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Date: Sat, 5 Jan 2002 06:37:05 -0800
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Murray Charters <[log in to unmask]>
Subject: Re: S.O.S. / Job Elimination
Comments: To: Carole Hercun <[log in to unmask]>
In-Reply-To: <[log in to unmask]>
MIME-Version: 1.0
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Good Morning Carole and Good Morning All,
I'm sorry to hear of your dillema re: employment...
Don't they know the value of a lil' red headed girl?
Check this site out (note the author's name is Carol)
http://www.youachieve.com/telus/article_frm.asp
I wish you all the best ...... murray
On 4 Jan 2002, at 5:17, Carole Hercun wrote:
> Dear Friends:
> The members of PIEN are some off the smartest, most
> well-informed people I know. You are a virtual encyclopedia
> of resources. So I have come to you with for help with an
> urgent problem.
> I have long debated how long I could continue my job as a
> job as a psychiatric nurse. Several months ago, I
> voluntarily decreased my hours from 40 to 30. I thought I
> could maintain at that level for a while, since I worked in
> the out-patent part of the hospital, with regular hours,
> M-F, more stable patients,and lots of computer/desk duties,
> with frequent opportunities to rest.
> Yesterday I was informed that my job would be eliminated in
> two weeks. I was given the option of working the in-patient
> units. Which, of course, they realize I cannot do. Rotating
> shifts, week-ends & holidays, extremely ill patients,
> frequent codes, and incessant stress. Not something a 55
> year old PWP can handle.
> I know they can't discriminate against me because of my
> disability, but can they simply eliminate me? What should I
> do next? I thought I had time to mull over my options.
> Unfortunately, since the hospital ambushed me, the time is
> NOW.
> Carole Hercun
>
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Date: Sat, 5 Jan 2002 06:35:33 -0800
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: TED
Comments: cc: [log in to unmask]
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Hello --
Hooray! For the first time saw an improvement in Ted yesterday morning. =
He is going off dilantin and on more tegretol. They also took him off =
amantadine as it lowers the seizure threshold. He was hooked up to EEG =
for 7 hrs yesterday. Visible focal seizures about once every hour but =
shorter and milder. And he can hear us during them. Of course he is =
tired and confused by the end of the day. They are also going to =
monitor his PD meds. Cut back on sinemet, off requip and remerol for =
awhile. Still on tasmar. Neuro came in last night. I am trying to =
work with the attending doc but must talk to him about what I need to do =
to get rid of this neuro entirely. I talked to Ted about it and he said =
"Dr. ---- is no good." At least we are in agreement about that!!!
Thanks to those who have messaged me complimenting my advocacy skills. =
However, I am a social worker/victim's rights advocate by profession. =
The way I really look at it is this: I talk to God about all of this =
and everybody else (docs included) are definitely lower in the pecking =
order than that.
Keep praying, please.
Carole
spouse of Ted 54/46/40
=20
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Date: Sat, 5 Jan 2002 09:57:11 -0500
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Emily and Julian Brinac <[log in to unmask]>
Subject: Re: leg/foot cramps
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
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Barbara, you may remember me from before. (We are from Wiarton, Ontario. =
My husband has PD.)I am a little involved in alternative medicine. =
However, our family doctor advised me years ago to take 400 units of =
vitamin E and not more than 800 units daily. He said he does not know =
why vitamin E helps but it does. I know that vitamin E increases =
circulation and, of course, this would help with cramps. I am also =
giving myself B 12 injections montly prescribed to me by the preventive =
doctor as I was going to Toronto for chelation therapy. I also take MSM =
which is good for inflamation. If you have Parkinson, you may have =
different set of circumstances. Whatever the situation, I strongly =
recommend good vitamin E capsules for leg cramps.
Best regards,
Emily
----- Original Message -----=20
From: barbara=20
To: [log in to unmask]
Sent: Saturday, January 05, 2002 6:12 AM
Subject: leg/foot cramps
Hello Eveyone,
Has anyone taken MSM or used B12 injections for cramps?
Please write to me directly, I am not receiving listserv digest.
Thank you,
Barbara
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Date: Sat, 5 Jan 2002 08:02:35 -0800
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Bonnie Clay Riley <[log in to unmask]>
Subject: Re: A Hallmark E-Card from Edith
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
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Edith
I enjoyed it and now I am running around buying things at boxing day prices.
----- Original Message -----
From: "Edith Love" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Monday, December 24, 2001 9:39 PM
Subject: A Hallmark E-Card from Edith
> Greetings!
>
> We wanted to let you know that Edith created a Hallmark.com e-card for
you. To see your card, click the link below, or copy and paste this link
into your Web browser's address line:
>
http://ecardview.hallmark.com/hmk/Website/greeting.jsp?id=EG3129-803032-4670
162
>
> If you have trouble using the link we provided, please follow these steps:
>
> 1. Click this link to go to our homepage, or copy and paste it into your
browser's address line:
> http://www.hallmark.com
> 2. Click on the "e-cards and cards" link.
> 3. Click on the "browse free e-cards" link in the e-cards section of the
page.
> 4. Click on the link on the upper left hand side of the page that says
"pick up a greeting."
> 5. Enter your email address and this retrieval number: EG329030670162.
This e-card will be available for 90 days.
> 6. If you'd like to send an e-card yourself, use the "send your own
greeting" button beside the e-card.
> Enjoy!
>
> While you're visiting Hallmark.com, be sure to explore our other products.
We offer paper cards, great gifts, beautiful flowers and more. And our
e-cards are fast, fun, and free. You're sure to find something you like at
Hallmark.com.
>
> With best wishes,
>
> Jody Ellis
> Hallmark.com
>
> P.S. Your privacy is our priority. To see our online Privacy and
Security statement, please use this link:
>
http://www.hallmark.com/hmk/Website/goto.jsp?CONTENT_KEY=FOOTER_PRIVLEGL&CON
TENT_TYPE=ARTICLE
>
> ----------------------------------------------------------------------
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>
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Date: Sat, 5 Jan 2002 11:39:21 -0600
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Jo Ann Coen <[log in to unmask]>
Subject: Non PD
MIME-Version: 1.0
Content-Type: text/plain
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C. Gray - I planned to answer your question about my love and accidently
hit the delete button instead of reply, and of course, I eliminated your
e address. Please send it to me. I'll probably end up writing you a
book about it. Best wishes, Jo Ann
----------------------------------------------------------------------
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Date: Sat, 5 Jan 2002 11:00:10 -0600
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Jo Ann Coen <[log in to unmask]>
Subject: Re: S.O.S. / Job Elimination
MIME-Version: 1.0
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Carole, I agree with the post about disability insurance. My love
applied for it and received it within two months. Thank goodness for
small favors. In fact, it might be as much as you made by dutting back
your hours. Just another option for you. Jo Ann
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Date: Sat, 5 Jan 2002 10:32:55 -0600
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Jo Ann Coen <[log in to unmask]>
Subject: Re: S.O.S. / Job Elimination
MIME-Version: 1.0
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Carole - Just now reading my messages, but get in touch with the people
who run the American disabilities Act, or a good lawyer familiar with
that type of case. The hospital can call it what it wants to, but it a
disability discrimination act if I ever saw one. In the meantime, maybe
you can find a good part-time job in a private office. Best wishes to
you. I hate to see you go through this kind of B.S. at this time of your
disease. Jo Ann
----------------------------------------------------------------------
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Date: Sat, 5 Jan 2002 11:44:23 -0800
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
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From: Murray Charters <[log in to unmask]>
Subject: Jim Finn on CBC Radio One - "Being Human"
MIME-Version: 1.0
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CBC Radio One
Keep up-to-date with ideas and information that challenges, amuses,
and informs. CBC Radio One presents the latest developments in the
community from across Canada and around the world.
CBC Radio One on the WWWeb:
http://www.cbc.ca/radioone/
The Sunday Edition, hosted by Michael Enright, has a relaxed
tone and pace to suit the weekend time-slot. Interviews tend
to be reflective and are allowed to expand. Here you will also
find a particularly eclectic mix of music featured.
The program, heard Sundays at 9:11am (9:41NT) begins with
Michael's pointed essay on the events of the past week.
The lead story takes a provocative subject and explores
the idea - conversation often enhanced by sound, archival clips,
and music.
In the second hour of the program, the feature documentary
explores a wide range of subjects, showcasing some of the
best documentary makers in the world.
The third hour includes Aging Dangerously, a regular series
of conversations with people who attack aging with enthusiasm,
often embarking on new challenges in their senior years.
http://radio.cbc.ca/programs/thismorning/sunday.html
Sunday Edition, January 05, 2002
Being Human: Bob Carty launches a 6 part series called
"Being Human." The series is an indepth look at how
medical technologies could change our humanity.
His documentary "Who are the Guinea Pigs?" looks at
xenotransplantation, the transplantation of living cells,
tissues and organs from one species to another species.
Jim Finn is featured in the documentary. He is a former
late-stage Parkinson patient who talks about his affliction,
the xenotransplantation using pig embryo cells, and the
results. Bob Carty's series continues throughout the week
on This Morning.
http://radio.cbc.ca/programs/thismorning/index_newsite_sundaypromo.html
CBC Radio One & Two Station Lists
For a complete list of locations where CBC Radio One & Radio Two
is broadcast in your province, please use the following pull-down
menu:
http://www.cbc.ca/radio_all/frequencies.html
Vancouver CBC Radio One AM 690
http://www.vancouver.cbc.ca/schedules/radio/sched_radioone_van.html
Sooo, it sounds like Jim Finn will be in the 2nd. hour ie: 10:00 - 11:00
You can listen in around the world by going to:
http://www.cbc.ca/audio.html OR...
