PIEN - I seem to have received someone else's response, not a blank
questionnaire. I agree with his responses but would add "Dyskinesia" up
front in question #1 and "Distonia" as well.
I am a 9+ year diagnosed PWP, now 66 years old. Keep up the good work
Nancy S. deGrazia
-------- Original Message --------
Subject: Re: Help with a new PDF publication for Parkinson's Disease
Date: Tue, 22 Jul 2003 07:40:02 -0700
From: "Merv Swing." <[log in to unmask]>
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Date: Tue, 22 Jul 2003 13:41:30 -0700
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Greg Wasson <[log in to unmask]>
Subject: Timely Reminder
MIME-Version: 1.0
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Late last night I was questioning the legitimacy of using patients to influence health policy decisions in Washington and in the states. I have a talk to give before a group of college undergraduates heading for careers in cell biology who are gathering to discuss, among other things, the stem cell debate. I am the patient advocate representative on the stem cell panel. I had been thinking about what I wanted to talk about and it occurred to me that perhaps my notion that our side, meaning the pro stem cell side, used propaganda every bit as much as Senator Brownback, Richard Doerflinger, and the rest of them. It seemed to me that the emotional power over legislators when confronted with one of us up close, hearing what our life is like, exceeded the value of our actual arguments in favor of stem cell research. There were scientists who could do that without having to parade symptomatic patients telling horrible stories before committee members. Somehow it seemed for a moment to be
unfair and too much of a tactic.
Later that night I happened to see to a friend from the MGH PD bulletin board online. I IM'd her and sought her opinion. She said many things, all of which were important to me, but the most important thing she said was that our participation in government policymaking, and in simply making the world around us aware of our existence, was not a matter of propaganda but a matter of truth. She said: "They need to see that once you walked unfettered along with all of them. And they should not forget for a moment that they could end up going the same route as you have traveled. Tell them how unfettered you were - remember the dancing."
Those words hit home. Of course she was right. Policymakers, and our neighbors and folks in the larger world, DO need to be reminded that "once we walked unfettered along with all of them." And from time to time we need to remember that ourselves. We block out a lot of memories of our old lives and old abillities to be able to endure our suffering with this disease. That is necessary. But every now then we need to rermember that we once lived unfettered in the world.
Thanks you my friend.
Greg
---------------------------------
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Date: Tue, 22 Jul 2003 17:44:38 EDT
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Kathleen Cochran <[log in to unmask]>
Subject: Re: Timely Reminder
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In a message dated 7/22/03 4:42:39 PM, [log in to unmask] writes:
<< Late last night I was questioning the legitimacy of using patients to
influence health policy decisions.... I have a talk to give before a group of
college undergraduates heading for careers in cell biology who are gathering to
discuss, among other things, the stem cell debate. I am the patient advocate
representative on the stem cell panel. >>
Greg,
What a thoughtful and moving post.
I'm in agreement with your friend. I also think it takes a lot of courage to
be a patient advocate and I thank you wholeheartedly for your activism.
Admiringly,
Kathleen
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Date: Tue, 22 Jul 2003 20:17:10 -0400
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
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From: Kaye Trott <[log in to unmask]>
Subject: Re: Help with a new PDF publication for Parkinson's Disease
MIME-Version: 1.0
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LUCy
I would like to see articals about parkinson plus especially psp.
willl it respond to cell stem research if pd ever does?
Kaye Trott
----- Original Message -----
From: "Lucy Sargent" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Monday, July 21, 2003 1:42 PM
Subject: Help with a new PDF publication for Parkinson's Disease
> The Parkinson's Disease Foundation (PDF) is launching a new booklet for
the mid-stage Parkinson's patient and we are asking if you can help us by
answering a few questions outlined below.
>
> This booklet is intended to be a practical guide on coping with PD at the
stage of the disease when it begins to interfere with everyday living
activities. We hope to provide readers with advice and tips on day-to-day
coping. The publication will be widely available and free of charge.
>
> We would be very grateful if you could share your thoughts with us by
answering the following questions:
>
> 1. What specific topics you would consider to be MOST helpful/useful in
such a publication? e.g. dealing with depression, nutrition, exercise,
adapting your home/surroundings etc.
>
> 2. In order of priority, what areas of day-to-day living does Parkinson's
most interfere with?
>
> 3. What practical advice/tips help you manage your PD that you would be
happy to share with others?
>
> 4. What sort of resources would be useful to include?
>
> Your input will help us to shape the content and context of this
publication. All comments are very gratefully received. If you would prefer
to telephone me to discuss your ideas, I would be delighted to hear from
you - you can reach me on (800) 457 6676.
>
> With many thanks for your support of our work at The Parkinson's Disease
Foundation.
>
> Yours sincerely,
>
> Lucy Sargent
> Director of Communications
> Parkinson's Disease Foundation
> 710 West 168th Street
> New York, NY 10032
> Tel: (212) 923-4700
> Fax: (212) 923-4778
>
____________________________________________________________________________
_________________________
>
> The Parkinson's Disease Foundation is dedicated to funding the highest
caliber research into the causes and cure of Parkinson's.
>
____________________________________________________________________________
_________________________
>
>
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Date: Tue, 22 Jul 2003 20:46:52 -0400
Reply-To: Parkinson's Information Exchange Network
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From: BARBARA DAVIS <[log in to unmask]>
Subject: Re: Longtime List member Passes away
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----- Original Message -----
From: "John Cottingham"
<[log in to unmask]>
To: <[log in to unmask]>
Sent: Tuesday, July 22, 2003 12:36 PM
Subject: Longtime List member Passes away
Thank You John
> I was notified today that one of our longtime list members, Bill C. Hipp,
passed away July 7th, 2003. Bill was a fellow parkie and didn't post much
but was a steadfast member.
>
> I have sent our condolences to his family and we surely will miss those
that pass from us.
>
> John Cottingham
> Co-owner Parkinsn
>
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Date: Tue, 22 Jul 2003 21:32:18 -0400
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
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From: Bob Allison <[log in to unmask]>
Subject: Re: 2nd Annual Parkinson's Disease Symposium
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Tom Is your symposium really on Friday and Saturday? I'm still a working
stiff (literally now!) so making it on a Friday is tough. Let us know when
you have a schedule of speakers and times for activities. Bob
----- Original Message -----
From: "Tom Berdine" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Tuesday, July 22, 2003 1:43 PM
Subject: 2nd Annual Parkinson's Disease Symposium
> HYPERLINK
> "http://youngparkinsons.com/symposium2003.htm"http://youngparkinsons.com
> /symposium2003.htm
>
> The Young Onset Parkinson's Association
>
> Proudly Presents
>
> 2nd Annual Parkinson's Disease Symposium
>
> &
>
> 2nd Annual Young Onset Awareness Walk
>
> Albuquerque, NM
>
> 10-11 October 2003
>
>
> ---
> Outgoing mail is certified Virus Free.
> Checked by AVG anti-virus system (http://www.grisoft.com).
> Version: 6.0.500 / Virus Database: 298 - Release Date: 7/10/2003
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Date: Tue, 22 Jul 2003 23:16:49 -0400
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Paula Shook <[log in to unmask]>
Subject: Re: muscle pain/waking up 20 min.
MIME-Version: 1.0
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Tom,
This is Paula from PA, 49, dx at age 37. I've had such pain in my
thighs for the last three days that I dread going to bed. I toss and turn,
get 20 min of sleep until the pain wakes me up. When it got to be every 10
min, I got the Ibuprofen out - took 4 - got 3 hrs sleep. Ibuprofen seems to
help me more than any other drug. I'm trying the liquid sinemet tomorrow
a.m.. Stay tuned/Paula
----- Original Message -----
From: "Tom McCreary" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Tuesday, July 22, 2003 12:51 PM
Subject: muscle contraction robbing sleep.
> Its been 4 days now w/o sleep. I am not doing well. AS i begin to fall
asleep the constricting or contracting of primarily my thigh muscles begin.
Occurring every 20+/- secs ad lasting for as many as 5 secs. This will go
on all night for until i take my first dose of Symetryl and Comtan. This
could be controlling the contractions during the day......... The sensation
is identical to that offered by the "tinge" device used by Chiropractors,.
It electronically causes a muscle to contract and then relax to reduce
soreness. Have any of you had a similar problem and what'd u do?
>
> ----------------------------------------------------------------------
> To sign-off Parkinsn send a message to:
mailto:[log in to unmask]
> In the body of the message put: signoff parkinsn
> Thanks Tom
>
>
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Date: Tue, 22 Jul 2003 22:41:48 -0700
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Edith Love <[log in to unmask]>
Subject: From Where I Stand: Timely Reminder
MIME-Version: 1.0
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It seems to me, Greg, that the responsibility you accepted-that of patient
advocate on the stem cell panel-"hangs heavy" on your mind. And well it
should! While you speak, you represent the millions in absentia who aren't
even aware that one day, something you have to say, at some point in time,
might make an immense difference in a patient's quality of life-whether it
be in stem-cell medication, methodology, economic relief or in enlightened
doctor-patient relations. You are to be commended!
However, when you speak of propaganda, I have to differ with you. In my
mind, there's a difference between opening the eyes of the general public
and MARKETING this PD and/or degenerative neuromuscular disease awareness
agenda
compared to PROPAGANDIZING a point of view possibly based on political party
rhetoric,
religious beliefs and self aggrandizement-and I don't care what one believes
privately as long as I am represented fairly politically. Politicians
depend on
coins that fill coffers and party favors that offer position payoffs. The
entire Stem
cell issue is a political plum!
As I sit here tapping keys, I cannot help but think it is all semantics.
What you friend recommended makes sense. We did dance. We did use hammers.
We did carry three grocery bags into the kitchen at a time. However, in
my mind's eye, we were never unfettered. If we accepted our
responsibilities here on Earth,
we have been anything but unfettered, and it is this "fettering" that
probably contributed to the
drastic changes in our lives today!
As one who now sits on the sidelines, I would like to personally thank you,
Greg, for accepting the patient advocacy spot. I also hope you will keep
us informed. I believe you have a wonderfully intelligent contribution to
offer.
In closing, I would hope that you might consider not just stories of the
lives of PDers, etc., but living examples as well as a video in "A Day in
the Life of........."
Let your audience SEE what life is like for individuals with degenerative
neuromuscular
diseases. There are a number of stages to view. More than one demonstrates
FETTERED.
In thought and mind; in caring and friendship,
E (of the headdress).
----- Original Message -----
From: "Greg Wasson" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Tuesday, July 22, 2003 1:41 PM
Subject: Timely Reminder
> Late last night I was questioning the legitimacy of using patients to
influence health policy decisions in Washington and in the states. I have a
talk to give before a group of college undergraduates heading for careers in
cell biology who are gathering to discuss, among other things, the stem cell
debate. I am the patient advocate representative on the stem cell panel. I
had been thinking about what I wanted to talk about and it occurred to me
that perhaps my notion that our side, meaning the pro stem cell side, used
propaganda every bit as much as Senator Brownback, Richard Doerflinger, and
the rest of them. It seemed to me that the emotional power over legislators
when confronted with one of us up close, hearing what our life is like,
exceeded the value of our actual arguments in favor of stem cell research.
There were scientists who could do that without having to parade symptomatic
patients telling horrible stories before committee members. Somehow it
seemed for a moment to be
> unfair and too much of a tactic.
> Later that night I happened to see to a friend from the MGH PD bulletin
board online. I IM'd her and sought her opinion. She said many things, all
of which were important to me, but the most important thing she said was
that our participation in government policymaking, and in simply making the
world around us aware of our existence, was not a matter of propaganda but a
matter of truth. She said: "They need to see that once you walked unfettered
along with all of them. And they should not forget for a moment that they
could end up going the same route as you have traveled. Tell them how
unfettered you were - remember the dancing."
> Those words hit home. Of course she was right. Policymakers, and our
neighbors and folks in the larger world, DO need to be reminded that "once
we walked unfettered along with all of them." And from time to time we need
to remember that ourselves. We block out a lot of memories of our old lives
and old abillities to be able to endure our suffering with this disease.
That is necessary. But every now then we need to rermember that we once
lived unfettered in the world.
> Thanks you my friend.
> Greg
>
>
>
> ---------------------------------
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>
> ----------------------------------------------------------------------
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Date: Wed, 23 Jul 2003 02:26:32 -0500
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Tom McCreary <[log in to unmask]>
Subject: Re: muscle pain/waking up 20 min.
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit
Paula, could you describe the type of pain you are experiencing??
----- Original Message -----
From: "Paula Shook" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Tuesday, July 22, 2003 10:16 PM
Subject: Re: muscle pain/waking up 20 min.
> Tom,
> This is Paula from PA, 49, dx at age 37. I've had such pain in my
> thighs for the last three days that I dread going to bed. I toss and
turn,
> get 20 min of sleep until the pain wakes me up. When it got to be every
10
> min, I got the Ibuprofen out - took 4 - got 3 hrs sleep. Ibuprofen seems
to
> help me more than any other drug. I'm trying the liquid sinemet tomorrow
> a.m.. Stay tuned/Paula
> ----- Original Message -----
> From: "Tom McCreary" <[log in to unmask]>
> To: <[log in to unmask]>
> Sent: Tuesday, July 22, 2003 12:51 PM
> Subject: muscle contraction robbing sleep.
>
>
> > Its been 4 days now w/o sleep. I am not doing well. AS i begin to fall
> asleep the constricting or contracting of primarily my thigh muscles
begin.
> Occurring every 20+/- secs ad lasting for as many as 5 secs. This will go
> on all night for until i take my first dose of Symetryl and Comtan. This
> could be controlling the contractions during the day......... The
sensation
> is identical to that offered by the "tinge" device used by Chiropractors,.
> It electronically causes a muscle to contract and then relax to reduce
> soreness. Have any of you had a similar problem and what'd u do?
> >
> > ----------------------------------------------------------------------
> > To sign-off Parkinsn send a message to:
> mailto:[log in to unmask]
> > In the body of the message put: signoff parkinsn
> > Thanks Tom
> >
> >
>
> ----------------------------------------------------------------------
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Date: Wed, 23 Jul 2003 10:28:38 +0100
Reply-To: Marco De Michiel <[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Marco De Michiel <[log in to unmask]>
Subject: Re: Timely Reminder
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
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Greg,
I think we need to face reality that in todays world the marketing of 'the
body beautiful' and all that it embraces is the way of life; just turn on
your TV or look at a magazine. The truth is society hides away the sick,
infirm and aged; and dare I say it ugly. Therefore, it would serve no
purpose to use some PwPer's in a Propoganda campaign. The word 'propoganda'
is often associated with presenting distorted facts, lies even, to achieve
an objective; in effect it's a negative word.
Another reality is that there is much 'self-interest', greed, bribery and
corruption in todays world therefore, finding support for any PD initiative
is not going to be easy because of the, "what's in it for me" mentality at
an individual and organisational(industry, medical or government) level.
The message is simple, "it could happen to them, or any one of their family"
Different? Are we? who says so? We do! They, the norm, don't, many are
indifferent and don't even have time to notice. So why bother emphasising
the physical changes as long as we have the same rights as other disabled
groups. As far as I'm concerned I've the same heart, soul and mind and
intellect that I had before PD and all the time in the world to myself to do
as I wish! 7 x 24 all mine more precious than money or material things. Time
to give to others.
Let me take this opportunity and try to express what I think we (PwPer's)
should be doing globally to help ourselves and others in the future.
Let me be frank this is a 'battle' plan to identify the causes of the
illness and stop it's progression; to advance new therapies; to expose the
Pharmaceutical industry; to expose the shortcomings of Neurologists and
Psychiatrists, for starters.
. A campaign to bring together all the PwP groups in the World using the
Internet - a single voice, no duplication of effort, quicker implementation
of ideas
. Establishing a PwP organisation independent of any vested interests - even
Doctor's get PD
. Establish a fund by asking each PwP to make an annual subscription of say
$50 - If you do the math it's potentially huge
. Establish a list of key Professionals who are not in it for the qudos
. A campaign to change the 'mind set'
. Establishing a database - of case histories
. Updating diagnostic procedures - to collect additional data
. A review of Medications and dosage - to avoid the slippery slope
. Changing the name - it's not a disease
. Establishing an 'effective' voice - action as well as words
. A model for other Neurological disorder groups
A polite observation, when will you and many others in PIEN, acknowledge
that there's a World beyond the east&west coasts of the USA. That there are
other members around the World who have good idea's and strong views but
fail to voice them because of the domination of US members and their almost
total pre-occupation with Stem-cell R&D.
With regards,
Marco
----- Original Message -----
From: "Greg Wasson" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Tuesday, July 22, 2003 9:41 PM
Subject: Timely Reminder
> Late last night I was questioning the legitimacy of using patients to
influence health policy decisions in Washington and in the states. I have a
talk to give before a group of college undergraduates heading for careers in
cell biology who are gathering to discuss, among other things, the stem cell
debate. I am the patient advocate representative on the stem cell panel. I
had been thinking about what I wanted to talk about and it occurred to me
that perhaps my notion that our side, meaning the pro stem cell side, used
propaganda every bit as much as Senator Brownback, Richard Doerflinger, and
the rest of them. It seemed to me that the emotional power over legislators
when confronted with one of us up close, hearing what our life is like,
exceeded the value of our actual arguments in favor of stem cell research.
There were scientists who could do that without having to parade symptomatic
patients telling horrible stories before committee members. Somehow it
seemed for a moment to be
> unfair and too much of a tactic.
> Later that night I happened to see to a friend from the MGH PD bulletin
board online. I IM'd her and sought her opinion. She said many things, all
of which were important to me, but the most important thing she said was
that our participation in government policymaking, and in simply making the
world around us aware of our existence, was not a matter of propaganda but a
matter of truth. She said: "They need to see that once you walked unfettered
along with all of them. And they should not forget for a moment that they
could end up going the same route as you have traveled. Tell them how
unfettered you were - remember the dancing."
> Those words hit home. Of course she was right. Policymakers, and our
neighbors and folks in the larger world, DO need to be reminded that "once
we walked unfettered along with all of them." And from time to time we need
to remember that ourselves. We block out a lot of memories of our old lives
and old abillities to be able to endure our suffering with this disease.
That is necessary. But every now then we need to rermember that we once
lived unfettered in the world.
> Thanks you my friend.
> Greg
>
>
>
> ---------------------------------
> Do you Yahoo!?
