I joined the Parkinson Digest several years ago because my father had =
been living with PD for 12 -15 years and he decided he wanted his brain =
autopsied for Parkinson's research.  Through this information exchange =
we finally made the first steps in learning how to arrange for the =
autopsy.

I lost my Dad last November.  The copy of the autopsy came back to us in =
late February.  We learned that throughout the 18 years of his disease, =
he did not have PD at all. Instead, he had something called Progressive =
Supernuclear Palsy (PSP).  PSP is a rare form of palsy that initially =
creates the same symptoms of PD and, therefore, caused the PD diagnosis.

We were given an article about PSP by Dad's neurologist after he read =
the report but, whoever copied it for him missed the middle page or =
pages of the article.  The pages we received had no identification of =
the publication from which it came and his office can't find it again. =20

Soooooo, I'm asking if any of you out there have heard of "progressive =
supernuclear palsy" and could refer me to a layman's description of the =
disease, it's impact, it's treatment and it progress?

Thanks for any leads! =20

Linda Neilsen
----------
From:   Automatic digest processor[SMTP:[log in to unmask]]
Sent:   Tuesday, May 19, 1998 1:46 PM
To:     Recipients of PARKINSN digests
Subject:        PARKINSN Digest - 18 May 1998 to 19 May 1998 - Special issue

There are 42 messages totalling 993 lines in this issue.

Topics in this special issue:

  1. non PD, but-Cocaine Addiction, Serotonin Linked
  2. Not PD - Copying machines
  3. TASMAR UPDATES PLEASE (2)
  4. Mac's Passing (3)
  5. Maybe this time it will be sent! (3)
  6. For  Ken
  7. Mac's passing
  8. The End of an Era
  9. Volunteers for Medical Engineering
 10. Ken (3)
 11. Condolences
 12. no pd
 13. Ken Becker's dad
 14. Beds (5)
 15. A couple  of  questions (4)
 16. Multiple Alarm Watches
 17. Neuropsychological Testing/employment
 18. Newport, RI Support Group
 19. DR. RUSSELL BUTLER TO SPEAK AT CONCORD [MA.] WED.5/27 (2)
 20. Tasmar reaction
 21. WebRing Update
 22. Funding Priorities: Where is PD? (3)
 23. WebSite Addresses
 24. I'm new
 25. Tasmar     May 19 98

----------------------------------------------------------------------

Date:    Tue, 19 May 1998 00:24:58 -0400
From:    Judith Richards <[log in to unmask]>
Subject: non PD, but-Cocaine Addiction, Serotonin Linked

MAY 14, 1998

 Cocaine Addiction, Serotonin Linked

 By JANE E. ALLEN
 AP Science Writer

 LOS ANGELES (AP) -- The chemical messenger serotonin is turning out to
be a bigger player in cocaine addiction than previously thought,
according to two studies that could help researchers find new approaches
to treating and preventing drug abuse.

 The studies released Wednesday looked at the roles of dopamine and
serotonin in laboratory  mice that were forced to press levers to get
doses of cocaine.

 Researchers have long held that increases of dopamine -- a chemical
associated with  movement, thought, motivation and pleasure -- in the
brain produce some of the euphoria and addictive effects of cocaine.

 Serotonin -- involved in emotions, mood, and probably sleep and
aggression -- was thought to play some role in achieving a high. But the
new studies show it also plays an important role in how vulnerable an
animal, or human, may be.

 ``We used to have a religion called the dopamine religion that said
that you could explain anything solely on the basis of dopamine,'' said
Alan I. Leshner, director of the National Institute on Drug Abuse.

 The new results suggest more attention must be paid to serotonin, he
said. ``That opens a new line of thinking because we know serotonin is
important in many other mood states, like depression.''

 ``It's a really major discovery,'' said Francis White, who chairs the
department of cellular and molecular pharmacology at the Finch
University of Health Sciences/Chicago Medical School.

 The work was funded by Leshner's institute and led by Rene Hen at
Columbia University and Beatriz Rocha at the University of North Texas.

 They found that specially bred mice lacking a gene involved in the
brain's response to serotonin were more motivated to take cocaine than
normal mice. They were also more sensitive to the drug's effects.

 The mutant mice also showed an increased attraction to alcohol and more
impulsiveness, a trait often associated with drug abuse.

 That study, underscoring the role of genetics in addiction, appears in
today's issue of the journal Nature.

 In the other study, which will appear in the June issue of the journal
Nature Neuroscience, Marc G. Caron found evidence that cocaine's effects
are not solely controlled by the dopamine system.

 Caron has been working with the brain cell circuits in which one brain
cell signals another by releasing bits of dopamine. Then the first cell
retrieves the dopamine with a structure called a dopamine transporter.

 Researchers had believed that cocaine works by attaching itself to the
transporter so it can't retrieve the dopamine. That allowed more
dopamine to circulate around the cell, providing the high.

 Caron's team, which also includes Ms. Rocha, thought that giving
cocaine to a specially bred mouse without a dopamine transporter would
take away the cocaine target and eliminate the mouse's normal desire for
the cocaine.

