask]
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: "J. R. Bruman" <[log in to unmask]>
Subject: Re: Travel No More/Beaten - Long Piece
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Gina Cass wrote:
> I need to tell you this tale for me to get it out, not necessarily to have
> you respond or even understand.
> I was invited to New Hampshire by friends for a rest of 2 yrs of changes,
> flight from Elkhart, Indiana to Manchester, New Hampshire was uneventful. I
> stayed for a week and headed back to Indiana on Friday, June 10 flying a well
> known Airline that I will name after I talk to the CEO, on their position.
> This is a Nightmare that wouldn't end. I am beat physically and emotionally.
> I lack the faith that I did have in myself. I know many will say don't
> travel alone, but I am new at this. I have always been fiercely independent
> and now have to confront my limitations.
> I just needed to get this out and thanks for understanding.
Well, Gina, I'm glad at least that you survived the ordeal. We would
have missed you. Didn't I see somewhere that "Getting There Is Half
The Fun"?
Joe
--
J. R. Bruman (818) 789-3694
3527 Cody Road
Sherman Oaks, CA 91403-5013
=========================================================================
Date: Mon, 14 Jun 1999 13:36:16 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: stevebyc <[log in to unmask]>
Subject: Re: PARKINSN -abnormal smells
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
I too smelled a smell that no one else did. It started @ 1988 when I was 6 years
into my PD diagnosis and was about 41 yr. old. (now I am 52/17). I had just started
taking Eldepryl, and I began to smell a very strong "BO" type odor all the time,
it would get worse when under stress! Thinking that if was caused by my
medicines, I carefully experimented to find the culprit, but to no avail. No one
else ever smelled the smell, my neurologist could offer no explanation and never
noticed a BO on me. Yet it was so "real" to me,that I used special detergent in my
laundry to be sure that my clothes were not responsible.
My lovely phantom body odor just dissipated after a very neurotic few months. The
Nickel analysis was that my PD had gotten to the point where it was obvious to anyone
who saw me that I had a problem. Being self conscious about my PD, my mind created
another neurosis about one of the great American phobia, smelling badly,and then
supplied me with the perfect olfactory hallucination; A BO that was every bit as bad
as the infamous one on Seinfeld!
Steve Holahan,52/17
Hartford, CT
=========================================================================
Date: Mon, 14 Jun 1999 13:46:35 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: janet paterson <[log in to unmask]>
Subject: Re: Persistent Abnormal Smells
In-Reply-To: <[log in to unmask]>
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
hi all
At 11:20 1999/06/14 -0500, charlie wrote, in part:
>...I disagree with Janet that you ought to consider dumping your MD
>if he didn't know about that as a symptom of PD however. If he
>is otherwise competent. it is a common although largely unwritten
>about symptom that can and does occur...
i don't think it's largely unwritten about
there are over 100 pubmed studies going as far back as 1980
in the major neurological journals
describing olfactory problems as an important symptom of pd
[maybe one of the earliest indicators]
i may have been a tad impatient in my reaction in re the neurologist;
all the testing and scans that norma endured needlessly
may have been ordered by someone else
janet
janet paterson
52 now / 41 dx / 37 onset
PO Box 171 Almonte Ontario K0A 1A0 Canada
a new voice http://www.geocities.com/SoHo/Village/6263/
[log in to unmask]
=========================================================================
Date: Mon, 14 Jun 1999 12:55:21 -0500
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: "Charles T. Meyer, M.D." <[log in to unmask]>
Subject: Re: PMID: 9387804: Neuroleptic malignant syndrome in PD: risk
factors.
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Janet,
This is indeed interesting- and dangerous- NMS can often be fatal. For those
who are not aware of the symptoms they include muscular rigididity, altered
consciousness and a dark urine caused by the breakdown products of muscle. The
CPK (an enzyme) that is involved in muscle brerakdown goes to atronomical
levels and people can die of renal failure and I believe other things which I
don't remember off hand.
I will try and get more info on this.
Charlie
janet paterson wrote:
> Neuroleptic malignant syndrome in parkinsonian patients: risk factors.
>
> A syndrome resembling the neuroleptic malignant syndrome (NMS) is known to
> develop occasionally following interruption of dopaminergic medications in
> patients with Parkinson's disease.
>
> However, NMS can develop even without withdrawal of antiparkinsonian drugs.
>
> In parkinsonian patients who continually received dopaminergic medications,
> the development of NMS occurred exclusively in warm seasons, May to August.
>
> The development of NMS could occur at any season in association with the
> cessation of dopaminergic drugs.
>
> A female parkinsonian patient showed two episodes of NMS during the
> premenstrual period.
>
> It is suggested that hot weather or dehydration and aggravation of
> parkinsonism premenstrually constitute risk factors for the development of
> NMS, in addition to withdrawal of antiparkinsonian drugs.
>
> Eur Neurol 1997;38 Suppl 2:56-9
> Kuno S, Mizuta E, Yamasaki S
> Utano National Hospital, Narutaki, Kyoto, Japan.
> [log in to unmask]
> PMID: 9387804, UI: 98046997
> <http://www.ncbi.nlm.nih.gov/PubMed/>
>
> janet paterson
> 52 now / 41 dx / 37 onset
> PO Box 171 Almonte Ontario K0A 1A0 Canada
> a new voice http://www.geocities.com/SoHo/Village/6263/
> [log in to unmask]
--
******************************************************************************************
Charles T. Meyer, M.D.
Middleton (Madison), Wisconsin
[log in to unmask]
******************************************************************************************
=========================================================================
Date: Mon, 14 Jun 1999 20:01:06 +0200
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Hans van der Genugten <[log in to unmask]>
Subject: Re: "Fund the Cure" Stamps / USPS
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit
-----Oorspronkelijk bericht-----
Van: Bonnie Rowley <[log in to unmask]>
Aan: [log in to unmask] <[log in to unmask]>
Datum: maandag 14 juni 1999 18:50
Onderwerp: Re: "Fund the Cure" Stamps
>> Can someone post the url for the postal service? <<
Yep: http://www.usps.gov
Hans.
=========================================================================
Date: Mon, 14 Jun 1999 11:17:30 -0700
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Rick Hermann <[log in to unmask]>
Subject: nonstandard therapies
In-Reply-To: <[log in to unmask]>
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Janet,
Nonstandard therapies are valuable and "scammers" is a pretty harsh
characterization of people who provide information on alternative healing.
I think people who promote and practice aromatherapy, acupuncture,
chiropractic, herbal therapies, etc., in the end do more good than harm. My
wife, in her 13th year of disabling rheumatoid arthritis, has used all of
the above, in addition to allopathic, homeopathic, psychological, and
psychic counseling. Homeopathy put the arthritis into remission for a
couple years, other things have worked (and not worked) at other times.
Possibilities offer hope.
This pushes a button of mine, I guess. I had to switch dentists recently
because I was regarded as a weirdo for being concerned about amalgam
safety, and even talking about possible risks in the dentist's office. The
anti-amalgam camp is currently regarded as part of the lunatic fringe.
Even aromatherphy, which I admit I'm not up on, may have at least part of
an answer for some individuals, including those who have impaired olfactory
capabilities.
Let's leave room for a multitude of views and therapies.
Rick Hermann
>Date: Mon, 14 Jun 1999 03:20:44 -0400
>From: janet paterson <[log in to unmask]>
>Subject: Re: Persistent Abnormal Smells
>
>hi all
>
>At 18:20 1999/06/13 -0400, norma wrote, in part:
>>My name is Norma Myhre and new to the PARKINSN list...
>>I have an odd problem in that I have experienced a
>>persistent abnormal smell for the last 2 1/2 years...
>
>i understand that
>olfactory "irregularities" are a fairly common secondary symptom of pd
>[as opposed to new factory irregularities]
>
>one of the funniest 'list hustle' experiences here
>was the scammer who signed on in order to promote
>sales in aromatherapy!
>
>janet
>
>ps
>try a search in the archives using "smell" or "olfactory"
>
>janet paterson
>52 now / 41 dx / 37 onset
>PO Box 171 Almonte Ontario K0A 1A0 Canada
>a new voice http://www.geocities.com/SoHo/Village/6263/
>[log in to unmask]
=========================================================================
Date: Mon, 14 Jun 1999 20:17:41 +0200
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Hans van der Genugten <[log in to unmask]>
Subject: PMID: 10078727 Susceptibility to neuroleptic malignant
syndrome in Parkinson's disease.
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit
Neurology 1999 Mar 10;52(4):777-81
Susceptibility to neuroleptic malignant syndrome in Parkinson's disease.
Ueda M, Hamamoto M, Nagayama H, Otsubo K, Nito C, Miyazaki T, Terashi A,
Katayama Y
Department of Neurology, Tokyo Metropolitan Tama Geriatric Hospital,
Higashimurayama-city, Japan.
OBJECTIVE: To determine susceptibility to neuroleptic malignant syndrome
(NMS) in patients with PD in relation to central monoamine metabolism.
METHODS: CSF levels of homovanillic acid (HVA), 3-methoxy-4-hydroxy
phenyletilene glycol (MHPG), and 5-hydroxyindole acetic acid (5-HIAA) were
assayed in 98 PD patients (mean age, 77.2 years), including 11 patients with
a prior NMS-like episode, by high-performance liquid chromatography with
electrochemical detection.
RESULTS: Patients with a previous NMS-like episode had worse parkinsonian
disability as measured by Hoehn & Yahr scale (3.7 +/- 0.8 versus 3.0 +/-
1.1; p = 0.038) and lower CSF HVA levels (20.9 +/- 17.3 versus 44.7 +/- 22.2
ng/mL; p = 0.001) compared to those without, despite similar age, disease
duration, and daily dosages of antiparkinsonian drugs between groups.