Listen via the Internet here...
http://radio.cbc.ca/programs/thismorning/listen.html
Audio Software: RealMedia Player;
RealMedia Download and install help;
Windows Media Download;
Quicktime Player.
all downloadable at:
http://www.cbc.ca/audio.html
Cheers ...... murray
* * *
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Date: Sat, 5 Jan 2002 16:14:32 -0800
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: MORE ON TED
Comments: cc: [log in to unmask]
MIME-Version: 1.0
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Well, today was not the best day. Of course Ted is getting a lot more =
tegretol but was really not with it today. Hasn't been up in three days =
to walk or anything. Moved bowels yesterday with a suppository but =
nothing since last weekend. I'm really tired so know that it is =
affecting my attitude. Talked to the attending docs. They don't want =
me to dump the neuro right now so I am back to frustration time. They =
did suggest we might ask him to help us find another doctor. I'm sure =
that will play well in Peoria. EEG tech said that he didn't see the =
typical seizure pattern but he is not the one who reads the EEGs either. =
Neuro does . . . oh joy. All the tests keep coming back fine except =
the EEG. If I could just get him out of the hospital improved we would =
find another doc on our own. To me, he isn't even a safe discharge at =
this point in time but I feel like the neuro really doesn't have any =
sort of plan. Hospital pharmacist came down today to talk to me about =
the PD meds and especially the sinemet. Thought maybe that might be =
causing the problem. Today I feel like one step forward and three =
backward. Not sure what to do any more.
Bye for now . . .
Carole=20
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Date: Sat, 5 Jan 2002 16:17:23 -0800
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: Neurontin
Comments: cc: [log in to unmask]
MIME-Version: 1.0
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Could whoever sent me the message about the neurontin (Debby???) please =
resend that. =20
Thanks!
----------------------------------------------------------------------
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Date: Sat, 5 Jan 2002 21:04:24 -0800
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: Resource
Comments: To: SPARKLE <[log in to unmask]>
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
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Hi, Everyone,
The following URL might prove interesting if it's not already in your
address book.
http://www.exclusivelyseniors.com/resources.asp
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Date: Sat, 5 Jan 2002 21:48:10 -0800
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: BETTER NEWS!
Comments: cc: [log in to unmask]
MIME-Version: 1.0
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Back from the hospital tonight. Ted much better than earlier today. =
Neuro is "so pleased with the way the Tegretol is working." Upping it =
to 1600 mg. tomorrow. Funny thing about that is that neuro would still =
have him on dilantin if I hadn't refused that treatment and asked that =
he be weaned off and put on Tegretol. He was up to go to the bathroom =
(success!!!). Hope the details aren't too graphic.
Not out of the woods yet but maybe headed there. =20
Carole
spouse of Ted 54/46/40 =20
----------------------------------------------------------------------
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Date: Sat, 5 Jan 2002 22:24:54 -0800
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Jim Turnbull <[log in to unmask]>
Subject: Jim Finn on CBC this Sunday Morning = Sunday Edition - CBC
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Hello again, Everyone:
I am looking forward to hearing more about Jim Finn's
interview
on the CBC (the Canadian Broadcasting Corporation). I
am lucky
enough to live within their range, and can vouch for
the quality
of their programming (somewhat similar to our own NPR
(National
Public Radio).
I have reviewed Jim's web-site and am extremely
impressed by
it. I understand that my friend Janet has had a hand
in it.
It's wonderfully organized, and speaks to the "gold"
that is
there for the mining in this List's archives (where I
have
been spending a great deal of my time lately!).
I found the CBC webpage describing the program in some
detail,
and it also has a direct link to the webpage where one
can
listen to the radio program live over the internet. It
starts
this morning (!) at 09:11 a.m. (such precision!) but I
get the
impression that Jim's segment will not be the first
item. See
below.
I'm not sure how the various time zones across the
country are
handled, but I understand that the show will be
archived in
Real Audio sound files on the CBC website. I notice
that tapes and
transcripts are also available.
>From one Jim to another, Bravo! and, How do you do it
all?
Best regards,
Jim Turnbull
http://radio.cbc.ca/programs/thismorning/index_newsite_sundaypromo.html
this week on the program
Sunday Edition, January 05, 2002
Skidelsky on Keynes: Join Michael Enright in
conversation with Lord Robert Skidelsky, an economic
historian and much acclaimed biographer of one
of the most respected economists of all time John
Maynard
Keynes. Lord Skidelsky has written and lectured
extensively on post-collectivisation, Thatcherism and
the
welfare state, and Eastern Europe. Websites:
Fighting for Britian , The Future of Russia , Francine
Stock
interviews Lord Robert Skidelsky , The Lionel
Gelber Prize , Criticism of NATO
Being Human: Bob Carty launches a 6 part series
called "Being Human." The series is an indepth look at
how medical technologies could change our
humanity. His documentary "Who are the Guinea Pigs?"
looks at
xenotransplantation, the transplantation of
living cells, tissues and organs from one species to
another
species. Jim Finn is featured in the
documentary. He is a former late-stage Parkinson
patient who talks about
his affliction, the xenotransplantation using
pig embryo cells, and the results. Bob Carty's series
continues
throughout the week on This Morning.
Hank Williams: Hank William's life was short -
he didn't live to see thirty, but he's still known as
the best
country singer of all time. The Alabama singer
died in the backseat of a car on his way to a New
Year's day
concert in 1953 - 49 years ago this week. A new
book about Hank Williams was compiled by Colin Escott,
a
music historian, and Kira Florita, who produced
a grammy winning Hank Williams complete boxed set of
recordings. Their book is "Hank Williams:
Snapshots from the Lost Highway." Websites: Official
Hank
Williams website , Hank Williams Sr. , New
Recordings Honouring Hank Williams
Jim Finn's website is here:
www.geocities.com/jimcfinn/
__________________________________________________
Do You Yahoo!?
Send FREE video emails in Yahoo! Mail!
http://promo.yahoo.com/videomail/
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Date: Sun, 6 Jan 2002 06:28:41 -0500
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: "Kathrynne Holden, MS, RD" <[log in to unmask]>
Organization: Five Star Living, Inc.
Subject: Re: BETTER NEWS!
Comments: To: "Carole K. Menser" <[log in to unmask]>
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
"Carole K. Menser" wrote:
>
> Back from the hospital tonight. Ted much better than earlier today. Neuro is "so pleased with the way the Tegretol is working." Upping it to 1600 mg. tomorrow. Funny thing about that is that neuro would still have him on dilantin if I hadn't refused that treatment and asked that he be weaned off and put on Tegretol. He was up to go to the bathroom (success!!!). Hope the details aren't too graphic.
>
> Not out of the woods yet but maybe headed there.
Carole, I'm truly grateful for this news -- maybe all our prayers are
being answered. You have done a heroic job of caring for him, I hope
you're taking time out to pat yourself on the back.
Ted is the third PWP I'm aware of whose condition worsened when he was
put on Dilantin by a physician, and improved when the family intervened
to have the Dilantin removed.
Best,
Kathrynne
--
Kathrynne Holden, MS, RD
"Ask the Parkinson Dietitian"
http://www.parkinson.org/
Author: "Eat well, stay well with Parkinson's disease"
"Guidelines for Medical Nutrition Therapy for Parkinson's disease"
http://www.nutritionucanlivewith.com/
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Date: Sun, 6 Jan 2002 11:24:58 EST
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Roberta Nelson <[log in to unmask]>
Subject: Help for Sleep/Anxiety..?
MIME-Version: 1.0
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I would greatly appreciate finding out what is considered 'safe' for sleep
help for PWP's using Sinemet & Eldepryl. Apparently, most of the usual drugs
for these problems may not be used. The only class of drugs I have found so
far not contra indicated is the Benzodiazepines. My husband, 68, male, PD
for 8+ years (Sinemet 10/100 3-4 X day, Eldepryl 5 mg 1 X day) is currently
having a horrible time as bedtime comes. He gets anxious and restless. He
has somewhat of a phobia about sleep time because he has SO much trouble
going to and/or staying asleep (also has all the 'usual' PD nightmares,
verbalization, thrashing, etc.) He sleeps little, and intermittently. It is
becoming an overwhelmingly disturbing issue for him.
I am researching this in several places, but would like to have your input --
what have you used/found to be helpful?
He has tried Xanax and Vallium, neither seems to have much of an impact. I
believe that an anti-anxiety drug may be a good choice. Before we go back to
the Doctor (who is not very helpful) I would like to compile a list of drug
possibilities.
Therefore, I ask -- what has worked for you -- what would you suggest?
Would an 'extra' Sinamet at bedtime be helpful?
Thank You for any advice
Roberta, CG for Clyde
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Date: Sun, 6 Jan 2002 11:39:53 EST
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: [log in to unmask]
Subject: Re: Help for Sleep/Anxiety..?
MIME-Version: 1.0
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simple over the counter Benadryl can be very helpful. My husband has tried
several different sleep meds, without much help. One interacted badly with
his PD meds, leading to 'psychotic' episodes and an overnight stay in the
hospital. He is currently on lorazepan, which he takes for anxiety, one pill
in with his first dose of meds, another with his second dose and then two
with his fifth and last dose of meds for the day, which I believe helps him
sleep better. He still doesn't sleep great but seems to be doing a little bit
better.
He also takes Aricept, Sinemet, Sinemet CR and Mirapex.
Pamme/cg John
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Date: Sun, 6 Jan 2002 11:48:22 -0500
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Mary Ann Ryan <[log in to unmask]>
Subject: Re: BETTER NEWS!
MIME-Version: 1.0
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> Ted is the third PWP I'm aware of whose condition worsened when he was
> put on Dilantin by a physician, and improved when the family intervened
> to have the Dilantin removed.
> Kathrynne
>
Wow, Kathrynne, thanks for this very important info. I've been following
Ted's progress but didn't have a clue as to what was going on.