 Scientists were surprised to find mice without the transporter still
pressed the lever to get more of the cocaine. Serotonin or some other
mechanism may initiate and maintain the attraction to cocaine, said
Caron, a Howard Hughes Medical Institute investigator and professor of
cell biology at Duke University Medical Center in Durham, N.C.

Copyright 1998 Associated Press. All rights reserved.
--
Judith Richards, London, Ontario, Canada
[log in to unmask]

------------------------------

Date:    Tue, 19 May 1998 00:51:09 EDT
From:    Ken Becker <[log in to unmask]>
Subject: Re: Not PD - Copying machines

Bill, a great photo, the car is beautiful, and the detail is good enough =
to
tell you it needs a front wheel alignment! (maybe it's just the angle of =
the
photo) I liked the fact that it automatically downloaded to my screen! I
printed it out too, but the picture on the monitor is better than what
printed. [log in to unmask]

------------------------------

Date:    Tue, 19 May 1998 01:09:38 EDT
From:    STORKIE 1 <[log in to unmask]>
Subject: Re: TASMAR UPDATES PLEASE

Diagnosed 14 years ago age 51- Was on 2 eldypryl  2artane , 1 25\100, 3
50\200, 2 Parlodel and 2 symmetrel(ammantidine) for years.

Last Nov. I went on a low protein diet, took 2 25\100 and 2 parlodel) =
and
really flipped out on the  one tablet of Requip I took.Also did not  =
fare well
with mirapex.

Am currently on 3 Tasmar, 1 and 1\2 25\100 and 2 Parlodel.v every 2 =
hours
while awake. I sleep about 6 to 6.5 hours, about a 25% reduction in the
levadopa and am doing well.

Play golf and tennis, maintain the yard work for my residences side by =
side
(mother in law in one) which is a little over an acre of lawn and =
landscaped.
I have two part time jobs, assist my wife in her business, have just =
started a
support group in Dayton  Ohio which has grown from 3 couples to about 16
people, schedule and train layreaders and chalice bearers at our church,
travel, go to the phiharmonic, amd do some financial planning when the =
moodm
hits me.  Have a local Neuro, one in Rochester at the Mayo, and another =
at
Ohio State that I visit with to help stay on top of stuff.
I am starting to do some public speaking re PD and have a couple of
engagements lined up--maybe 15 to 20 minute stints..---Incidently--does =
anyone
know where I could  borrow some PD overheads or tapes relative to =
introducing
PD "the secrete disease" Such as
What it is- simple treatments for-----any aids at a remedial level would =
help.
I have "winged it' in the past but  would like to have a well =
coordinated
couple of tracks to run on..     -- Whoops--off the track again.

Being 65, medicating for PD for 14 years, and wanting to be active is an
unusual set of cicumstances. As my Rotary buddies say--watch ouy for the
steamroller.

------------------------------

Date:    Tue, 19 May 1998 01:10:02 EDT
From:    Ken Becker <[log in to unmask]>
Subject: Re: Mac's Passing

Barb, thanks so much, hearing comments like that make it easier to bear. =
When
some time passes, I am going to ask my sister for a copy of the =
beautiful
eulogy she wrote and gave at the funeral.  With all the wonderful people =
on
the list,and our local friends and family, who have gathered around us, =
it is
such a testament to what a great person dad was, it's almost like he is =
still
with us.  He was so worried there wouldn't be many people at his
funeral......Sinatra would have been jealous!
And dad was never even ACCUSED of having connections to the mob!  Yes, I =
have
survived with my sense of humor intact, it is part of the legacy.  In =
time, I
will be able to ease some of the fears the people on the list may have =
about
death, and about how caregivers may be spared needless fears,  etc. from =
what
I have learned, from my father. He CAN rest in peace, we will take care =
of
mom, as strong as she is, she deserves whatever we can do to help her =
enjoy
life now.  Hope you are doing well.
Thanks from me and the whole Becker  family.

------------------------------

Date:    Tue, 19 May 1998 01:13:42 EDT
From:    Ken Becker <[log in to unmask]>
Subject: Re: Maybe this time it will be sent!

Denny, thanks so much for the words of comfort. I hope your father also =
had a
long and happy life, but no matter, you will always miss him, as I will =
mine.
Ken B

------------------------------

Date:    Tue, 19 May 1998 01:22:58 EDT
From:    Ken Becker <[log in to unmask]>
Subject: Re: For  Ken

Thanks for the poem, Nancy, it is true. Ken

------------------------------

Date:    Tue, 19 May 1998 01:32:09 EDT
From:    Ken Becker <[log in to unmask]>
Subject: Re: Mac's passing

Thanks Dennis, everything I have gotten from all the wonderful folks on =
this
list has made our loss easier to bear, your poem is great. I have =
already
started preparing my children for my demise. I hope it will not be too =
soon,
but in any event, I don't want them to be miserable or to suffer when it
happens, but to be happy  for what a great life I have had, and as my =
father
had, despite the ending not being exactly a storybook situation in his =
case. I
have learned a lot about him and myself. I hope to help others with what =
I
have learned.  Ken B

------------------------------

Date:    Tue, 19 May 1998 01:36:14 EDT
From:    Ken Becker <[log in to unmask]>
Subject: Re: Maybe this time it will be sent!