Logistic regression analysis showed that the CSF HVA level (p = 0.008), but
not 5-HIAA level (p = 0.621), was significantly and independently related to
NMS, and that the MHPG level (p = 0.070) was tendentially associated with
the disorder. Odds ratios (95% confidence intervals) corresponding to 10
ng/mL increment in CSF HVA, MHPG, and 5-HIAA levels were 0.30 (0.13 to
0.73), 4.03 (0.89 to 18.2) and 1.29 (0.47 to 3.58), respectively.
CONCLUSIONS: Central dopaminergic and possible noradrenergic activity
contributes to NMS development in an elderly population of PD patients.
Measuring CSF levels of monoamine metabolites may provide a means for
identifying NMS susceptibility in PD patients.
PMID: 10078727, UI: 99176613
----------------------------------------------------------------------------
----
=========================================================================
Date: Mon, 14 Jun 1999 12:22:19 -0600
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: "Kathrynne Holden, MS,RD" <[log in to unmask]>
Organization: Five Star Living, Inc.
Subject: WORM KILLER URL
Comments: To: CARE list <[log in to unmask]>
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Dear Listfriends,
As far as I can see, this download is for networked computer systems;
however, in case it may help someone, I want to pass it on.
There is a URL with a free download to disable Worm.ExploreZip, the
latest virus that's infecting computers worldwide.
"Register to download FastLane's Windows NT WormKiller
WormKiller FAQ
Windows NT WormKiller was built to detect and disable the
Worm.ExploreZip virus. It is not intended to replace other anti-virus
software, rather, it provides a mechanism to quickly detect instances of
the virus across the entire network and disable the virus without
visiting the actual infected machines.
This allows an organization to disinfect only those machines that have
been affected.
Windows NT WormKiller is built using FastLane's powerful Directory
Management engine, Active DMS. "
http://www.fastlanetech.com/worm_killer.htm
Best regards,
Kathrynne
--
Kathrynne Holden, MS, RD
Medical nutrition therapy
Author: "Eat well, stay well with Parkinson's disease"
"Parkinson's disease: assessing and managing unique nutrition needs"
http://www.nutritionucanlivewith.com/
=========================================================================
Date: Mon, 14 Jun 1999 11:27:20 -0700
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Barb_MSN <[log in to unmask]>
Subject: Re: Travel No More/Beaten - Long Piece
Gina....
What a sad and painful commentary on the way the business and
service world seems to be heading. And what a picture of the
"disabled person's nightmare travel experience from HELL" you
painted! <shuddering>
Perhaps we need to have the same type of "airport/flight
assistant" to meet us at each stop? The same type of airline
service which meets and guides unaccompanied minors when they fly?
(they're generally stewardesses, aren't they?)
I wonder if there aren't a lotta retired stewardesses who'd like
to bring in additional income by shepherding those who need such a
service thru various airports? And if there ISN'T such a service,
maybe it's time has come?
Food for thought....
Barb Mallut
[log in to unmask]
-----Original Message-----
From: Gina Cass <[log in to unmask]>
To: [log in to unmask] <[log in to unmask]>
Date: Monday, June 14, 1999 5:52 AM
Subject: Travel No More/Beaten - Long Piece
>TO: My fellow PD's (maybe not in spirit but in disease)
>
>I need to tell you this tale for me to get it out, not
necessarily to have
>you respond or even understand.
>I was invited to New Hampshire by friends for a rest of 2 yrs of
changes,
>flight from Elkhart, Indiana to Manchester, New Hampshire was
uneventful. I
>stayed for a week and headed back to Indiana on Friday, June 10
flying a well
>known Airline that I will name after I talk to the CEO, on their
position.
>My first flight out of Manchester was late, making me miss my
connection in
>Newark, NJ. They had advance notice that I needed a wheelchair
to get to the
>next gate on the other side of the airport which was not there.
It seemed to
>be a hinderance to get one and the person pushing was having a
conversation
>with someone I could not see. They were discussing a picture of
a fire and
>if this person had taken the photo.
>Like I stated I missed my connection in Newark to Cleveland. The
next flight
>to Cleveland was the one I was booked on this one was delayed due
to a light
>that would not light. Yes the thing that it was attached to had
to work and
>was but we needed that light, I understand. I started flying at
10:05AM EDT.
>from New Hampshire. I asked at each leg of this adventure to
preboard due to
>using a cane.
>Was told that was fine but had to remind them each time. One
time they
>completely forgot and I had to battle the crowd, which don't care
if you walk
>or not.
>They no longer have meals on the flights so I was having a
problem finding
>things to eat. Need to eat after some of the meds. O'hare I
found best to
>get a light something to eat OH that is later.
>I finally got to Cleveland, OHIO. I kept telling my hosts I did
not want to
>go to Cleveland. Over and over was my lament. But Cleveland is
a hub city
>of this particular Airline. I orginally started with a 4 hr
layover in
>Cleveland but due to missed flights, hobbling to gates etc, I had
about 1 hr.
>This was a trek from Concourse C to B opposite sides of the
airport (Why are
>they so far apart?) I had not been able to take my meds, I was
hot, tired and
>upset. But I had done so well this whole week. I was right
"on". While
>standing in line at the check-in I found out my flight from
Cleveland had
>been delayed. Twenty minutes later the flight was cancelled.
Due to
>weather. I looked around and not a cloud or problem appeared. I
felt it
>coming, but I could not stop any of it. Standing in line, I
mentally went
>away. A wonderful young woman, her husband and daughter together
asked if I
>was OK. She took a hold of my arm, took me out of line, set me
down, and
>asked if I was diabetic (I could only nod), I couldn't get out
the fact I had
>Parkinson's. My Tremors had gone crazy. I was shaking so
violently that it
>was hard to hold my ticket. They gave me juice, candy and
something in a
>tube called glucose. Told me they first thought I was drunk or
needed a
>drink and then realized that something else was wrong due to the
color of my
>skin, plus the fact of the cold, clammy touch. The Airline
representative
>commented that she was going to get to me next. TOO LATE
>An ambulance was called, Perimedics put me in ambulance, and took
me to a
>hospital due to the fact that my blood pressure was dangerously
high and my
>blood sugar was so high. They kept saying something about my
heart and
>wanting to give me Nitro. In my confused state I cannot remember
what they
>said. I will call hospital and have them tell me.
>Nice little hospital, close to airport. Doctor was very busy,
say him only
>very briefly but was hooked to D5 to lower everything. I told
them I needed
>something to eat to take meds which I was allowed to use my own
was given a
>snack that was wonderful. I was treated to a 6hr stint there
with various
>nurses visiting, sitting on my bed and talking, a wife of another
Emergency
>Room guest bringing her chair over to my cube and sitting with
me. I do have
>a way with some people of being there for them and putting them
at ease. Two
>ladies from the airline brought me Vouchers to go to a Hotel that
night what
>was left of it, to stay the night, Taxi Vouchers, and meal
vouchers. They
>finally arrived after 3 hrs of promises that the vouchers were on
there way.
>Remember the Airport is very close to the Hospital. I was
finally released
>and got a cab. The young man was very rude to start but I just
wanted to get
>to a room, take a shower and rest. He refused to take my travel
voucher due
>to the fact he picked me up at the hospital and not the airport.
So I paid
>him. Got into Hotel and asked for my room and was told I did not
have a
>room. The real confusing part was they had my luggage. Why did
it go there
>if I had no room? I cracked, crying, I called home to rant, when
the hotel
>staff person said they had a room at the other hotel for me and a
shuttle to
>take me. I ended up 25 minutes away from the airport now and not
5 minutes,
>1:30 AM no food (I had some trail mix luckly) and so upset I
could not get
>right to sleep. I had about 4 hrs sleep, ordered breakfast that
cost $11.23
>when the voucher was for only $8.00, and I ordered just a basic
no frills
>breakfast.
>Got a shuttle, just for me to the airport for the flight the
Airline had put
>me on. Which the Airport was a zoo, then I got to the check-in
and again my
>flight was cancelled due to weather (South Bend nor Cleveland had
a weather
>problem, I checked). The next( 12:00) flight was cancelled
(Feeling like
>the "Out-of-Towner). They had put me on a 1:45 PM flight on
another airline
>to Chicago O'Hare now. This flight had been schduled to leave at
12:03 now
>was leaving at 1:45 PM, I felt that this would end up like the
other flights.
> I went up to the counter, placed my ticket up there and said I
am very ill
>and I need to get home now. She looked at me and agreed so
booked me on the
>1:30 PM flight to Chicago as I wanted to travel with the couple
that had been
>there for me. This flight was delayed. We got to Chicago O'hare
with no
>problems. No Wheelchair again, they called for one but it never
came. No
>Electric Cart either and I was so scared that I would miss the
next and final
>flight. From D Concourse to B Concourse walking with my cane but
I made it
>with time to spare. Also, found a little stand and got some
water, and a
>lunchable to eat to take meds. This flight was delayed once not
due to
>weather but something else. Oh yes the flight never came.
>I finally got to South Bend, Indiana (Notre Dame Fame) with one
piece of
>luggage with the other piece coming 20 minutes later.
>This is a Nightmare that wouldn't end. I am beat physically and
emotionally.
> I lack the faith that I did have in myself. I know many will
say don't
>travel alone, but I am new at this. I have always been fiercely
independent
>and now have to confront my limitations.
>I just needed to get this out and thanks for understanding.
>
>gina
>
=========================================================================
Date: Mon, 14 Jun 1999 14:21:13 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: janet paterson <[log in to unmask]>
Subject: Re: nonstandard therapies / the message or the method?