In severe cases of PD, anecdotal information is very important. It is
critical for care givers on this list to take case reports about drug
information very seriously - we never know when our loved ones will be the
next victims of whatever drug reaction is being discussed. As a nurse, I
know that it is impossible for all drug interactions to be reported in the
PDR.
I pray that Ted will continue to get better. I'm sorry about the problems
that Carole has had with their neuro.
Carole, if you're out there, it is your right to change neuros in the
hospital - no matter what the recommendation of the medical staff may be.
You're the one who is paying for the service that Ted is receiving. Like
all consumers, you have a right to say you don't like the product you've
bought and want a new one. Doctors are like state-of-the-art computers.
They might be rare and expensive, but there is always a comparable one out
there that can meet your needs more effectively.
-----
God bless
Mary Ann
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Date: Sun, 6 Jan 2002 17:45:27 -0800
Reply-To: Parkinson's Information Exchange Network
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Sender: 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
THANKS FOR YOUR CONCERN ! ---Camilla
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Date: Sun, 6 Jan 2002 12:45:36 -0500
Reply-To: Parkinson's Information Exchange Network
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Sender: Parkinson's Information Exchange Network
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From: "Kathrynne Holden, MS, RD" <[log in to unmask]>
Organization: Five Star Living, Inc.
Subject: Re: BETTER NEWS!
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Mary Ann Ryan wrote:
> Wow, Kathrynne, thanks for this very important info. I've been following
> Ted's progress but didn't have a clue as to what was going on.
>
> In severe cases of PD, anecdotal information is very important. It is
> critical for care givers on this list to take case reports about drug
> information very seriously - we never know when our loved ones will be the
> next victims of whatever drug reaction is being discussed. As a nurse, I
> know that it is impossible for all drug interactions to be reported in the
> PDR.
True, and also, I understand that physicians must weigh risks vs
benefits when deciding on the best medication. However, Dilantin is
among the medications listed by NPF and other sources as contraindicated
for those with PD, and I always mention it whenever someone reports
their PWP has been given Dilantin. Twice previously, the CG reported
back to me that the individual was taken off Dilantin and subsequently
improved.
I know there may be times when Dilantin is the best possible solution,
but I also believe there are health professionals who aren't aware of
its possible effects on people with PD. This isn't surprising, as many
health professionals see very few people with PD in the course of their
careers, thus have little experience to draw upon. But it makes it
doubly important to make this information more widely understood.
Best,
Kathrynne
--
Kathrynne Holden, MS, RD
"Ask the Parkinson Dietitian"
http://www.parkinson.org/
Author: "Eat well, stay well with Parkinson's disease"
"Guidelines for Medical Nutrition Therapy for Parkinson's disease"
http://www.nutritionucanlivewith.com/
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Date: Sun, 6 Jan 2002 13:29:01 -0500
Reply-To: Parkinson's Information Exchange Network
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Sender: Parkinson's Information Exchange Network
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From: Emily and Julian Brinac <[log in to unmask]>
Subject: Re: New question for Kathrynne Holden
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Kathrynne, since you are a dietician and I was as a care giver on your =
Web site, I wonder if you can help me understand why my husband, just =
diagnosed with Parkinson is steadily losing weight. He is on the same =
diet as before, his bowel movements did not change, the only thing that =
is worring me is that his dominant hand shaking appears to be worse. At =
the moment he is not on any drugs for PD as he is waiting to see a =
neurologist. Our family doctor seems surprised with his weight loss and =
did not offer anything to explore other than basic blood tests. Do you =
have any suggestion? Is he Parkinson Plus case? Thank you for your =
thoughts.
Emily=20
----- Original Message -----=20
From: Kathrynne Holden, MS, RD=20
To: [log in to unmask]
Sent: Sunday, January 06, 2002 12:45 PM
Subject: Re: BETTER NEWS!
Mary Ann Ryan wrote:
> Wow, Kathrynne, thanks for this very important info. I've been =
following
> Ted's progress but didn't have a clue as to what was going on.
>
> In severe cases of PD, anecdotal information is very important. It =
is
> critical for care givers on this list to take case reports about =
drug
> information very seriously - we never know when our loved ones will =
be the
> next victims of whatever drug reaction is being discussed. As a =
nurse, I
> know that it is impossible for all drug interactions to be reported =
in the
> PDR.
True, and also, I understand that physicians must weigh risks vs
benefits when deciding on the best medication. However, Dilantin is
among the medications listed by NPF and other sources as =
contraindicated
for those with PD, and I always mention it whenever someone reports
their PWP has been given Dilantin. Twice previously, the CG reported
back to me that the individual was taken off Dilantin and subsequently
improved.
I know there may be times when Dilantin is the best possible solution,
but I also believe there are health professionals who aren't aware of
its possible effects on people with PD. This isn't surprising, as many
health professionals see very few people with PD in the course of =
their
careers, thus have little experience to draw upon. But it makes it
doubly important to make this information more widely understood.
Best,
Kathrynne
--
Kathrynne Holden, MS, RD
"Ask the Parkinson Dietitian"
http://www.parkinson.org/
Author: "Eat well, stay well with Parkinson's disease"
"Guidelines for Medical Nutrition Therapy for Parkinson's disease"
http://www.nutritionucanlivewith.com/
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Date: Sun, 6 Jan 2002 13:48:34 -0500
Reply-To: Parkinson's Information Exchange Network
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Sender: Parkinson's Information Exchange Network
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From: "Kathrynne Holden, MS, RD" <[log in to unmask]>
Organization: Five Star Living, Inc.
Subject: Re: New question for Kathrynne Holden
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Emily and Julian Brinac wrote:
>
> Kathrynne, since you are a dietician and I was as a care giver on your Web site, I wonder if you can help me understand why my husband, just diagnosed with Parkinson is steadily losing weight. He is on the same diet as before, his bowel movements did not change, the only thing that is worring me is that his dominant hand shaking appears to be worse. At the moment he is not on any drugs for PD as he is waiting to see a neurologist. Our family doctor seems surprised with his weight loss and did not offer anything to explore other than basic blood tests. Do you have any suggestion? Is he Parkinson Plus case? Thank you for your thoughts.
> Emily
>
Dear Emily,
Unintended weight loss is not uncommon in Parkinson's disease. There are
many possible reasons, and it may be necessary to figure out the cause
in order to deal with it. Some possible reasons for weight loss include
increased energy expenditure due to muscle rigidity, tremor, dyskinesia
or decreased efficiency of movement; difficulty chewing or swallowing,
slowed eating, choking; loss of the sense of smell and taste, appetite
loss, decreased intake of food; depression; and medication side effects.
As he is not yet taking medications, the cause lies elsewhere.
If his diet is the same as usual, and if you are sure he is eating the
same amount of food as before, then his energy expenditure has
increased. Would he be willing to eat small, nourishing snacks between
meals? I have clients who have successfully regained not only weight but
muscle mass by increasing snacks and walking daily.
The topic of weight loss has come up many times on "Ask the Dietitian."
If you have time, I suggest you search the archives, to see if any of
the questions and answers are helpful to your circumstances. Go to:
http://www.parkinson.org/
Click "Ask the Parkinson Dietitian" and follow the directions.
Also, many public libraries and PD support groups have lending copies of
"Eat well, stay well with Parkinson's disease." I would check out a copy
and read chapter 9 "Unplanned Weight Loss." In it I have a number of
suggestions that could be helpful for your husband.
Best regards,
Kathrynne
--
Kathrynne Holden, MS, RD
"Ask the Parkinson Dietitian"
http://www.parkinson.org/
Author: "Eat well, stay well with Parkinson's disease"
"Guidelines for Medical Nutrition Therapy for Parkinson's disease"
http://www.nutritionucanlivewith.com/
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Date: Sun, 6 Jan 2002 14:31:56 EST
Reply-To: Parkinson's Information Exchange Network
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Sender: Parkinson's Information Exchange Network
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From: "(Wayne) (Greenhouse)" <[log in to unmask]>
Subject: Re: Help for Sleep/Anxiety..?
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Roberta, my husband Wayne was having lots of trouble sleeping at night. He
recently started using the medical services of the Veteran's Administration.
When he went for his first visit with them they took him off of the drug
called Hydrocodine that had been prescribed by a private physician because of
it's addictive factor. They prescribed instead, Amitriptyline HCL, 50 mg,
for sleeplessness and he really likes how much it has helped him. He saw
immediate results. He also takes 10 mg of Paxil each night for
anxiety/depression. And ofcourse he takes Carbidopa 25/Levodopa 100. God
Bless you, Sylvia
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Date: Sun, 6 Jan 2002 15:25:02 -0600
Reply-To: [log in to unmask]
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: samantha pudge <[log in to unmask]>
Organization: QUALCOMM Eudora Web-Mail (http://www.eudoramail.com:80)
Subject: Re: Help for Sleep/Anxiety..?
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benadryl helps me also.
use dramaine for motion sickmees. it also makes me sleepy and sometimes use to help me sleep easier.
sami
--
On Sun, 6 Jan 2002 11:39:53 Peeblet wrote:
>simple over the counter Benadryl can be very helpful. My husband has tried
>several different sleep meds, without much help. One interacted badly with
>his PD meds, leading to 'psychotic' episodes and an overnight stay in the
>hospital. He is currently on lorazepan, which he takes for anxiety, one pill
>in with his first dose of meds, another with his second dose and then two
>with his fifth and last dose of meds for the day, which I believe helps him
>sleep better. He still doesn't sleep great but seems to be doing a little bit
>better.
>He also takes Aricept, Sinemet, Sinemet CR and Mirapex.
