Fwd: Re: PATRICK SURVEY TO ALL PD'S ONLINE HELP

[Margaret Tuchman <MTuchman@xxxxxxx>]

Date            Tue, 26 Dec 1995 19:50:23 -0800
From:   HENRY GUTTENTAG <hgutt@xxxxxxxxxxxxx>
Subject:        PATRICK SURVEY TO ALL PD'S ONLINE HELP

Dear  Patrick Martin and Friends:
I was happy to read that Patrick is still willing to undertake the
 enormous
job of entering our individual profiles into a database.  It is a very
exciting and promising endeavor. I urge you to participate.  Compiling this
info has been an eye opener for me. I have never looked at my situation in
such an analytical way.
Name:   Margaret Tuchman  -- E-Mail: MTuchman@xxxxxxx --  Zipcode:08540
Age:   54  --    Weight: 120lbs. --   Sex:  Female --   Eye color:blue
Years Diagnosed:  15   Years Medication: 15

PD Medical Indications/Symptoms - INCREMENTALLY
Beginning/Onset Stage                 Middle Stage                Present Stage


pin-rolling - left hand                       rigidity                  
dystonia  (neck)

loss of left arm swing                        dyskinesia                
festination
micrographia (small handwriting)              insomnia                  
bradykinesia
tenting of left hand                          depression                
constipation
curling of toes                               foot spasm
                                         nightmares
PD Medications
Amantadine (Symmetrel) 100mg      Eldepryl - 5mg x 1     Sinemet - 25/100 x 8
Artane                                    Sinemet  - 10/100*    Pergolide  
0.25mg x 4
Benadryl - 25mg                   Sinemet CR - 50/200*  Inderal
                                        *dosages varied

Non-PD Medications
Amitriptyline (Elavil) -  25mg at bedtime as a sleeping aide
Alprazolam (Xanax) 0.25mg at bedtime as a sleeping aide & antidepressant
Premarin - 1.25mg - hormone replacement

Alternatives
Vitamin E - 800mg               BetaCarotine
Vitamin C - 2000mg              NADH - 10mg in the AM. on an empty stomach
Vitamin B6 -  50mg              Melatonin - 3mg at bedtime

Personal Health History:  endometriosis, total hysterectomy (1976),
Family History:  There is no known  PD
Toxic Exposure: periodic pesticide and insecticide use (before I knew
better), well water, cigarette smoking.

Comments
For the past 4 weeks I have switched over to Liquid Sinemet with the hopes
of evening out the on/off periods.  It was wonderful for the first 10 days
and then I "crashed". During my "off" times I experience tremors,
bradykinesia, slurring of speech, drooling, festination. During my "on"
times I have dystonia in my neck, dyskinesia and swaying. I am currently
drinking my sinemet either every 2 hrs, or every hour depending on my
symptoms . I am having a problem scheduling meals -- food (not only
protein) has a negative effect on my sinemet absorption. Melatonin has been
helpful in allowing me to sleep 5+ hours. NADH has not decreased my need for
sinemet, but I feel that it "may" help (just like chicken soup) in
other ways? I am still working (decreased hours) and driving (as my
symptoms permit). Keeping my stress level as low as possible, exercising and
doing Feldenkreis Movment excercises have been most helpful, but are not
always "doable".

Future Plans
I am exploring VIM; am still hesitant to pursue pallidotomy or
thalliotomy. Keep a sense of humor and wait for the news or some great
discovery.
Best Wishes to All for the upcoming year!

Margaret Tuchman