In-Reply-To: <[log in to unmask]>
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
hi all
At 11:17 1999/06/14 -0700, rick wrote, in part:
>...Nonstandard therapies are valuable and "scammers" is a pretty harsh
>characterization of people who provide information on alternative healing.
hey! slow down there!
by "scammers" discovered on this list
i was referring to their method of selling [deceptive = fraudulent]
not to the products or practices involved
janet
janet paterson
52 now / 41 dx / 37 onset
PO Box 171 Almonte Ontario K0A 1A0 Canada
a new voice http://www.geocities.com/SoHo/Village/6263/
[log in to unmask]
=========================================================================
Date: Mon, 14 Jun 1999 14:46:32 EDT
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Bonnie Rowley <[log in to unmask]>
Subject: Hans / USPS
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Hans,
THANKS
Bonnie
In a message dated 6/14/1999 2:05:01 PM Eastern Daylight Time,
[log in to unmask] writes:
> Re: "Fund the Cure" Stamps
>
>
> >> Can someone post the url for the postal service? <<
>
> Yep: http://www.usps.gov
>
> Hans.
>
=========================================================================
Date: Mon, 14 Jun 1999 15:05:41 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Hilary Blue <[log in to unmask]>
Subject: Re: Travel No More/Beaten - Long Piece
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Gina my dear friend,
I was absolutely horrified at the story you told. When I flew to Portland
Maine a couple of months ago, I had a pleasant trip both ways. The wheel
chairs were where they should be, the attendants were more than friendly -
going out of their way to get me something to eat, - and outdoing each other
in being nice. I guess it is just a matter of luck. But I'm really sorry that
you should have had to experience such a nightmare. I hope you have recovered.
And i hope the airline compensates you in some small measure at least. And
i hope you got the name and address of those people who helped you - and if
you write to thank them, tell them thanks from me too. This world needs more
people like that.
hilary
Gina Cass wrote:
>
> TO: My fellow PD's (maybe not in spirit but in disease)
>
> I need to tell you this tale for me to get it out, not necessarily to have
> you respond or even understand.
> I was invited to New Hampshire by friends for a rest of 2 yrs of changes,
> flight from Elkhart, Indiana to Manchester, New Hampshire was uneventful. I
> stayed for a week and headed back to Indiana on Friday, June 10 flying a well
> known Airline that I will name after I talk to the CEO, on their position.
> My first flight out of Manchester was late, making me miss my connection in
> Newark, NJ. They had advance notice that I needed a wheelchair to get to the
> next gate on the other side of the airport which was not there. It seemed to
> be a hinderance to get one and the person pushing was having a conversation
> with someone I could not see. They were discussing a picture of a fire and
> if this person had taken the photo.
> Like I stated I missed my connection in Newark to Cleveland. The next flight
> to Cleveland was the one I was booked on this one was delayed due to a light
> that would not light. Yes the thing that it was attached to had to work and
> was but we needed that light, I understand. I started flying at 10:05AM EDT.
> from New Hampshire. I asked at each leg of this adventure to preboard due to
> using a cane.
> Was told that was fine but had to remind them each time. One time they
> completely forgot and I had to battle the crowd, which don't care if you walk
> or not.
> They no longer have meals on the flights so I was having a problem finding
> things to eat. Need to eat after some of the meds. O'hare I found best to
> get a light something to eat OH that is later.
> I finally got to Cleveland, OHIO. I kept telling my hosts I did not want to
> go to Cleveland. Over and over was my lament. But Cleveland is a hub city
> of this particular Airline. I orginally started with a 4 hr layover in
> Cleveland but due to missed flights, hobbling to gates etc, I had about 1 hr.
> This was a trek from Concourse C to B opposite sides of the airport (Why are
> they so far apart?) I had not been able to take my meds, I was hot, tired and
> upset. But I had done so well this whole week. I was right "on". While
> standing in line at the check-in I found out my flight from Cleveland had
> been delayed. Twenty minutes later the flight was cancelled. Due to
> weather. I looked around and not a cloud or problem appeared. I felt it
> coming, but I could not stop any of it. Standing in line, I mentally went
> away. A wonderful young woman, her husband and daughter together asked if I
> was OK. She took a hold of my arm, took me out of line, set me down, and
> asked if I was diabetic (I could only nod), I couldn't get out the fact I had
> Parkinson's. My Tremors had gone crazy. I was shaking so violently that it
> was hard to hold my ticket. They gave me juice, candy and something in a
> tube called glucose. Told me they first thought I was drunk or needed a
> drink and then realized that something else was wrong due to the color of my
> skin, plus the fact of the cold, clammy touch. The Airline representative
> commented that she was going to get to me next. TOO LATE
> An ambulance was called, Perimedics put me in ambulance, and took me to a
> hospital due to the fact that my blood pressure was dangerously high and my
> blood sugar was so high. They kept saying something about my heart and
> wanting to give me Nitro. In my confused state I cannot remember what they
> said. I will call hospital and have them tell me.
> Nice little hospital, close to airport. Doctor was very busy, say him only
> very briefly but was hooked to D5 to lower everything. I told them I needed
> something to eat to take meds which I was allowed to use my own was given a
> snack that was wonderful. I was treated to a 6hr stint there with various
> nurses visiting, sitting on my bed and talking, a wife of another Emergency
> Room guest bringing her chair over to my cube and sitting with me. I do have
> a way with some people of being there for them and putting them at ease. Two
> ladies from the airline brought me Vouchers to go to a Hotel that night what
> was left of it, to stay the night, Taxi Vouchers, and meal vouchers. They
> finally arrived after 3 hrs of promises that the vouchers were on there way.
> Remember the Airport is very close to the Hospital. I was finally released
> and got a cab. The young man was very rude to start but I just wanted to get
> to a room, take a shower and rest. He refused to take my travel voucher due
> to the fact he picked me up at the hospital and not the airport. So I paid
> him. Got into Hotel and asked for my room and was told I did not have a
> room. The real confusing part was they had my luggage. Why did it go there
> if I had no room? I cracked, crying, I called home to rant, when the hotel
> staff person said they had a room at the other hotel for me and a shuttle to
> take me. I ended up 25 minutes away from the airport now and not 5 minutes,
> 1:30 AM no food (I had some trail mix luckly) and so upset I could not get
> right to sleep. I had about 4 hrs sleep, ordered breakfast that cost $11.23
> when the voucher was for only $8.00, and I ordered just a basic no frills
> breakfast.
> Got a shuttle, just for me to the airport for the flight the Airline had put
> me on. Which the Airport was a zoo, then I got to the check-in and again my
> flight was cancelled due to weather (South Bend nor Cleveland had a weather
> problem, I checked). The next( 12:00) flight was cancelled (Feeling like
> the "Out-of-Towner). They had put me on a 1:45 PM flight on another airline
> to Chicago O'Hare now. This flight had been schduled to leave at 12:03 now
> was leaving at 1:45 PM, I felt that this would end up like the other flights.
> I went up to the counter, placed my ticket up there and said I am very ill
> and I need to get home now. She looked at me and agreed so booked me on the
> 1:30 PM flight to Chicago as I wanted to travel with the couple that had been
> there for me. This flight was delayed. We got to Chicago O'hare with no
> problems. No Wheelchair again, they called for one but it never came. No
> Electric Cart either and I was so scared that I would miss the next and final
> flight. From D Concourse to B Concourse walking with my cane but I made it
> with time to spare. Also, found a little stand and got some water, and a
> lunchable to eat to take meds. This flight was delayed once not due to
> weather but something else. Oh yes the flight never came.
> I finally got to South Bend, Indiana (Notre Dame Fame) with one piece of
> luggage with the other piece coming 20 minutes later.
> This is a Nightmare that wouldn't end. I am beat physically and emotionally.
> I lack the faith that I did have in myself. I know many will say don't
> travel alone, but I am new at this. I have always been fiercely independent
> and now have to confront my limitations.
> I just needed to get this out and thanks for understanding.
>
> gina
=========================================================================
Date: Mon, 14 Jun 1999 15:22:49 EDT
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: "Harlan Williams, Jr." <[log in to unmask]>
Subject: Re: Travel No More/Beaten - Long Piece
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Dear Gina:
I just read your travel exploits and I was touched. Usually, I am just an
onlooker to the list, and don't usually respond to people. But your post
made something within me stir.
You must keep traveling and continue to be fiercely independent. I too am
fiercely independent and will travel to Alaska from Washington. D.C. this
August and September. Don't give up hope! What happened to you could happen
to anyone, your Parkinson's just made it seem all the worse. WE, i.e. people
with Parkinson's, must never give in to this disease. It is a constant
fight, but a fight that we must fight and win! If you give up now, you will
always be at the mercy of this disease. Don't let this happen, don't give
up. I don't care how old you are or how bad your tremor is, keep trying.
God gave us this disease because he felt we could deal with it better than
other people. Set an example for all people with Parkinson's.
By the way, I am guessing that you flew United since you were traveling
through O'Hare. I am a lawyer, and I believe you would have a claim against
the airline under the Americans with Disabilities Act (ADA). I don't know a
thing about the ADA, but the treatment you received appears substandard to
me, and should be punishable!
Take care, and don't give up hope!
Harlan
EmaiL [log in to unmask]
=========================================================================
Date: Mon, 14 Jun 1999 12:29:53 -0700
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Kelly Abbett <[log in to unmask]>
Subject: PAN Public Policy Forum and Petition Campaign
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Here's an update.....