Thanks Bonnie, both for the condolences and that you enjoy what I do =
here! I
hope I can be helpful and still spread some cheer on the list too. Ken B

------------------------------

Date:    Tue, 19 May 1998 01:39:37 EDT
From:    Ken Becker <[log in to unmask]>
Subject: Re: The End of an Era

Thanks Henry, he is at peace, and he left knowing his family would take =
care
of everything, and he would not have another ache or pain, for =
eternity.....We
are grateful for that.  Ken B

------------------------------

Date:    Tue, 19 May 1998 01:53:55 EDT
From:    Ken Becker <[log in to unmask]>
Subject: Re: Volunteers for Medical Engineering

Bruce, you got me thinking (MINOR MIRACLE!) What about a flexible shower =
hose
unit, with large control levers and a built in shampoo dispenser, to =
enable
patient to wash her hair?  I don't know how to "set" hair, is it what =
they do
with rollers? If that is the case, what about a shorter haircut, or =
maybe a
wig to cover her hair? Good luck with this project. Ken B

------------------------------

Date:    Tue, 19 May 1998 02:03:24 EDT
From:    Ken Becker <[log in to unmask]>
Subject: Re: Ken

Thanks Helen, It feels good to be needed. Ken B

------------------------------

Date:    Tue, 19 May 1998 02:06:53 EDT
From:    Ken Becker <[log in to unmask]>
Subject: Re: Condolences

Thank you so much,, Bev and Murph, from the Becker family.

------------------------------

Date:    Tue, 19 May 1998 02:11:00 EDT
From:    Ken Becker <[log in to unmask]>
Subject: Re: no pd

DON!! I was wondering where you've been hiding! I am still =
[log in to unmask]
Hope you are doing well and your computer has been finally fixed right,  =
Ken B

------------------------------

Date:    Tue, 19 May 1998 02:12:39 EDT
From:    Ken Becker <[log in to unmask]>
Subject: Re: Maybe this time it will be sent!

Thank you Kathy, it is deeply appreciated. Ken B and family.

------------------------------

Date:    Tue, 19 May 1998 02:14:28 EDT
From:    Ken Becker <[log in to unmask]>
Subject: Re: Ken

Thank you Nancy, it means a great deal to us. Ken B and family

------------------------------

Date:    Tue, 19 May 1998 02:24:08 EDT
From:    Ken Becker <[log in to unmask]>
Subject: Re: Ken Becker's dad

Thank you Ivan, I hope I can be even more useful on the list, from what =
I have
learned from Dad's problems. He had other problems than PD, I will =
discuss
them at a later date, to possibly help others avoid some  problems. Due =
to
Dad's legacy of humor, I hope to be able to distract those who need it, =
until
the real cure comes along.  I met more people in their late  80's in the =
last
2 days who would amaze you! Many still working productively.  There is =
hope!
AND, though he does work in mysterious ways, there is G-d! Hope you and =
your
father are both doing ok. Ken B

------------------------------

Date:    Tue, 19 May 1998 07:18:10 -0400
From:    Gregroy Leeman <[log in to unmask]>
Subject: Re: Mac's Passing

Dear Ken,

I wish I met your dad.  I am sorry for your loss.  It seems as though =
you feel
you may be prepared for the loss of  a loved one, but that never ends up =
being
true. The finality of it makes it tough, but  you were able to be there =
for your
dad whenever he needed you and always have time to pick up the spirits =
of PWP's
on the list.  You are obvious in your respect, caring way and warm  =
demeanor.   I
know I  speak for everyone on the list when I say you truly have a very =
positive
influence on us.  Thank you from an admiring friend.

Deepest sympathy,
Greg Leeman

Ken Becker wrote:

> Barb, thanks so much, hearing comments like that make it easier to =
bear. When
> some time passes, I am going to ask my sister for a copy of the =
beautiful
> eulogy she wrote and gave at the funeral.  With all the wonderful =
people on
> the list,and our local friends and family, who have gathered around =
us, it is
> such a testament to what a great person dad was, it's almost like he =
is still
> with us.  He was so worried there wouldn't be many people at his
> funeral......Sinatra would have been jealous!
> And dad was never even ACCUSED of having connections to the mob!  Yes, =
I have
> survived with my sense of humor intact, it is part of the legacy.  In =
time, I
> will be able to ease some of the fears the people on the list may have =
about
> death, and about how caregivers may be spared needless fears,  etc. =
from what
> I have learned, from my father. He CAN rest in peace, we will take =
care of
> mom, as strong as she is, she deserves whatever we can do to help her =
enjoy
> life now.  Hope you are doing well.
> Thanks from me and the whole Becker  family.