>
> ----------------------------------------------------------------------
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Date: Wed, 23 Jul 2003 07:27:44 -0500
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: "Joan E. Snyder" <[log in to unmask]>
Subject: Re: timely reminder
MIME-Version: 1.0
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my dear friend greg: i should have been online last night to answer your
im and to give you a cyber kick in the place where God provided the
proper padding. greg, you know as well as aj and joan samuelson amd
brenda and nancy and many of the other of us who have chosen to live our
parkinson's disease in the public arena, that we are the best and the
most dedicated to our unchosen vocation. i don't know how you could ever
find someone who tells our story so completely and lovingly as toad; or
anyone who can put words together like aj or to cause that spark of
familiariry that brenda or nancy can ignite. while i am proud and
humbled by the work of carol walton, robin elliot , and other of our
pd-less champions, i can think of no one more who is better equipted to
let the world know how we live our day-to-day lives than joan
samuelson. as one who has seen the power and the control of folks like
richard dorflingger first hand and felt the sting of their words, i
understand the power weilded by these folks and i realized that they
will stop at nothing in convincing the world that their side is
politacaly, morally, and ethically the only way. they will do anything
and use any propaganda in supporting their point of view. i don't think
that we drew up the terms of war for this battle but i am also sure,
that we must play by their rules to an extent and exchange tit-for-tat
stories of real, living human beings with kids, jobs and
responsabilities to every time they throw out a statement about how an
unfertilized egg used to help cure the world of pd, als, alzheimers,
etc. is an afront to life. i know that i am over-simplyfing this debate,
but you and many others know of my long and arduous path of six years
before i could even feel knowledgeable about this subject. greg, i
understand how discouraging it gets to have to be the one who is a
public spectacle, but i sincerely believe that if it were not for my
choosing to say to friends and family who wish that i would just
quietly buck up and live my life in the security and the safety of my
house and lift chair and the tv, then my town would not be anywhere
near as pdd-aware as it is now.!! please, greg do not give into these
"hee-bee jeebeies" as i call those moments of self-doubt and fear.
know that there are lots of us who look for you for our courage and
confidence and by the way, NO PRESSURE,GUY! love, j
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Date: Wed, 23 Jul 2003 11:37:07 -0700
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Greg Wasson <[log in to unmask]>
Subject: Re: Timely Reminider
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Joan and all,
I want to thank you for taking the time to respond to my post about the role of the patient as an advocate for their community on issues affecting their disease. I appreciate and agreee with you Joan, that we are the ones who are best equipped to tell about what life is like for us and, by extension, for others with different but equally devastating diseases. As you say, we did not start the stemcell wars nor did we draw up the rules of engagement, which seem to lie for Doerflinger and his ilk somewhere to the other side of outright lies. But that perhaps is the difference between people who feel a periodic need to check in with themselves to make sure their position is solid, and those whose zealotry makes them such "true believers" that they, as you say, would stop at nothing to impose their views on everyone else.
The issue of the legitimacy of patients as advocates was as much self-doubt (I hope - lol) as a question that occured to me on a theoretical level, and I brought I it up with with several fellow PWP. After posting the "timely reminder," I had a chance speak with none other than the George Washington of PD patient advocacy, Joan Samuelson. She had an interesting perspective on the whole question and had obviously thought about it. Summing it up, she said that just as patients use denial in a positive way to endure their disease day to day, to protect themselves emotionally from the full psychological impact of their disability, so the rest of the world shields itself through denial about our plight to avoid being overwhelmed by their own fears and anxieties about diseases like Parkinson's and Alzheimer's and ALS. So we, the patient population, sometimes have to break through the comfort of our protective denial in order to describe and show what this disease is really like and
thereby influence public policy. And that is not propaganda, that is forcing those who make our laws to see fully what it will truly mean when they vote yes or no on public funding for research etc. It is, as she likes to say, the power of our personal story, and each of us was handed that power when we were handed our diagnosis.
And that got me thinking about all of the remarkably conservative members of congress who have come to the side of supporting stem cell research and somatic cell nuclear transfer. Orrin Hatch, Connie Mack, Arlen Specter, Nancy Reagan, Thad Cochran, the late Strom Thurmond, etc. In all those cases you'll find that someone they care about persoasnlly or a close relative, suffers from a chronic illness like diabetes or ALS or Parkinson's. It was only when they were forced by the presence of someone close to them to break through the comfort of their denial about the scope and the tragedy of chronic illness that they took another look at the question of the necessity for funding things like the Parkinson's Research Agenda or the doubling of the NIH budget or support for stem cell research. In a way, people with Parkinson's and other chronic illnesses who choose to come out of their homes and make themselves visible serve as the equivalent of a daughter or mother or spouse or nephew of
lawmakers who do not have close relatives or friends with a chronic illness. Our appearance before their committees, or in public places, serves as a "timely reminder" which can wake them up and force them to confront the true cost, both to those who are ill and to the government which must support an increasingly disabled population, of illnesses such as ours.
So whether it's in the halls of Congress and the State Houses, or simply going to the grocery store, we serve to remind people that chronic illness cannot, and will not, be ignored. Visibility, even at its most basic level like standing at a checkout counter and fumbling for change, is both a necessary and a legitimate mechanism for educating the public as well as those who make our laws, about the true nature of chronic disease.
Thanks to all who put in their two cents on this issue. It is important to check in and get the perspectives of those who share our disease. It keeps things fresh, and forces us to think from different angles.
Thanks again,
Greg
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Date: Wed, 23 Jul 2003 13:12:43 -0700
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From: Greg Wasson <[log in to unmask]>
Subject: Re: Timely Response - erratum
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In my response the line that contains the phrase "was as much in issue of self-doubt (I hope- lol)" SHOULD have read "was not as much an issue of delf-doubt"... Sheesh, Greg, proof -read, proof-read, proof-read.
Thanks again, your typographically impaired pal,
Greg
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Date: Wed, 23 Jul 2003 16:14:19 EDT
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Subject: Re: Timely Reminider
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greg, we could not ask for a more dedicated and articulate advocate than
you...i believe that the travels you and a.j. undertake on behalf of the parkinson
community must be exhausting and perhaps stressful from time to time...but
let there be no doubt, your gifts are so great that you inspire a domino process
well beyond what you may see and hear. just know, you are in the right place
at the right time, for whatever reason and we thank you.
maxine
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Date: Wed, 23 Jul 2003 16:14:59 EDT
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it works either way greg self doubt or not self doubt...
maxine
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Date: Wed, 23 Jul 2003 17:09:00 -0500
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From: George Docken <[log in to unmask]>
Subject: Remember the dancing
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Greg,
I agree wholeheartedly with sharing the truth of Parkinson's with
Congress and anyone else who might be able to help. But "Remember the
Dancing" as a slogan might not evoke the sympathy we're seeking from the
sort of person who would oppose stem cell research - and dancing. -Geo.
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Date: Wed, 23 Jul 2003 20:55:21 EDT
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Remember the dancing strikes a real chord with me. For some strange reason,
when my husband was diagnosed with PD, the thought that someday we might not be
able to dance together hit me and it really bothered me because we loved to
dance together. As his illness has progressed, that's the least of my worries,
but even back then I found it odd that this thought hit me more than anything
else at the time. Of course, I had no clue what we were in for way back then.
Pamme
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Date: Wed, 23 Jul 2003 21:26:12 EDT
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Subject: Re: Remember the dancing
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In a message dated 7/23/03 6:11:37 PM, [log in to unmask] writes:
<< "Remember the
Dancing" as a slogan might not evoke the sympathy we're seeking from the
sort of person who would oppose stem cell research - and dancing. >>
Good point, George! Evoking sympathy from some people is a lost cause, no
matter what the slogan. No matter. We forge on.
Kathleen
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Date: Wed, 23 Jul 2003 21:57:29 -0600
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From: Meadow Creek Ranch / Schaaf Angus <[log in to unmask]>
Subject: Re: muscle contraction robbing sleep.
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Tom,
Leg cramping can usually be taken care of by increasing or starting a
Calcium/ Magnesium supplement and taking Quinine Sulfate to relieve
immediate cramps.
Caution: Quinine Sulfate can not be taken with Eldipryl or Seleguline as
well as it interacts with Statins and possibly other drugs. SO checK with
your pharmacist and your doctor in regards to what else you are taking.
For Sleep: Milk( Ca. source) as well as melatonin may help a whole bunch.
Boring tapes on a headset too.
Hope this info helps you get some sleep but then I didnt know Parky's were
allowed to sleep. Until I started wearing a CPAP at night I never could
sleep well either. Rob
----- Original Message -----
From: "Tom McCreary" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Tuesday, July 22, 2003 10:51 AM
Subject: muscle contraction robbing sleep.
> Its been 4 days now w/o sleep. I am not doing well. AS i begin to fall
asleep the constricting or contracting of primarily my thigh muscles begin.
Occurring every 20+/- secs ad lasting for as many as 5 secs. This will go
on all night for until i take my first dose of Symetryl and Comtan. This
could be controlling the contractions during the day......... The sensation
is identical to that offered by the "tinge" device used by Chiropractors,.
It electronically causes a muscle to contract and then relax to reduce
soreness. Have any of you had a similar problem and what'd u do?
>
> ----------------------------------------------------------------------
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> Thanks Tom
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Date: Wed, 23 Jul 2003 22:21:13 -0600
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From: Meadow Creek Ranch / Schaaf Angus <[log in to unmask]>
Subject: Re: muscle pain/waking up 20 min.
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Paula,
I replied to Tom about his cramping. A liquid Calcium /Mag . solution
really helps with this kind of cramping.
But Pain is a different animal. If it is a burning almost hot sensation and
super sensitive to the touch , it could be the inflamed nerve that goes over
the iliac crest in the pelvis and runs down the leg. This neuritis pain is
excrutiating. I take Gabapentine( Neuronton) to help me live with my pain. I
take 900mg three times a day for the pain. It is a fairly nontoxic , hard to
overdo drug and usually under prescribed. I had to borrow a new PDR to
research it and get the correct level for my body weight. The doc started me
out at 200mg a day and then boosted me up to 2700mg when I showed him the
page in the PDR. My doc and I get along great by the way.
You may need to have the source of your pain checked out in case you have
this "fun" problem.
I hope this info helps and hopefully its just low blood Calcium which should
respond with supplementation. Rob
----- Original Message -----
From: "Paula Shook" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Tuesday, July 22, 2003 9:16 PM
Subject: Re: muscle pain/waking up 20 min.
> Tom,
> This is Paula from PA, 49, dx at age 37. I've had such pain in my
> thighs for the last three days that I dread going to bed. I toss and
turn,
> get 20 min of sleep until the pain wakes me up. When it got to be every
10
> min, I got the Ibuprofen out - took 4 - got 3 hrs sleep. Ibuprofen seems
to
> help me more than any other drug. I'm trying the liquid sinemet tomorrow
> a.m.. Stay tuned/Paula
> ----- Original Message -----
> From: "Tom McCreary" <[log in to unmask]>
> To: <[log in to unmask]>
> Sent: Tuesday, July 22, 2003 12:51 PM
> Subject: muscle contraction robbing sleep.
>
>
> > Its been 4 days now w/o sleep. I am not doing well. AS i begin to fall
> asleep the constricting or contracting of primarily my thigh muscles
begin.
> Occurring every 20+/- secs ad lasting for as many as 5 secs. This will go
> on all night for until i take my first dose of Symetryl and Comtan. This
> could be controlling the contractions during the day......... The
sensation
> is identical to that offered by the "tinge" device used by Chiropractors,.
> It electronically causes a muscle to contract and then relax to reduce
> soreness. Have any of you had a similar problem and what'd u do?
> >
> > ----------------------------------------------------------------------
> > To sign-off Parkinsn send a message to:
> mailto:[log in to unmask]
> > In the body of the message put: signoff parkinsn
> > Thanks Tom
> >
> >
>
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Date: Wed, 23 Jul 2003 23:29:42 -0500
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From: Randy Buss <[log in to unmask]>
Subject: Re: muscle contraction robbing sleep.
In-Reply-To: Meadow Creek Ranch / Schaaf Angus <[log in to unmask]>'s message of
Wed, 23 Jul 2003 21:57:29 -0600
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Hi Rob, what's a CPAP. Thanks. Sue
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Date: Wed, 23 Jul 2003 23:10:37 -0600
Reply-To: Parkinson's Information Exchange Network
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Sorry to be so technical. It is a face mask that is fitted to your nose and
mouth areas to supply oxygen and air under positive pressure while one
sleeps. Also used with severe sleep apnea.
Remember no questions are silly. This probably explains it for others too.
Rob
----- Original Message -----
From: "Randy Buss" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Wednesday, July 23, 2003 10:29 PM
Subject: Re: muscle contraction robbing sleep.
> Hi Rob, what's a CPAP. Thanks. Sue
>
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Date: Thu, 24 Jul 2003 02:47:24 -0700
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From: Murray Charters <[log in to unmask]>
Subject: WASHINGTON: Proposal To Let Consumers Import Prescription Drugs
Draws Fierce Lobbying
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Proposal to let consumers import prescription drugs draws fierce lobbying
By SHARON THEIMER
Associated Press Writer
WASHINGTON (AP) -- Hoping to recruit senior citizens as allies, the drug industry and other opponents of a plan to let
consumers import their prescription drugs are waging a massive campaign to sway Congress against the measure.
The multimillion-dollar effort is designed to convince consumers and lawmakers that the legislation -- aimed at giving
patients access to cheaper alternatives for their medicines -- would be hazardous to their health.
"We are talking to anyone who will listen at the 11th hour, and the message is very clear,'' said Jeff Trewhitt, a
spokesman for the Pharmaceutical Research & Manufacturers of America, PhRMA.
The drug industry fears the legislation, expected to get a House vote Thursday evening, could result in price controls.
It also is telling consumers to listen to the Food and Drug Administration, which has long argued that giving patients
broad access to drugs from abroad could expose them to unsafe drugs.
Trewhitt said he has visited nine congressional districts over the past few months.
He was in Republican Rep. Wayne Gilchrest's Maryland district Wednesday. Trewhitt was talking to a newspaper's
editorial page editor and doing a radio interview "saying we sure wish Congressman Gilchrest was not supporting this
bill because it's bad legislation.''
The measure would let consumers import FDA-approved drugs from 25 industrialized countries, including Canada and
European Union nations. Unlike other proposals on the issue, it wouldn't let the FDA or Department of Health and Human
Services stop importation if they cannot guarantee the safety.
The lead sponsor, Rep. Gil Gutknecht, R-Minn., said opening the market could cut drug costs for U.S. consumers at least
one-third.
"The average American pays the world's highest prices for prescription drugs,'' Gutknecht said. "I'm not saying with
the bill I have that that's the only answer or it's even the best answer. What we are saying is the status quo is
unacceptable.''
The highest-profile part of the effort -- an ad campaign -- has been organized by a senior citizens group partially
funded by drug companies.
The Seniors Coalition has spent millions on radio and newspaper ads, mailings and a phone bank urging people to ask
their member of Congress to vote against the bill.
"This legislation would allow drugs to flood across U.S. borders from all over the world with little or no FDA
monitoring to protect your health and safety,'' the script for the coalition's phone bank says.
The group also has sent an 80-year-old spokeswoman on its staff to some congressional districts to campaign against the
measure at senior citizen centers, spokesman Chris Butler said.
Gutknecht's office was among those receiving calls directed by the group. He said most callers ended up supporting his
bill after talking to his staff.
Gutknecht said he considered himself in a "David versus Goliath'' fight against drug companies and their allies.
Several consumer groups said that while they support Gutknecht's bill and sent letters to members of Congress saying
so, they were focused on lobbying on Medicare prescription drug legislation.
"We don't have the endless resources the pharmaceutical lobby does,'' said Ron Pollack, executive director of Families
USA. "Therefore we've got to choose how we're going to devote our staff time and resources.''
The pharmaceutical industry made more than $20 million in political contributions in the past election, with roughly $8
of every $10 going to Republicans, according to an analysis by the Center for Responsive Politics.
PhRMA itself gave over $3 million and spent more than $14 million lobbying Congress on various issues last year.
It also is part of a coalition, the Partnership for Safe Medicines that includes the U.S. Chamber of Commerce, the
National Association of Manufacturers, the Biotechnology Industry Council, the Kidney Cancer Association, and The
Seniors Coalition.
Others opposing the bill include the National Association of Chain Drug Stores and the American Medical Association.
------
On the Net:
Information about the legislation, H.R. 2427, can be found at http://thomas.loc.gov
H.R. 2427 Pharmaceutical Market Access Act of 2003
AP-ES-07-24-03 0344EDT
SOURCE: The Associated Press / The Charleston Gazette, WV
http://wvgazette.com/section/APNews/News/ap0476n
* * *
Has anything changed from one year ago?? ... murray
* * *
The Lorain Morning Journal, OH
Prescription Drugs
Patents, research keep costs high
MARK HOLTHAUS , Morning Journal Writer
08/06/2002
LORAIN -- Zocor is supposed to be the same the world over. Used for treating high cholesterol, it's the top selling
drug in the world. It's made by Merck & Co., one the world's biggest pharmaceutical companies.
In Canada, 60 tablets of Zocor cost about $55, according to a study released in May, and the average price in France,
Germany, Italy, Japan and Britain is about $70. In Lorain County, the same tablets would go for about $116.
It's no fluke that the same pill made by the same company costs much more in the United States.
Many other prescription drugs on the world's list of top 20 sellers -- including No. 2 Lipitor from Pfizer and No. 3
Prilosec from AstraZeneca -- have spreads between their foreign market prices and U.S. market prices ranging from 80
percent to more than 130 percent.
The question of why drug prices are high in the United States is part of a mounting debate on making prescriptions more
affordable, especially for seniors, but the answers are being spun so hard and in so many directions they are almost
impossible to understand.
Arrayed around the issue are literally hundreds of special interest groups and political forces tugging and pushing
Americans to choose sides on a range of proposals, from giving prescription benefits to seniors and others squeezed by
high prices, to reducing many of the product protections for drug makers, to even letting Americans get their medicines
from cheaper foreign markets.
At the center of all the attention is the U.S. pharmaceutical industry.
Now under attack in the courts, the media and Congress, the drug makers have reason to be defensive, particularly about
their profits.
While the overall profits of Fortune 500 companies declined by 53 percent in 2001, the top 10 U.S. drug makers
increased theirs by 33 percent, making pharmaceuticals the country's most profitable business.