**The Parkinson's Action Network's Sixth Annual Public Policy Forum is
fast approaching!!**
However, there is still time to register for the Forum and to reserve a
room at the hotel at the original group discount rate. Scholarship
money is available - call the Network for details. The Forum is being
held in Washington, DC from June 27- 30, 1999 at the Hyatt
Regency Washington on Capitol Hill. The Forum is a unique and exciting
opportunity for members of the Parkinsons community to come together
to educate federal legislators about the devastating nature of
Parkinsons disease and the urgent need for increased federal
Parkinsons-focused research funding to improve treatment and find a
cure. This years Forum promises to be highly informative and
inspirational.
The 1999 Public Policy Forum includes:
-Briefing on the latest discoveries in the science of Parkinsons
disease by leading researchers
-Workshops on successful grassroots strategies
-Training to work effectively with your legislators
-A day of lobbying on Capitol Hill to increase funding for Parkinsons
research
-A Congressional Awards dinner for leaders in the fight to cure
Parkinsons disease
Registration:
Please call the Network at 800-850-4726 to register. The $125
registration fee helps defer a portion of the costs of materials,
speakers, meeting rooms and some meals. Contact the Network for
information about scholarships.
Hotel Rates:
Room charges at the Hyatt are $129/single, $154/double, $179/triple,
$204/quadruple, per room per night. This is a discount rate applied to
the block of rooms reserved by the Network for attendees of the 1999
Forum. Forum participants are not required to stay at the Hyatt; but
because summer is a popular season for tourists in Washington, pricing
and availability cannot be guaranteed at other hotels.
Reservations:
Room reservations can be made by calling the Hyatt at 800-233-1234.
Call the Hyatt for reservations only, and specify that the reservation
is for the Hyatt Regency in Washington, DC. All registration fees and
room payments are made directly to the Parkinsons Action Network.
Questions:
Please do not hesitate to contact the Network at 800-850-4726 at any
time with questions, comments or requests.
*******************************************************
**There are only 2 weeks left in the Parkinson's Action Network's 1999
Parkinsons research funding petition campaign!**
The goal of the campaign is to present the petitions to the newly
formed Congressional Working Group on Parkinsons Disease during the
Networks 1999 Public Policy Forum, in Washington, DC. The petition
calls on Congress to fulfill its commitment to provide at least $100
million for Parkinsons-focused research in fiscal year 2000. The
advocate with the most petition signatures will be honored at the
Public Policy Forum. Please call the Network at 800-850-4726 to
request blank petitions or for suggestions on how to distribute the
petitions in your community. Completed petition sheets can be sent to
the Network c/o 1818 N Street, NW, Ste. 450, Washington, DC, 20036 by
June 22, or brought directly to the Public Policy Forum from June
27-30.
_________________________________________________________
Do You Yahoo!?
Get your free @yahoo.com address at http://mail.yahoo.com
=========================================================================
Date: Mon, 14 Jun 1999 15:46:00 EDT
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Dorothy Ivankoe <[log in to unmask]>
Subject: Re: Travel No More/Beaten - Long Piece
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
In a message dated 6/14/99 5:52:29 AM, [log in to unmask] writes:
<<
I need to tell you this tale for me to get it out, not necessarily to have
you respond or even understand.
I was invited to New Hampshire by friends for a rest of 2 yrs of changes,
flight from Elkhart, Indiana to Manchester, New Hampshire was uneventful >>
I am sorry you had a series of unbelievable events all happening during one
trip. I firmly believe that travel and a change of scenery does wonders both
for a PWP (or other illnesses as well) and the caregiver. In your case, I
admire you for travelling alone. I think we all realize there will be a time
when travel will have to be curtailed in our lives..
I have found that it has been quite easy to get wheelchair assistance or a
"moving vehicle" in airports. Although we always tip, I think the
suggestion to keep a wad of dollar bills in your hand could help in certain
cases. What do others do if they need assistance in the bathroom when two
people are travelling together -- one a female and the other a male?
Recently I've been seeing "handicapped" bathrooms to allow both sexes to go
in but I don't think all airports have these facilities.
We haven't travelled in several months but we are now looking forward to our
next trip. In the past I was the one who always wanted to go -- now my
husband is the one who keeps asking when we are going away and where we are
going.
As an aside, I saw a message that referenced "stewardesses." Within the last
couple of years I think that word has been completely taboo -- with so many
males working in the same position they are now referred to as flight
attendants.
Hopefully you will get good compensation for your recent flight and will
continue to travel with much better luck. When I retired one of the
stipulations as to where we would move was that it had to be fairly close to
a major airport. I was tired from leaving from a "nonhub" airport and having
to change planes wherever we went. Not everyone has that choice but it sure
makes life easier. It's also much cheaper!
One more thought -- if anyone has to travel at the last minute and doesn't
have senior coupons, try Priceline. They saved us $600 each for one trip
within the past year.
Dorothy CG Roy 68/44/42
=========================================================================
Date: Mon, 14 Jun 1999 16:04:11 EDT
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Gina Cass <[log in to unmask]>
Subject: Re: Travel No More/Beaten - Long Piece
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Barb:
The idea you had was wonderful. The airline is to call me back on Wednesday
and I will suggest it to them for you. I learned that just telling the
person behind the counter that I needed a wheelchair was not enough. That I
was handicapped and used a cane was not enough. And telling the persons on
the planes was not enough.
gina
=========================================================================
Date: Mon, 14 Jun 1999 14:12:57 -0600
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Nancy Burnham <[log in to unmask]>
Subject: Re: nonstandard therapies
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
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My sediments exactly. Whenever I mention nonstandard therapies we are
trying I can feel the cold shoulder all the way to Montana. Consequently
I've just about stopped communicating. I am really getting a phobia about
mentioning any information I find out
about on this list. I feel that we are doing lots of things right since my
husband, who has had PD for at least 16 years, is still able to work 10 hour
days 7 days a week on our ranch. This last week he spend fixing fence in
our mountain pasture. He would leave around 8:00 in the morning and get
home around 8:00 in the evening. Yesterday we took the cattle to the
mountains. Left our yard at 4:30 on horseback, arrived at the pasture at
noon. Back home around 2:00. I took a nap, but Don didn't get a chance to
rest until he went to bed around 8:30. I didn't even ride, just took food to
the riders for breakfast and lunch!!!
I've investigated aromatherphy, but never tried it. I've heard of personal
testimonies from several who have had great results.
Some of the products we try seem to help, other don't. I have high hopes
for what we are doing now. I'm sure not going to leave our health only in
the hands of the medical profession.
Earlier I wrote about the clinic in California that gets to the root cause
of chronic conditions, have talked to several who have gone and have had
great results. ( not PD) In conjunction with the clinic is a non-toxic
dental clinic. We are seriously thinking of making an appointment with the
clinic. I'm sure one of the first recommendation will be for Don to have
all of his fillings removed.
Nancy B cg for Don 65/16.
PS I'm leaving this week to visit my children in Boise Idaho. I have a son
and daughter there and three Grand Babies. Will probably get off the list
for a short time.
-----Original Message-----
From: Rick Hermann <[log in to unmask]>
To: [log in to unmask] <[log in to unmask]>
Date: Monday, June 14, 1999 12:19 PM
Subject: nonstandard therapies
>Janet,
>
>Nonstandard therapies are valuable and "scammers" is a pretty harsh
>characterization of people who provide information on alternative healing.
>I think people who promote and practice aromatherapy, acupuncture,
>chiropractic, herbal therapies, etc., in the end do more good than harm. My
>wife, in her 13th year of disabling rheumatoid arthritis, has used all of
>the above, in addition to allopathic, homeopathic, psychological, and
>psychic counseling. Homeopathy put the arthritis into remission for a
>couple years, other things have worked (and not worked) at other times.
>Possibilities offer hope.
>
>This pushes a button of mine, I guess. I had to switch dentists recently
>because I was regarded as a weirdo for being concerned about amalgam
>safety, and even talking about possible risks in the dentist's office. The
>anti-amalgam camp is currently regarded as part of the lunatic fringe.
>
>Even aromatherphy, which I admit I'm not up on, may have at least part of
>an answer for some individuals, including those who have impaired olfactory
>capabilities.
>
>Let's leave room for a multitude of views and therapies.
>
>Rick Hermann
>
>>Date: Mon, 14 Jun 1999 03:20:44 -0400
>>From: janet paterson <[log in to unmask]>
>>Subject: Re: Persistent Abnormal Smells
>>
>>hi all
>>
>>At 18:20 1999/06/13 -0400, norma wrote, in part:
>>>My name is Norma Myhre and new to the PARKINSN list...
>>>I have an odd problem in that I have experienced a
>>>persistent abnormal smell for the last 2 1/2 years...
>>
>>i understand that
>>olfactory "irregularities" are a fairly common secondary symptom of pd
>>[as opposed to new factory irregularities]
>>
>>one of the funniest 'list hustle' experiences here
>>was the scammer who signed on in order to promote
>>sales in aromatherapy!
>>
>>janet
>>
>>ps
>>try a search in the archives using "smell" or "olfactory"
>>
>>janet paterson
>>52 now / 41 dx / 37 onset
>>PO Box 171 Almonte Ontario K0A 1A0 Canada
>>a new voice http://www.geocities.com/SoHo/Village/6263/
>>[log in to unmask]
>
=========================================================================
Date: Mon, 14 Jun 1999 15:08:35 -0500
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Nita Andres <[log in to unmask]>
Subject: re travel
MIME-Version: 1.0
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Dorothy, what is Priceline and how does one contact them? Nita
=========================================================================
Date: Mon, 14 Jun 1999 14:26:18 -0600
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Nancy Burnham <[log in to unmask]>
Subject: Re: Travel No More/Beaten - Long Piece
MIME-Version: 1.0
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Several years ago I broke my ankle in three places and have nine screws and
a plate. During the time when I was still wearing an airbrace and using a
cane we traveled to Europe. I got such good care I've often thought if I
have to travel that far again I would put on my airbrace!!!! Going through
customs was a snap and we were always able to catch the motorized cart, but
then my husband was with me which I'm sure made it alot easier. As recent
as last year we had an experience similar to yours, but not quite as bad.