------------------------------

Date:    Tue, 19 May 1998 06:31:07 -0600
From:    "Kathrynne Holden, MS,RD" <[log in to unmask]>
Subject: Re: Mac's Passing

Ken,
Please accept my condolences on the passing of your father. He taught us =
all a
great deal about courage and humor, and we are grateful even though we =
never met
him.
My very best regards,
Kathrynne

------------------------------

Date:    Tue, 19 May 1998 05:49:24 -0700
From:    Jeff Jones <[log in to unmask]>
Subject: Beds

Good day,

        I am looking, for Becky, for sources for hospital-like or =
convalescent
beds so that she can be more comfortable as she modifies her living
situation.

        Do any of you have any sources for this type of bed or advice to
accomplish the intent without actually purchasing one of the beds.

Thank you,
Jeff Jones for Becky 52/17
[log in to unmask]

------------------------------

Date:    Tue, 19 May 1998 09:15:06 EDT
From:    AllanRos <[log in to unmask]>
Subject: Re: Beds

Just bought one this week for Barbara from Craftomatic. Craftomatic does =
not
sell directly but through distributers. I found a wide variation in =
Price
between Florida and Massachusetts. The Florida dealer was very high =
pressure
and very high priced. There is an 800 number for the company but I do =
not have
it. 1-800-555-1212 will probably get it for you.

[log in to unmask]

------------------------------

Date:    Tue, 19 May 1998 09:25:43 EDT
From:    EDIELUT <[log in to unmask]>
Subject: Re: Ken

Ken
My condolences on the loss of your dad.  Edie

------------------------------

Date:    Tue, 19 May 1998 09:51:18 -0400
From:    Bruce Anderson <[log in to unmask]>
Subject: A couple  of  questions

Does anyone know of a source of a watch with multiple alarms on it - say =
4?
It'd be useful to remind to   take my pills now that this Mirapex seems =
to
be working.  (I can't afford a Rolex.)

And re Mirapex - is there any reason to avoid eating until 30 minutes =
+/-
after eating, as there is with Sinement?

THANKS !!!

------------------------------

Date:    Tue, 19 May 1998 07:11:27 -0700
From:    Joe Young <[log in to unmask]>
Subject: Multiple Alarm Watches

Bruce,

Casio makes a watch with 5 alarms.  I think I paid $49 or $59 for it =
from Radio
Shack.

Joe Young (66/6)
[log in to unmask]

>>Does anyone know of a source of a watch with multiple alarms on it - =
say 4?
It'd be useful to remind to   take my pills now that this Mirapex seems =
to
be working.  (I can't afford a Rolex.)<<

I do not work for, or have any financial interests in either Casio or =
Radio
Shack.  Have enough trouble working for myself.  Joe

------------------------------

Date:    Tue, 19 May 1998 07:15:40 -0700
From:    Julian Hansen <[log in to unmask]>
Subject: Re: A couple  of  questions

Bruce,
I can help with the first question .. .I found such a watch, I wanted it =
for
the same reason as yourself.   It is a Casio watch .  It is identified =
as a
Data Bank Telememo 30.  It can store  5 independent alarm times,  I =
think it
was about $70

Bruce Anderson wrote:

> Does anyone know of a source of a watch with multiple alarms on it - =
say 4?
> It'd be useful to remind to   take my pills now that this Mirapex =
seems to
> be working.  (I can't afford a Rolex.)
>
> And re Mirapex - is there any reason to avoid eating until 30 minutes =
+/-
> after eating, as there is with Sinement?
>
> THANKS !!!

------------------------------

Date:    Tue, 19 May 1998 11:16:15 EDT
From:    FMorgan238 <[log in to unmask]>
Subject: Re: Beds

It has recently been necessary for me to get a better bed for my husband
Chuck.  I live in Santa Monica and was able to get a lounger (it is like =
a
hospital bed) that has both the head and foot movable.  Medicare will =
rent
this for you!  The store was the Bay Area Wishing Well.  I believe they =
have
other outlets in the U.S. Hope this helps.  [log in to unmask]

------------------------------

Date:    Tue, 19 May 1998 08:49:08 -0600
From:    Nancy Burnham <[log in to unmask]>
Subject: Re: A couple  of  questions

Don has been using a wonderful pill box with a timer for years now.  It
holds your days supply of pills.  He sets his for every four hours.  He
can't always hear the buzzer, but when he looks at the readout it tells =
him
0.00 so he know he is over due.  Really the buzzer is quite loud--I can =
hear
it several rooms away.  They are $10.95 or 2 for $20.00.  The 800 number =
is
1-800-537-2118.  Item number 375670.  The timer can be set for as little =
as
a  1 minute interval to a maximum of 24 hours.  It has a persistent =
buzzing
alarm that last for about 1 minutes unless turned off sooner.  You can =
press
a reset function when it rings to repeat the same time interval.   The
company is independent living aids, inc  or ila.  Don lost his first one
last year and was lost without it.  The battery seems to last forever.  =
The
biggest problem it that sometimes he forgets to take it with him like
yesterday.  After it had gone off an hour earlier, I called him on his =
cell
phone to find out where he was.  He was plowing a field a couple miles =
away.
So I took it up to him.  Nancy B cg for Don 64/14+
Measures 3 1/2 x 2 x 1/2
-----Original Message-----
From: Bruce Anderson <[log in to unmask]>
To: Multiple recipients of list PARKINSN <[log in to unmask]>
Date: Tuesday, May 19, 1998 7:53 AM
Subject: A couple of questions