One reason is the ''blockbuster drug'' phenomenon.
Within the industry, any prescription drug that breaks $1 billion in sales becomes a blockbuster, and in 2001 there
were 29 of them, nearly double the number of two years before. According to Fortune, they generated more than $52
billion in retail drug sales last year.
Although the average price per prescription last year jumped 10 percent to $49.84, six times greater than the inflation
rate of 1.6 percent, the 29 blockbuster drugs had an average prescription price of $97.71.
Since they accounted for 34 percent of total U.S. drug sales in 2001, blockbusters are clearly driving prices and
profits.
Pfizer led U.S. pharmaceutical companies with $7.8 billion in profits in 2001, earning 24 cents on each dollar of
sales. It owns the biggest blockbuster drug in the United States, the cholesterol reducer Lipitor, which had sales of
$4.5 billion last year. Pfizer also produced other blockbuster drugs such as anti-depressant Zoloft ($2.1 billion in
sales), blood pressure reducer Norvasc ($1.7 billion) and Neurontin for epilepsy ($1.4 billion).
A few weeks ago, Pfizer Inc. acquired Pharmacia Corp. for $60 billion, vaulting to $48 billion in revenues and adding
the sex-enhancing blockbuster Viagra and Celebrex for arthritis and joint pain.
Merck was the second most profitable U.S. pharmaceutical company, netting $7.3 billion, or 15 cents on the sales
dollar. Its cholesterol reducer Zocor was the second highest selling drug in the country, grossing $2.7 billion. It
manufactured three other blockbusters: arthritis pain reliever Vioxx ($2.0 billion), osteoporosis fighter Fosamax ($1.0
billion) and asthma reliever Singulair ($1.0 billion).
Pfizer derived almost one-third of its revenue and profits from its four blockbusters and it raised prices on them by
an average of 4.9 percent last year, three times the rate of inflation. Merck raised the prices on its four
blockbusters by an average of 6.5 percent last year, or four times the rate of inflation.
One reason for the popularity of blockbuster drugs is that they are among the most heavily advertised. Eleven
blockbusters were among the 25 most advertised drugs in 2000.
The five drugs that were most advertised direct to consumers in 2000 all became blockbusters in 2001: Vioxx, Zocor,
heartburn reliever Prilosec, allergy reliever Claritin and anti-depressant Paxil.
The $160 million Merck spent that year advertising Vioxx was more than PepsiCo spent pitching Pepsi ($125 million) and
Anheuser Busch spent hawking Budweiser ($146 million).
Each of the top seven most heavily advertised drugs topped Nike's $78 million ad budget for its shoes.
While blockbuster drugs have flourished, some analysts say 2002 and 2003 may produce even more as the Federal Drug
Administration finishes testing on 15 drugs with potential to become blockbusters. These drugs, if approved, could
allow patients to treat illnesses like schizophrenia, multiple sclerosis and even prostate, breast and colorectal
cancers.
Blockbuster drugs are lucrative because they are so medically effective and they have little or no competition.
High prices aside, no one is arguing the new stars of biotechnology don't perform spectacularly, whether it's lowering
cholesterol or raising libido. Even when less expensive generic equivalents are available, many physicians prescribe
the brand name blockbusters and most patients prefer them.
Blockbuster drugs are part of the reason why more prescriptions are being written and why prescriptions are being
shifted to higher-priced medicines. Those two factors, along with price hikes averaging 10 percent, are why
expenditures for prescription drugs increased 17 percent last year, making them the fastest-growing component of health
care costs.
The drug makers argue the effectiveness of blockbuster drugs comes at a high cost -- to cover research and development
and a lengthy approval process -- which justifies their high prices.
For a drug to move from the research and development stage to FDA approval takes 10 to 15 years and costs an average of
$800 million, according to the Pharmaceutical Research and Manufacturers of America, or PhRMA, the drug industry's
public relations and lobbying arm.
''That is an extremely heavy investment and we expect that that investment be protected,'' said Jeff Trewhitt, a PhRMA
spokesman.
The upfront investments necessary to develop new drugs that may or may not produce profits seven or eight years down
the road are encouraged by the 20-year patents awarded for many drugs seeking FDA approval. The patents give the drug
makers the right to sell the new medicines exclusively, and protects against copying and marketing of their products by
rival manufacturers.
''For every five drugs that are researched and developed, only one makes it to market,'' said Trewhitt. ''Drug
companies lose millions of dollars in research and development spent on unsuccessful drugs.''
The average 13 years of patent protection usually remaining after drugs win FDA approval guarantees they will have
minimal competition when they get on the market. If a drug becomes a blockbuster, high profits for its maker are
virtually locked in until the patent expires.
When a drug loses patent protection, generic competition moves into its market niche and profits quickly erode.
Patent protection will expire at the end of this year for Claritin, which is made by Schering-Plough Corp. The $3.1
billion the company pulled in last year will drop by 50 to 75 percent as soon as it happens, according to the Federal
Trade Commission.
By 2006, almost 200 patents covering $36 billion in U.S. pharmaceutical sales will expire.
The whole scenario of drug companies recouping long-ago upfront costs by protecting high profits on pills that today
cost just cents to make is being vigorously defended by a pharmaceutical industry which is under fierce attack on all
sides.
Consumer groups are challenging the industry's claims of high research and development costs, in part to reduce the
drug makers' credibility and soften them up for assaults on their vital patent protections.
Public Citizen, a leader in the attack on the drug makers' positions, says the $800 million average claimed by the
industry needed to get a drug to market significantly overstates real research and development costs, which are likely
to be as much as 75 percent lower.
Public Citizen notes that many drugs brought to market receive financial support from the government at some stage in
their discovery and development, and the companies are wrong to factor that into the average.
A number of government studies agree that taxpayers have been the drug industry's silent partner. Many innovative drugs
would not have been discovered or would have taken much longer to discover without research contributions from
government labs and noncommercial institutions, say the studies.
Nearly 44 percent of all drug research in the United States is funded by American taxpayers through funding of the
National Institutes of Health. President Bush proposed increasing the NIH's 2002 budget to $23.4 billion, not so far
off the $30 billion which PhRMA says its member companies spent the year before on research and development.
Public Citizen calculates that after eliminating what taxpayers contribute, and adjusting for accounting and tax
considerations, the average actual outlay by a company for the research and development of a new drug is only about
$240 million.
As the U.S. Senate started debate on prescription costs a month ago, a nonprofit healthcare advocacy group repeated its
charge that top U.S. drug companies were spending twice as much on advertising, marketing and administration as they do
on research and development.
Families USA said its analysis rebutted drug company arguments that lowering drug prices and promoting the use of
cheaper, generic drugs would cut into their ability to develop new medicines.
The widely-reported findings use numbers from the annual reports of nine leading drug companies which show, for
instance, that in 2001 Merck spent $6.22 billion on marketing, advertising and administration, but only $2.46 billion
on research and development. Pfizer spent 35 percent of its $32.2 billion in revenue on marketing, advertising and
administration and 15 percent on research and development.
PhRMA has responded by saying much of the marketing and advertising expenses represents the $10 billion in free samples
given each to doctors which are passed along to patients, many of them seniors.
Meanwhile, the actual attack on the drug industry's patent protections is taking place in the courts and Congress.
Generics now account for 46 percent of prescriptions written in the United States, in part because of the Hatch-Waxman
Act that was passed in 1984 to clarify drug patents and allow companies to develop and market generic forms of drugs
once patents expire. However, the drug industry has been using several loopholes to slow down and keep generics off the
market.
The main piece of legislation recently passed by the Senate is a measure aimed at amending the Hatch-Waxman Act to
close the loopholes and speed generic drugs to the market. Democrats had hoped to attach a number of amendments to the
generic drug measure, including a Medicare drug benefit costing as much as $500 billion over 10 years and a plan to re-
import less expensive brand name drugs from other countries.
Republicans in the House have already passed a much smaller Medicare prescription proposal, but it doesn't address
generic drugs.
''Every year the patent goes on, the public is getting ripped off,'' said U.S. Rep. Sherrod Brown, D-Lorain. ''The ways
they have fought to get patents extended is amazing. These guys have invented new meaning for the word greed.''
''We are the innovators and we fund the millions of dollars of research that goes into making these drugs that save
lives,'' counters Trewhitt. ''The patent protection we have, is earned.''
On the legal front, there has been a surge of antitrust and price-fixing lawsuits against drug companies.
Ohio was one of 29 states in a successful lawsuit charging that Bristol-Myers illegally delayed generic competition to
its cancer drug Taxol by manipulating patent laws to keep generic versions off the market.
Another lawsuit accuses Astra-Zeneca and Barr Laboratories of getting together to block a generic version of the cancer
drug Tamoxifen.
Several other drug makers have recently settled with the Federal Trade Commission over allegations they listed
questionable patents to block generics from the market or made payments to makers of generic drugs to delay them. More
investigations are under way.
Ohio Attorney General Betty Montgomery is chairing a 35-state drug-price task force that hopes to stop drug companies
from inflating prices.
Perhaps most worrisome to the drug companies is that class-action law firms, including some that were prominent in the
1998 tobacco settlement with the states, are courting state attorneys general and public interest groups as clients.
Whether prescription prices in the United States are unfairly high is in the eye of the beholder, and depends on the
country and the situation.
Several studies have concluded that Americans without some kind of drug-cost coverage or benefits probably pay more for
their medicines than anyone else in the world. That would include the 60 million people, or about one in four, who have
no insurance coverage for prescription drugs and the third of the nation's elderly who can't pay for the prescription
medications they require.
However, because of the unique U.S. free-market healthcare system, and although they pay more, Americans have unlimited
access to the widest selection of drugs and to the newest ones. Those with relatively liberal drug-cost benefits see it
as an ideal situation. Due to price controls and market restrictions, people in many other countries have more limited
choices or none.
Citizens of a country like Italy where the government purchases all medications and distributes them within a national
medical system pay next to nothing, if In Canada, government-sponsored drug plans restrict or exclude the newest and
most costly treatments. For example, to hold down its costs, the Ontario provincial government listed only 25 of 99
drugs approved by Canada's federal government in 1998 and 1999. As a result, critics say, seniors in the province were
denied new and better medicines for osteoporosis, Alzheimer's and Parkinson's disease.
Like Italy, France directly controls its drug prices. Other countries, such as Germany, the Netherlands and Japan, do
it indirectly through social insurance plans. Britain does it through limits on profits.
Examples of how price controls can restrict access to prescription drugs are beginning to be seen in the United States.
Managed care organizations routinely limit access to drugs not on their approved lists. At Veterans Administration
clinics, if a physician is asked to prescribe an unlisted drug the cost is not covered.
Several states, including Ohio, are trying to implement purchasing pools or preferred drug lists for their Medicaid
programs which lower costs by extracting discounts from drug makers but then limit the availability of drugs not on the
list or included in the pool.
The Democrat version of a Medicare prescription benefit made distinctions between ''preferred'' and ''non-preferred''
drugs, which many worry are the seeds of future price controls and drug steering.
Much evidence has been presented that U.S. drug prices are so high because American consumers are subsidizing the costs
of drugs in other countries where governments regulate them in different ways.
Other studies counter that although some ''cost shifting'' might take place, most of the differences in prescription
prices are explained by flawed studies failing to account for different living standards and per capita spending,
consumption patterns, currency exchanges, a much wider use of generics in the United States than elsewhere, product
liability, altered drugs, black market medicines and many other variables.
There seems to be more agreement that the United States subsidizes drug research and development for the price-
controlled markets in the rest of the world, especially Europe.
The United States is footing the bill for nearly 40 percent of the world's drug research and development. Of more than
150 major new global drugs developed recently, nearly three quarters came from just three countries -- the United
States, Britain and Switzerland -- with the United States providing nearly half.
In most other countries, including the entire European Union, where the government is the sole purchaser of medical
goods or regulates them through national health plans and social insurance funds, there is a tendency to focus on the
direct costs of medications and let other countries cover the cost of research and development.
Called ''free riding,'' the practice is abetted by the fact that the United States has developed the world's most
strict and sophisticated regulatory apparatus for pre-market approval of new drugs and post-market monitoring of drug
safety.
The inclusion of much of the world's cost for research and development makes U.S. drug prices high. If those higher
prices are resisted, as is happening now, and unless there is a global leveling of prices, the U.S. pharmaceutical
industry argues the innovation of better drugs and competition will be eroded.
Reference:
Prescription drug costs -- a bitter pill to swallow
http://tinyurl.com/hwaa
http://www.morningjournal.com/site/news.cfm?newsid=4953349&BRD=1699&PAG=461&dept_id=499256&rfi=6
SOURCE: The Lorain Morning Journal, OH
http://tinyurl.com/hw9x
http://www.zwire.com/site/news.cfm?BRD=1699&dept_id=499256&newsid=4962734&PAG=461&rfi=9
* * *
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Date: Thu, 24 Jul 2003 02:57:36 -0700
Reply-To: [log in to unmask]
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Murray Charters <[log in to unmask]>
Subject: ARIZONA: Seminar Offers Help For Parkinson's Sufferers
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Seminar offers help for Parkinson's sufferers
Michael Ferraresi
The Arizona Republic
Jul. 24, 2003 12:00 AM
SCOTTSDALE - Parkinson's disease patients, their families and their personal caregivers have the opportunity to learn
from experts on the illness Friday during a free seminar in Scottsdale.
Speech clinicians trained in the Lee Silverman Voice Treatment, a therapy developed at Scottsdale Memorial Hospital,
will host a workshop at Scottsdale Chaparral Suites Hotel from 12:30 to 3 p.m. to benefit Parkinson's patients whose
voices and swallowing have been affected by the neurological disease. It affects the part of the brain that is involved
with movement. Most Parkinson's patients suffer from inhibited speech or voice.
LSVT founder Dr. Lorraine Ramig and 12 expert clinicians will work with patients Friday. The seminar is limited to 100
people, but reservations are still available.
The workshop is a two-day event, with the first day focusing on training Arizona clinicians and speech therapists. The
second day will begin with a lecture on the treatment, followed by a hands-on therapy session.
The technique, named after Lee Silverman of Scottsdale whose family owns Chaparral Suites, is more intensive than other
Parkinson's therapies.
Unlike other speech therapy programs for Parkinson's patients that may only involve two or three sessions, the LSVT
program involves about 16 voice therapy sessions in the course of a month.
The techniques give patients practical information about how to speak more loudly and articulate more clearly.
Patients will also learn exercises they can practice at home.
"It's kind of an empowering way of dealing with one aspect of their disorder," Ramig said.
SOURCE: Arizona Republic, AZ
http://www.azcentral.com/arizonarepublic/local/articles/0724neparkinsons24.html
* * *
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Date: Thu, 24 Jul 2003 10:30:24 EDT
Reply-To: Parkinson's Information Exchange Network
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From: Gerry Haines <[log in to unmask]>
Subject: Re: Timely Reminder
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Hi Greg,
Excellent reminder, I feel the personal approach is the key to this
awareness. I have always felt when I speak to support groups that it is what gets
them to the point of their feeling able to do something.
All the publications, e-mails , etc., never hit home like the voice or
picture that stands in front of you.
Didn't forget your questions, this is just the beginning of my answer.
Fondly,
Gerry
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Date: Thu, 24 Jul 2003 12:41:30 -0700
Reply-To: Parkinson's Information Exchange Network
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Sender: Parkinson's Information Exchange Network
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From: Ervin McCarthy <[log in to unmask]>
Subject: Umbilical Cord
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does anyone have any information on umbilical cord storage? My =
granddaughter is going to have a baby and is curious about the storage. =
thank you.
Ervin=20
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Date: Thu, 24 Jul 2003 13:05:44 -0700
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
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From: Les Combs <[log in to unmask]>
Subject: Re: new symptom
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I had a terrible time sleeping until I was prescribed Mirtazapine 20 mg tab
at bedtime.
Les Combs
----- Original Message -----
From: "Tom McCreary" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Sunday, July 20, 2003 10:38 PM
Subject: new symptom
> I cant sleep. After seeing a new nuero out of necesssity my drugs have
been changed. 6 year old regimen of :
> 1 Sinemet 25/100 1xday, 1 Symmetryl 1x/day, 1 Eldepryl 1x/day,
1 sinemet 25/100 CR and Mirapex 3xs/day ...
> modified to:
> 1 sinemt 25/100 with 1 Comptan 3x/day, and 1Mirapex 3 xs/day....
>
> Result = Offs were very bothhersome so I initiated all 3 at smae time
anad got a little betteer performacnne. Next visit was in 3 weeks which
was last Thursday
>
> My offs still were comng too quick and too debilitating. So new Dr
droppped Mirapex and added 1/2 tab more Sinemet 25/100 resulting in good
ons but offs were still unacceptable appeariing at 3 hours into 4 four
dosage schedule So I dropped the 1/2 dose of Sinemet and added back in 1
Sinemet CR 25/100 with hopes of reducing off time by increasaing on. This
has given a more workable on tine frame.
>
> Here is the problem. The second night or last Friday i didnt sleep. All
was fine until bed time. WHen i became still a guick tensiioning of an
isolated muscle group producing something of a tiny explosive jerk reactiion
began occurring and very persistent. When i got up it wouldnt occurr but
when relaxed it would reappear. Sometimes in new areas. Saturuday was fine
Staurdady night Hell night 2. Sundday was fair and tonight sassme thing is
occuring.
>
> Have I decended to anoother level of PD. What might tomorrow bring? More
worrysome is tomorrow night?. The new DR isnt available on weekends but her
answeirng machine is on duty.
> I will be calling with my concerns.
> If you have made it this far i would like some relative coments if you
have any.
>
>
> ----------------------------------------------------------------------
> To sign-off Parkinsn send a message to:
mailto:[log in to unmask]
> In the body of the message put: signoff parkinsn
> Thanks Tom
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Date: Thu, 24 Jul 2003 16:54:40 EDT
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
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From: Rayilyn Brown <[log in to unmask]>
Subject: DBS Update
Comments: cc: [log in to unmask], [log in to unmask],
[log in to unmask], [log in to unmask], [log in to unmask],
[log in to unmask], [log in to unmask], [log in to unmask],
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Dear friends and interested parties:
I had my 1st programming at Scripps yesterday.
The tremors in my left hand and arm I"ve had for the past 7 and a half yrs
are GONE!!! My head has stopped shaking according to Marissa, my P-T CG.