We were just trying to get from Houston to Phoenix. It was a hassle. I
have learned to always carry food with us. A snack I like is a mixture of
soy nuts and dried cranberries. This is good carbs, fat and protein. Nancy
B cg for Don 65/16
-----Original Message-----
From: Dorothy Ivankoe <[log in to unmask]>
To: [log in to unmask] <[log in to unmask]>
Date: Monday, June 14, 1999 1:51 PM
Subject: Re: Travel No More/Beaten - Long Piece
>In a message dated 6/14/99 5:52:29 AM, [log in to unmask] writes:
>
><<
>I need to tell you this tale for me to get it out, not necessarily to have
>you respond or even understand.
>I was invited to New Hampshire by friends for a rest of 2 yrs of changes,
>flight from Elkhart, Indiana to Manchester, New Hampshire was uneventful
>>
>
=========================================================================
Date: Mon, 14 Jun 1999 14:41:21 -0500
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Linda Warrenburg <[log in to unmask]>
Subject: Re: I ASK AGAIN - "Fund the Cure" Stamps ?
Comments: cc: [log in to unmask]
MIME-Version: 1.0
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Bonnie,
The URL is too long, but go to http://www.usps.gov/search97bin/search &
it's #4.
Linda
PS. Wouldn't you know it....I thought that I sent this before I had to
leave for Waco. I just got home & it's still in the Out Box. Sorry, my
intentions were good.
lsw
Bonnie wrote:
> Can you post the url for the post office.
> Thanks.>
=========================================================================
Date: Mon, 14 Jun 1999 14:48:33 -0600
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: "Kathrynne Holden, MS,RD" <[log in to unmask]>
Organization: Five Star Living, Inc.
Subject: Re: nonstandard therapies
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Nancy, I'm a western-trained health professional, and I can assure you I
take alternative therapies very seriously indeed. My professional
organization (the American Dietetics Association), although very
conservative, has recently formed a dietetics practice group made up of
dietitians who are interested in complementary and alternative
therapies; I was a charter member of this group. I encourage my clients
to freely discuss any supplements or alternative therapies they use, and
I always offer to work with other therapists to provide a holistic care
program.
Awhile back coenzyme Q-10 was laughed at by health professionals; now
it's taken seriously as a supplement for people who have congestive
heart failure; and is being tested around the country by Parkinson's
researchers. I believe that's also true for NADH.
Paul Mote recently posted about a study on Tuina, a therapy used by
practitioners of Oriental medicine, to help relieve some of the effects
of PD. Initial results on a small number of people look promising,
though it's still early days.
I have had rheumatoid arthritis since a fairly young age. I get
acupuncture treatments from a neurologist, and they are helpful. The
neurologist took up the study of acupuncture because he found important
areas of treatment not addressed by his western-medicine training.
I think that western medicine and alternative therapies can support and
strengthen each other, and I hope more research and trials will take
place. I believe that adequate research will show that many therapies
offer help that western medicine does not address.
And I hope that listserv members won't be afraid to speak up -- in my
opinion, no one should feel "censored." Open discussion is important.
Heck, Galileo was persecuted for demonstrating that the world was round,
but guess what -- he was right.
Best,
Kathrynne
Nancy Burnham wrote:
>
> My sediments exactly. Whenever I mention nonstandard therapies we are
> trying I can feel the cold shoulder all the way to Montana. Consequently
> I've just about stopped communicating. I am really getting a phobia about
> mentioning any information I find out
> about on this list. I feel that we are doing lots of things right since my
> husband, who has had PD for at least 16 years, is still able to work 10 hour
> days 7 days a week on our ranch. This last week he spend fixing fence in
> our mountain pasture. He would leave around 8:00 in the morning and get
> home around 8:00 in the evening. Yesterday we took the cattle to the
> mountains. Left our yard at 4:30 on horseback, arrived at the pasture at
> noon. Back home around 2:00. I took a nap, but Don didn't get a chance to
> rest until he went to bed around 8:30. I didn't even ride, just took food to
> the riders for breakfast and lunch!!!
>
> I've investigated aromatherphy, but never tried it. I've heard of personal
> testimonies from several who have had great results.
>
> Some of the products we try seem to help, other don't. I have high hopes
> for what we are doing now. I'm sure not going to leave our health only in
> the hands of the medical profession.
>
> Earlier I wrote about the clinic in California that gets to the root cause
> of chronic conditions, have talked to several who have gone and have had
> great results. ( not PD) In conjunction with the clinic is a non-toxic
> dental clinic. We are seriously thinking of making an appointment with the
> clinic. I'm sure one of the first recommendation will be for Don to have
> all of his fillings removed.
>
> Nancy B cg for Don 65/16.
>
> PS I'm leaving this week to visit my children in Boise Idaho. I have a son
> and daughter there and three Grand Babies. Will probably get off the list
> for a short time.
>
--
Kathrynne Holden, MS, RD
Medical nutrition therapy
Author: "Eat well, stay well with Parkinson's disease"
"Parkinson's disease: assessing and managing unique nutrition needs"
http://www.nutritionucanlivewith.com/
=========================================================================
Date: Mon, 14 Jun 1999 16:43:24 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Jim Cordy <[log in to unmask]>
Subject: Re: PENNIES FOR PARKINSON
In-Reply-To: <[log in to unmask]>
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
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My best location for canisters remains Brewster's Ice Cream. I speculate
people are in a good mood when they buy ice cream, use cash and have loose
change
> -----Original Message-----
> From: Parkinson's Information Exchange
> [mailto:[log in to unmask]]On Behalf Of Don McKinley
> Sent: Monday, June 14, 1999 12:50 PM
> To: [log in to unmask]
> Subject: PENNIES FOR PARKINSON
>
>
> hi i got 5 cans out for pennies do not know how much yet. am going to let
> them be for a while. oh did i say i gave in and accept vice pres. of our
> support group. has any one yet tried a lazier light to walk with? hate to
> buy one to see if it works. because of the hot whether VIVIAN got me some
> new to drink. in place of so much water,ice tea. was getting lot of leg
> cramps. they said i was loosing my leech. lights. they said that was very
> bad. its been 90 to 93 all i do is set. oh well what are we PWP suppose to
> know. lolo and my razor backs are all fence in so they did not get email.
> maybe CINNY. FLYING PIGS. whitish it white hat might ship some
> your way lolo
> VIVIAN is going to help a friend of our of 50 years get a wig.
> (cancer) they
> give her 6 months to a year. when i first got PD. she was hear
> for me. some
> one is coming from church i said no i got to try to be on my own.
>
> I.Y.Q. DON AND VIVIAN
> LOVE OF MY LIFE-54
>
> BEST MEDS FOR PD IS
> TO SMILE AT A STRANGER
>
>
>
>
> [log in to unmask]
>
>
>
http://wcoil.com/~flash
=========================================================================
Date: Mon, 14 Jun 1999 22:53:31 +0200
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Sandor Halasz <[log in to unmask]>
Subject: Re: Travel No More/Beaten - Long Piece
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 8bit
Dear Gina
Now, reading your terrible travel story, I understand my concern about you.
I just felt, something is wrong, and decided to send that e-mail to you off
list yesterday.
I'm so touched and sad...... It's hard to find words, I'm sorry for
you........
I wish you to have many excellent trips, and forget this nightmare!
your friend in Hungary
Sandor
----Eredeti üzenet----
Feladó: Gina Cass <[log in to unmask]>
Címzett: [log in to unmask] <[log in to unmask]>
Dátum: 1999. június 14. 14:45
Tárgy: Travel No More/Beaten - Long Piece
>TO: My fellow PD's (maybe not in spirit but in disease)
>
>I need to tell you this tale for me to get it out, not necessarily to have
>you respond or even understand.
>I was invited to New Hampshire by friends for a rest of 2 yrs of changes,
>flight from Elkhart, Indiana to Manchester, New Hampshire was uneventful.
I
>stayed for a week and headed back to Indiana on Friday, June 10 flying a
well
>known Airline that I will name after I talk to the CEO, on their position.
>My first flight out of Manchester was late, making me miss my connection in
>Newark, NJ. They had advance notice that I needed a wheelchair to get to
the
>next gate on the other side of the airport which was not there. It seemed
to
>be a hinderance to get one and the person pushing was having a conversation
>with someone I could not see. They were discussing a picture of a fire and
>if this person had taken the photo.
>Like I stated I missed my connection in Newark to Cleveland. The next
flight
>to Cleveland was the one I was booked on this one was delayed due to a
light
>that would not light. Yes the thing that it was attached to had to work
and
>was but we needed that light, I understand. I started flying at 10:05AM
EDT.
>from New Hampshire. I asked at each leg of this adventure to preboard due
to
>using a cane.
>Was told that was fine but had to remind them each time. One time they
>completely forgot and I had to battle the crowd, which don't care if you
walk
>or not.
>They no longer have meals on the flights so I was having a problem finding
>things to eat. Need to eat after some of the meds. O'hare I found best to
>get a light something to eat OH that is later.
>I finally got to Cleveland, OHIO. I kept telling my hosts I did not want
to
>go to Cleveland. Over and over was my lament. But Cleveland is a hub city
>of this particular Airline. I orginally started with a 4 hr layover in
>Cleveland but due to missed flights, hobbling to gates etc, I had about 1
hr.