>Does anyone know of a source of a watch with multiple alarms on it - =
say 4?
>It'd be useful to remind to   take my pills now that this Mirapex seems =
to
>be working.  (I can't afford a Rolex.)
>
>And re Mirapex - is there any reason to avoid eating until 30 minutes =
+/-
>after eating, as there is with Sinement?
>
>THANKS !!!
>

------------------------------

Date:    Tue, 19 May 1998 11:22:29 EDT
From:    Jbtwelv <[log in to unmask]>
Subject: Re: Neuropsychological Testing/employment

Charley,

I am an 56, have been diagnosed with PD for 3.5 years, and am an =
insulin-
dependent diabetic (late juvenile, Type I onset at age 27of 30 years).  =
Daily
I take 4 Mirapex (1mg), 8 Sinemet (25/100), 2 Eldepryl (5mg), 1 Zoloft =
(50
mg), and 1Nortriptilyne (25mg).  Currently I'm trying to reduce the =
Sinemet
(which was 5, 25/250, at one point).   I take Humalog and NPH insulin, 4
injections daily, with the first three (Breakfast, lunch, dinner) mixing =
both
(from 3-11 units of Humalog, depending upon blood sugars -- which I test =
at
least 4 times daily with a Lifescan One Touch II system -- and 3 at =
Breakfast,
4 at Lunch and 2 at Dinner units of NPH) in the syringe, and the fourth =
(Bed),
just 9 units of NPH.  My blood sugars have been varying widely of late =
from
lows of 25 - to highs of well over 400, with an average in the 180's.
Obviously this is not good, and it follows the past decade of excellent
control.  I am working avidly with physicians and nurses at Boston's =
Joslin
Clinic to regain my previous excellent control.

I had a complete neuropsychological battery done at Bostun University's
Neurological Referral Center this past winter, and got the results on =
April 1
in an extensive interview with the department's head psychologist, my =
wife and
I in attendance.  It was a real eye-opener for me, demonstrating through
cognitive results that a number of things (more technical than I can =
report
effectively to you) are going on in the basal ganglia of my brain that =
account
for many recent behaviours (related to obsessing on certain tasks, to
exhaustion, to occasionally inopportune and inappropriate responses or
comments by me that cause wonderment by colleagues in my professional
environment, to being quite anxious about individual tasks and my work =
in
general (made worse when deadline crunches arise -- as they do often in =
my
work), to taking about 65 hours/week to get a 40 -hour/week job done.

Hitherto I had seen my Parkinson's symptoms as the more evident, =
physical
problems of voice loss, illegibility (even to me) of handwriting, of a =
stony,
rigid aspect (exacerbated at "off" times).  The explanation of the =
results of
the neurocognitive workup made it clear to me for the first time that I =
really
do have a serious health problem, one that I can't just paper over.  I =
began
to see as real difficulties in the workplace that others had either =
commented
on or reacted to, and also many situations at home which my wife had =
noticed
(to put it mildly) but which had not been as compelling for me.  I was =
trying
so hard to compensate for my difficulties, and thereby to avoid their =
real
impact, that I was missing the reality boat repeatedly.

Prior to last summer, I had only had two serious insulin reactions (by =
serious
I mean reactions that I could not get back in control myself, even =
ough memory to store
up to 30 phone numbers, and other nice features for a modest price (my =
wife
got it for me for XMAS, and so I don't know the precise cost  -- but I =
think
it was $75, discounted to $50.).
John B.

------------------------------

Date:    Tue, 19 May 1998 11:44:16 EDT
From:    HEIT BILL <[log in to unmask]>
Subject: Re: Beds

We have a "mattress factory" here in Fairview Heights, IL which custom
manufactures mattresses and sells automated beds--no safety rails and no
"trendellenberg" (moving the top or bottom up without bending the =
mattress)
but these raise heads or knees independently.  I do not know if they =
sell
traded-ins or used beds.

Their address and phone #:

Verlow Matress Factory Stores
1000 Lincoln Hwy.
Fairview Heights IL
622??

Phone #  1(800) 224-8375

Regards,

WHH 54/18
 PS: Sometimes a medical supply house will sell older hospital beds or, =
best
of all, go to a hospital auction.  There one stands a great chance of =
coming
away with a bargain.