>Pamme/cg John
>
>----------------------------------------------------------------------
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Join 18 million Eudora users by signing up for a free Eudora Web-Mail account at http://www.eudoramail.com
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Date: Sun, 6 Jan 2002 16:35:20 EST
Reply-To: Parkinson's Information Exchange Network
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From: [log in to unmask]
Subject: Re: Help for Sleep/Anxiety..?
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Hi Roberta:
I am 70 yr old male, diagnosed 10 yrs. About 6 years ago I began having
similar difficulties with sleep - very hard to get to sleep and staying
asleep. Five years ago I switched from a neurologist in town to the
Movement Disorder department at Mayo Clinic here in Jacksonville, Florida.
About 2 years ago my insomnia became so debilitating that the doc referred me
to Mayo's Sleep Center where there is a doctor that specializes in treating
PWP. After usual screening, Dr. Lin pronounced the problem was lack of the
chemicals necessary for sleep and we began a long period of testing to see
what would work. We found several drugs worthless or with bad side effects.
The one we settled on was Remeron 15mg taken every night 1 hour before
bedtime. But Remeron does not always get me to sleep, so with the doctor's
blessing, I take Melatonin 3mg at bedtime to get me to sleep. This
combination works well most of the time.
Good Luck!
Bill Butch
[log in to unmask]
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Date: Sun, 6 Jan 2002 16:30:18 -0600
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From: Sharon YR Habing <[log in to unmask]>
Subject: Re: Help for Sleep/Anxiety..?
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a 100 mg of Seroquel helps me to sleep (also take Sinemet,Mirapex, and
Amantadine)
Sharon H
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Date: Sun, 6 Jan 2002 17:54:32 -0500
Reply-To: Parkinson's Information Exchange Network
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Sender: Parkinson's Information Exchange Network
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From: Phil Tompkins <[log in to unmask]>
Subject: Re: Help for Sleep/Anxiety..?
In-Reply-To: <[log in to unmask]>
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Hello,
On 6 Jan 2002 at 11:24, Roberta Nelson wrote:
> I would greatly appreciate finding out what is considered 'safe' for
> sleep help for PWP's using Sinemet & Eldepryl.
Prescription drugs used for the sleep are discussed in the on-line
NPF booklet http://www.parkinson.org/medications.htm. Also consider
the newer drug zaleplon (Sonata).
> My husband . . . is currently having a horrible time as bedtime comes.
> He gets anxious and restless. He has somewhat of a phobia about sleep
> time because he has SO much trouble going to and/or staying asleep
> (also has all the 'usual' PD nightmares, verbalization, thrashing,
> etc.) He sleeps little, and intermittently. It is becoming an
> overwhelmingly disturbing issue for him.
It sounds like sleep has become so unrewarding that he is trying to
avoid it. He won't get much sleep that way. Perhaps some deep
relaxation techniques, or even psychotherapy, may be useful, provided
he is receptive. If I am in a deeply relaxed semi-conscious state I
am aware of tremor subsiding and I can fall asleep. (My problem is
staying asleep.)
> Would an 'extra' Sinamet at bedtime be helpful?
It may make it easier to get to sleep by eliminating troubling PD
symptoms. However, PD symptoms subside while one is asleep, so
Sinemet is generally not needed while one is sleeping. In fact it
may contribute to the verbalization and insomnia. Sinemet tends to
keep me awake at night.
Good luck,
Phil Tompkins
Amherst, MA
dx 1990/age 64
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Date: Sun, 6 Jan 2002 18:52:19 -0500
Reply-To: Parkinson's Information Exchange Network
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From: Emily and Julian Brinac <[log in to unmask]>
Subject: Re: Help for Sleep/Anxiety..?
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To ALL:
In my opinion, the right dosage of melathonin would be the most natural =
supplement to fall asleep. However, it may not interfere with other =
drugs you are taking.This should be discussed with specialist. Since =
this is a natural supplement, many doctors that are not nutrition =
oriented will not recommend it. I am a care giver, but occasionally I =
have had problems falling and/or staying asleep. I tried melathonin one =
single time and my falling asleep did not appear natural at all. =
Perhaps, the right dosage is very important. One should start with lower =
than 3Mg. This is a very powerful supplement. I understand that when =
there is no sleep in sight day after day, many are very desperate to =
take something, perhaps, anything.
Emily
Subject: Re: Help for Sleep/Anxiety..?
Hello,
On 6 Jan 2002 at 11:24, Roberta Nelson wrote:
> I would greatly appreciate finding out what is considered 'safe' for
> sleep help for PWP's using Sinemet & Eldepryl.
Prescription drugs used for the sleep are discussed in the on-line
NPF booklet http://www.parkinson.org/medications.htm. Also consider
the newer drug zaleplon (Sonata).
> My husband . . . is currently having a horrible time as bedtime =
comes.
> He gets anxious and restless. He has somewhat of a phobia about =
sleep
> time because he has SO much trouble going to and/or staying asleep
> (also has all the 'usual' PD nightmares, verbalization, thrashing,
> etc.) He sleeps little, and intermittently. It is becoming an
> overwhelmingly disturbing issue for him.
It sounds like sleep has become so unrewarding that he is trying to
avoid it. He won't get much sleep that way. Perhaps some deep
relaxation techniques, or even psychotherapy, may be useful, provided
he is receptive. If I am in a deeply relaxed semi-conscious state I
am aware of tremor subsiding and I can fall asleep. (My problem is
staying asleep.)
> Would an 'extra' Sinamet at bedtime be helpful?
It may make it easier to get to sleep by eliminating troubling PD
symptoms. However, PD symptoms subside while one is asleep, so
Sinemet is generally not needed while one is sleeping. In fact it
may contribute to the verbalization and insomnia. Sinemet tends to
keep me awake at night.
Good luck,
Phil Tompkins
Amherst, MA
dx 1990/age 64
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Date: Sun, 6 Jan 2002 16:05:01 -0800
Reply-To: "Carole K. Menser" <[log in to unmask]>
Sender: Parkinson's Information Exchange Network
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From: "Carole K. Menser" <[log in to unmask]>
Subject: Re: BETTER NEWS!
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Hi All --
Yes, take these reports very seriously. Ted is now down to 300 mg of
dilantin (pompous neuro just doesn't give up) and on about 1600 mg of
tegretol as of today. I have observed no visible seizure activity today.
He was just moved back to Intermediate Care from ICU. Frankly, I get the
impression that the neuro was rather surprised. As I said earlier, I don't
think he had any sort of plan other than dilantin. I honestly think that is
all he knows. Ted said neuro seemed almost overjoyed at his improved
condition last night. Neuro has not once contacted me to tell me anything
during all of this. He is from another culture and appears to have great
difficulty talking (down) to women. I had to go to his office and get in
his face, so to speak, about he dilantin. Problem is, the other three
neuros here aren't any better. If I can get Ted well enough without them
screwing him up any further and get him out of the hospital, we'll find
someone else. Attending doc (resident who has been wonderful!) told me to
see the Chief of Staff if necessary. Of course, he is not in on the
weekends.
They all kind of look at me now like "here she comes again." :-)
They aren't aware that this is being followed by people all over the country
and beyond its borders.
Take care all --
Carole
-----Original Message-----
From: Mary Ann Ryan <[log in to unmask]>
To: [log in to unmask] <[log in to unmask]>
Date: Sunday, January 06, 2002 8:50 AM
Subject: Re: BETTER NEWS!
>> Ted is the third PWP I'm aware of whose condition worsened when he was
>> put on Dilantin by a physician, and improved when the family intervened
>> to have the Dilantin removed.
>> Kathrynne
>>
>
>Wow, Kathrynne, thanks for this very important info. I've been following
>Ted's progress but didn't have a clue as to what was going on.
>
>In severe cases of PD, anecdotal information is very important. It is
>critical for care givers on this list to take case reports about drug
>information very seriously - we never know when our loved ones will be the
>next victims of whatever drug reaction is being discussed. As a nurse, I
>know that it is impossible for all drug interactions to be reported in the
>PDR.
>
>I pray that Ted will continue to get better. I'm sorry about the problems
>that Carole has had with their neuro.
>
> Carole, if you're out there, it is your right to change neuros in the
>hospital - no matter what the recommendation of the medical staff may be.
>You're the one who is paying for the service that Ted is receiving. Like
>all consumers, you have a right to say you don't like the product you've
>bought and want a new one. Doctors are like state-of-the-art computers.
>They might be rare and expensive, but there is always a comparable one out
>there that can meet your needs more effectively.
>-----
>God bless
>Mary Ann
>
>----------------------------------------------------------------------
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Date: Sun, 6 Jan 2002 16:44:44 -0800
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Carole Hercun <[log in to unmask]>
Subject: THANK YOU / S.O.S./Job "Elimination"
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Dear Friends:
I would like to thank all of you who responded to my
dilemma. It reaffirms my belief that you are not only the
nicest, but the smartest group in cyberspace. I have
printed out all of your e-mails,and am going to mull them
over while I decide what to do next...Carole Hercun
__________________________________________________
Do You Yahoo!?
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Date: Sun, 6 Jan 2002 20:01:31 EST
Reply-To: Parkinson's Information Exchange Network
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From: Roberta Nelson <[log in to unmask]>
Subject: Re: Help for Sleep/Anxiety..?
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To all who have responded to my question (so far) re:sleep help.
THANK YOU!
I have been away from this list for a long time, but it has not changed --
you are all still so wonderful, sharing & caring. All you have said has been
such a help.
If I can be a 'piggy' - more please!
Love & Hugs to all
Roberta
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Date: Sun, 6 Jan 2002 20:27:45 EST
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From: Rayilyn Brown <[log in to unmask]>
Subject: Re: Last Dancer Verse
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Clay, great final verse. dancing and ignoring is just what so many people
do. Makes me mad and sad. I still maintain we are not just what we look like
or how we move, but how and what we are. Rayilyn
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Date: Sun, 6 Jan 2002 21:17:39 EST
Reply-To: Parkinson's Information Exchange Network
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Sender: Parkinson's Information Exchange Network
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From: Ed Grskovich <[log in to unmask]>
Subject: Re: Help for Sleep/Anxiety..?