>This was a trek from Concourse C to B opposite sides of the airport (Why
are
>they so far apart?) I had not been able to take my meds, I was hot, tired
and
>upset. But I had done so well this whole week. I was right "on". While
>standing in line at the check-in I found out my flight from Cleveland had
>been delayed. Twenty minutes later the flight was cancelled. Due to
>weather. I looked around and not a cloud or problem appeared. I felt it
>coming, but I could not stop any of it. Standing in line, I mentally went
>away. A wonderful young woman, her husband and daughter together asked if
I
>was OK. She took a hold of my arm, took me out of line, set me down, and
>asked if I was diabetic (I could only nod), I couldn't get out the fact I
had
>Parkinson's. My Tremors had gone crazy. I was shaking so violently that
it
>was hard to hold my ticket. They gave me juice, candy and something in a
>tube called glucose. Told me they first thought I was drunk or needed a
>drink and then realized that something else was wrong due to the color of
my
>skin, plus the fact of the cold, clammy touch. The Airline representative
>commented that she was going to get to me next. TOO LATE
>An ambulance was called, Perimedics put me in ambulance, and took me to a
>hospital due to the fact that my blood pressure was dangerously high and my
>blood sugar was so high. They kept saying something about my heart and
>wanting to give me Nitro. In my confused state I cannot remember what they
>said. I will call hospital and have them tell me.
>Nice little hospital, close to airport. Doctor was very busy, say him only
>very briefly but was hooked to D5 to lower everything. I told them I
needed
>something to eat to take meds which I was allowed to use my own was given a
>snack that was wonderful. I was treated to a 6hr stint there with various
>nurses visiting, sitting on my bed and talking, a wife of another Emergency
>Room guest bringing her chair over to my cube and sitting with me. I do
have
>a way with some people of being there for them and putting them at ease.
Two
>ladies from the airline brought me Vouchers to go to a Hotel that night
what
>was left of it, to stay the night, Taxi Vouchers, and meal vouchers. They
>finally arrived after 3 hrs of promises that the vouchers were on there
way.
>Remember the Airport is very close to the Hospital. I was finally released
>and got a cab. The young man was very rude to start but I just wanted to
get
>to a room, take a shower and rest. He refused to take my travel voucher
due
>to the fact he picked me up at the hospital and not the airport. So I paid
>him. Got into Hotel and asked for my room and was told I did not have a
>room. The real confusing part was they had my luggage. Why did it go
there
>if I had no room? I cracked, crying, I called home to rant, when the hotel
>staff person said they had a room at the other hotel for me and a shuttle
to
>take me. I ended up 25 minutes away from the airport now and not 5
minutes,
>1:30 AM no food (I had some trail mix luckly) and so upset I could not get
>right to sleep. I had about 4 hrs sleep, ordered breakfast that cost
$11.23
>when the voucher was for only $8.00, and I ordered just a basic no frills
>breakfast.
>Got a shuttle, just for me to the airport for the flight the Airline had
put
>me on. Which the Airport was a zoo, then I got to the check-in and again
my
>flight was cancelled due to weather (South Bend nor Cleveland had a weather
>problem, I checked). The next( 12:00) flight was cancelled (Feeling like
>the "Out-of-Towner). They had put me on a 1:45 PM flight on another
airline
>to Chicago O'Hare now. This flight had been schduled to leave at 12:03 now
>was leaving at 1:45 PM, I felt that this would end up like the other
flights.
> I went up to the counter, placed my ticket up there and said I am very ill
>and I need to get home now. She looked at me and agreed so booked me on
the
>1:30 PM flight to Chicago as I wanted to travel with the couple that had
been
>there for me. This flight was delayed. We got to Chicago O'hare with no
>problems. No Wheelchair again, they called for one but it never came. No
>Electric Cart either and I was so scared that I would miss the next and
final
>flight. From D Concourse to B Concourse walking with my cane but I made it
>with time to spare. Also, found a little stand and got some water, and a
>lunchable to eat to take meds. This flight was delayed once not due to
>weather but something else. Oh yes the flight never came.
>I finally got to South Bend, Indiana (Notre Dame Fame) with one piece of
>luggage with the other piece coming 20 minutes later.
>This is a Nightmare that wouldn't end. I am beat physically and
emotionally.
> I lack the faith that I did have in myself. I know many will say don't
>travel alone, but I am new at this. I have always been fiercely
independent
>and now have to confront my limitations.
>I just needed to get this out and thanks for understanding.
>
>gina
=========================================================================
Date: Mon, 14 Jun 1999 18:15:19 EDT
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Dorothy Ivankoe <[log in to unmask]>
Subject: Re: re travel
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
In a message dated 6/14/99 1:22:19 PM, [log in to unmask] writes:
<< Dorothy, what is Priceline and how does one contact them? Nita >>
Priceline is an auction website. It can be accessed thru "www.priceline.com"
We had to go to a funeral on the east coast last fall. The cheapest
bereavement fare was more than $800 each. I placed a bid for $225 each which
they accepted. The regular last minute fare would have been about $1600 each
thru numerous airlines..
Hopefully this will explain how it works. When someone makes a bid thru the
Priceline web site for an air fare, Priceline in turn sends it out to various
airlines. If an airline has unsold seats for that particular route, they
often accept the bid rather than keep the unsold seats. Priceline will then
notify you within a couple of hours whether or not your bid has been
accepted.
Some of the stipulations are if you make a bid for a certain date and it is
not accepted, you cannot make a higher bid for the same date. You also can't
say what airline you want to use and rather than a nonstop flight which we
normally would have gotten, we had to change planes (it's well worth it to
save that much money). You also can't say what time you want to depart but
they do guarantee that you will arrive no later than a certain hour (in other
words, they don't put you on a "red eye" from the west coast to the east).
They also do not give frequent flyer miles and they allow NO changes once you
confirm your flight.
Even with all of that, I like it for certain instances. We're going east in
July but I won't use them because of the "no cancellation" clause but will
use senior coupons instead.
They have been on an advertising blitz the last couple of months and
published lots of pictures in national newspapers and magazines of people who
have used it. (I finally made the paper a couple of weeks ago.)
Hope this helps -- their web site has a much better explanation. They are
also taking bids for hotels (which I might try for July) and will be doing
cruises I believe in the fall.
Dorothy CG Roy 68/44/42
=========================================================================
Date: Mon, 14 Jun 1999 18:37:19 EDT
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: "Terrie W. Whitling" <[log in to unmask]>
Subject: Re: PENNIES FOR PARKINSON
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
My best locations are my chiropractor's office and the local pizzaria
=========================================================================
Date: Mon, 14 Jun 1999 15:51:17 -0700
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: "Bernard Barber,Ph.D." <[log in to unmask]>
Subject: Alternative Medicine
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Most of us who believe in the scientific method are not opposed to
alternative suggestions or inquiry, What we are cautious of are the
unsubstantiated claims and non-scientific presentation of treatment options
offered to a vulnerable population that have been disappointed by more
"traditional approaches". Often the same attitude of the past, like
millions of years ago, we deified what we did not understand and called it
faith. I wonder if that might not be a factor in our wish, hope, desire,
and even demand for some thing that will make us happy or potent.
I often wonder about the thousand of potions or articles of health that
have been consumed by us only to find that in time, only a few are
medicines of true value. Science, like the wheels of justice grind very
slowly but fine. Although I often think just how fast our discoveries are
coming, I am, also, aware that they are based on years of study and
thoughtfulness. Some things that feel good, smell good, or even taste good
are not, by themselves, indicators of value apart from the sensory
gratification.
It seems to me that we are all in the process of becoming, or some folks
say a "work in process".
=========================================================================
Date: Mon, 14 Jun 1999 15:41:09 -0600
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: "B. BRUCE ANDERSON" <[log in to unmask]>
Subject: Fw: Re: re travel
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit
another one is 1 800 FLY 4LESS. i don't think it's as good as priceline.com
but yu don't have to bid, yu just phone em up. don't try them without a
phone with redial tho!
----- Original Message -----
From: Dorothy Ivankoe <[log in to unmask]>
To: <[log in to unmask]>
Sent: Monday, June 14, 1999 4:15 PM
Subject: Re: re travel
> In a message dated 6/14/99 1:22:19 PM, [log in to unmask] writes:
>
> << Dorothy, what is Priceline and how does one contact them? Nita >>
>
> Priceline is an auction website. It can be accessed thru
"www.priceline.com"
> We had to go to a funeral on the east coast last fall. The cheapest
> bereavement fare was more than $800 each. I placed a bid for $225 each
which
> they accepted. The regular last minute fare would have been about $1600
each
> thru numerous airlines..
>
> Hopefully this will explain how it works. When someone makes a bid thru
the
> Priceline web site for an air fare, Priceline in turn sends it out to
various
> airlines. If an airline has unsold seats for that particular route, they
> often accept the bid rather than keep the unsold seats. Priceline will
then
> notify you within a couple of hours whether or not your bid has been
> accepted.
>
> Some of the stipulations are if you make a bid for a certain date and it
is
> not accepted, you cannot make a higher bid for the same date. You also
can't
> say what airline you want to use and rather than a nonstop flight which we
> normally would have gotten, we had to change planes (it's well worth it to
> save that much money). You also can't say what time you want to depart
but
> they do guarantee that you will arrive no later than a certain hour (in
other
> words, they don't put you on a "red eye" from the west coast to the east).
> They also do not give frequent flyer miles and they allow NO changes once
you
> confirm your flight.
>
> Even with all of that, I like it for certain instances. We're going east
in
> July but I won't use them because of the "no cancellation" clause but will
> use senior coupons instead.
>
> They have been on an advertising blitz the last couple of months and
> published lots of pictures in national newspapers and magazines of people
who
> have used it. (I finally made the paper a couple of weeks ago.)