------------------------------

Date:    Tue, 19 May 1998 11:54:58 EDT
From:    KMCRAE <[log in to unmask]>
Subject: Re: Beds

Medicare pays for the bed we have for Ken. If not on medicare, perhaps =
other
insurance will pay if the doctor orders it. Barbara Smith, CG/Ken/70/17

------------------------------

Date:    Tue, 19 May 1998 10:42:31 -0500
From:    Kathy Kunz <[log in to unmask]>
Subject: Re: TASMAR UPDATES PLEASE

Hi Brian--

After 5 weeks on Tasmar I find it helps prolong the Sinemet but haven't
lowered the dose yet.  I take Tasmar 100 mg 3xday, 7am, 4pm, 11pm; =
Sinemet
25/100 3xday, 07am, 1pm and 5:30pm; Eldepryl 5mg 1xday 7am.
I was taking Mirapex before starting Tasmar but at 1g 3xday the side
effects of insomnia, increased emotionality and that "wired" feeling =
made
me titrate off to try Tasmar.  Now I'm titrating up very slowly on =
Mirapex
again and  will level off at @ .5mg 3xday to see if I can lower Sinemet. =
 I
don't like to mix then initially, but now that I know what Tasmar does =
for
me, I  (and my neuro) think a combo would be helpful.  Tasmar doesn't =
give
me much added energy; side effects  limited to bright yellow urine--no
prob.  I don't know what it costs--I'm on an insurance plan  that costs =
$15
per prescription refill.
Kathy Kunz, 62/1994
----------
From: Brian England <[log in to unmask]>
To: Multiple recipients of list PARKINSN <[log in to unmask]>
Subject: TASMAR UPDATES PLEASE
Date: Monday, May 18, 1998 3:26 AM

HI List members

Please could you tell me how your medication are performing.
How many tablets you are taking.
Are you getting any side affects.
Have you reduced you intake of Ledopa.
Or any thing else you may have to say.
By the way Tasmar costs $366 Australian.It may be on Gov med list in Oct
this year for $3.20.
                 Yours inantisapation  Brian  England.

------------------------------

Date:    Tue, 19 May 1998 12:55:14 -0400
From:    george lussier <[log in to unmask]>
Subject: DR. RUSSELL BUTLER TO SPEAK AT CONCORD [MA.] WED.5/27

Dear Colleagues,
                LAST CHANCE NOTICE     LAST CHANCE NOTICE         LAST
CHANCE NOTICE

             The Parkinson Support Group@Emerson Hospital in Concord, =
Mass.
is pleased to announce its last speaker for the summer and to invite you =
to
attend

ON WEDNESDAY MAY 27, 1998,2:30-4 PM  RUSSELL BUTLER MD, THIS GROUPS =
MEDICAL
ADVISOR,
WILL BE JOINING US TO DISCUSS  THE NEWER ANTIPARKINSON'S  MEDICATIONS =
AND
ITEMS FROM HIS RESEARCH  INTEREST

THE MEETING WILL BE HELD IN THE WHEELER ASSEMBLY ROOM AT EMERSON =
HOSPITAL
IN CONCORD.  OPEN AGENDA MEETINGS WILL BE HELD ON WEDNESDAY, JUNE 10 =
&24th
AND THAT WILL WRAP UP THE SEASON UNTIL WE REJOIN ON WEDNESDAY, SEPTEMBER
9TH 1998 AT 2:30. IF YOU ARE IN THE AREA YOU SHOULD  THINK ABOUT =
DROPPING
IN FOR A "SAMPLE" DURING OUR LAST 3 MEETINGS

          FAMILY MEMBERS ARE WELCOMED AND ENCOURAGED TO ATTEND. TO LET =
US
KNOW OF YOUR INTEREST OR/AND FOR DIRECTIONS TO EMERSON HOSPITAL PLEASE
E-MAIL ME OR CALL MS DIANE MESERVE AT 978-287-3760. [ 8 AM-4 PM ]

MY BEST
   george

------------------------------

Date:    Tue, 19 May 1998 14:10:36 -0400
From:    Marty Rose <[log in to unmask]>
Subject: Tasmar reaction

I had a very strange reaction to Tasmar.  I would wake up in the night =
and
first thing in the morning with what I would call mild aniexty.  I had =
the
feeling like I was really nervous or scared of something.  It was very
strange.
It kept getting worse and worse.  I was also experiencing much more =
severe
anxiety then  ever before.  It finally ended one night when I got so
dyskinetic and anxious that I thought I was going to explode.  I know =
this
all sounds very strange and BELIEVE ME IT WAS!  ( and very scary as =
well.
Needless to say I stopped the Tasmar  immediately.  I am curious if =
anyone
else has experienced anything like that.

Marty Rose
[log in to unmask]

------------------------------

Date:    Tue, 19 May 1998 13:47:32 -0500
From:    Jerry Finch <[log in to unmask]>
Subject: WebRing Update

And now we are 25, with two in the queue. One of those is a
very special lady whom all of you know but most have never
seen, nor have you seen her dog, who will give a "high five"
for a piece of food and qualifies as the world's largest lap
dog.

To explain once again, a "Webring" is a circle of links to
sites which have a common thread - in this case the thread
is Parkinsons. Start at any place along the ring and by
clicking on the webring banner at the bottom of the pages
you can make a complete circle through all 25 sites.
http://www.webring.org/cgi-bin/webring?ring=3Dparkie;list

If some of you have asked me to do something and it hasn't
been done, please write a note to remind me. Unlike my wife,
I tend to forget things and need a reminder every so often
while she remembers everything I did (usually wrong) for the
past thirty years. If she can bring it up, so can you.
Seriously, just remind me. Thanks.