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In a message dated 1/6/02 10:26:54 AM, [log in to unmask] writes:
<< having a horrible time as bedtime comes. He gets anxious and restless. He
has somewhat of a phobia about sleep time >>
Had the same things--it's not the same as sleeplessness.
My PD med is Requip. Works well. However, when I got the "can't sleep because
of anxiousness" my intern Rx'd (with the Neuro's OK) 1 MG. of Clonazepam
(generic for Klonopin). In one week I was sleeping normally. Even though my
prostate checks out OK, I still find myself getting up more often each year
during the night for bladder discomfort. Two Advil can usually get me
through the whole night well rested, if I take them for other reasons.
ed g
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=========================================================================
Date: Sun, 6 Jan 2002 19:12:39 -0600
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
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From: Jo Ann Coen <[log in to unmask]>
Subject: Re: BETTER NEWS!
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Kathrynne - I'm so thankful you wrote Carole about the Dilantin and PD.
You make a world of differnce in many lives. Thanks for being there. Jo
Ann
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Date: Sun, 6 Jan 2002 21:46:16 EST
Reply-To: Parkinson's Information Exchange Network
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From: Rayilyn Brown <[log in to unmask]>
Subject: Re: Help for Sleep/Anxiety..?
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Roberta, I take small amts of clorazepate or Tranxene, anti-anxiety
benzodiazapine sp?? like valium. There are lots of them. Seem to help me
cope. Rayilyn
----------------------------------------------------------------------
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Date: Sun, 6 Jan 2002 21:48:49 -0500
Reply-To: Parkinson's Information Exchange Network
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From: ervinmccarthy <[log in to unmask]>
Subject: Re: Help for Sleep/Anxiety..?
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Ed, could you give more information on how ReQuip is working for you? Is it
the only Parkinson's medication you're taking? How many milligrams and how
long have been taking it? Any information would be helpful.
[log in to unmask]
----- Original Message -----
From: "Ed Grskovich" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Sunday, January 06, 2002 9:17 PM
Subject: Re: Help for Sleep/Anxiety..?
> In a message dated 1/6/02 10:26:54 AM, [log in to unmask] writes:
>
> << having a horrible time as bedtime comes. He gets anxious and restless.
He
> has somewhat of a phobia about sleep time >>
>
> Had the same things--it's not the same as sleeplessness.
>
> My PD med is Requip. Works well. However, when I got the "can't sleep
because
> of anxiousness" my intern Rx'd (with the Neuro's OK) 1 MG. of Clonazepam
> (generic for Klonopin). In one week I was sleeping normally. Even though
my
> prostate checks out OK, I still find myself getting up more often each
year
> during the night for bladder discomfort. Two Advil can usually get me
> through the whole night well rested, if I take them for other reasons.
>
> ed g
>
> ----------------------------------------------------------------------
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Date: Sun, 6 Jan 2002 21:51:09 -0500
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
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From: "Kathrynne Holden, MS, RD" <[log in to unmask]>
Organization: Five Star Living, Inc.
Subject: Re: BETTER NEWS!
MIME-Version: 1.0
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Jo Ann Coen wrote:
>
> Kathrynne - I'm so thankful you wrote Carole about the Dilantin and PD.
> You make a world of differnce in many lives. Thanks for being there. Jo
> Ann
Jo Ann -- what a nice note! You made my day, thank you very much -- and
a very Happy New Year!!
Best,
Kathrynne
--
Kathrynne Holden, MS, RD
"Ask the Parkinson Dietitian"
http://www.parkinson.org/
Author: "Eat well, stay well with Parkinson's disease"
"Guidelines for Medical Nutrition Therapy for Parkinson's disease"
http://www.nutritionucanlivewith.com/
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Date: Sun, 6 Jan 2002 19:47:58 -0800
Reply-To: [log in to unmask]
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Joan Hartman <[log in to unmask]>
Subject: Re: BETTER NEWS!
Comments: To: "Carole K. Menser" <[log in to unmask]>
MIME-Version: 1.0
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Carole...just came across this from Al Hirsch/see below...
...APDA MDO doctor referral phone #...maybe they can get you a MDO
referral....glad things are better...prayers and good luck,...Joan Hartman
* Art Hirsch's website--lots of good links.
http://www.fortunecity.com/meltingpot/farley/817/blynx.html
########
* The easy way to find a MOVEMENT DISORDER SPECIALIST is to
dial
1-888-400-2732. This toll free number will ring in the American
Parkinson
Disease Association Information Referral Center.
--- Joan Hartman
--- [log in to unmask]
--- EarthLink: It's your Internet.
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Date: Sun, 6 Jan 2002 20:26:42 -0800
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
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From: edith love <[log in to unmask]>
Subject: Survey
Comments: To: SPARKLE <[log in to unmask]>
MIME-Version: 1.0
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Just to let everyone know that the HOW DID WE GET HERE ANYWAY SURVEY closes
officially on January 31, 2002.
E of the headdress
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Date: Sun, 6 Jan 2002 22:13:35 -0800
Reply-To: Parkinson's Information Exchange Network
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Sender: Parkinson's Information Exchange Network
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From: Murray Charters <[log in to unmask]>
Subject: News & Views From The Overnight Newswire - Jan 6th. 2002
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Good Morning All,
Here's the overnight "News & Views".... from the on-line media....
There's basically almost no news...
We gotta wait fer Congress, etc.
Cheers ........ murray
OPINION: What Will It Take?
http://www.washingtonpost.com/wp-dyn/articles/A64875-2002Jan4.html
ARTICLE: Cold weather poses dangers for seniors (Parkinsonians)
http://www.billingsgazette.com/index.php?section=local&display=content/local/chaffee.inc
* * *
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Date: Sun, 6 Jan 2002 22:28:34 -0800
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
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From: Murray Charters <[log in to unmask]>
Subject: I listened to Jim Finn on the CBC - Great Interview!
Comments: cc: [log in to unmask]
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Friday I read Jim Finn's Diary online at:
Jim Finn's Home Page - Welcome!
(Read Jim Finn's Pig-Cell Implant Diary)
http://www.geocities.com/jimcfinn/
I listened to Jim Finn on the CBC today.
Sunday Edition, January 06, 2002
Being Human: Bob Carty launches a 6 part series called
"Being Human." The series is an indepth look at how
medical technologies could change our humanity.
His documentary "Who are the Guinea Pigs?" looks at
xenotransplantation, the transplantation of living cells,
tissues and organs from one species to another species.
Jim Finn is featured in the documentary. He is a former
late-stage Parkinson patient who talks about his affliction,
the xenotransplantation using pig embryo cells, and the
results. Bob Carty's series continues throughout the week
on This Morning.
http://radio.cbc.ca/programs/thismorning/sunday.html
I salute you Jim Finn. What you have done in the past
5 years is worthy of a medal. Puff up yer chest there
'n let me pin it on and shake your hand.
Best regards ......... murray
[log in to unmask]
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Date: Sun, 6 Jan 2002 23:17:26 -0800
Reply-To: "Carole K. Menser" <[log in to unmask]>
Sender: Parkinson's Information Exchange Network
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From: "Carole K. Menser" <[log in to unmask]>
Subject: NOT A GOOD NIGHT
Comments: cc: [log in to unmask]
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I'm exhausted but update is that Ted had a very bad night tonight. Lots =
of cognitive problems but at least no more seizures. I waited until 11 =
p.m. for the neuro to show up. Guess this is his day off!!!
Tomorrow will be better I hope. At this point, I don't know who to ask =
for. There are only four and the others aren't any better.
Good night all,
Carole
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Date: Mon, 7 Jan 2002 09:45:28 -0600
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
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From: Bob Martone <[log in to unmask]>
Subject: Re: Help for Sleep/Anxiety..?
In-Reply-To: <[log in to unmask]>
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Roberta,
I went through that difficult time with my wife Nancy many
years ago. She is 56 and has had PD 26 years. For immediate
relief from anxiety I would give her ativan. The ativan was
so effective that we jointly decided that I would help her
in managing that aspect of her medication. In 15 to 30
minutes it would settle her down and allow her to fall
asleep no matter what room of the house she was in. This was
great but you can imagine me trying to get her from the
kitchen/living room/bathroom etc. to the bedroom when I too
was very sleepy and just wanted to get some rest. We worked
through it and it was great. By the way she very rarely
needs ativan (generic is lorazopam) anymore.
For the nightmares, verbalizations, visualizations and
phychosis that can come from PD/PD meds we found that
Clozaril is the best and preferred my many professionals who
understand the interaction of PD meds. Our problem was that
we didn't understand that the neurologists seemed to prefer
to leave that problem to the psychiatrists. The psychiatrist
nailed it after one visit. Today (about 6 years later) Nancy
is still on Clozaril but it is handled by her GP. The only
down side is that you must get a blood test every two weeks
for possible white blood cell count reduction. This has been
a small price to pay for the benefit derived.
Bob Martone
[log in to unmask]
http://www.samlink.com/~bmartone
-----Original Message-----
From: Parkinson's Information Exchange Network
[mailto:[log in to unmask]]On Behalf Of
Roberta Nelson
Sent: Sunday, January 06, 2002 10:25 AM
To: [log in to unmask]
Subject: Help for Sleep/Anxiety..?
I would greatly appreciate finding out what is
considered 'safe' for sleep
help for PWP's using Sinemet & Eldepryl.
Apparently, most of the usual drugs
for these problems may not be used. The only class
of drugs I have found so
far not contra indicated is the Benzodiazepines.