>
> Hope this helps -- their web site has a much better explanation. They
are
> also taking bids for hotels (which I might try for July) and will be doing
> cruises I believe in the fall.
>
> Dorothy CG Roy 68/44/42
=========================================================================
Date: Mon, 14 Jun 1999 20:56:11 +1000
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Mary Thompson <[log in to unmask]>
Subject: Re: Persistent Abnormal Smells
Comments: To: [log in to unmask]
In-Reply-To: <[log in to unmask]>
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
About three years ago I was sitting with the family watching tely when I
could smell a chemical odour that smelled like electrical wires burning. I
said to my family that I thought the tely was on it's way out. Of course
nobody else could smell any-thing. My neurologist asked me if it was
followed by a head ache saying that it was a fairly common thing to happen
before a migraine. As this was n ot the case he sent me for tests for
epilepsy which also proved negative. It kept up ,on and of, for about a
year or so then stopped. In hindsight it was during a period of extreme
stress and so I just put it down to that.
Regards Mary Thompson from Oz.
=========================================================================
Date: Mon, 14 Jun 1999 19:34:50 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Hilary Blue <[log in to unmask]>
Subject: Re: Fw: Re: re travel
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
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I used CHEAPTICKETS.They operate online and at this number. I have found them
charming and cooperative, and willing to spend time to find you the best deal.
- i've mislaid the no, will post it when i find it - or contact me off line if
you want it.
Hilary Blue
B. BRUCE ANDERSON wrote:
>
> another one is 1 800 FLY 4LESS. i don't think it's as good as priceline.com
> but yu don't have to bid, yu just phone em up. don't try them without a
> phone with redial tho!
> ----- Original Message -----
> From: Dorothy Ivankoe <[log in to unmask]>
> To: <[log in to unmask]>
> Sent: Monday, June 14, 1999 4:15 PM
> Subject: Re: re travel
>
> > In a message dated 6/14/99 1:22:19 PM, [log in to unmask] writes:
> >
> > << Dorothy, what is Priceline and how does one contact them? Nita >>
> >
> > Priceline is an auction website. It can be accessed thru
> "www.priceline.com"
> > We had to go to a funeral on the east coast last fall. The cheapest
> > bereavement fare was more than $800 each. I placed a bid for $225 each
> which
> > they accepted. The regular last minute fare would have been about $1600
> each
> > thru numerous airlines..
> >
> > Hopefully this will explain how it works. When someone makes a bid thru
> the
> > Priceline web site for an air fare, Priceline in turn sends it out to
> various
> > airlines. If an airline has unsold seats for that particular route, they
> > often accept the bid rather than keep the unsold seats. Priceline will
> then
> > notify you within a couple of hours whether or not your bid has been
> > accepted.
> >
> > Some of the stipulations are if you make a bid for a certain date and it
> is
> > not accepted, you cannot make a higher bid for the same date. You also
> can't
> > say what airline you want to use and rather than a nonstop flight which we
> > normally would have gotten, we had to change planes (it's well worth it to
> > save that much money). You also can't say what time you want to depart
> but
> > they do guarantee that you will arrive no later than a certain hour (in
> other
> > words, they don't put you on a "red eye" from the west coast to the east).
> > They also do not give frequent flyer miles and they allow NO changes once
> you
> > confirm your flight.
> >
> > Even with all of that, I like it for certain instances. We're going east
> in
> > July but I won't use them because of the "no cancellation" clause but will
> > use senior coupons instead.
> >
> > They have been on an advertising blitz the last couple of months and
> > published lots of pictures in national newspapers and magazines of people
> who
> > have used it. (I finally made the paper a couple of weeks ago.)
> >
> > Hope this helps -- their web site has a much better explanation. They
> are
> > also taking bids for hotels (which I might try for July) and will be doing
> > cruises I believe in the fall.
> >
> > Dorothy CG Roy 68/44/42
=========================================================================
Date: Mon, 14 Jun 1999 19:39:04 EDT
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Marty Polonsky <[log in to unmask]>
Subject: Re: PET Scans
Comments: To: [log in to unmask]
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Joe,
II knew about the high expense of PET scans but I did not know that they were
any more dangerous than, e.g., a CT scan. As you know, they present a
potetially significant development in research and diagnosis in their
capacity to visually portray the poverty of dopaminergic activity in the
substantia nigra.
Marty Polonsky
=========================================================================
Date: Mon, 14 Jun 1999 19:52:02 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: "Teresa V. Bohuszewicz" <[log in to unmask]>
Subject: Re: Persistent Abnormal Smells...ear wax, too.
In-Reply-To: <000301beb5eb$277d07c0$e681ffd0@NLMPRM>
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
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My mother use to smell a bad odor (I think she described it as metallic).
She, also, had excessive ear wax from her left ear so I took a Q-tip, wiped
out some wax, and sniffed it. I describe the odor as a rancid, metallic
smell. We concluded that it was probably her Sinemet.
Teresa, Daughter of Mama (57/43/38)
-----Original Message-----
From: Parkinson's Information Exchange
[mailto:[log in to unmask]]On Behalf Of Paul Myhre
Sent: Sunday, June 13, 1999 6:21 PM
To: [log in to unmask]
Subject: Persistent Abnormal Smells
My name is Norma Myhre and new to the PARKINSN list. I started having
tremors 3 1/2 - 4 years ago and was diagnosed with PD this past March. I am
a participant in a 2 year study and I am taking either Sinemet or
Ropinirole. The tremors seem to be mostly under control but am having
trouble with cramping in my arms, hands and slightly in the legs, sleepless
nights and achiness. Thank you all for sharing information on these
problems and others.
I have an odd problem in that I have experienced a persistent abnormal smell
for the last 2 1/2 years. No one in the family, friends, and especially
those who claim to have a very keen sense of smell can detect the odor.
After CAT scans, x-rays and other tests of the sinuses and nostrils, I was
told it was something I probably will have to live with. I even went to a
hypnotist without any help. Very frustrating! In reading the "The PDF
NEWS" Fall/Winter 1998-1999 issue under "Mary's Mailbag" on page 14 there is
an article "What's That Smell?". It says "We've heard from some PWPs
who've lost their sense of smell, from others who complain of persistent
abnormal smells, .........". Last Monday I sent an e-mail to the PDF
Organization asking for help but have not heard from them. I have also
asked for help from the neurologist but to no avail.
Any information or referrals you might have will be greatly appreciated.
Thank you.
Norma
E-Mail Address: [log in to unmask]
P.S. Barbara Patterson - Thank you for your "Welcome" message.
=========================================================================
Date: Mon, 14 Jun 1999 18:07:05 -0600
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: "B. BRUCE ANDERSON" <[log in to unmask]>
Subject: PET Scans-advice requested
Comments: cc: mary wilkin <[log in to unmask]>, norm zettel <[log in to unmask]>,
denis sullivan <[log in to unmask]>,
barry & joan andersom <[log in to unmask]>,
barb anderson <[log in to unmask]>,
"bruce anderson [home]" <[log in to unmask]>,
"w bartus [work]" <[log in to unmask]>,
pat hanson <[log in to unmask]>
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit
As a few of yu may know, i definitely do not have Michael J Fox's version
of pd. i had my 1st symptom in '94, was diagnosed in '95 and completely
lost the ability to walk in 3/99. i have no on's or off's, tremor, no
dyskenesia - just freezing of my legs which now feels more like paralysis.
A month ago i tried a different neuro. [my wife & sister went on the last
appt. with the previous one & didn'tcare for him + I can see him only for 20
min. 3 times a year + he won't respond to faxes & since my speech is mostly
unintelligible that's it!!]. I have tried all the drugs & only sinement
seems to do just a little bit of good.
This new neuro immediately suggested a PET scan, which he just called my
wife with the results. He said that he could see no sgns of MSA, SDS, SNP,
or any of the other PD+ diseases + he said he saw no sign of PD either so i
dont have PD! [he furthermore said i needed to see a movement disorders
specialist, {MDS} which i thought this guy was {Dr. Avery Katz in Clifton,
NJj} - i didn;t know that neuro's who billed themselves as pd specialists
did not consider themselves MDS's]
Does anyone out there know if this dr is correct- can a PET scan completely
rule OUT PD? I surely do have something & it does closely resemble PD in
many ways.
THANKS, right now i don't know what to do or where to go
Bruce Anderson [53, 5]
[log in to unmask]
Schooley's Mtn, NJ
Message -----
From: Marty Polonsky <[log in to unmask]>
To: <[log in to unmask]>
Sent: Monday, June 14, 1999 5:39 PM
Subject: Re: PET Scans
> Joe,
> II knew about the high expense of PET scans but I did not know that they
were
> any more dangerous than, e.g., a CT scan. As you know, they present a
> potetially significant development in research and diagnosis in their
> capacity to visually portray the poverty of dopaminergic activity in the
> substantia nigra.
> Marty Polonsky
>
=========================================================================
Date: Mon, 14 Jun 1999 22:05:53 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: joe <[log in to unmask]>
Subject: Re: Janet's website- a different kind of hero
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Hi all:
I would like to thank Janet Paterson for her website last week =
regarding "Joe's Story--A different kind of hero". Five months later we =
still have no cause of death,=20
I have recently heard from the coroner, who tells me that the =
post-mordem is almost completed. At such time that I have any =
information, I will certainly post it to the list.
Thank you Janet, Judith and Al, and to all the list members for your =
kind thoughts and prayers that are helping me get through these times.
Donna Bruckbauer and family.