--
Jerry Finch
The Official PWP Dumpster Gang Hideout
http://www.newcountry.nu/pd/
The PWP WebRing
http://www.webring.org/cgi-bin/webring?ring=3Dparkie;list

------------------------------

Date:    Tue, 19 May 1998 13:55:01 -0500
From:    "(Martha Rohrer)" <[log in to unmask]>
Subject: Re: Funding Priorities: Where is PD?

In a letter to the editor of our local newspaper on May 16, a reader
reported the following information obtained from Congressman George
Radanovich in response to a query:

Federal money spent funding the following:

Heart Disease: 737,563 deaths .. 31 percent of total deaths ...$851,581

Cancer: 538,455 deaths .. 23.3 percent of total deaths .... $21,711,809

AIDS:  43,115 deaths ....  1.4 percent of total deaths ...   $5,598,000

The writer noted the disparities and cited examples of the attention-
getting devices used by AIDS activists, and ended saying, "We need to
communicate to our representative that we want action on those diseases
affecting us."

After reading that, two points came to mind: If allocations are based on
death statistics, we stand a weaker chance of appearing numerous enough =
to
be considered very seriously, since the immediate cause of demise is
likely to be something else, like pneumonia or an associated disease.

Also, I noticed was that it is those three diseases that tend to come to
the public's mind immediately. MS and Alzheimers do too. PD has gotten
media coverage with reports on palladotomies and other brain procedures,
but the public seems to have gotten the impression that these are cures.
We need to get loud and aggressive and informative to get our fair piece
of the money pie that pays for research. When business wants to improve
sales and their image, they hire a public relations firm with a good
track record whose job is to place their client's name and product in =
the
public's face wherever they go. Awareness and image is the way it is =
done.
Our group here on the PD list are doing that very well, but there are a =
lot
of people with PD who are hidden from the world and are trying to cope =
with
meager informational resources. Perhaps we need to seek out those
compatriots and get them involved too. There are a lot more of us out =
there
than our congresspeople are aware of.

Now where is my pen and paper .... Dear Congressman, Its me again.....

Martha Rohrer
[log in to unmask]

------------------------------

Date:    Tue, 19 May 1998 15:16:21 EDT
From:    Jbtwelv <[log in to unmask]>
Subject: Re: DR. RUSSELL BUTLER TO SPEAK AT CONCORD [MA.] WED.5/27

Turns out that I can join you on the 27th, and will look forward to it..

Thanks,

John Bachman

------------------------------

Date:    Tue, 19 May 1998 14:57:40 -0500
From:    Jerry Finch <[log in to unmask]>
Subject: Re: WebSite Addresses

Twenty-five website addresses that focus on Parkindons can
be found by looking through the PWP WebRing.
http://www.webring.org/cgi-bin/webring?ring=3Dparkie;list


--
Jerry Finch
The Official PWP Dumpster Gang Hideout
http://www.newcountry.nu/pd/
The PWP WebRing
http://www.webring.org/cgi-bin/webring?ring=3Dparkie;list

------------------------------

Date:    Tue, 19 May 1998 13:10:40 -0700
From:    Danielle Nonnemacher <[log in to unmask]>
Subject: I'm new

Hi my name is Danielle Nonnemacher and I have just been added to
this list address. I am a student at Rancho Verde High School in
Riverside California.I joined this list more to learn about
Parkinsns disease than to give any info or help. My great
grandmother has something kind of like Parkinsns but its not. I am
very interested in new discovers about the disease and all asppects
that surround it. Thats for your interest.

                        Sincerly,
                                *DANIELLE*

------------------------------

Date:    Tue, 19 May 1998 15:27:02 -0700
From:    ROBERT H LANGER <[log in to unmask]>
Subject: Tasmar     May 19 98

This is [log in to unmask]   13 Bi Pallodotomys Started Tasmar Apr l5,98.


I am truly impressed  by tasmar.  It is definitely proving to be
the most effective medication I,ve used to date. However I'm
also concerned about its possible side effects.  I,m getting the
recommended blood test for the liver.

I'm on 100 mg three times daily. along with sinemet 10/100.

Before Tasmar I was on maripex a maximum effective dose
of 3 tabs  3 times a day my experience with maripex was that
I needed increased amounts  of sinemet to maintain my fluctuating on
times. @While on the maripex in had to increase my sinemet from 1200 mg
to about 2400 mg      I tapered off the maripex completely before I
started tasmar.

Tasmar allowed me to adjust my sinemet to 1400 to 1600mg
I'm also making an effort to reduce the carbadopa by going to
10/100 sinemet.  I started with 25/100 sinemet and experienced great
results .  My worst problem was not being
able to sleep. I credit the cut back in carbidopa and the use of
oxybutynin 5 mg 1/2 tap 3 times a day with relief of my sleep problem.

If I remember right. Carbidopa is needed in a range of 75 to 300 mg.to =
be
effective.  any less or any more can limit effectiveness or cause excess
problems.