My husband, 68, male, PD
for 8+ years (Sinemet 10/100 3-4 X day, Eldepryl 5
mg 1 X day) is currently
having a horrible time as bedtime comes. He gets
anxious and restless. He
has somewhat of a phobia about sleep time because
he has SO much trouble
going to and/or staying asleep (also has all the
'usual' PD nightmares,
verbalization, thrashing, etc.) He sleeps little,
and intermittently. It is
becoming an overwhelmingly disturbing issue for him.
I am researching this in several places, but would
like to have your input --
what have you used/found to be helpful?
He has tried Xanax and Vallium, neither seems to
have much of an impact. I
believe that an anti-anxiety drug may be a good
choice. Before we go back to
the Doctor (who is not very helpful) I would like
to compile a list of drug
possibilities.
Therefore, I ask -- what has worked for you -- what
would you suggest?
Would an 'extra' Sinamet at bedtime be helpful?
Thank You for any advice
Roberta, CG for Clyde
----------------------------------------------------
------------------
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Date: Mon, 7 Jan 2002 11:03:11 -0500
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Emily and Julian Brinac <[log in to unmask]>
Subject: Re: Help for Sleep/Anxiety..?
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable
Bob, your answer to Roberta is very interesting. But what do you do when =
human body needs more and more of the substance to get to sleep or to =
calm one down? Do you keep on adjusting quantity of medication? Do you =
at times have to change medication and , perhaps, go back again, once =
the substance is out of system. Did you try melatonin, natural sleep =
supplement?
Emily
----- Original Message -----=20
From: Bob Martone=20
To: [log in to unmask]
Sent: Monday, January 07, 2002 10:45 AM
Subject: Re: Help for Sleep/Anxiety..?
Roberta,
I went through that difficult time with my wife Nancy many
years ago. She is 56 and has had PD 26 years. For immediate
relief from anxiety I would give her ativan. The ativan was
so effective that we jointly decided that I would help her
in managing that aspect of her medication. In 15 to 30
minutes it would settle her down and allow her to fall
asleep no matter what room of the house she was in. This was
great but you can imagine me trying to get her from the
kitchen/living room/bathroom etc. to the bedroom when I too
was very sleepy and just wanted to get some rest. We worked
through it and it was great. By the way she very rarely
needs ativan (generic is lorazopam) anymore.
For the nightmares, verbalizations, visualizations and
phychosis that can come from PD/PD meds we found that
Clozaril is the best and preferred my many professionals who
understand the interaction of PD meds. Our problem was that
we didn't understand that the neurologists seemed to prefer
to leave that problem to the psychiatrists. The psychiatrist
nailed it after one visit. Today (about 6 years later) Nancy
is still on Clozaril but it is handled by her GP. The only
down side is that you must get a blood test every two weeks
for possible white blood cell count reduction. This has been
a small price to pay for the benefit derived.
Bob Martone
[log in to unmask]
http://www.samlink.com/~bmartone
-----Original Message-----
From: Parkinson's Information Exchange Network
[mailto:[log in to unmask]]On Behalf Of
Roberta Nelson
Sent: Sunday, January 06, 2002 10:25 AM
To: [log in to unmask]
Subject: Help for Sleep/Anxiety..?
I would greatly appreciate finding out what is
considered 'safe' for sleep
help for PWP's using Sinemet & Eldepryl.
Apparently, most of the usual drugs
for these problems may not be used. The only class
of drugs I have found so
far not contra indicated is the Benzodiazepines.
My husband, 68, male, PD
for 8+ years (Sinemet 10/100 3-4 X day, Eldepryl 5
mg 1 X day) is currently
having a horrible time as bedtime comes. He gets
anxious and restless. He
has somewhat of a phobia about sleep time because
he has SO much trouble
going to and/or staying asleep (also has all the
'usual' PD nightmares,
verbalization, thrashing, etc.) He sleeps little,
and intermittently. It is
becoming an overwhelmingly disturbing issue for him.
I am researching this in several places, but would
like to have your input --
what have you used/found to be helpful?
He has tried Xanax and Vallium, neither seems to
have much of an impact. I
believe that an anti-anxiety drug may be a good
choice. Before we go back to
the Doctor (who is not very helpful) I would like
to compile a list of drug
possibilities.
Therefore, I ask -- what has worked for you -- what
would you suggest?
Would an 'extra' Sinamet at bedtime be helpful?
Thank You for any advice
Roberta, CG for Clyde
----------------------------------------------------
------------------
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Date: Mon, 7 Jan 2002 08:14:35 -0000
Reply-To: Catholic Heritage Curricula <[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Catholic Heritage Curricula <[log in to unmask]>
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Content-Transfer-Encoding: quoted-printable
To Carlin Texas,
Hi! I tried replying but my note was returned as undeliverable - I am =
posting here on the list, thank you again for your note.
I will share your suggestion with my dad, thanks for the reply! He did =
begin
the Comtan yesterday, so we will see how that goes. Theresa
> Ask your dad's neurologist about sinemet CR and adding requip.
> Experimenting & fine tuning the meds with these might possibly =
alleviatte
> the dyskinesia your dad experiences. Best wishes. From CarlinTexas
----------------------------------------------------------------------
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Date: Mon, 7 Jan 2002 12:56:53 -0600
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Bob Martone <[log in to unmask]>
Subject: Re: Help for Sleep/Anxiety..?
In-Reply-To: <000a01c19794$cf752740$a067e2d1@p5f3m3>
MIME-Version: 1.0
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Emily/Julian,
Hi, the ativan has always been so effective that we have
never had to deal with the reduction of its helpfullness.The
correct dosage was a joint decison. The doctor started Nancy
out at a low dose and with an understanding of what a
maximum dose would be that I could administer. There was a
period of time when it was critical to us. Now it is rarely
needed. I think the anxiety has a great deal to do with
building up coping skills as the freezing and muscle tension
begin to dominate the PWP's ability to move, especially in
bed. As coping skills improve and different devices are used
to assist, the anxiety can be reduced. Some of the aids that
Nancy uses now include a trapeze over the bed, and satin
sheets and silk pajamas. This increases her ability to
rollover and due the things that most of us take for
granted. Periodically I still have to help her out of bed
and to the bathroom. In my opinion learning how to accept
that helping hand was part of the anxiety reduction
equation.
Clozaril as best as I can figure actually permantly replaces
lost chemicals or rebalances the brain chemistry to
compenasate for the many alterations that come with dopamine
loss. In six years we have titrated upward once and then
back down again. Please remember that blood testing is
mandatory on this one.
Tweeking meds periodically can be a powerful asset in the
fight but it has rarely come without much trial and error.
As new PD meds have been tried such as Mirapex, Requip,
Tasmar and Comtan we have had to monitor the effects on her
other meds. This was also true with the surgeries that Nancy
has had. This process requires a fair amount of patience and
is often pretty stressful for both of us. Honestly, 26 years
experiece with this blasted disease man be the most
important factor in figuing out how to respond to a problem.
Our current doctors all understand that now. None of them
were with us in the beginning.
Bob Martone
[log in to unmask]
http://www.samlink.com/~bmartone
-----Original Message-----
From: Parkinson's Information Exchange Network
[mailto:[log in to unmask]]On Behalf Of
Emily and Julian
Brinac
Sent: Monday, January 07, 2002 10:03 AM
To: [log in to unmask]
Subject: Re: Help for Sleep/Anxiety..?
Importance: High
Bob, your answer to Roberta is very interesting.
But what do you do when human body needs more and
more of the substance to get to sleep or to calm
one down? Do you keep on adjusting quantity of
medication? Do you at times have to change
medication and , perhaps, go back again, once the
substance is out of system. Did you try melatonin,
natural sleep supplement?
Emily
----- Original Message -----
From: Bob Martone
To: [log in to unmask]
Sent: Monday, January 07, 2002 10:45 AM
Subject: Re: Help for Sleep/Anxiety..?
Roberta,
I went through that difficult time with my wife Nancy many
years ago. She is 56 and has had PD 26 years. For
immediate
relief from anxiety I would give her ativan. The
ativan was
so effective that we jointly decided that I would help her
in managing that aspect of her medication. In 15 to 30
minutes it would settle her down and allow her to fall
asleep no matter what room of the house she was
in. This was
great but you can imagine me trying to get her from the
kitchen/living room/bathroom etc. to the bedroom
when I too
was very sleepy and just wanted to get some rest.
We worked
through it and it was great. By the way she very rarely
needs ativan (generic is lorazopam) anymore.
For the nightmares, verbalizations, visualizations and
phychosis that can come from PD/PD meds we found that
Clozaril is the best and preferred my many
professionals who
understand the interaction of PD meds. Our
problem was that
we didn't understand that the neurologists seemed
to prefer
to leave that problem to the psychiatrists. The
psychiatrist
nailed it after one visit. Today (about 6 years
later) Nancy
is still on Clozaril but it is handled by her GP. The only
down side is that you must get a blood test every
two weeks
for possible white blood cell count reduction.
This has been
a small price to pay for the benefit derived.
Bob Martone
[log in to unmask]
http://www.samlink.com/~bmartone
-----Original Message-----
From: Parkinson's Information Exchange Network
[mailto:[log in to unmask]]On Behalf Of
Roberta Nelson
Sent: Sunday, January 06, 2002 10:25 AM
To: [log in to unmask]
Subject: Help for Sleep/Anxiety..?
I would greatly appreciate finding out what is
considered 'safe' for sleep
help for PWP's using Sinemet & Eldepryl.
Apparently, most of the usual drugs
for these problems may not be used. The only class
of drugs I have found so
far not contra indicated is the Benzodiazepines.