My left foot (ankle being broken by dystonia) has straightened out. am still
trying to walk on my toes,, ut leg muscle is probably in a knot due to being
slowly pulled up all these yrs.
I can get u[[ more easily from a sitting position and am walking with/without
walker, trying not to use electric wheelchair.
Slept 8 hrs last night.
Still very fatigued.
Will have left brain electrodes redone for shaking right side soon.
I have hope.
Rayilyn, Frankenstein's sister
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Date: Thu, 24 Jul 2003 14:04:47 -0700
Reply-To: "Carole K. Menser" <[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: "Carole K. Menser" <[log in to unmask]>
Subject: Re: DBS Update
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And you bring a lot of hope to everyone else. Wonderful news!
Carole
----- Original Message -----
From: "Rayilyn Brown" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Thursday, July 24, 2003 1:54 PM
Subject: DBS Update
> Dear friends and interested parties:
>
> I had my 1st programming at Scripps yesterday.
>
> The tremors in my left hand and arm I"ve had for the past 7 and a half yrs
> are GONE!!! My head has stopped shaking according to Marissa, my P-T CG.
>
> My left foot (ankle being broken by dystonia) has straightened out. am
still
> trying to walk on my toes,, ut leg muscle is probably in a knot due to
being
> slowly pulled up all these yrs.
>
> I can get u[[ more easily from a sitting position and am walking
with/without
> walker, trying not to use electric wheelchair.
>
> Slept 8 hrs last night.
>
> Still very fatigued.
>
> Will have left brain electrodes redone for shaking right side soon.
>
> I have hope.
>
> Rayilyn, Frankenstein's sister
>
>
>
> ----------------------------------------------------------------------
> To sign-off Parkinsn send a message to:
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>
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Date: Thu, 24 Jul 2003 17:06:45 EDT
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Rayilyn Brown <[log in to unmask]>
Subject: DBS/dystonia
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yep, it helped my dystonia, tremor, rigidity - it is also used for stroke
victims, which I am looking into for my mom, who has bad spasticity due to her
stroke.
I got through the awake brain surgery very well, but Dr. Waltz was not
satisfied with position of left brain electrode placement, so he only did implant
for right brain/left side. He said it was like flying an airplane - you have
to go by the instruments which said the placement was correct, but X-ray said
no. They used to do one side at a time anyway.
I don't think I will ever be NORMAL (was I ever), but this is amazing. Feel I
must have this redone - booklet said repositioning was not uncommon.
Bionic Ray
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Date: Thu, 24 Jul 2003 17:12:09 EDT
Reply-To: Parkinson's Information Exchange Network
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Sender: Parkinson's Information Exchange Network
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From: Ellen Luhman <[log in to unmask]>
Subject: Re: DBS Update
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Glad to hear that things are going well. You will continue to be in our
prayers.
Ellen
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Date: Thu, 24 Jul 2003 17:13:48 EDT
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
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From: Rayilyn Brown <[log in to unmask]>
Subject: Re: thanks, Greg
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You tell em, Greg. We're with you, Rayilyn Brown
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Date: Thu, 24 Jul 2003 17:17:23 -0700
Reply-To: Parkinson's Information Exchange Network
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Sender: Parkinson's Information Exchange Network
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From: Ervin McCarthy <[log in to unmask]>
Subject: Re: DBS/dystonia
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Bravo Ray. Go girl
Ervin McCarthy
----- Original Message -----
From: "Rayilyn Brown" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Thursday, July 24, 2003 2:06 PM
Subject: DBS/dystonia
> yep, it helped my dystonia, tremor, rigidity - it is also used for stroke
> victims, which I am looking into for my mom, who has bad spasticity due to
her
> stroke.
>
> I got through the awake brain surgery very well, but Dr. Waltz was not
> satisfied with position of left brain electrode placement, so he only did
implant
> for right brain/left side. He said it was like flying an airplane - you
have
> to go by the instruments which said the placement was correct, but X-ray
said
> no. They used to do one side at a time anyway.
>
> I don't think I will ever be NORMAL (was I ever), but this is amazing.
Feel I
> must have this redone - booklet said repositioning was not uncommon.
>
> Bionic Ray
>
> ----------------------------------------------------------------------
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Date: Thu, 24 Jul 2003 17:40:03 EDT
Reply-To: Parkinson's Information Exchange Network
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Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Rayilyn Brown <[log in to unmask]>
Subject: Re: DBS Update/thanksEllen
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thanks, Ellen, I need all luck and prayers I can get. Ray
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Date: Thu, 24 Jul 2003 16:50:33 -0500
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
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From: Texas Parkinsonism Advocate
<[log in to unmask]>
Subject: Re: Umbilical Cord
Comments: To: [log in to unmask]
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If I may add a thought please.... Why not donate the umbilical cord blood to
research? No expense to the donor and a possibility of a cure for all of us.
I can help you arrange the donation.
Thank you for your consideration.
Terry Bowers
----- Original Message -----
From: "Ervin McCarthy" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Thursday, July 24, 2003 2:41 PM
Subject: Umbilical Cord
> does anyone have any information on umbilical cord storage? My
granddaughter is going to have a baby and is curious about the storage.
thank you.
> Ervin
>
> ----------------------------------------------------------------------
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>
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Date: Thu, 24 Jul 2003 17:45:43 -0400
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
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From: KF Etzold <[log in to unmask]>
Subject: Re: DBS/dystonia
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Bionic Ray ...... Rayilyn, Frankenstein's sister.
Ray:
You sound great. Keep up the good work. Set an example for the PD'ers, and
the CG's.
K. F. CG Carline
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Date: Thu, 24 Jul 2003 17:06:07 -0500
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
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From: George Docken <[log in to unmask]>
Subject: Re: new symptom
MIME-Version: 1.0
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I had trouble sleeping when I was taking Eldepryl. After I quit taking it, I found it easier to go to sleep. Someone
mentioned, on Sparkle or PIEN a while ago, that they took their Eldepryl earlier in the day to minimize sleep deprivation. George Docken
Les Combs <[log in to unmask]>
Sent by: Parkinson's Information Exchange Network
<[log in to unmask]>
07/24/2003 03:05 PM
Please respond to Parkinson's Information Exchange Network
To: [log in to unmask]
cc:
Subject: Re: new symptom
I had a terrible time sleeping until I was prescribed Mirtazapine 20 mg
tab
at bedtime.
Les Combs
----- Original Message -----
From: "Tom McCreary" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Sunday, July 20, 2003 10:38 PM
Subject: new symptom
> I cant sleep. After seeing a new nuero out of necesssity my drugs
have
been changed. 6 year old regimen of :
> 1 Sinemet 25/100 1xday, 1 Symmetryl 1x/day, 1 Eldepryl 1x/day,
1 sinemet 25/100 CR and Mirapex 3xs/day ...
> modified to:
> 1 sinemt 25/100 with 1 Comptan 3x/day, and 1Mirapex 3 xs/day....
>
> Result = Offs were very bothhersome so I initiated all 3 at smae
time
anad got a little betteer performacnne. Next visit was in 3 weeks which
was last Thursday
>
> My offs still were comng too quick and too debilitating. So new Dr
droppped Mirapex and added 1/2 tab more Sinemet 25/100 resulting in good
ons but offs were still unacceptable appeariing at 3 hours into 4 four
dosage schedule So I dropped the 1/2 dose of Sinemet and added back in 1
Sinemet CR 25/100 with hopes of reducing off time by increasaing on. This
has given a more workable on tine frame.
>
> Here is the problem. The second night or last Friday i didnt sleep. All
was fine until bed time. WHen i became still a guick tensiioning of an
isolated muscle group producing something of a tiny explosive jerk
reactiion
began occurring and very persistent. When i got up it wouldnt occurr but
when relaxed it would reappear. Sometimes in new areas. Saturuday was
fine
Staurdady night Hell night 2. Sundday was fair and tonight sassme thing
is
occuring.
>
> Have I decended to anoother level of PD. What might tomorrow bring?
More
worrysome is tomorrow night?. The new DR isnt available on weekends but
her
answeirng machine is on duty.
> I will be calling with my concerns.
> If you have made it this far i would like some relative coments if you
have any.
>
>
> ----------------------------------------------------------------------
> To sign-off Parkinsn send a message to:
mailto:[log in to unmask]
> In the body of the message put: signoff parkinsn
> Thanks Tom
----------------------------------------------------------------------
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Date: Thu, 24 Jul 2003 18:12:51 EDT
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
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From: Maxine Krugman <[log in to unmask]>
Subject: Re: DBS Update
MIME-Version: 1.0
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ray, this is a wonderful day. your news is the best...and you certainly
deserve the relief you are getting...and the sleep...things will only get better
from here...from my heart, congratulations
maxine
----------------------------------------------------------------------
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Date: Thu, 24 Jul 2003 18:14:13 EDT
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Maxine Krugman <[log in to unmask]>
Subject: Re: DBS/dystonia
MIME-Version: 1.0
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you actually sound happy ray...it is unbelievably wonderful to hear that you
are so hopeful....
maxine
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Date: Thu, 24 Jul 2003 18:45:29 EDT
Reply-To: Parkinson's Information Exchange Network
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From: Maxine Krugman <[log in to unmask]>
Subject: Re: new symptom
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it has always been my understanding that eldepryl should not be taken after 2
pm for the sleep associated reasons. my late husband took his two, one with
am pills and one with noon pills and never had problems sleeping at night.
maxine
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Date: Thu, 24 Jul 2003 18:16:42 -0500
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From: Tom McCreary <[log in to unmask]>
Subject: Do PWP require an antidepressant
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I am appalled at the ease a Dr will scratch out script for an =
anti-depressant. Is it imperative we all be on them and if so isn't =
there a guide Dr's should consult before assigning us to one or another =
of these little pills? I have been reading some info on different ones =
and most seem strapped with many potential undesirable side effects. =20
Paxil recently played out for me and i have beenonEffexor for a month =
and am weepy all of the time. I feel a need to change so I called my =
PCP and without hesitation he prescribed Lexapro. The side effects are =
not inviting in the least? I am not sure i want to begin this next =
attempt at taking on a new drug as my new neuro has recently made =
several modifications to my old regimen.
Has anyone found a natural therapy they have had success with?=20
If so please share...
----------------------------------------------------------------------
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Thanks. Tom
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Date: Thu, 24 Jul 2003 19:25:33 -0400
Reply-To: Parkinson's Information Exchange Network
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From: Bob Allison <[log in to unmask]>
Subject: Re: DBS Update
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Rayilyn so good to hear from you, especially that things are going well.
Bob
----- Original Message -----
From: "Rayilyn Brown" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Thursday, July 24, 2003 4:54 PM
Subject: DBS Update
> Dear friends and interested parties:
>
> I had my 1st programming at Scripps yesterday.
>
> The tremors in my left hand and arm I"ve had for the past 7 and a half yrs
> are GONE!!! My head has stopped shaking according to Marissa, my P-T CG.
>
> My left foot (ankle being broken by dystonia) has straightened out. am
still
> trying to walk on my toes,, ut leg muscle is probably in a knot due to
being
> slowly pulled up all these yrs.
>
> I can get u[[ more easily from a sitting position and am walking
with/without
> walker, trying not to use electric wheelchair.
>
> Slept 8 hrs last night.
>
> Still very fatigued.
>
> Will have left brain electrodes redone for shaking right side soon.
>
> I have hope.
>
> Rayilyn, Frankenstein's sister
>
>
>
> ----------------------------------------------------------------------
> To sign-off Parkinsn send a message to:
mailto:[log in to unmask]
> In the body of the message put: signoff parkinsn
>
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Date: Thu, 24 Jul 2003 20:12:16 -0400
Reply-To: Parkinson's Information Exchange Network
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Sender: Parkinson's Information Exchange Network
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From: Bob Allison <[log in to unmask]>
Subject: Re: Do PWP require an antidepressant
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Tom re antidepressants: i have tried quite a few and unfortunetely cant
find one that is right for me. they either overtranquilize or over
energize. yes, docs are quick to prescribe--all they know is that some work
for some and others work for others. they are just trying to find one that
works for you. Should they be more homeopathic--sure but they didnt leaarn
that in school. As a chronically ill person, i ve learned that most doctors
are hammers, therefore everything looks a nail to them! Try differnt docs
or pitch in with your own suggestions--the goods one will listen. FWIW--i
am finding that a benzodiazapine works pretty well for me; it doesnt make me
happy, but it gives me enough calm and energy to go forward most of the
time. So i think i am a person whos depression may be caused in some or in
whole to my anxiety. I am aware of possible addiction so I dont take it
everyday. Bob
----- Original Message -----
From: "Tom McCreary" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Thursday, July 24, 2003 7:16 PM
Subject: Do PWP require an antidepressant
> I am appalled at the ease a Dr will scratch out script for an
anti-depressant. Is it imperative we all be on them and if so isn't there a
guide Dr's should consult before assigning us to one or another of these
little pills? I have been reading some info on different ones and most seem
strapped with many potential undesirable side effects.
> Paxil recently played out for me and i have beenonEffexor for a month and
am weepy all of the time. I feel a need to change so I called my PCP and
without hesitation he prescribed Lexapro. The side effects are not inviting
in the least? I am not sure i want to begin this next attempt at taking on a
new drug as my new neuro has recently made several modifications to my old
regimen.
> Has anyone found a natural therapy they have had success with?
> If so please share...
>
> ----------------------------------------------------------------------
> To sign-off Parkinsn send a message to:
mailto:[log in to unmask]
> In the body of the message put: signoff parkinsn
> Thanks. Tom
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Date: Thu, 24 Jul 2003 21:06:35 -0400
Reply-To: John Hartranft <[log in to unmask]>
Sender: Parkinson's Information Exchange Network
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From: John Hartranft <[log in to unmask]>
Subject: Re: muscle contraction robbing sleep.
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I missed the start of this thread, but here's my short story:
With three people (of seven) in my family with PD, and fatigue being a heavy
part of my life, I went in for a sleep test. Instead of finding apnea, for
which I exhibited lots of symptoms, they found I had restless leg, but only
when asleep. Imagine how thrilled I was when the doc suggested Sinemet.
I'm on clonazepam, to keep my brain from being roused out of stage 3 & 4
sleep (the restfull, REM kind), so I get better rest. Cautiously, it seems
to be helping. I don't help any by getting up at 4am to beat the rush hour
traffic. But the test numbers said I was spendin .4% of sleep time in 3 and
4, vs. 18% for a 'normal' sleep cycle. Makes a difference.
Good luck to you.
John in Flint
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Date: Fri, 25 Jul 2003 07:14:26 +0200
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From: "M.Schild" <[log in to unmask]>
Subject: Re: DBS Update
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Hi Ray,
You'll end up like a hedgehog! Glad it works
Maryse
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Date: Fri, 25 Jul 2003 02:14:29 EDT
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From: Dolores Buente <[log in to unmask]>
Subject: Inflammation
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Just read over Marjoni's post about the research into antiinflammatories
being thought to be effective in controlling Parkinson's. This lead me to do some
research into this area. Having had whooping cough when I was an infant (7
weeks old) I looked into the effects this bacteria has on the central nervous
system and inflammation of the brain. It appears that in a small percentage of
people it can cause encephalitis and/or retardation. In other words, it is
an inflammation of the brain that produces damage to neurons similar to
Parkinson's.
I'm interested in hearing from others who have had this sort of infection at
an early age and to see if there is a connection. Also have found info on how
the vaccine can cause problems too....hence, the many cases of young onset
PD. Just a thought to ponder.
Dee
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Date: Fri, 25 Jul 2003 09:04:11 -0400
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From: ewands <[log in to unmask]>
Subject: Hope someone can help
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Greetings to you. I have been a member for some time. Now my husband has
PD far more advanced than mine. This was supposedly because we were in a
serious accident last Aug. 24 in Elkins WV. My problem is that we and our
attorney are putting a case together and desperately need a police report of
the accident. We had 29,000+ damage to our SUV and not one of the 4 airbags
deployed, We rolled over 3 times down a mountain road just outside Elkins.
My attorney contacted the highway patrol there and was told they do not have
one. The purpose of this is to see if any of you know of any attorneys in
WV who may be able to help us. My atty said she could make calls but it
would be too costly.
The car was a Lexus RX300 and all of the damage was to the front and sides
of the car.
I do hope someone out there can help. Thank God we had our seat belts on.
Thanking you in advance
Elizabeth Wands
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Date: Fri, 25 Jul 2003 11:37:11 EDT
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From: Dolores Buente <[log in to unmask]>
Subject: Re: DBS Update
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Dear Rayilyn,
Thank you for your update on your DBS. Things sound very good and that is
what we've all been hoping for. I know this hasn't been a walk in the park for
you but your humor and tenacity will see you through. If our thoughts and
prayers are of help, you have them too.
Keep the updates coming...we're pulling for the Ray team.
Bless you and stay strong.
Dee
----------------------------------------------------------------------
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Date: Fri, 25 Jul 2003 08:38:48 -0700
Reply-To: Parkinson's Information Exchange Network
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Sender: Parkinson's Information Exchange Network
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From: Carole Hercun <[log in to unmask]>
Subject: Re: DBS Update
In-Reply-To: <[log in to unmask]>
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Bwavo! You go, girl!
Carole
Rayilyn Brown <[log in to unmask]> wrote:
Dear friends and interested parties:
I had my 1st programming at Scripps yesterday.
The tremors in my left hand and arm I"ve had for the past 7 and a half yrs
are GONE!!! My head has stopped shaking according to Marissa, my P-T CG.
My left foot (ankle being broken by dystonia) has straightened out. am still
trying to walk on my toes,, ut leg muscle is probably in a knot due to being
slowly pulled up all these yrs.
I can get u[[ more easily from a sitting position and am walking with/without
walker, trying not to use electric wheelchair.
Slept 8 hrs last night.
Still very fatigued.
Will have left brain electrodes redone for shaking right side soon.
I have hope.
Rayilyn, Frankenstein's sister
----------------------------------------------------------------------
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Date: Fri, 25 Jul 2003 14:50:36 EDT
Reply-To: Parkinson's Information Exchange Network
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Sender: Parkinson's Information Exchange Network
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From: Winnie Carolgray <[log in to unmask]>
Subject: Re: thanks, Greg
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So glad to hear that your DBS well. I am having DBS
IN September.
