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Hi Ann and List: I think my last major post on the subject was last October.
At least that's the latest I find in my file cabinet. I am sending a copy of
it below. First an update.

My initial symptoms when dx were tremors and micrographia to some degree or
another. Sometimes I could write somewhat legibly and other times not. I is
now almost 2 1/2 years later and I've spent a year of that in the Ganglioside
study during which time I have had the real deal for at least the last six
months and who knows what for the first six...maybe drug, maybe placebo.

I am not otherwise passive about the disease. I take large doses of
antioxidants and a large dose of CO Q10 daily. I am still active in my
business life so my brain and body get exercised. Finally (knock wood), it
would appear that the disease progresses slowly for me. So now 2 1/2 years
later, I tremor slightly more, my handwriting is markedly improved, and
starting with an initial prescription of Sinemet CR 50/200 b.i.d. I now take
no Sinemet and have substituted Requip to control tremor. As we speak I am
planing to titrate down on the Requip to see how far I can go without getting
uncomfortable.

Is it the Ganglioside? I don't know. I sure don't intend to stop taking it as
long as they'll let me have it. Is it the concoction of vitamins and
supplements (the list and quantities of which I would be glad to supply if
anyone asks). Again I don't know but I'll keep taking them as long as I can
afford to buy them. Should anyone try to join the study? My advice was 'what
do you have to lose' even before the relaxation of the micrographia. I would
certainly attempt to join if I could spare the time and afford the
transportation.

I have the study paper sent to all applicants and will share it as requested.
I don't have a scanner so I can't get it on the list but I'll be glad o copy
it and mail it or fax it to anyone who writes enclosing address and or fax
number.

So, hopefully when I now hit "paste" the old posting will appear below. If it
doesn't, I will send this anyway and retype the old posting tomorrow. Too
late tonight.

Paul H. Lauer (hitting 'paste')

I am enrolled in a Phase 111 Clinical Trial of the above referenced drug
which if effective, could prove to be neuroprotective against Parkinson's
disease as well as effective in 'rescuing' injured dopamine nerve cells and
promoting their survival. The study is still recruiting volunteers to
participate from their home with scheduled visits to the study office in
Philadelphia. I am from Norwalk, CT. and Have met people enrolled from
'Florida, California and Louisiana. Aside from two, in-person evaluations,
applicants must have been on a stable meds regime for three months prior to
evaluation and remain on an unchanged regime for the first six months of the
study.
The study is double blind, placebo controlled, with patients to receive the
actual drug randomly chosen. The initial period is 6 months and those
electing to continue thereafter are guaranteed to receive 2 years of the real
(not placebo) drug. Two consecutive years if the first 6 months were placebo
and another year and a half if the first six months were actual drug.
Evaluation is threefold. Each participant self evaluates on each visit to
Philadelphia; Similarly, two Drs'. conducting the study perform evaluations
on each visit; and every six months, a SPECT scan is read. In simple lay
terms (all I'm capable of), this machine counts the neurons in the brain so
once a baseline is established, the results of these tests should indicate
disease progress or lack thereof. I believe this SPECT scan is also under
test simultaneous with the drug test.

So if anyone's appetite is whetted, call the study administrators (excuse me
ladies if I have your titles wrong) Stephanie Ferraro and Judy Hillman at
215-955-8700. The study is being run by Jay S. Schneider, Ph.D., Professor
Depts. of Pathology, Anatomy and Cell Biology, and Neurology at Thomas
Jefferson University

Paul H. Lauer

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