My husband, 68, male, PD
for 8+ years (Sinemet 10/100 3-4 X day, Eldepryl 5
mg 1 X day) is currently
having a horrible time as bedtime comes. He gets
anxious and restless. He
has somewhat of a phobia about sleep time because
he has SO much trouble
going to and/or staying asleep (also has all the
'usual' PD nightmares,
verbalization, thrashing, etc.) He sleeps little,
and intermittently. It is
becoming an overwhelmingly disturbing issue for him.
I am researching this in several places, but would
like to have your input --
what have you used/found to be helpful?
He has tried Xanax and Vallium, neither seems to
have much of an impact. I
believe that an anti-anxiety drug may be a good
choice. Before we go back to
the Doctor (who is not very helpful) I would like
to compile a list of drug
possibilities.
Therefore, I ask -- what has worked for you -- what
would you suggest?
Would an 'extra' Sinamet at bedtime be helpful?
Thank You for any advice
Roberta, CG for Clyde
----------------------------------------------------
------------------
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mailto:[log in to unmask]
In the body of the message put: signoff parkinsn
----------------------------------------------------
------------------
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Date: Mon, 7 Jan 2002 11:27:51 -0800
Reply-To: [log in to unmask]
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: "Robert A. Fink, M. D." <[log in to unmask]>
Subject: Parkinson Handbook
MIME-Version: 1.0
Content-type: text/plain; charset=US-ASCII
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I have been trying to contact Bill Harshaw regarding getting another
copy of his Parkinson Handbook (I helped him with the current
revision by checking it out at his request). I have not been able to
contact Bill through this List, and I do not have his personal e-mail
address.
I am scheduled to give a talk to a local PD support group the first week
in February, and I would like to use and share Bill's Handbook with
that group. Does anyone have a copy? If so, can they send it to me,
preferably electronically, but by snail mail if necessary? I assume that
it is "public domain"; but if not, I will certainly respect the copyright, if
any, and will then give instructions to the people that I speak to as to
how to purchase a copy.
Many thanks,
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: Mon, 7 Jan 2002 15:49:19 -0500
Reply-To: Parkinson's Information Exchange Network
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Sender: Parkinson's Information Exchange Network
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From: Emily and Julian Brinac <[log in to unmask]>
Subject: Re: Help for Sleep/Anxiety..?
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Bob,=20
Thank you for your information. I was just looking up both drugs for =
side effects and addiction and must say these are very powerful drugs. =
You may want to try melatonin in future if there be a need but check for =
PD drug interaction. My husband has a high level of anxiety and I will =
be on alert. I do not know if this level will increase over the time or =
will it stabilize. At the moment he does not take anything other than =
supplements as he has been just diagnosed. I learned today that in fact =
we have to wait for 6 months to see neurologist. He is a good one but =
with my husband losing weight I do not know how we will manage. Will put =
ourselves on cancellation list and we may be lucky to get in sooner.=20
Emily
----- Original Message -----=20
From: Bob Martone=20
To: [log in to unmask]
Sent: Monday, January 07, 2002 1:56 PM
Subject: Re: Help for Sleep/Anxiety..?
Emily/Julian,
Hi, the ativan has always been so effective that we have
never had to deal with the reduction of its helpfullness.The
correct dosage was a joint decison. The doctor started Nancy
out at a low dose and with an understanding of what a
maximum dose would be that I could administer. There was a
period of time when it was critical to us. Now it is rarely
needed. I think the anxiety has a great deal to do with
building up coping skills as the freezing and muscle tension
begin to dominate the PWP's ability to move, especially in
bed. As coping skills improve and different devices are used
to assist, the anxiety can be reduced. Some of the aids that
Nancy uses now include a trapeze over the bed, and satin
sheets and silk pajamas. This increases her ability to
rollover and due the things that most of us take for
granted. Periodically I still have to help her out of bed
and to the bathroom. In my opinion learning how to accept
that helping hand was part of the anxiety reduction
equation.
Clozaril as best as I can figure actually permantly replaces
lost chemicals or rebalances the brain chemistry to
compenasate for the many alterations that come with dopamine
loss. In six years we have titrated upward once and then
back down again. Please remember that blood testing is
mandatory on this one.
Tweeking meds periodically can be a powerful asset in the
fight but it has rarely come without much trial and error.
As new PD meds have been tried such as Mirapex, Requip,
Tasmar and Comtan we have had to monitor the effects on her
other meds. This was also true with the surgeries that Nancy
has had. This process requires a fair amount of patience and
is often pretty stressful for both of us. Honestly, 26 years
experiece with this blasted disease man be the most
important factor in figuing out how to respond to a problem.
Our current doctors all understand that now. None of them
were with us in the beginning.
Bob Martone
[log in to unmask]
http://www.samlink.com/~bmartone
-----Original Message-----
From: Parkinson's Information Exchange Network
[mailto:[log in to unmask]]On Behalf Of
Emily and Julian
Brinac
Sent: Monday, January 07, 2002 10:03 AM
To: [log in to unmask]
Subject: Re: Help for Sleep/Anxiety..?
Importance: High
Bob, your answer to Roberta is very interesting.
But what do you do when human body needs more and
more of the substance to get to sleep or to calm
one down? Do you keep on adjusting quantity of
medication? Do you at times have to change
medication and , perhaps, go back again, once the
substance is out of system. Did you try melatonin,
natural sleep supplement?
Emily
----- Original Message -----
From: Bob Martone
To: [log in to unmask]
Sent: Monday, January 07, 2002 10:45 AM
Subject: Re: Help for Sleep/Anxiety..?
Roberta,
I went through that difficult time with my wife Nancy many
years ago. She is 56 and has had PD 26 years. For
immediate
relief from anxiety I would give her ativan. The
ativan was
so effective that we jointly decided that I would help her
in managing that aspect of her medication. In 15 to 30
minutes it would settle her down and allow her to fall
asleep no matter what room of the house she was
in. This was
great but you can imagine me trying to get her from the
kitchen/living room/bathroom etc. to the bedroom
when I too
was very sleepy and just wanted to get some rest.
We worked
through it and it was great. By the way she very rarely
needs ativan (generic is lorazopam) anymore.
For the nightmares, verbalizations, visualizations and
phychosis that can come from PD/PD meds we found that
Clozaril is the best and preferred my many
professionals who
understand the interaction of PD meds. Our
problem was that
we didn't understand that the neurologists seemed
to prefer
to leave that problem to the psychiatrists. The
psychiatrist
nailed it after one visit. Today (about 6 years
later) Nancy
is still on Clozaril but it is handled by her GP. The only
down side is that you must get a blood test every
two weeks
for possible white blood cell count reduction.
This has been
a small price to pay for the benefit derived.
Bob Martone
[log in to unmask]
http://www.samlink.com/~bmartone
-----Original Message-----
From: Parkinson's Information Exchange Network
[mailto:[log in to unmask]]On Behalf Of
Roberta Nelson
Sent: Sunday, January 06, 2002 10:25 AM
To: [log in to unmask]
Subject: Help for Sleep/Anxiety..?
I would greatly appreciate finding out what is
considered 'safe' for sleep
help for PWP's using Sinemet & Eldepryl.
Apparently, most of the usual drugs
for these problems may not be used. The only class
of drugs I have found so
far not contra indicated is the Benzodiazepines.
My husband, 68, male, PD
for 8+ years (Sinemet 10/100 3-4 X day, Eldepryl 5
mg 1 X day) is currently
having a horrible time as bedtime comes. He gets
anxious and restless. He
has somewhat of a phobia about sleep time because
he has SO much trouble
going to and/or staying asleep (also has all the
'usual' PD nightmares,
verbalization, thrashing, etc.) He sleeps little,
and intermittently. It is
becoming an overwhelmingly disturbing issue for him.
I am researching this in several places, but would
like to have your input --
what have you used/found to be helpful?
He has tried Xanax and Vallium, neither seems to
have much of an impact. I
believe that an anti-anxiety drug may be a good
choice. Before we go back to
the Doctor (who is not very helpful) I would like
to compile a list of drug
possibilities.
Therefore, I ask -- what has worked for you -- what
would you suggest?
Would an 'extra' Sinamet at bedtime be helpful?
Thank You for any advice
Roberta, CG for Clyde
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Date: Mon, 7 Jan 2002 13:57:21 -0800
Reply-To: [log in to unmask]
Sender: Parkinson's Information Exchange Network
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From: Joan Hartman <[log in to unmask]>
Subject: Re: NOT A GOOD NIGHT
Comments: To: "Carole K. Menser" <[log in to unmask]>
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Carole....suggestion....can you call an
out-of-town neuro in AS A CONSULTANT from a university or teaching
hospital .....like they do from UCLA or Harvard Medical
Schools or Massachusetts General.....they can do it by online computers set up
between hospitals and if you're hospital is not set up that way, information
could be faxed to the consulting neuro and he could fax back to you/doctor or
call you/doctor.....being an advocate you probably know more about doing this
type of thing than I do..you might want to start with UC Davis Medical
School by you somewhere...or contact one of the ones I sent you previously
like Vicki Wheelock, MD. MDS. UC Davis Medical Center,
4860 Y Street, Sacramento, CA 95817, 916-734-6287
..if I can
help, let me know....prayers and good luck ...Joan Hartman
--- Joan Hartman
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Date: Mon, 7 Jan 2002 17:19:21 EST
Reply-To: Parkinson's Information Exchange Network
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From: [log in to unmask]
Subject: Re: I listened to Jim Finn on the CBC - Great Interview!
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Hi Murray -
Thanks for your note and kind words. You are correct, the past 5 years have
been incredible. As you know I have given the media complete access to my
experiences with xenotransplantation. This has resulted in an enormous
amount of publicity for our common cause; Parkinson's disease.
However, I have done nothing more than anyone else would do given the same
circumstances. It was a last attempt to save my neck. Plain and simple.
Let's save those medals you mentioned for the scientists and researchers.
They really are working on our behalf!