WINNIE CAROL GRAY
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Date: Fri, 25 Jul 2003 15:03:07 EDT
Reply-To: Parkinson's Information Exchange Network
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From: Rayilyn Brown <[log in to unmask]>
Subject: Re: DBS Update
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Maryse
I may keep my head shaved, have had 2 compliments on it - only kidding, Ray
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Date: Fri, 25 Jul 2003 13:56:23 -0400
Reply-To: Parkinson's Information Exchange Network
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From: KF Etzold <[log in to unmask]>
Subject: Apokinon
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Maryse:
You may have seen the announcement that the FDA here in the US is starting
the approval process for Apokinon. My question is what are the principal
symptoms that Apokinon addresses. Is it tremor, rigidity, freezing or what
else, all of the above? Do you know?
Thanks.
K. F. Etzold cg Carline
----------------------------------------------------------------------
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Date: Fri, 25 Jul 2003 19:19:05 +0200
Reply-To: Parkinson's Information Exchange Network
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From: "M.Schild" <[log in to unmask]>
Subject: CARE list
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ESPECIALLY FOR NEW MEMBERS OF THE PIEN LIST, here's information about
CARE !
CARE (Caregivers Are Really Essential) is a sublist of the main PD list. It
is especially for caregivers (CGs) of Parkinsonians (PWPs). The need for
such a list was evident from feelings expressed on the PD list that there
are times when CGs need to be able to "let off steam" in a place where they
will not upset their PWPs. Some of us have CareGiver support groups, where
we can safely express feelings, get practical support, and share
experiences but some do not. The CARE list , as a "virtual support group",
serves this need, but DOES NOT shut off the participation of CGs on the
main list.
CGs who want to join CARE, where there is much less traffic than on the
main list, may do so as follows:
Send in body of post (not on subject line) to:
[log in to unmask]
this command: subscribe CARE your full name
no signature, please.
You will be added to the list, and will receive further instructions.
If you have problems, for CARE ask Camilla Flintermann
<[log in to unmask]>
or Jeff Jones (co-owner) <[log in to unmask]>
********************
Camilla Flintermann, former CG for Peter 83/70/55
Oxford, Ohio
<[log in to unmask]>
on the web at http://www.geocities.com/camillahf/index.html
"Ask me about the CARE list for Caregivers of
Parkinsonians ! "
And visit the CARE webring at http://www.pdcaregiver.org
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Date: Fri, 25 Jul 2003 16:28:50 -0400
Reply-To: Parkinson's Information Exchange Network
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Sender: Parkinson's Information Exchange Network
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From: Greg Lonnman <[log in to unmask]>
Subject: Re: thanks, Greg
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wrong Greg Winnie...................
----- Original Message -----
From: "Winnie Carolgray" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Friday, July 25, 2003 2:50 PM
Subject: Re: thanks, Greg
> So glad to hear that your DBS well. I am having DBS
> IN September.
> WINNIE CAROL GRAY
>
> ----------------------------------------------------------------------
> To sign-off Parkinsn send a message to:
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Date: Fri, 25 Jul 2003 16:40:13 -0400
Reply-To: Parkinson's Information Exchange Network
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Sender: Parkinson's Information Exchange Network
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From: Greg Lonnman <[log in to unmask]>
Subject: Hi all, I'm new
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Just found your group a couple of days ago. My Mom is 79 and has PD for
about 5 years. My question is, is anyone taking Tasmar and does it work. I
would appreciate anyone's experience with this inhibitor that blocks the
enzymes from killing off most of the sinemet from getting through to the
brain.
Thanks,
Greg
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Date: Fri, 25 Jul 2003 23:05:18 +0200
Reply-To: Parkinson's Information Exchange Network
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From: "M.Schild" <[log in to unmask]>
Subject: Re: Apokinon
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Hi KF,
Apokinon=apomorphine, as far as I know is used mainly against the on-off
symptoms. It is used subcutaneously ( injection). Since its action is of
short duration, some sort of pump can be used for day-long ( or
hour-long ) diffusion.
Maryse cg John 74,14
>Maryse:
>
>You may have seen the announcement that the FDA here in the US is starting
>the approval process for Apokinon. My question is what are the principal
>symptoms that Apokinon addresses. Is it tremor, rigidity, freezing or what
>else, all of the above? Do you know?
>Thanks.
>
>K. F. Etzold cg Carline
>
>
>
>
>
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Date: Fri, 25 Jul 2003 14:02:23 -0700
Reply-To: [log in to unmask]
Sender: Parkinson's Information Exchange Network
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From: Murray Charters <[log in to unmask]>
Subject: ARTICLE: New Drug To Treat Parkinson's Disease
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KXAN-TV, TX
07/25/03 - 8:23 am
New Drug To Treat Parkinson's Disease
A small drug company in southwest Virginia has come up with a breakthrough in the treatment of Parkinson's Disease.
"It actually creates an environment where cells can line and don't die anymore and also creates an environment where
they can actually proliferate against and possibly cure the disease," Dr. Keith Latham, PH.D. with Innovative
Technologies said.
The new drug, Parkinol, completely blocks the tremors caused by Parkison's.
That behavior is displayed in a lab rat with Parkison's who acts completely normal, compared to one that runs in
circles constantly.
Human testing of the drug will cost about $5 million, so reseachers are now trying to market Parkinol to larger
companies.
For more information about Innovative Technologies or Parkinol, log onto
http://www.parkinsons-research.com/whatis.htm
SOURCE: KXAN-TV, TX
http://www.kxan.com/Global/story.asp?S=1375337
* * *
The http://www.parkinsons-research.com/whatis.htm doesn't appear to work at this time but GOOGLE'S cache reveals...
Introducing Parkinol
from Innovative Technologies
Business Opportunities
Parkinol is a new drug entity, invented and developed at Innovative Technologies. Currently, the active drug has been
synthesized (gm quantities), a patent application has been submitted and formulation for oral use has been initiated.
ITL is interested in partnering with companies having resources commensurate with further development and marketing of
Parkinol. Companies interested in a confidential disclosure of more details about Parkinol should contact Dr. Keith
Latham at [log in to unmask]
http://www.parkinsons-research.com/whatis.htm
* * *
Anyone know anything about Dr. Keith Latham and Parkinol?
cheers .... murray
* * *
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Date: Fri, 25 Jul 2003 22:45:51 +0100
Reply-To: Marco De Michiel <[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Marco De Michiel <[log in to unmask]>
Subject: Re: Apokinon
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It's an Agonist, unfortunately most of the Google.com search results are in
French, and the online translations are not very good.
Regards,
Marco
Synopsis:
Class of Drug: Antiparkinsonian
Background: Apokinon is a trademark of Laboratoire Aguettant SA.
Location: France
Last Updated: 08-07-02
----- Original Message -----
From: "KF Etzold" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Friday, July 25, 2003 6:56 PM
Subject: Apokinon
> Maryse:
>
> You may have seen the announcement that the FDA here in the US is starting
> the approval process for Apokinon. My question is what are the principal
> symptoms that Apokinon addresses. Is it tremor, rigidity, freezing or what
> else, all of the above? Do you know?
> Thanks.
>
> K. F. Etzold cg Carline
>
> ----------------------------------------------------------------------
> To sign-off Parkinsn send a message to:
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> In the body of the message put: signoff parkinsn
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Date: Fri, 25 Jul 2003 15:01:54 -0700
Reply-To: supermario <[log in to unmask]>
Sender: Parkinson's Information Exchange Network
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From: supermario <[log in to unmask]>
Subject: APOKINON
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I believe this may be the french version of APOMORPHINE.
In the text, they usually go together :
Apomorfina (Apokinon=AE)=20
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Il existe une forme injectable, l'apomorphine (Apokinon)
=========================================================================
Date: Fri, 25 Jul 2003 16:44:34 -0600
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
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From: Tom Berdine <[log in to unmask]>
Subject: TEAM YOPA 2004: UNITY WALK
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Please visit HYPERLINK
"http://www.unitywalk.org/newwalk.html"http://www.unitywalk.org/newwalk.
html and join TEAM YOPA at the 2004 Unity Walk in New York.
Tom Berdine
President; Young Onset Parkinson's Association(YOPA)
www.yopa.org
Diagnosed in 2000 @ 33
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Date: Fri, 25 Jul 2003 16:06:26 -0700
Reply-To: Parkinson's Information Exchange Network
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Sender: Parkinson's Information Exchange Network
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From: "Robert A. Fink, M. D." <[log in to unmask]>
Organization: Robert A. Fink, M. D., FACS, P. C.
Subject: Vacation
In-Reply-To: <[log in to unmask]>
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Dear all,
I am leaving this weekend for a vacation to Alaska (land and a cruise home).
It is time for some relaxation for all of us.
I am going "nomail" today and will sign back on when we return around
August 11.
Best to all,
Bob
**********************************************
Robert A. Fink, M. D., F.A.C.S., P. C.
2500 Milvia Street Suite 222
Berkeley, California 94704-2636
Telephone: 510-849-2555 FAX: 510-849-2557
WWW: http://www.rafink.com/
mailto:[log in to unmask]
"Ex Tristitia Virtus"
*********************************************
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Date: Fri, 25 Jul 2003 16:06:27 -0700
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From: "Robert A. Fink, M. D." <[log in to unmask]>
Organization: Robert A. Fink, M. D., FACS, P. C.
Subject: Re: ARTICLE: New Drug To Treat Parkinson's Disease
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On 25 Jul 2003 at 14:02, Murray Charters wrote:
> KXAN-TV, TX
> 07/25/03 - 8:23 am
> New Drug To Treat Parkinson's Disease
>
> A small drug company in southwest Virginia has come up with a
> breakthrough in the treatment of Parkinson's Disease.
>
> "It actually creates an environment where cells can line and don't die
> anymore and also creates an environment where they can actually
> proliferate against and possibly cure the disease," Dr. Keith Latham,
> PH.D. with Innovative Technologies said.
>
> The new drug, Parkinol, completely blocks the tremors caused by
> Parkison's.
>
> That behavior is displayed in a lab rat with Parkison's who acts
> completely normal, compared to one that runs in circles constantly.
>
> Human testing of the drug will cost about $5 million, so reseachers
> are now trying to market Parkinol to larger companies.
I saw the above posting just as I was going "nomail", so I thought that I
would answer it (I won't see the responses, sorry!).
"Parkinson's disease" in rats is NOT Parkinson's disease. The statements
above sound very much like commercial hype. New drugs don't go into
"marketing" for "human testing" without scientific proof which is published
in peer-reviewed journals.
I would be *very* skeptical of something like this.
Best,
Bob
**********************************************
Robert A. Fink, M. D., F.A.C.S., P. C.
2500 Milvia Street Suite 222
Berkeley, California 94704-2636
Telephone: 510-849-2555 FAX: 510-849-2557
WWW: http://www.rafink.com/
mailto:[log in to unmask]
"Ex Tristitia Virtus"
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Date: Fri, 25 Jul 2003 17:30:52 -0700
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From: Murray Charters <[log in to unmask]>
Subject: EDITORIAL: Research Retarded
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The Boston Globe, MA
A BOSTON GLOBE EDITORIAL
Research retarded
7/25/2003
SEVERAL YEARS from now, when with any luck the first patients with diseases like diabetes or Parkinson's will be
successfully treated with therapeutic cell cloning, the political hurdles impeding this technique will seem as dated as
past debates over in-vitro fertilization or recombinant DNA. But in the meantime these impediments are slowing
progress, and it is to the credit of the editors of The New England Journal of Medicine that they have promised to
speed advances in this area by seeking out and publishing well-done studies on embryonic stem cells. Therapeutic
cloning is controversial because it involves the creation of a cloned embryo, though not for reproduction. The purpose
is to produce a line of embryonic stem cells from which new, healthy tissue can develop for sufferers of several
diseases. Stem cells from a patient's cloned embryo are superior to stem cells extracted from an embryo left over from
another couple's fertility procedure because they are a better match, avoiding tissue rejection.
Critics object to this technology because they see therapeutic cloning bringing science dangerously close to
reproductive cloning. Abortion opponents equate the destruction of any embryos, cloned or not, with abortion.
In 2001 President Bush tried to strike a compromise on the issue with his nationally televised decision to permit
federal support only for embryonic stem cell research, using a limited number of cell lines that existed at that time.
While his aides said there were dozens of such cell lines available, close inspection since has shown there are barely
a dozen, far fewer than is necessary for robust research. This limit on federal research money is particularly
frustrating to scientists because the technology is still at an early stage in which private companies are reluctant to
invest and government money is crucial.
The other cloud over therapeutic cloning is legislation passed by the House of Representatives that bans both it and
reproductive cloning. So far the Senate has sensibly rejected such a bill, with many senators favoring a measure that
would ban reproductive cloning but permit the therapeutic version.
In this climate, it is reassuring to have an institution with the prestige of The New England Journal of Medicine take
such a clear stance. ''I believe,'' wrote the editor, Dr. Jeffrey Drazen, in last week's issue, ''that such research
must continue in the United States if we are to provide the best possible care for our patients.'' He expects many of
the cutting-edge studies the journal publishes on stem cells will be from foreign countries where there is stronger
public support for the work.
Both the medical community and the public at large must be kept informed of progress being made and what the stakes are
of insufficient investment in this research.
This story ran on page A22 of the Boston Globe on 7/25/2003.
SOURCE: The Boston Globe, MA
http://www.boston.com/dailyglobe2/206/editorials/Research_retarded+.shtml
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Date: Fri, 25 Jul 2003 22:02:32 -0400
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From: "Francis E. Shafer" <[log in to unmask]>
Subject: Re: Vacation
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We want to do that trip next year. Any good tips you have will be
appreciated. Frank can walk but it's getting very difficult. Have a great
time. Marilyn Shafer for Francis Shafer, [log in to unmask]
-----Original Message-----
From: Parkinson's Information Exchange Network
[mailto:[log in to unmask]] On Behalf Of Robert A. Fink, M. D.
Sent: Friday, July 25, 2003 7:06 PM
To: [log in to unmask]
Subject: Vacation
Dear all,
I am leaving this weekend for a vacation to Alaska (land and a cruise home).
It is time for some relaxation for all of us.
I am going "nomail" today and will sign back on when we return around
August 11.
Best to all,
Bob
**********************************************
Robert A. Fink, M. D., F.A.C.S., P. C.
2500 Milvia Street Suite 222
Berkeley, California 94704-2636
Telephone: 510-849-2555 FAX: 510-849-2557
WWW: http://www.rafink.com/
mailto:[log in to unmask]
"Ex Tristitia Virtus"
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Date: Fri, 25 Jul 2003 22:19:56 -0700
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From: Murray Charters <[log in to unmask]>
Subject: BRESSO,
Italy: Newron Receives US IND Approval for Safinamide in
Parkinson's Disease
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Macro*World Investor
Newron Receives US IND Approval for Safinamide in Parkinson's Disease.
BRESSO, Italy, Jul 23, 2003 /PRNewswire via COMTEX/ -- Newron Pharmaceuticals SpA, a clinical-stage company focused on
developing novel CNS therapies, has obtained IND (Investigational New Drug) approval from the US Food and Drug
Administration (FDA) to evaluate safinamide as a treatment for Parkinson's disease.
Under this IND, a protocol has been approved to assess the safety of safinamide in 12 healthy volunteers. The trial
will be conducted at the University of Vienna, Austria, under the auspices of Professor Hans Georg Eichler. The FDA
approved study is being conducted to confirm that no dietary restrictions are needed while being treated with
safinamide. This study will shortly be followed by efficacy studies in Parkinson's disease conducted in the USA.
Safinamide is currently being evaluated in multiple Phase II trials in Europe for the treatment of Parkinson's disease
and epilepsy.
"Obtaining FDA IND approval marks a crucial point in the development of safinamide. We have been encouraged by the
positive data generated from European trials of this compound in both epilepsy and Parkinson's disease. Confirming
these benefits in US clinical studies is now a priority for Newron," commented Stefano Rossetti, MD, Vice President,
Clinical Development for Newron Pharmaceuticals.
About Safinamide
Safinamide is an investigational new drug that is being studied in Phase II clinical trials in Europe for the treatment
of Parkinson's disease and epilepsy. Safinamide is a unique molecule with multiple mechanisms of action, including
potent, selective and reversible inhibition of monoamine oxidase (MAO)-B, without a MAO-A effect, dopamine re-uptake
inhibition, sodium channel blocking activity and calcium channel modulation. The development of safinamide in
Parkinson's disease is supported by a euro 2.7 million grant from the Italian Ministry of Productive Development's
Innovation Technology Fund.
About Newron Pharmaceuticals
Newron Pharmaceuticals SpA is a clinical stage biopharmaceutical company focused on novel ion channel-based therapies
for diseases of the central nervous system (CNS), particularly epilepsy, Parkinson's disease, neurodegeneration and
pain. In addition to safinamide, the company is also conducting Phase I clinical trials with ralfinamide, a potent
sodium channel blocker, for the treatment of neuropathic pain. Newron's clinical pipeline is supported by a broad
portfolio of early stage products fueled by the company's discovery pipeline. Newron is headquartered in Bresso, near
Milan, Italy. For further information visit www.newron.com.
SOURCE Newron Pharmaceuticals SpA
CONTACT:
Dr. Luca Benatti,
CEO of Newron Pharmaceuticals,
+39-02-610-3461;
or Mike Sinclair, Director,
Halsin Partners,
+44-870-747-0880,
for Newron Pharmaceuticals
URL:
http://www.newron.com
http://www.prnewswire.com
SOURCE: PR Newswire / Macro*World Investor
http://www.mworld.com/m/m.w?lp=GetStory&id=68113551
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Date: Fri, 25 Jul 2003 23:18:06 -0700
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From: Murray Charters <[log in to unmask]>
Subject: ARTICLE: Can Some Parkinson's Drugs Cause Alzheimer's-like
Symptoms?
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Can Some Parkinson's Drugs Cause Alzheimer's-like Symptoms?
By Amanda Gardner
HealthDay Reporter
(HealthDay is the new name for HealthScoutNews.)
FRIDAY, July 25 (HealthDayNews) -- Some drugs used to treat Parkinson's disease (news - web sites) might just be
responsible for Alzheimer's-like dementia in those same patients.
A study appearing in the Aug. 2 issue of Annals of Neurology found Parkinson's patients who took drugs to control
tremors and bladder function also had the hallmark "plaques" and "tangles" of Alzheimer's disease (news - web sites),
albeit at a much lower density than Alzheimer's patients and without clinical symptoms.