------=_NextPart_000_0004_01BEB6B2.11DD43E0
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</HEAD>
<BODY bgColor=3D#ffffff>
<DIV><FONT color=3D#000000>Hi all:</FONT></DIV>
<DIV><FONT color=3D#000000> I would like to thank Janet Paterson =
for her=20
website last week regarding "Joe's Story--A different kind of =
hero".=20
Five months later we still have no cause of death, </FONT></DIV>
<DIV><FONT color=3D#000000>I have recently heard from the coroner, who =
tells me=20
that the post-mordem is almost completed. At such time that I have =
any =20
information, I will certainly post it to the list.</FONT></DIV>
<DIV><FONT color=3D#000000>Thank you Janet, Judith and Al, and to all =
the list=20
members for your kind thoughts and prayers that are helping me get =
through these=20
times.</FONT></DIV>
<DIV><FONT color=3D#000000>Donna Bruckbauer and =
family.</FONT></DIV></BODY></HTML>
------=_NextPart_000_0004_01BEB6B2.11DD43E0--
=========================================================================
Date: Mon, 14 Jun 1999 22:55:21 -0400
Reply-To: [log in to unmask]
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Sharon Le Blanc <[log in to unmask]>
Subject: PubMed medline query
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<Bass href=3D"http://www.ncbi.nlm.nih.gov">
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r_PubMed-med-query.gif"
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"/PMGifs/Toolbar/citation.gif" border=3D0 align=3Dtop alt=3D"[Citation Fo=
rmat]"></a>
<a href=3D"/cgi-bin/Entrez/referer?/htbin-post/Entrez/query%3fdb=3Dm&form=
=3D6&uid=3D10188958&Dopt=3Dl"><img src=3D"/PMGifs/Toolbar/medline.gif" bo=
rder=3D0 align=3Dtop alt=3D"[MEDLINE Format]"></a>
<BR>
<strong>Links:</strong> <a href=3D"/cgi-bin/Entrez/referer?/htbin-post/En=
trez/query%3fdb=3Dm&form=3D6&uid=3D10188958&Dopt=3Dm"><img src=3D"/PMGifs=
/Toolbar/relart.gif" border=3D0 align=3Dtop alt=3D"[111 medline neighbors=
]"></a>
<P><INPUT TYPE=3D"checkbox" NAME=3D"uid" VALUE=3D"10188958" >
<B>Order this document</B>
<P><em>Neuroscience</em> 1999 Apr;90(1):333-47 <BR>
<P><h2>Alterations in expression of the neurotrophic factors glial cell l=
ine-derived neurotrophic factor, ciliary neurotrophic factor and brain-de=
rived neurotrophic factor, in the target-deprived olfactory neuroepitheli=
um.</h2>
<P><h4>Buckland ME, Cunningham AM</h4>
<P>Neurobiology Program, The Garvan Institute of Medical Research, St Vin=
cent's Hospital, Darlinghurst, NSW, Australia.
<P>
[Medline record in process]<br><P>Neuronal growth factors play an importa=
nt role in the development and maintenance of the nervous system. In the =
olfactory system, neurogenesis and synapse formation occur not only durin=
g development but throughout life and it would be expected that growth fa=
ctors play a significant role in these ongoing processes. We have examine=
d the expression of three neurotrophic factors, glial cell line-derived n=
eurotrophic factor, ciliary neurotrophic factor and brain-derived neurotr=
ophic factor in the normal rat olfactory system and following synaptic ta=
rget ablation (olfactory bulbectomy). We found that brain-derived neurotr=
ophic factor immunoreactivity was confined to the horizontal basal cells =
of the olfactory neuroepithelium and was unaltered by bulbectomy. Glial c=
ell line-derived neurotrophic factor immunoreactivity was present in the =
mature olfactory neurons and also their synaptic target cells in the olfa=
ctory bulb. Following bulbectomy, glial cell line-derived neurotrophic fa=
ctor immunoreactivity was abolished from the neuroepithelium. Ciliary neu=
rotrophic factor was present throughout the olfactory neuronal lineage wi=
th strongest immunoreactivity in the horizontal basal cells and mature ol=
factory neurons as well as several cell types in the olfactory bulb. Post=
bulbectomy, there was loss of strong ciliary neurotrophic factor immunore=
activity in olfactory neurons, however, low levels persisted in the remai=
ning neuronal population. Horizontal basal cell immunoreactivity persiste=
d over three months. Our results would be consistent with glial cell line=
-derived neurotrophic factor expression in mature olfactory neurons being=
dependent upon functional synaptic contact with the olfactory bulb. Alte=
rnatively, this factor may be acting as target-derived growth factor for =
olfactory neurons, a role in keeping with its function in spinal motoneur=
ons and in the nigrostriatal system. Brain-derived neurotrophic factor is=
implicated in the trophic support of immature neurons. Ciliary neurotrop=
hic factor is clearly important in this unique neuronal system but elucid=
ation of its role awaits further investigation.
<P>PMID: 10188958, UI: 99202841
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=========================================================================
Date: Mon, 14 Jun 1999 23:16:22 -0400
Reply-To: [log in to unmask]
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Sharon Le Blanc <[log in to unmask]>
Subject: PubMed medline query
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<a href="/cgi-bin/Entrez/referer?/htbin-post/Entrez/query%3fdb=m&form=6&uid=9613755&Dopt=l"><img src="/PMGifs/Toolbar/medline.gif" border=0 align=top alt="[MEDLINE Format]"></a>
<BR>
<strong>Links:</strong> <a href="/cgi-bin/Entrez/referer?/htbin-post/Entrez/query%3fdb=m&form=6&uid=9613755&Dopt=m"><img src="/PMGifs/Toolbar/relart.gif" border=0 align=top alt="[108 medline neighbors]"></a>
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<P><em>Mov Disord</em> 1998 May;13(3):563-5 <BR>
<P><h2>Olfactory function in restless legs syndrome.</h2>
<P><h4>Adler CH, Gwinn KA, Newman S</h4>
<P>Parkinson's Disease and Movement Disorders Center, Department of Neurology, Mayo Clinic Scottsdale, Arizona 85259, USA.
<P>Restless leg syndrome (RLS) is usually idiopathic but may occur in patients with Parkinson's disease (PD). Both respond to dopaminergic medications. Whether these disorders share a common pathophysiology is unclear. Because PD is associated with a loss of olfactory function, we compared the olfactory function of patients with RLS with control and PD patients. Using the University of Pennsylvania Smell Identification Test (UPSIT), olfactory function was found to be normal in patients with idiopathic RLS and significantly reduced in patients with PD. This suggests that the pathophysiology of RLS differs from PD, and that RLS likely is not a "forme fruste" or a preclinical sign of PD.
<P>PMID: 9613755, UI: 98273811
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=========================================================================
Date: Mon, 14 Jun 1999 23:52:30 -0400
Reply-To: Parkinson's Information Exchange <[log in to unmask]>
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Camilla Flintermann <[log in to unmask]>
Subject: Quetiapine
Mime-Version: 1.0
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Friends-- just to inform you in case you wondered, as I did, about this
drug which was discussed in one of the Medline postings Janet puts on.
I sent the article to Peter's neuro, asking if it might be a good choice
for him instead of Seroquel---lo and behold,he answered at once and said
that is the generic name for Seroquel !! Nowhere in the article was the
trade name mentioned, but I did feel a bit silly ! :-(
Anyhow, it's pretty neat to have a neuro who answers questions by e-mail!
He is also the one who handles the PD questions on the Univ. of
Cincinnatti's NetWellness website. Check it out, and go to the Ask An
Expert link, where there is a list of diseases--click on Parkinson's and
you get Dr. Arif Dalvi !
http://www.netwellness.org/
Camilla Flintermann, CG for Peter 81/70/55
Oxford, Ohio
http://www.newcountry.nu/pd/members/camilla/one.htm
<[log in to unmask]>
"Ask me about the CARE list for
Caregivers of Parkinsonians ! "
=========================================================================
Date: Mon, 14 Jun 1999 23:43:53 -0400
Reply-To: [log in to unmask]
Sender: Parkinson's Information Exchange <[log in to unmask]>
From: Sharon Le Blanc <[log in to unmask]>
Subject: PubMed medline query
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<P><em>J Neurol Neurosurg Psychiatry</em> 1997 May;62(5):436-46 <BR>
<P><h2>Olfactory dysfunction in Parkinson's disease.</h2>
<P><h4>Hawkes CH, Shephard BC, Daniel SE</h4>
<P>Department of Clinical Neurology, Ipswich, UK.
<P>OBJECTIVE: To evaluate olfactory function in Parkinson's disease. METH=
ODS: A standardised odour identification test was used, together with an =
evoked potential assessment with hydrogen sulphide. In addition, histolog=
ical analysis was performed on the olfactory bulbs of cadavers who died f=
rom Parkinson's disease. RESULTS: Over 70% of patients studied (71 of 96)=
were outside the 95% limit of normal on the identification test in an ag=
e matched sample and there was an unusual pattern of selective loss to ce=
rtain odours, not hitherto described. The evoked potentials were signific=
antly delayed but of comparable amplitude to a control matched population=
=2E Of the 73 patients studied only 37 had a technically satisfactory rec=
ord containing a clear response to both gases and of these, 12 were delay=
ed. For H2S there was more delay on stimulating the right nostril than th=
e left. Some patients with normal smell identification test scores had de=
layed evoked potentials. In the pathological examination of olfactory bul=
bs from eight brains, changes characteristic of Parkinson's disease (Lewy=
bodies) were seen in every olfactory bulb, particularly in the anterior =
olfactory nucleus, and were sufficiently distinct to allow a presumptive =
diagnosis of Parkinson's disease. CONCLUSIONS: Olfactory damage in Parkin=
son's disease is consistent and severe and may provide an important clue =
to the aetiology of the disease.
<P>PMID: 9153598, UI: 97297966
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