Warmly -
Jim
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Date: Mon, 7 Jan 2002 15:08:27 -0800
Reply-To: [log in to unmask]
Sender: Parkinson's Information Exchange Network
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From: Joan Hartman <[log in to unmask]>
Subject: Re: NOT A GOOD NIGHT
Comments: To: "Carole K. Menser" <[log in to unmask]>
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Carole...after I sent my last email, I realized
that you are probably at the hospital so I took the liberty of calling UC Davis
and they do have consultants under their PACT Program....and they respond in one
day.....so here's the info...and the phone number to request a consultant...if
you click on the doctor's name once your in the site it gives you their medical
background, certification, education and personal philosophy....you might know
of another one closer to you but I can't find any....prayers and good luck to
you and Ted....Joan Hartman
http://pactnet.ucdavis.edu/Consultants/Consultants.htm#Neuro
Neurology
Constance M. Bowe, M.D.
Associate
Professor of Neurology, Child Neurology, Department of Neurology, UC Davis
Health System
Celia H. Chang, M.D.
Assistant Professor
of Clinical Neurology, Child Neurology, Department of Neurology, UC Davis Health
System
William J. Jagust, M.D.
Professor and
Chair of Neurology, Director of the UC Davis Alzheimer's Disease Center,
Department of Neurology, UC Davis Health System
Barry Tharp, M.D.
Professor, Child Neurology, Department of
Neurology, UC Davis Health System
===========
http://pactnet.ucdavis.edu/Forms/forms.htm
gives you...
How do you request a PACT Net consultation?
To request a consultation, call
1-800-4-UCDAVIS
(1-800-482-3284)
Select menu option
#3 and request a PACT Net Consultation
Please have the
following information available:
- Patient's D.O.B., gender and county of
residence;
- Primary care physician's name, telephone, and convenient times
to be contacted;
- Reason for consultation and specific question.
====
Physician Assitance, Consultation and Training
NetworkConsultants
All recognized experts in their fields, the PACT
Net team includes distinguished consultant physicians as well as specialists in
pharmacology/toxicology and genetic counseling. Their clearly stated commitment
to the PACT Net mission reflects their consensus of concern for the health and
well-being of people with developmental disabilities in the community. Each
consultant has agreed to respond within one business day to primary care
physicians who request assistance, providing resources which offer the very best
options for patient care and all the benefits of current medical advances in
diagnosis and treatment
--- Joan Hartman
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Date: Mon, 7 Jan 2002 15:43:12 -0800
Reply-To: "Carole K. Menser" <[log in to unmask]>
Sender: Parkinson's Information Exchange Network
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From: "Carole K. Menser" <[log in to unmask]>
Subject: SOME PROGRESS
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Hi All --
Well, the seizures are controlled but the cognitive/mental =
difficulties/inappropriate affect are much more noticeable. Not sure if =
this is a result of all the seizure activity that needs some time to =
quieted down or meds or ? One doc mentioned "hospital psychosis" which =
can be very real but I'm wondering if a bit of clozaril at bedtime =
wouldn't do the trick.
I got Ted's brothers involved this morning and one of them phoned the =
neuro. You know, some docs don't really seem to care unless they think =
several people are involved with the patient and monitoring what goes =
on. After talking with Ted's brother, I got a call at the hospital from =
the neuro. First one I've had since all of this began. He wants to =
maybe try some other meds. Gee, what's new about that!!!!! =20
I also have discovered a new neuro on town. And thanks for the info on =
Dr. Evy Szanto about 40 miles away. We had actually tried to get in to =
see her a year or two ago but she was not taking new patients at that =
time.
Well, some things improved and some not. Just a reminder . . . when you =
call Ted's room he hears everything that I say on the phone. I don't =
like to say too much. He has already picked up on the cognitive =
problems to some degree so don't want him to think he is "crazy."
Love to all,
Carole (and Ted too)
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Date: Mon, 7 Jan 2002 15:46:35 -0800
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: NOT A GOOD NIGHT
Comments: To: [log in to unmask]
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I checked. Still have to get a doctor to do this . . . which is very =
understandable. It is set up as a consultation source for general =
practitioners in particular. Getting anyone to do anything has been THE =
major issue here. Thanks for the info.
=20
:-)
=20
=20
-----Original Message-----
From: Joan Hartman <[log in to unmask]>
To: [log in to unmask] <[log in to unmask]>; =
Carole K. Menser <[log in to unmask]>
Date: Monday, January 07, 2002 1:57 PM
Subject: RE: NOT A GOOD NIGHT
=20
=20
Carole....suggestion....can you call an out-of-town neuro in AS A =
CONSULTANT from a university or teaching hospital .....like they do =
from UCLA or Harvard Medical Schools or Massachusetts General.....they =
can do it by online computers set up between hospitals and if you're =
hospital is not set up that way, information could be faxed to the =
consulting neuro and he could fax back to you/doctor or call =
you/doctor.....being an advocate you probably know more about doing this =
type of thing than I do..you might want to start with UC Davis Medical =
School by you somewhere...or contact one of the ones I sent you =
previously like Vicki Wheelock, MD. MDS. UC Davis Medical Center, 4860 =
Y Street, Sacramento, CA 95817, 916-734-6287
..if I can help, let me know....prayers and good luck ...Joan =
Hartman
=20
--- Joan Hartman
--- [log in to unmask]
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Date: Mon, 7 Jan 2002 19:36:17 -0600
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
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From: Leo Fuhr <[log in to unmask]>
Subject: Re: I listened to Jim Finn on the CBC - Great Interview!
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Jim, you are too modest. But cheers should go to those bright researchers
who continue to astonish with the remarkable improvements made possible for
not only pwp but others with brain diseases.
GO, GO, Go Brain and neurological researchers....HIP, HIP, HOORAY!!!!!!!!
Jeanette(who never made cheerleader in high school) Fuhr
----- Original Message -----
From: <[log in to unmask]>
To: <[log in to unmask]>
Sent: Monday, January 07, 2002 4:19 PM
Subject: Re: I listened to Jim Finn on the CBC - Great Interview!
Hi Murray -
Thanks for your note and kind words. You are correct, the past 5 years have
been incredible. As you know I have given the media complete access to my
experiences with xenotransplantation. This has resulted in an enormous
amount of publicity for our common cause; Parkinson's disease.
However, I have done nothing more than anyone else would do given the same
circumstances. It was a last attempt to save my neck. Plain and simple.
Let's save those medals you mentioned for the scientists and researchers.
They really are working on our behalf!
Warmly -
Jim
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Date: Mon, 7 Jan 2002 22:46:31 -0500
Reply-To: [log in to unmask]
Sender: Parkinson's Information Exchange Network
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From: Perry Cohen <[log in to unmask]>
Subject: FDA and NIH Appointments
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January 7, 2002
LA Times
EDITORIAL
Public Health Security
Globalism and bioterrorism are two of many good reasons to seek
excellent leadership for government safety agencies. Which makes it all
the more worrisome that the Food and Drug Administration and the
National Institutes of Health have both been without chief executives
for a year or more. President Bush and Congress are only now focusing on
filling these gaps. More delay would be a big mistake.
The FDA, which has had no commissioner for a year, is scheduled this
spring to draw up plans to speed up drug approval during an emergency
without compromising public safety, close safety loopholes that
Agriculture Secretary Ann M. Veneman says could let terrorists infect
the nation's food supply, and address demands to tighten oversight of
the new abortion pill, RU-486.
The NIH, with no director for two years, oversees all taxpayer-funded
health research, from stem cell experiments to cloning. It is in the
midst of a multibillion-dollar anti-terrorism project that includes
developing a new vaccine for anthrax and treatments for emerging
pathogens like prions, which cause mad cow disease. Luckily for both
agencies, strong candidates are waiting in the wings.
The best candidate for NIH head is Anthony Fauci, currently the
director of a major NIH division, the National Institute of Allergy and
Infectious Diseases. Fauci is a deft politician and the nation's leading
AIDS researcher. Bush reportedly offered him the job, but Fauci has held
out for assurance that he would have ''protected time'' each week to
escape politics and do his own research. The president should give him
that comfort and urge him to serve the nation.
This week, Bush is expected to nominate another promising leader,
Alastair J.J. Wood, a Vanderbilt University assistant vice chancellor
and medicine professor, to head the FDA.
Wood generally won respect as a medical peer reviewer while he was
editor of the drug-review department of the New England Journal of
Medicine. His term suffered some tarnish in early 2000 when he admitted
he had overseen studies published in the journal that failed to disclose
their authors' potential conflicts of interest--a violation of the
journal's policy. However, Wood gained broad respect while serving on an
FDA advisory committee when he forthrightly denounced the way the FDA
had mishandled the potentially fatal diabetes drug Rezulin, releasing it
despite clear indications it was dangerous.
The Senate should fast-track confirmation hearings for Wood, who is
superior to the two other potential nominees whose names the
administration has floated, biotechnology executive Michael Astrue and
Lester Crawford, a former FDA bureaucrat who ran a food-industry-backed
think tank.
The FDA and NIH may seem like obscure, easily ignored federal agencies,
but their social importance is growing and they need strong leadership
to be strong watchdogs of the national health.
For information about reprinting this article, go to
http://www.lats.com/rights
--
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Date: Tue, 8 Jan 2002 14:19:16 +1000
Reply-To: Parkinson's Information Exchange Network
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Sender: Parkinson's Information Exchange Network
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From: GAIL E STEVENS <[log in to unmask]>
Subject: new
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hello,iam new to this.diag.in1996.first signs of pd 1970 after discharge =
from army.interested to know of others who noticed symptoms after war =
service.also keen to work out a diet that suits pd.have been refered to =
a doctor to see if op.possible.any one been down that road?what cost i =
wonder.BOB STEVENS
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