Both Parkinson's and Alzheimer's are neurodegenerative diseases, meaning that cells in particular areas of the brain
die off and give rise to various symptoms, explains William Thies, vice president of medical and scientific affairs at
the Alzheimer's Association in Chicago.
Both of these processes also give rise to specific changes in neurotransmitters so that, in the case of Parkinson's
disease, drugs that block acetylcholine receptors can help ease some symptoms. These same drugs could, however,
exacerbate Alzheimer's, which is marked by a loss of acetylcholine, the study says.
The findings -- by researchers at Newcastle General Hospital and University College London, both in England -- make
sense in light of current knowledge.
"We know that a fair amount of dementia is attached to Parkinson's," Thies says. "It's not the first symptoms but often
people get demented and, for that matter, people with Alzheimer's often develop motor problems late in the course of
the disease. So it is perhaps not entirely surprising that these drug which block a particular type of acetylcholine
receptor would lead to some exacerbation of thinking processes."
According to the study authors, people with Parkinson's have a six times higher rate of dementia compared with healthy
individuals, although this is not always due to Alzheimer-related pathology.
The drugs that block acetylcholine receptors in Parkinson's patients are called "antimuscarinic" agents and are usually
prescribed to control tremors and bladder dysfunction. Tricyclic antidepressants have the same effects and are also
sometimes prescribed for these individuals.
The authors of this study looked at the brains of 120 people over the age of 70 who had died of Parkinson's.
Specifically, they were looking for evidence of the protein buildups -- or plaques and tangles -- that are hallmarks of
Alzheimer's disease.
Those who had taken acetylcholine-blocking drugs for more than two years had more than twice as many plaques and
tangles as patients who took the drugs for less than two years or not at all. The density of the structures did not
approach that found in Alzheimer's patients, however, and could not even be considered "definite Alzheimer's disease."
Also, none of the Parkinson's patients ever had symptoms severe enough to warrant an Alzheimer's diagnosis, the
researchers say.
People who had taken tricyclic antidepressants also seemed to have more plaques and tangles but the increase was not
seen as statistically significant, the study says.
Although use of this type of drug has decreased in recent years -- thanks largely to the availability of new drugs --
they are still prescribed.
This study is an observational one, meaning it showed an association but no definite cause-and-effect relationship.
Nevertheless, Thies says, "it certainly should be something that physicians who are treating people with Parkinson's
are aware of and are paying attention to. Whether it revolutionizes the care, I think, is unknown."
Dr. Allan I. Levey is the author of an accompanying editorial in the journal and chairman of the department of
neurology at Emory University School of Medicine. "It [the possible link] probably doesn't change the immediate
landscape, [but] it should make people more cautious. One good outcome would be if people's awareness was heightened so
that they think twice about prescribing this mediation," he says.
"There's still a lot of ignorance in the medical community. These drugs are still prescribed way too widely," he adds.
"We see it on a daily basis. People are prescribed so many medicines and when there's no clear benefit, people hope for
a benefit and they just keep taking them, and that's the real risk. If it turned out to be that long-term use enhanced
the likelihood of developing Alzheimer's disease, that would be tragic."
On the research side, however, the findings may provide some clues as to the kinds of medications that could prevent
Alzheimer's symptoms, Levey says.
"There are other medications that act in opposing ways so instead of blocking acetylcholine, they promote it. The
drugs that promote acetylcholine may add some benefit in reducing the chance of getting Alzheimer's," he says. In fact,
some clinical trials testing that theory are already under way. The current study just "adds more fuel," Levey adds.
However, Thies says the findings aren't enough to discourage use of the drugs. "If you were using these drugs and saw a
very rapid deterioration in people's cognitive function, you might want to examine whether drugs were a component of
that," he says.
More information
For more on Alzheimer's disease, visit the Alzheimer's Association
http://www.alz.org/
or the Parkinson's Disease Foundation
http://www.pdf.org/
SOURCE: HealthDayNews / Yahoo News
http://tinyurl.com/i3zb
* * *
Reference:
The Tiny URL Utility
http://neuro-mancer.mgh.harvard.edu/ubb/Forum71/HTML/008690.html
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Date: Sat, 26 Jul 2003 06:57:44 -0500
Reply-To: Parkinson's Information Exchange Network
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From: Tom McCreary <[log in to unmask]>
Subject: Re: new symptom
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ty FOR THE FED BACK ... you know howdiffeerent each o f us are.. I have been
on mirapex for 4 tears and it didnt seem to bohetr my sleepping .
----- Original Message -----
From: "Laura Kreisler" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Monday, July 21, 2003 6:45 AM
Subject: Re: new symptom
> I have the same problem and am taking only the mirapex, My Neuro seems to
> think that is the problem and we are working on lowering the dosage. I
have
> always required 8 hours sleep, now I consider it a good night if I get 4
> hours and many nights I don't sleep at all. I have been having about two
> totally sleepless nights a week.
>
> Probably no help, but you are not alone.
>
> Best Regards
> Laura Kreisler
> [log in to unmask]
>
> -----Original Message-----
> From: Tom McCreary [mailto:[log in to unmask]]
> Sent: Monday, July 21, 2003 12:39 AM
> To: [log in to unmask]
> Subject: new symptom
>
> I cant sleep. After seeing a new nuero out of necesssity my drugs have
> been changed. 6 year old regimen of :
> 1 Sinemet 25/100 1xday, 1 Symmetryl 1x/day, 1 Eldepryl 1x/day,
1
> sinemet 25/100 CR and Mirapex 3xs/day ...
> modified to:
> 1 sinemt 25/100 with 1 Comptan 3x/day, and 1Mirapex 3 xs/day....
>
> Result = Offs were very bothhersome so I initiated all 3 at smae time
> anad got a little betteer performacnne. Next visit was in 3 weeks which
> was last Thursday
>
> My offs still were comng too quick and too debilitating. So new Dr
> droppped Mirapex and added 1/2 tab more Sinemet 25/100 resulting in good
> ons but offs were still unacceptable appeariing at 3 hours into 4 four
> dosage schedule So I dropped the 1/2 dose of Sinemet and added back in 1
> Sinemet CR 25/100 with hopes of reducing off time by increasaing on.
This
> has given a more workable on tine frame.
>
> Here is the problem. The second night or last Friday i didnt sleep. All
was
> fine until bed time. WHen i became still a guick tensiioning of an
isolated
> muscle group producing something of a tiny explosive jerk reactiion began
> occurring and very persistent. When i got up it wouldnt occurr but when
> relaxed it would reappear. Sometimes in new areas. Saturuday was fine
> Staurdady night Hell night 2. Sundday was fair and tonight sassme thing
is
> occuring.
>
> Have I decended to anoother level of PD. What might tomorrow bring? More
> worrysome is tomorrow night?. The new DR isnt available on weekends but
her
> answeirng machine is on duty.
> I will be calling with my concerns.
> If you have made it this far i would like some relative coments if you
have
> any.
>
>
> ----------------------------------------------------------------------
> To sign-off Parkinsn send a message to:
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> Thanks Tom
>
> ----------------------------------------------------------------------
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Date: Sat, 26 Jul 2003 08:06:22 EDT
Reply-To: Parkinson's Information Exchange Network
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From: Diane Nicolaou <[log in to unmask]>
Subject: Mirapex & Headaches
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Sorry about that I hit the wrong Key.
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Date: Sat, 26 Jul 2003 08:11:04 EDT
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
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From: Kathleen Cochran <[log in to unmask]>
Subject: Re: ARTICLE: Can Some Parkinson's Drugs Cause Alzheimer's-like
Symptoms?
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In a message dated 7/26/03 2:21:02 AM, [log in to unmask] writes:
<< The drugs that block acetylcholine receptors in Parkinson's patients are
called "antimuscarinic" agents and are usually
prescribed to control tremors and bladder dysfunction. Tricyclic
antidepressants have the same effects and are also
sometimes prescribed for these individuals. >>
This is scary stuff. Does anyone know the names under which these drugs are
sold?
Kathleen
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Date: Sat, 26 Jul 2003 05:36:54 -0700
Reply-To: [log in to unmask]
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Murray Charters <[log in to unmask]>
Subject: Re: ARTICLE: Can Some Parkinson's Drugs Cause Alzheimer's-like
Symptoms?
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On 26 Jul 2003 at 8:11, Kathleen Cochran wrote:
In a message dated 7/26/03 2:21:02 AM, [log in to unmask] writes:
<< The drugs that block acetylcholine receptors in Parkinson's patients are
called "antimuscarinic" agents and are usually
prescribed to control tremors and bladder dysfunction. Tricyclic
antidepressants have the same effects and are also
sometimes prescribed for these individuals. >>
This is scary stuff. Does anyone know the names under which these drugs are
sold?
Kathleen
* * *
Mornin' Kathleen,
Don't get too scared! These dudes are just speculatin' that a side effect of years of some drugs may contribute to
Alzheimer's-like symptoms... I saw the article and posted it for all to see as part of Parkinson's awareness... No
intent on anyones part to scare anyone... but, if this is true, maybe it will be prudent, in the future, to take an
alternate drug....
Sooo... don't be scared and keep right on readin' and askin' questions... that's what this forum is all about...
cheers ....... murray
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Date: Sat, 26 Jul 2003 15:52:15 +0200
Reply-To: Parkinson's Information Exchange Network
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From: "M.Schild" <[log in to unmask]>
Subject: Re: ARTICLE: Can Some Parkinson's Drugs Cause Alzheimer's-like
Symptoms?
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Artane is one anticholinergic drug and does produce hallucinations in
some people, not all. It is not used very often now because better drugs
have come out. Some people find it useful and do well with it
Maryse
>
>This is scary stuff. Does anyone know the names under which these drugs are
>sold?
>
>Kathleen
>
>
>
>
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Date: Sat, 26 Jul 2003 17:16:46 +0100
Reply-To: Marco De Michiel <[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Marco De Michiel <[log in to unmask]>
Subject: Re: ARTICLE: Can Some Parkinson's Drugs Cause Alzheimer's-like
Symptoms?
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Kathleen,
I don't wish to be rude but I really wonder whether you and other members of
PIEN have read any of my postings because I pointed out a number of times
that 'Prothiaden' (Tricyclic antidepressant) induces Parkinsons; is
documented as such by the BMA (UK equivalent of AMA) and has been withdrawn.
I was taking this from 8/88 thru 1/90; by the end of 1990 the first PD
symptoms appeared.
I am fed up with trying to motivate this group into setting up a database to
see how many have taken any form of anti-depressants in the past especially
YOP's. I firmly believe that anti-d's and perhaps illegal drugs (heroin,
cocaine, hash, etc.) are the cause of the initial damage; which is then
compounded with drugs like Sinemet.
I ask you and all those on the list this simple question, if you are taking
Sinemet or Similar;
how soon after initial diagnosis did you start taking Sinemet and initial
dosage, how many times was the dosage increased and why, and what is the
present dosage. How were you physically at the beginning and now; better or
worse.
I'm not an Academic or have any indepth medical knowledge but God has
blessed me with intelligence and an enquiring mind, and a spirit of
determination to find the cause(s) of PD and start the process of treating
the cause(s) and not the symptoms. Taking ever increasing amounts of
synthesised dopamine is in my opinion 'the nail in the coffin'. Why? Because
it is impossible to measure how much is being produced naturally, the sum of
this plus tablet form (taken at intervals we decide rather than when the
brain/body requires it) almost always creates an excess amount, therefore,
the brain produces less and less and in time zero. And then as we all know
the benefit of the meds end as well. Then we are left with DBS.
All the current focus on stemcells is a waste of time because it is not
connected to any specific cause. And is more dangerous than sinemet because
they are living cells, from another body and no one knows how much to give
each case. Look at the results of the first trial (in NY, I think) which
went very wrong.
It's 10yrs since I was diagnosed; I didn't take any meds until 2/99, when I
started with Pergolide(permax) and in 8/02 started Sinemet. I keep the
dosage at a minimum: 2 x 1mg Pergolide and 3 x 62,5 Sinemet per day. Other
than occasional problem with walking and swollen ankles I'm AOK.
Both the diagnosis and drug therapies are outdated. I don't really believe
any organisation is really looking into cause(s). All R&D is on treatment of
symptoms. Why? because the resulting therapies generate an ongoing,
significant, revenue stream for the Pharmaceutical Co.'s.
I read somewhere recently that when one medical student told a colleague he
was going to specialise in Neurology, the colleague replied, " why bother
because it's 'diagnose and adios'". That's pretty sad, don't you think.
Makes me wonder if we're just human lab-rats!
I'm sorry if I've gone on a bit but I feel passionately about this.
Kind regards,
Marco (54/M/93, London, England)
----- Original Message -----
From: "Kathleen Cochran" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Saturday, July 26, 2003 1:11 PM
Subject: Re: ARTICLE: Can Some Parkinson's Drugs Cause Alzheimer's-like
Symptoms?
> In a message dated 7/26/03 2:21:02 AM, [log in to unmask] writes:
>
> << The drugs that block acetylcholine receptors in Parkinson's patients
are
> called "antimuscarinic" agents and are usually
> prescribed to control tremors and bladder dysfunction. Tricyclic
> antidepressants have the same effects and are also
> sometimes prescribed for these individuals. >>
>
> This is scary stuff. Does anyone know the names under which these drugs
are
> sold?
>
> Kathleen
>
> ----------------------------------------------------------------------
> To sign-off Parkinsn send a message to:
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> In the body of the message put: signoff parkinsn
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Date: Sat, 26 Jul 2003 10:26:13 -0700
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
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From: Paul Graham <[log in to unmask]>
Subject: Re: ARTICLE: Can Some Parkinson's Drugs Cause Alzheimer's-like
Symptoms?
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In response to your comment:
"I firmly believe that anti-d's and perhaps illegal drugs (heroin,
cocaine, hash, etc.) are the cause of the initial damage; which is then
compounded with drugs like Sinemet."
I was diagnosed at age 37, sixteen years ago, had never taken any illegal drugs or antidepressants but was exposed to large amounts of DDT as a teenager.
Paul 53/M/87 Canada
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=========================================================================
Date: Sat, 26 Jul 2003 13:49:27 -0400
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: "Donald F. McKinley" <[log in to unmask]>
Subject: Re: Vacation
MIME-Version: 1.0
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http://www.geocities.com/doncyberdadmckinley/
----- Original Message -----=20
From: "Robert A. Fink, M. D." <[log in to unmask]>
To: <[log in to unmask]>
Sent: Friday, July 25, 2003 7:06 PM
Subject: Vacation
BOB SAY HELLO TO MY BABY I.Y.Q.=20
> Dear all,
> b> I am leaving this weekend for a vacation to Alaska (land and a =
cruise home).
> It is time for some relaxation for all of us.
>=20
> I am going "nomail" today and will sign back on when we return around
> August 11.
>=20
>=20
> Best to all,
>=20
> Bob
>=20
> **********************************************
> Robert A. Fink, M. D., F.A.C.S., P. C.
> 2500 Milvia Street Suite 222
> Berkeley, California 94704-2636
> Telephone: 510-849-2555 FAX: 510-849-2557
> WWW: http://www.rafink.com/
>=20
> mailto:[log in to unmask]
>=20
> "Ex Tristitia Virtus"
>=20
> *********************************************
>=20
> ----------------------------------------------------------------------
> To sign-off Parkinsn send a message to: =
mailto:[log in to unmask]
> In the body of the message put: signoff parkinsn
>=20
>=20
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Date: Thu, 24 Jul 2003 15:19:02 -0400
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Paula Shook <[log in to unmask]>
Subject: Re: muscle pain/waking up 20 min.
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Tom,
The pain is in my right buttocks all the way to the ankle. It is a
very tight, constrictive ache that often takes my breath away and makes me
put on my PD face - a grimace. Then it often turns into the entire leg
right to the toes that feels like the strongest case of "falling asleep"
(pins and needles). Now, often times, it feels more like spikes. I often
lay on the floor on my back in front of a chair and put my feet on the
chair. It seems to help everything, including my back. Paula
----- Original Message -----
From: "Tom McCreary" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Wednesday, July 23, 2003 3:26 AM
Subject: Re: muscle pain/waking up 20 min.
> Paula, could you describe the type of pain you are experiencing??
> ----- Original Message -----
> From: "Paula Shook" <[log in to unmask]>
> To: <[log in to unmask]>
> Sent: Tuesday, July 22, 2003 10:16 PM
> Subject: Re: muscle pain/waking up 20 min.
>
>
> > Tom,
> > This is Paula from PA, 49, dx at age 37. I've had such pain in my
> > thighs for the last three days that I dread going to bed. I toss and
> turn,
> > get 20 min of sleep until the pain wakes me up. When it got to be every
> 10
> > min, I got the Ibuprofen out - took 4 - got 3 hrs sleep. Ibuprofen
seems
> to
> > help me more than any other drug. I'm trying the liquid sinemet
tomorrow
> > a.m.. Stay tuned/Paula
> > ----- Original Message -----
> > From: "Tom McCreary" <[log in to unmask]>
> > To: <[log in to unmask]>
> > Sent: Tuesday, July 22, 2003 12:51 PM
> > Subject: muscle contraction robbing sleep.
> >
> >
> > > Its been 4 days now w/o sleep. I am not doing well. AS i begin to
fall
> > asleep the constricting or contracting of primarily my thigh muscles
> begin.
> > Occurring every 20+/- secs ad lasting for as many as 5 secs. This will
go
> > on all night for until i take my first dose of Symetryl and Comtan.
This
> > could be controlling the contractions during the day......... The
> sensation
> > is identical to that offered by the "tinge" device used by
Chiropractors,.
> > It electronically causes a muscle to contract and then relax to reduce
> > soreness. Have any of you had a similar problem and what'd u do?
> > >
> > > ----------------------------------------------------------------------
> > > To sign-off Parkinsn send a message to:
> > mailto:[log in to unmask]
> > > In the body of the message put: signoff parkinsn
> > > Thanks Tom
> > >
> > >
> >
> > ----------------------------------------------------------------------
> > To sign-off Parkinsn send a message to:
> mailto:[log in to unmask]
> > In the body of the message put: signoff parkinsn
>
> ----------------------------------------------------------------------
> To sign-off Parkinsn send a message to:
mailto:[log in to unmask]
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>
>
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=========================================================================
Date: Sat, 26 Jul 2003 16:07:02 EDT
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Maxine Krugman <[log in to unmask]>
Subject: Re: muscle pain/waking up 20 min.