I'm very happy with the quick response tasmar gives.. I seem
to be very sensitive to Tasmar, but it  is taken 6 hours  apart.
My response seems to last only 4 hours. with the 100 mg dose.

I follow the same  avoidance of  protein high foods.and follow
a 3 hour dosing interval , this  is right for me at this time.  This
is a good working schedule.


Don.t give up/ find a cure     Bob Langer. mn  5-19=3D98

Please let me know of any and all possitive and negative  you
feel when taking Tasmar for an extended amount of time.
Best Wishes to all .

------------------------------

Date:    Tue, 19 May 1998 16:37:33 EDT
From:    DeitzM <[log in to unmask]>
Subject: Re: Funding Priorities: Where is PD?

Do yu have your petitons?

Helen Mason

------------------------------

Date:    Tue, 19 May 1998 16:42:55 -0400
From:    Gregroy Leeman <[log in to unmask]>
Subject: Re: Funding Priorities: Where is PD?

Hey Martha,

Every time I do research into funding of chronic diseases in this =
country I'm
very disappointed in our priorities.  People on the list are probably =
tired of
hearing me talking about this country's misplaced priorities.  But the =
facts
are very clear on this matter.  Quite simply AIDS receives far more than =
they
need in federal funding for disease research.  I said period!

AIDS is still a daunting problem for this country.  I'm not one of those =
people
who says that lifestyle has a huge impact on whether you acquire the =
disease or
not.  There simply is one reason we don't receive as much funding.  In a =
word
it is Organization.  In the 1980s when the AIDS virus took the country =
by
surprise, the largest group affected were gay men.  Although the numbers
breakdown has changed fairly significantly, this still is true today.  =
The gay
community had already organized for fear that homophobia was beginning =
to
endanger any chance of not being ridiculed, harassed and assaulted.  =
With
activists already in place organization became much easier and therefore
provided a greater ability to be heard and seen.

Multiple sclerosis is a disease that strikes a younger population that =
often
sees long periods of remission and therefore is far less debilitating =
over
longer periods of time.  Again this makes them far more mobile, more =
energetic
and also tied to younger population as a support system.  Although there =
are
far fewer at half million people afflicted with what can be a terribly
frustrating and sometimes deadly disease, Multiple Sclerosis has =
demographic
superiority with less than half the people affected.

As far as Alzheimer's goes, I don't have a clue except for they have
approximately four million people affected.  Other than that, they share =
many
of the impediments previously mentioned.  What's worse is that they are =
not
able to draw from all their faculties.  They certainly have more =
physical
mobility in most cases.

You are right in that we need a far more aggressive approach.  It seems =
that is
all Congress responds to.  What else do we have for evidence?  Funding =
levels
only speaking as loud as the voice asking for them.  This is a sad but =
true
story.  I think the signs are pointing to a much more aggressive =
approach by
the people of list.  But, we do need to make more noise.

I can hear the noise getting louder every night when I open my window =
and
shout, "I'm mad as hell, and I'm not going to take anymore!"

Regards,
Greg Leeman 37/7

(Martha Rohrer) wrote:

> In a letter to the editor of our local newspaper on May 16, a reader
> reported the following information obtained from Congressman George
> Radanovich in response to a query:
>
> Federal money spent funding the following:
>
> Heart Disease: 737,563 deaths .. 31 percent of total deaths =
...$851,581
>
> Cancer: 538,455 deaths .. 23.3 percent of total deaths .... =
$21,711,809
>
> AIDS:  43,115 deaths ....  1.4 percent of total deaths ...   =
$5,598,000
>
> The writer noted the disparities and cited examples of the attention-
> getting devices used by AIDS activists, and ended saying, "We need to
> communicate to our representative that we want action on those =
diseases
> affecting us."
>
> After reading that, two points came to mind: If allocations are based =
on
> death statistics, we stand a weaker chance of appearing numerous =
enough to
> be considered very seriously, since the immediate cause of demise is
> likely to be something else, like pneumonia or an associated disease.
>
> Also, I noticed was that it is those three diseases that tend to come =
to
> the public's mind immediately. MS and Alzheimers do too. PD has gotten
> media coverage with reports on palladotomies and other brain =
procedures,
> but the public seems to have gotten the impression that these are =
cures.
> We need to get loud and aggressive and informative to get our fair =
piece
> of the money pie that pays for research. When business wants to =
improve
> sales and their image, they hire a public relations firm with a good
> track record whose job is to place their client's name and product in =
the
> public's face wherever they go. Awareness and image is the way it is =
done.
> Our group here on the PD list are doing that very well, but there are =
a lot
> of people with PD who are hidden from the world and are trying to cope =
with
> meager informational resources. Perhaps we need to seek out those
> compatriots and get them involved too. There are a lot more of us out =
there
> than our congresspeople are aware of.
>
> Now where is my pen and paper .... Dear Congressman, Its me again.....
>
> Martha Rohrer
> [log in to unmask]

------------------------------

End of PARKINSN Digest - 18 May 1998 to 19 May 1998 - Special issue
*******************************************************************