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sounds like the sciatica my husband had...if so, there are really good,
simple exercises which will help stretch those muscles and relieve some of the
pain. my two cents..
maxine
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Date: Sat, 26 Jul 2003 21:57:50 +0100
Reply-To: Marco De Michiel <[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Marco De Michiel <[log in to unmask]>
Subject: Re: ARTICLE: Can Some Parkinson's Drugs Cause Alzheimer's-like
Symptoms?
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Hello Paul,
Thank you for your note. In the rush to send a reply to Kathleen I forgot to
mention agrochemicals(pesticides, defoliants and nitrates) but if you've
read any of my previous postings I do include the agrochemicals group.
I take it your family is in Farming or you happened to be living in a
farming area. If you're still living in the same place, do any other members
of your family or friends have PD? Would you be prepared to gather some data
if I gave you a questionnaire, which I've drafted? This does not include the
persons name and even though I'm a Private indivdiual I will observe the
Data Protection Act and only make invidual returns available to Third
parties with their consent.
Look forward to your reply.
Regards,
Marco
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Date: Sat, 26 Jul 2003 19:30:57 EDT
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Roberta Innarella <[log in to unmask]>
Subject: PD Info
MIME-Version: 1.0
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Marco, how did you make out on Pergolide?=A0 After trying 5 meds with=20
horrendous side effects, this will be my 6th.=A0 Among other things, I also=20=
suffer from a=20
cardiomyopathy.=A0 My cardiologists want a baseline echocardiogram prior to=20=
me=20
starting, then again in 6 months and annually after that, which is what I do=
=20
anyway.=A0 I am 53 and was diagnosed last year.=A0 I=A0 grew up in the city,=
nowhere=20
near any farm land.=A0 With the exception of 3 weeks in 1978, when I took ei=
ther=20
Elavil or Etrafon (can't remember which) I never took any anti'd's.=A0 I now=
=20
live in an apartment that has well water but I never used it as my drinking=20
source.=A0 I drank bottled water up until about 5 years ago when I switched=20=
to=20
distilled water.=A0 According to Dr. Andrew Weil, author of "Spontaneous Hea=
ling", it=20
is supposed to purge your body of toxins.=A0 Among other supplements, I've b=
een=20
taking 150 mg of CoQ10 for the past 5 years.=A0 My father had PD.=A0 He also=
grew=20
up in the city, no farmland, no anti'd's.=A0 He was a patient, happy fella.=
=A0 He=20
was born in '23.=A0 In the mid-80s he had a bad cold and lost his sense of=20
smell (not taste).=A0 Not much was thought about it back then.=A0 Doctor sai=
d it may=20
come back, may not.=A0 In '95 at age 72 he became very depressed.=A0 It was=20=
decided=20
his depression came from the fact that his father died at age 72.=A0 However=
,=20
in looking at a picture of him in '94, the mask was already developing.=A0 I=
=20
think he was formally diagnosed around '96/'97.=A0 At the end, they also tol=
d us he=20
had Alzheimer's.=A0 I don't believe that now.=A0 I believe his dementia was=20=
drug=20
induced.=A0 He was a tool and dye maker by trade.=A0 Don't know what toxins=20=
he=20
could have been exposed to in that environment.=A0 My mother said he had sle=
ep=20
disturbances after he came home from the War (II).=A0 He was stationed in th=
e Phillipi
ne Islands (correlation?)
I enjoy your posts to PIEN and find them very informative and interesting.
Roberta Innarella
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Date: Sat, 26 Jul 2003 21:11:02 EDT
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Rayilyn Brown <[log in to unmask]>
Subject: Re: muscle pain/waking up 20 min./Paula
MIME-Version: 1.0
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Paula
this pain sounds like the painful spasticity my mom suffers from stroke
damage. She is on morphine patch in "in-home hospice"> DBS is done for
spasticity, but she is probably too old - 88, almost 89.
Rayilyn
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=========================================================================
Date: Sat, 26 Jul 2003 18:24:44 -0700
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: "Merv Swing." <[log in to unmask]>
Subject: Re: CARE list
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----- Original Message -----
From: "M.Schild" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Friday, July 25, 2003 10:19 AM
Subject: CARE list
> ESPECIALLY FOR NEW MEMBERS OF THE PIEN LIST, here's information about
> CARE !
>
> CARE (Caregivers Are Really Essential) is a sublist of the main PD list.
It
> is especially for caregivers (CGs) of Parkinsonians (PWPs). The need for
> such a list was evident from feelings expressed on the PD list that there
> are times when CGs need to be able to "let off steam" in a place where
they
> will not upset their PWPs. Some of us have CareGiver support groups, where
> we can safely express feelings, get practical support, and share
> experiences but some do not. The CARE list , as a "virtual support group",
> serves this need, but DOES NOT shut off the participation of CGs on the
> main list.
>
> CGs who want to join CARE, where there is much less traffic than on the
> main list, may do so as follows:
>
> Send in body of post (not on subject line) to:
> [log in to unmask]
>
> this command: subscribe CARE your full name
>
> no signature, please.
Please add Mary Swng [log in to unmask] to [log in to unmask]
>
> You will be added to the list, and will receive further instructions.
>
> If you have problems, for CARE ask Camilla Flintermann
> <[log in to unmask]>
> or Jeff Jones (co-owner) <[log in to unmask]>
> ********************
>
> Camilla Flintermann, former CG for Peter 83/70/55
> Oxford, Ohio
> <[log in to unmask]>
>
> on the web at http://www.geocities.com/camillahf/index.html
>
> "Ask me about the CARE list for Caregivers of
> Parkinsonians ! "
> And visit the CARE webring at http://www.pdcaregiver.org
>
> ----------------------------------------------------------------------
> To sign-off Parkinsn send a message to:
mailto:[log in to unmask]
> In the body of the message put: signoff parkinsn
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=========================================================================
Date: Sun, 27 Jul 2003 04:35:17 -0700
Reply-To: [log in to unmask]
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Murray Charters <[log in to unmask]>
Subject: RESEARCH: A Linkage Study of Candidate Loci in Familial
Parkinson's Disease
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A Linkage Study of Candidate Loci in Familial Parkinson's Disease
Karin Wirdefeldt , [log in to unmask]
Catherine E Burgess , [log in to unmask]
Lisa Westerberg , [log in to unmask]
Haydeh Payami [log in to unmask]
and Martin Schalling [log in to unmask]
BMC Neurology 2003 3:6 (published 26 July 2003)
Abstract (provisional)
Background
Parkinson's disease is the second most common neurodegenerative disorder after Alzheimer's disease. Most cases are
sporadic, however familial cases do exist. We examined 12 families with familial Parkinson's disease ascertained at the
Movement Disorder clinic at the Oregon Health Sciences University for genetic linkage to a number of candidate loci.
These loci have been implicated in familial Parkinson's disease or in syndromes with a clinical presentation that
overlaps with parkinsonism, as well as potentially in the pathogenesis of the disease.
Methods
The examined loci were PARK3, Parkin, DRD (dopa-responsive dystonia), FET1 (familial essential tremor), BDNF (brain-
derived neurotrophic factor), GDNF (glial cell line-derived neurotrophic factor), Ret, DAT1 (the dopamine transporter),
Nurr1 and Synphilin-1. Linkage to the alpha-synuclein gene and the Frontotemporal dementia with parkinsonism locus on
chromosome 17 had previously been excluded in the families included in this study. Using Fastlink, Genehunter and
Simwalk both parametric and model-free non-parametric linkage analyses were performed.
Results
In the multipoint parametric linkage analysis lod scores were below -2 for all loci except FET1 and Synphilin-1 under
an autosomal dominant model with incomplete penetrance. Using non-parametric linkage analysis there was no evidence for
linkage, although linkage could not be excluded. A few families showed positive parametric and non-parametric lod
scores indicating possible genetic heterogeneity between families, although these scores did not reach any degree of
statistical significance.
Conclusions
We conclude that in these families there was no evidence for linkage to any of the loci tested, although we were unable
to exclude linkage with both parametric and non-parametric methods.
Full Article in PDF format: (250k - req. Adobe Acrobat reader)
http://www.biomedcentral.com/content/pdf/1471-2377-3-6.pdf
SOURCE: BMC Neurology / BioMed Central
http://www.biomedcentral.com/bmcneurol
* * *
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Date: Sun, 27 Jul 2003 05:02:41 -0700
Reply-To: [log in to unmask]
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Murray Charters <[log in to unmask]>
Subject: Rutgers Scientists Post a Genetic Road Map to Sources of Disease
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Advance for Administrators of the Laboratory
24 July 2003
Rutgers Scientists Post a Genetic Road Map to Sources of Disease
Rutgers geneticist Tara Matise and her colleagues have produced a map that=
will help pinpoint the genes linked to such
serious diseases as diabetes, high blood pressure and schizophrenia.
This linkage map is based on the amount of the interaction or recombinatio=
n taking place among nearly 3,000 genetic
markers whose positions are known. The markers used for the map are single=
-nucleotide polymorphisms (SNPs)=97the
variations of a gene that people may carry at one point on their DNA.
A paper describing the linkage map will appear in the August 2003 issue of=
the American Journal of Human Genetics and
is currently available online. Matise is first author on the paper, with A=
ssistant Professor Steven Buyske and graduate
student Chunsheng He, both from Rutgers, The State University of New Jerse=
y, also among the authors.
Matise pointed out that SNPs provide a shortcut for pinpointing genes that=
may contribute to disease because the SNPs
are both plentiful and easy to analyze. Many SNPs lie within genes associa=
ted with a disease, while others are near
such genes, she added.
"Our challenge was to calculate the recombination distance =96 a measure o=
f interaction =96 between the markers," says
Matise, an associate research professor in the department of genetics. "Th=
is is the first map of its kind, a genomewide
SNP linkage map, and it provides the kind of data we need to conduct our a=
nalyses in the search for disease genes.
"Since our map is much more dense and has more markers than other kinds of=
maps, we wanted to see how good it really
is. We did some calculations to compare the information content of our SNP=
map versus some existing maps commonly used
for genome screening," says Matise. "It turns out that our map is equivale=
nt to or better than the other maps that are
currently used."
Matise explained that without this kind of map, SNP-based linkage screenin=
g in humans=97a procedure by which the entire
genome is scanned for evidence of linkage to a disease=97cannot be done. T=
his screening is currently performed using
specialized and customized high-throughput genotyping machines commerciall=
y available from companies including Applied
Biosystems, Illumina and Amersham Biosciences.
But in the journal article, Matise and her co-authors wrote, "It is antici=
pated that the successful identification of a
set of SNPs tailored for linkage analysis, such as that presented here, wi=
ll stimulate development of mass-produced
(i.e., less expensive) means for large-scale genotyping with this same mar=
ker set."
SOURCE: ADVANCE Newsmagazine
http://www.advanceforal.com/common/editorial/editorial.aspx?CC=3D18933
* * *
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Date: Sun, 27 Jul 2003 05:15:58 -0700
Reply-To: [log in to unmask]
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Murray Charters <[log in to unmask]>
Subject: ARTICLE: Israel Joins International Stem Cell Forum
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Israel 21C, CA
Israel joins international stem cell forum
By ISRAEL21c staff July 27, 2003
Israeli scientists are teaming up with their counterparts from 12 countries to launch a new organization designed to
promote collaboration on stem cell research and to accelerate the development of new medical treatments.
The International Stem Cell Forum was created at a meeting chaired by the UK's Medical Research Council (MRC) in London
on July 11. The launch comes just six months after the MRC announced it was setting up an informal discussion forum to
tackle stem cell research on a global rather than national basis.
The main aim of the new organization is to produce international scientific benchmarks on the characteristics of new
and existing stem cell lines. This will be achieved by inviting researchers from major institutions in each of the
member countries to examine cell lines, using standardized tools and procedures.
Together with the UK representatives, signatories include the US National Institutes of Health, the National Health and
Medical Research Council of Australia, the Canadian Institutes of Health Research, and the Israel Academy of Sciences
and Humanities. The other states involved in the collaboration are Germany, France, Japan, Finland, Singapore, the
Netherlands, and Sweden.
"Israel is happy to contribute to this international coordination effort," said Professor Michel Revel, the Chairman of
the Molecular Genetics Department at the Weizmann Institute of Science, and the chairman of The Bioethics Advisory
committee of The Israel Academy of Sciences and Humanities. "The initiative is attempting to coordinate and to
standardize the human embryonic stem cell research that exists in different countries."
According to Revel, Israel's inclusion in the new group demonstrates that it is a leader in human embryonic stem cell
research.
"There has been great progress in developing this new technology to be used for transplants, diabetes research, heart
repair and in the farther future, treating brain damage. Several groups in Israel have produced cell lines from
human embryos, which have been donated or left over from IVF treatments. The alternative would have been to destroy
them," said Revel.
As head of The Bioethics Advisory committee of The Israel Academy of Sciences and Humanities, Revel wrote and published
a report called The Use of Embryonic Stem Cells for Theraputic Research in 2001, which was adopted as the official
policy of the Israel Ministry of Health. The report discussed the
ethical and religious debate about using human embryos. He lauded the formation of the forum, especially at a time when
there are movements in the United States and European countries like Germany and Austria are protesting this type of
research.
"It's an important initiative at a time when the UN is faced with requests from some countries to stop any research on
cloning technology, including embryonic stem cell research. There was a big change in the US following the Bush
administration's entry agains the use of human embryos for research that may lead to cloning and other type of
acitvities they find to be not compatible with their standards," said Revel.
As part of the Forum's activities, a new registry of stem cell lines, which will be made available on a dedicated Web
site, is being developed under the leadership of Peter Andrews from the Centre for Stem Cell Biology at the
University of Sheffield.
The creation of the group addresses concerns that in the race to explore new applications for stem cell technology,
teams of scientists around the world could end up working to different criteria or duplicating one another's efforts.
The idea behind the forum is to prevent duplication and to coordinate research as much as possible, speeding up
research by sharing information.
"New cell lines are being produced all the time, and the idea is to standardize the type of research which is allowed
on these cells, and to harmonize the ethical regulations that are used in different countries on stem cell research,"
said Revel.
The United Kingdom will take charge of the drive to characterize cell lines, and representatives from Australia and
Canada have agreed to explore ethical and patenting issues.
MRC Chief Executive George Radda said in a press statement: "International coordination will accelerate progress in
this cutting-edge area of research, maximizing health benefits for the global public."
James Battey from the US National Institutes of Health said he hoped the initiative would allow US scientists to
"harmonize" their research efforts with those elsewhere. He told The Scientist, "A standardized approach to
characterizing human embryonic stem cell lines throughout the international research community will reveal similarities
and differences between the properties and potential of lines established at different times under different
experimental protocols. Such an effort will undoubtedly accelerate the pace of discovery."
According to Andrews, a "task force" of four or five representatives has been formed to establish a program of work for
the forum for the next year.
"We'll do it in bite-sized chunks because it's such a huge project," he told The Scientist. "It's a question of working
on the key parts, such as how to characterize cell lines, how to stop them doing things you don't want them to do, and
how to get them to differentiate into cells that you want.
"There is a huge amount of promise in stem cell research but also a huge amount of hype, so we have to be careful what
we tell people. It could take 15 to 20 years, but there's a good chance we could produce therapies that are really
revolutionary for diseases that cripple a lot of people," said Andrews.
SOURCE: Israel 21C, CA
http://tinyurl.com/i6rc
http://www.israel21c.org/bin/en.jsp?enPage=BlankPage&enDisplay=view&enDispWhat=object&enDispWho=Articles%5El463&enZone=H
ealth&enVersion=0&
Reference:
Stem cell forum launched
http://www.biomedcentral.com/news/20030717/04
* * *
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Date: Sun, 27 Jul 2003 05:25:45 -0700
Reply-To: [log in to unmask]
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Murray Charters <[log in to unmask]>
Subject: ARTICLE: Seniors Struggle With Decision To Give Up Driving
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Seniors struggle with decision to give up driving
BY JASMINE-SIMONE MILLER , The Island Packet
Published Sunday, July 27th, 2003
Marguerite Sweatman vividly remembers why she gave up her driver's license three years ago.
"I noticed one day, when I got in the car and started down the road, that instead of one line in the center of the
road, I had two!" she said.
The 84-year-old resident of the Carolina House of Hilton Head Island is one of many seniors who have decided to give up
driving because of their age. Of the nearly 2.9 million drivers with South Carolina driver's licenses, there were
410,195 drivers over the age of 65, according to 2001 statistics taken by the S.C. Department of Public Safety. Of
those drivers, 274,122 were over the age of 70 and 163,268 were 75 or older, the statistics showed.
The question of how old is too old to be behind the wheel has received more attention since July 16, when an 86-year-
old driver crashed into a farmers market in Santa Monica, Calif., killing 10 and injuring dozens.
That debate was spurred further Friday morning when a 79-year-old disabled man lost control of his car and plowed into
a northern Florida roadside farmers market, leaving three people with minor injuries.
Only three of the 45 Carolina House residents use their cars, said Patty Knox, director of marketing and sales at the
assisted-living facility, which provides a transportation service to take residents to doctor's appointments, shopping
and various evening activities.
In addition to using the transportation system, Sweatman now travels around Hilton Head with friends or family. Does
she miss driving? "Yes I do. That was a freedom," she said.
But it was a freedom she was willing to sacrifice for safety.
"I've ridden with people who needed to give up driving and that's frightening," she said.
Resident Dick Teasel, 81, followed his mother's footsteps and gave up driving at 75 after being further persuaded by
his daughter and son-in-law.
"It's a tough decision for older people to make," said Teasel, who noted that he's never had an accident since learning
how to drive at age 14. "It's not convenient to give up driving. I'm dependent all the time on people picking me up.
"But I didn't want to be like that guy in Santa Monica, Calif. I didn't want to be in that situation. When you get
older, sometimes your sight isn't so good or your memory isn't so good," he said.
Despite not having a car, Teasel says he still gets out and has fun by going out to eat with his daughter who lives in
Bluffton, to events with the Carolina House or as a member of Retired Old Men Eating Out, a group associated with St.
Francis By the Sea Catholic Church that meets for lunch on Thursdays.
"You just have to plan a little bit," Teasel said. "I may run to the hardware store or the clothing store if I had a
car, but now I combine trips. The other day my daughter took me out to Outback for dinner, and then I stopped at the
drugstore afterwards and bought Tylenol."
Giving up driving is often very difficult for seniors because many see the sacrifice as the start of losing their
independence, said Knox, who is trying to persuade her 78-year-old father, who has had an accident, to give up driving.
"He only drives at certain times during the day, and he thinks he's doing the right thing, but he still had the
accident," she said.
Knox said she believes the accident was because of hearing loss and slowed reflexes.
Maggie Fagan, an occupational therapist with the driving evaluation program at Hilton Head Regional Medical Center,
says that aside from the experience of a trauma, there are certain health conditions that may make driving difficult as
we age.
"If you question your skills, you should be evaluated," Fagan said. "There are certain things that affect vision, like
cataracts. Fitness level also changes, and the ability to react can slow."
The driving program, which Fagan started five years ago, helps people who have suffered from a trauma, such as a
stroke, Parkinson's disease or multiple sclerosis, regain their ability to drive.
Participants, who are referred to the program by their physician, are typically over the age of 75. They are screened
for important driving concerns, such as accurate vision, perception and cognition, as part of a clinical assessment
before returning to the road with a driving instructor.
"Break reaction time is also very important with the elderly; as we age our reactions slow. The average time it takes a
person to move their foot from the accelerator to the break is between four-tenths and six-tenths of a second. We try
to get elderly drivers back to (at least) six-tenths of a second," she said. "If it takes them longer than up to a
second, then that's a cause for concern."
Knox says she often talks to people who are trying to persuade their elderly parents to give up driving.
She recently spoke to the family members of an elderly man who has fallen three times but continues to drive.
"It's a major concern. Can he still drive? But that's his independence, his one control," Knox said. "But giving up a
car doesn't mean you can't continue with your lifestyle. Life goes on even when you can't drive."
Former mayor of Hilton Head Island Martha Baumberger, a resident at the Seabrook of Hilton Head, is proof that life
goes on. She even wrote a guide for Seabrook residents, called "How To Get Along Without a Car," which suggests using
the Seabrook transportation service or services that will deliver necessities, such as prescription medicines and
groceries.
But Baumberger, who turned 90 on Thursday, didn't give up driving because of her age.
"I gave up driving not because I was getting old, but because my car was getting old," said Baumberger, who sold her
1987 Chevy Monte Carlo three years ago. "But I'm glad I don't have the hassle of repairs or the cost of gasoline."
She promotes the financial reward of not driving in her guide.
One bill that Baumberger will no longer have to worry about is one for car insurance. Bea Borynski, office manager for
Farm Bureau Insurance of Beaufort, said insurance premiums are increased after age 55.
"The difference between the insurance premium of a 55-year-old and the average driver, around 35 years old, is an
increase of about $20. The difference between the average 35-year-old and someone over 70 is an increase of between $50
and $100," Borynski said.
While coverage varies by driving record and location, Borynski said the increase in insurance cost is because older
drivers may not be as alert and quick as younger drivers.
Aside from saving money, Sweatman, Teasel and Baumberger, like many seniors, have proven that giving up driving will
not put a dent in your social life.
"Can you survive without driving?" Teasel said. "The answer is yeah."
"It's easier to go to sleep at night when you don't have a problem like driving when you shouldn't," he said.
SOURCE: Hilton Head Island Packet, SC
http://www.islandpacket.com/news/local/story/2726352p-2527587c.html
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Date: Sun, 27 Jul 2003 05:28:56 -0700
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From: Murray Charters <[log in to unmask]>
Subject: ARTICLE: Spain Gives Approval To Stem Cell Research,
With Conditions
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Spain gives approval to stem cell research, with conditions
2003-07-27 / Reuters /
Predominantly Catholic Spain authorised the use of embryonic stem cells for research on Friday, but said only embryos
left over from fertilisation treatment could be used, and only with the parents' consent.
Stem cells are master cells which have the potential to grow into any cell or tissue and scientists say stem cell
research could yield cures for Parkinson's and Alzheimer's diseases.
But research is controversial and opposed by the Vatican and some mainly Catholic countries.
Scientists can gather cells by creating embryos specifically for that purpose or using embryos left over from in vitro
fertilisation fertility treatment. Adults also have the master cells but they are not as flexible as embryonic ones.
Health Minister Ana Pastor told a news conference the law maintains that the purpose of embryos is a reproductive one
but when it is proved that is not possible, then alternatives are possible.
She said it was a respectful solution, "because it gives couples the final word on the fate of the embryos that they
currently have frozen, and it's an ethical solution because it doesn't permit the manipulation of embryos and, above
all, it prevents people making profit from the use of stem cells."
The new reform allows frozen embryos to be kept for the parents, given to another couple, or used for research.
Earlier this month the European Commission set out rules to regulate the use of embryos in EU-funded research, saying
funding would only be given for research using embryos left over from fertility treatment.
Spain's Health Ministry estimates there are tens of thousands of frozen embryos in fertility clinics around the
country.
SOURCE: Reuters / eTaiwan News, Taiwan
http://www.etaiwannews.com/World/2003/07/27/1059275378.htm
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Date: Sun, 27 Jul 2003 11:21:22 EDT
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From: Sherry Santamaria <[log in to unmask]>
Subject: For Rayilyn
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Go girl! Hope everything continues to work out. We're all pulling for you.
Sherry
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Date: Sun, 27 Jul 2003 14:18:22 -0400
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parkinsns nomail
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Date: Sun, 27 Jul 2003 16:39:13 -0400
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Comments: RFC822 error: <W> Incorrect or incomplete address field found and
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From: Gail Vass <[log in to unmask]>
Subject: Quality of living improved with 2 boards.
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Folks,
A coupla' ma'buddies have a hard time standing up
from sittin'' in a chair.
They rock forward, hold the arm rests and try to stand.
More times than not they fall back into the seat.
Weakness and balance problems often require them
to try a coupla times to get up.
I slipped a 2 by 6 board under their reclinin'' chair's legs
[in one case and under sofa legs in another case] ...and
PRESTO...they were able to stand with only one try.
Victory and self reliance feels good.
Think about anyone who might be helped by this simple
solution. I went to Home Depot and got scraps of 2 by 6
boards [ really 1 1/2 X 5 1/2] for less than a dollar. That
1 and 1/2 inches to raise a chair or sofa put them back
on the road to independence.
Cheers, Gail
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Date: Sun, 27 Jul 2003 13:41:35 -0700
Reply-To: "Carole K. Menser" <[log in to unmask]>
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From: "Carole K. Menser" <[log in to unmask]>
Subject: Re: Quality of living improved with 2 boards.
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Gail --
Great suggestion! Thanks.
Carole M.
----- Original Message -----
From: "Gail Vass" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Sunday, July 27, 2003 1:39 PM
Subject: Quality of living improved with 2 boards.
> Folks,
>
> A coupla' ma'buddies have a hard time standing up
> from sittin'' in a chair.
>
> They rock forward, hold the arm rests and try to stand.
> More times than not they fall back into the seat.
>
> Weakness and balance problems often require them
> to try a coupla times to get up.
>
> I slipped a 2 by 6 board under their reclinin'' chair's legs
> [in one case and under sofa legs in another case] ...and
> PRESTO...they were able to stand with only one try.
>
> Victory and self reliance feels good.
>
> Think about anyone who might be helped by this simple
> solution. I went to Home Depot and got scraps of 2 by 6
> boards [ really 1 1/2 X 5 1/2] for less than a dollar. That
> 1 and 1/2 inches to raise a chair or sofa put them back
> on the road to independence.
>
> Cheers, Gail
>
> ----------------------------------------------------------------------
> To sign-off Parkinsn send a message to:
mailto:[log in to unmask]
> In the body of the message put: signoff parkinsn
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Date: Mon, 28 Jul 2003 01:41:31 +0100
Reply-To: Marco De Michiel <[log in to unmask]>
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From: Marco De Michiel <[log in to unmask]>
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A number of you have replied to my recent postings and I would like to
answer some of the questions and add one or two further pieces of
information.
First of all(Maxine) I would like to say that I do understand that the
purpose of the group is to offer support to each other and provide
information on developments and research regarding identifying causes and
potential new therapies. I apologise if I have offended any of you in any of
my previous postings by venting my frustrations.
There is a greater awareness these days because of the work of people like
Michael J. Fox but we also can make a contribution by simply providing more
data from our personal histories - which can be the nucleus of a greater
database - such that possible causes can be identified. I do not believe
that the present diagnostic procedures go deep enough in personal histories.
It is no longer just affecting older people but younger people more and more
year by year.
What has changed in the last 40 to 50 years? Work has become more
stressful. Environmental changes. Greater prescription of drugs. Greater
use of chemicals in the food chain. Greater use of soft and hard drugs.
Inadequate control of toxic materials in industry (Roberta, did your father
use Mercury in his job?). Inadequate health and safety controls. To name
just a few. It is reasonable to say that possible causes are related to one
or more of these areas. In my case I know for sure that an antidepressant
was the cause.
My experience was that the neurologist (and my GP) based his findings on
the simple physical and visual analysis. I believe that when I answered
some questions I mentioned my clinical depression and medications which were
prescribed; and my susceptibility to anxiety and stress, primarily caused
through work. None of this was taken into account. This was in 1993. In
2001 I began seeing a homeopath and it was through her and my open
conversations that I discovered the antidepressant (Prothiaden) which I had
been prescribed from August 1988 through to January 1990 was documented as
inducing Parkinson's. I am almost certain that my neurologist knew this but
did not say anything. I informed the psychiatrist and I had been under that
I had been told I had Parkinson's; she never answered by phone call -- I
wonder why! A senior registrar at a neurological rehabilitation unit
described the particular antidepressant as being, "a very nasty drug". This
has been withdrawn.
A couple of years ago I had the opportunity to talk to a physiotherapist who
specialised in working with the Parkinson's unit in hospital in the North of
England. I described what I was doing regarding medications and
complimentary therapies. To keep a long story short just let me say that
she said to me, "if you were my husband I would not let you take sinemet".
(Roberta) I've been taking pergolide (Permax) as a monotherapy since
February 1999. Within two months of starting this the improvements to my
life were almost miraculous in that I was able to do virtually everything
for myself once more. By the fourth month I was able to drive my car with
complete confidence and control and I started taking my dog for long
walks -- at least one and half miles -- each day. In the fifth month at a
review my neurologist tripled the dosage to 3 mg per day (that's 1 mg three
times a day). He did this because "it's the recommended maintenance level".
Once again he took no account of my susceptibility to anxiety which affects
my mobility. Since January 2000 my mobility has become more difficult and I
suffer with swollen legs and ankles. I can still drive with confidence and
control unfortunately I cannot take my dog long walks. Eight weeks ago I
decided to reduce my intake to 2 mg per day and slowly but surely I am
walking a bit more each day. The only other problem I seem to have is
sleeping. For the past two years I haven't slept straight seven nights in
bed at all! I find going to sleep almost impossible that in the end I'm so
exhausted that I crash out in the chair usually in front of the PC.
However, just this week I started going to bed and sleeping six hours
minimum. Last week I attended my second daughter's wedding, completely
mobile and unaided -- nobody would have thought I had Parkinson's.
About almost two years ago I started taking sinemet (3 times a day -- 62, 5)
because my GP described me as being seriously under medicated. Again I felt
he wasn't listening to my problems of anxiety and emotional stress caused by
the collapse of my marriage. At one point I cried and he concluded that I
was clinically depressed -- when he returned a week later I asked him,
"can't a man cry without being depressed "? He didn't even answer!
Let me say at this point that I'm sharing my story with you and in no way am
I advocating you do anything different to your regime because of what I am
saying. The message I'm trying to convey is one of believing in one's self
and not simply accepting what we are told and, for the sake of repeating
myself, the importance of establishing the database. We owe it to ourselves
to find out the likely cause(s) of our individual PD and I feel morally that
we have a responsibility to help future generations by forcing change.
I thank all of you for the support and encouragement you have shown me since
I joined the group two years ago. I just wish we could all be closer
together so we could actually meet face-to-face.
All my best wishes.
Marco.
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Date: Mon, 28 Jul 2003 03:58:39 -0700
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From: Murray Charters <[log in to unmask]>
Subject: Christopher Reeve: Israel Is At Center Of World Research On
Paralysis
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Christopher Reeve: Israel is at center of world research on paralysis
By ISRAEL21c staff July 27, 2003
Calling Israel the "world center" for research on paralysis treatment, Christopher Reeve set off for his first visit to
the country this week.
Over the course of his visit, Reeve will learn about Israeli advancements in the field of stem cell research related to
paralysis and spinal cord injuries.
The theater and film actor who portrayed 'Superman', suffered a horseback-riding accident in 1995 during an equestrian
event which left him paralyzed from the neck down.
"I am looking forward to visiting Israel to learn more about their cutting edge paralysis research as well as their
approaches to addressing the quality of life of those living with paralysis," said Reeve. "Israel is the center of some
of the world's leading research related to paralysis. There are many new therapies in the pipeline as well as care
strategies being employed that may also benefit millions of people around the world living with paralysis. This
includes therapies derived from stem cell research."
Reeve is the chairman of the Christopher Reeve Paralysis Foundation (CRPF). According to his spokesperson Juda S.
Engelmayer, the four-day trip is a scientific, fact-finding mission to learn about Israel's research on treatments
for spinal injuries and to visit with people living with disabilities in the region. Reeve plans to meet with Israeli
doctors and researchers working on remedies for paralysis caused by spinal cord injuries and other central nervous
system disorders.
Reeve is a strong supporter of stem cell research, which some experts believe may unlock a way of reversing the often-
debilitating effects of spinal injuries. He believes a cure for paralysis is close at hand.
"Help is on the way, it really is," Reeve said recently. "It's going to transform everything and mean a great deal to
people with brain injuries and spinal cord injuries as well," he said.
Accordin to Engelmayer, Reeve specifically requested to meet with neuroimmunologist Michal Schwartz of the Weizmann
Institute in Rehovot.
"I think that Israel is one of the countries that is leading the way in medical research, in particular with diseases
and conditions that affect the central nervous system. Israeli researchers are some of the best in the world," Reeve
told The Jerusalem Post. "She [Schwartz] and some of her colleagues are doing particularly well in treating patients
immediately after spinal cord injuries in what is called the acute phase. If a person can be treated right away, within
the first 10 days after the injury, it will have dramatic effect in what their life will be."
Schwartz described her team's approach of therapy as "different than any other group in the world."
The work is being carried out by an Israeli company called Proneuron Biotechnologies, Inc. The therapy, recently
completed phase 1 FDA approved clinical studies, demonstrated preliminary promising results with the first
patients. With these results, the company is expecting the U.S. Food and Drug Administration (FDA) to approve plans for
Phase II testing of the therapy to begin this summer in the US.
Proneuron's treatment, involves isolation of macrophages from the patient's blood, processing in the laboratory and
then injection of the cells into the spinal cord in the vicinity of the area of damage. The treatment, which must be
provided within 14 days of spinal cord injury, requires a surgical procedure to open the spine for the injection of the
macrophage cells into the spinal cord.
"The technology is based on the individual's own potential within his immune system. It's a revolutionary approach to
using the immune system," Dr. David Snyder, Vice-President of Clinical Development at Proneuron, told ISRAEL21c. "We
licensed the technology from Weizmann and have turned the idea into an
application. And we're in the process of bringing it to the clinic."
The Phase I trials included patients from around the world who were flown to Israel for treatment and follow up -
including patients from Holland, Mexico, Poland, and the U.S.A.
"It tells you something. Doctors from all over the world sent their patients to Israel for a month - in the middle of
this conflict - and that the families of the patients also came. From a patient perspective - there are no clinical
alternatives," said Snyder.
During his visit Reeve is also planning to meet Israelis who have suffered similar injuries to him, including Ethiopian
immigrant Elad Wass. Wass was a victim of a suicide bombing in Netanya in May. The shrapnel that entered
Wassa's abdomen left him paralyzed from the waist down. Wassa expressed a wish to meet the actor in a letter, saying
that Reeve provided him with "hope and inspiration."
"Israel is a very small country yet there are many people suffering with disabilities. It is a particularly troubled
area of the world bombings and shootings have resulted in many injuries and disabilities," said Reeve.
Accompanied by nurses, aides, and a team to meet his day-to-day needs, Reeve will travel on a regular commercial
flight. His itinerary includes stops at research centers, hospitals, rehabilitation facilities, and centers for
children with diseases and disabilities. He will meet with government leaders and will also tour the sights, including
Yad Vashem and the Old City of Jerusalem. According to the organizers of the trip, the Old City tour is specially
designed for disabled people.
"Long ago not very much could be done to improve the lives of injured. There were told to go home and live life with no
hope for improvement," Reeve said. "In my own case, I was told I would never recover any movement below my
shoulders; I have been exercising every day and recovered much more movement than was ever thought possible."
The Christopher Reeve Paralysis Foundation, of which Reeve is chairman, has distributed $45 million in research grants
to neuroscientists throughout the world. In effect, he is kept informed of the progress that scientists are
making and is able to confirm that "there is a lot of very promising research going on all over the world."
"When I was injured in 1995, scientists were nowhere near being ready to try therapies on human beings and now in 2003
there are human trials under way and other planned for the near future. I am fortunate to be informed about progress
being made and I want to tell others who are disabled about such research," Reeve told The Jerusalem Post.
"There is progress being made in research, there is hope. Scientists are making tremendous progress, not just in spinal
cord cases but with all diseases and disorders. Science is advancing rapidly; there are now new therapies, exercises,
and equipment. Nothing is impossible. It is important for all of us living with disabilities to try our very best to
challenge ourselves to do more. No one should accept it when someone says this is the way you will be forever. The
possibilities are limitless."
Related Sites:
Israel Academy of Sciences and Humanities
http://www.academy.ac.il/english/netscape/default.html
Reports of the Bioethics Advisory Committee
http://stwww.weizmann.ac.il/bioethics/reports-e.html
SOURCE: Israel 21C, CA
http://tinyurl.com/i7ha
http://www.israel21c.org/bin/en.jsp?enPage=BlankPage&enDisplay=view&enDispWhat=object&enDispWho=Articles%5El462&enZone=H
ealth&enVersion=0&
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Date: Mon, 28 Jul 2003 17:25:53 EDT
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From: Rayilyn Brown <[log in to unmask]>
Subject: DBS programming
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many thanks to all my good friends and well--wishers on List. Two days ago
tremor returned on left side, not as bad as before. hoping 2nd programming on
Aug 7 will correct this setback, love, ray
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