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Rees: I am ending my first six months in the study and am about to enter the
phase in which I am guaranteed to receive the drug. For the first 6 months,
participants receive either real drug or placebo without knowing which they
are getting. If I was getting placebo I will now get two years of drug. If I
was getting drug, I will get it now for 18 months more.

It takes dedication to be in the study. The drug is self administered twice
daily by injection and you have to visit Philadelphia every six weeks for an
evaluation during the first six months and less often thereafter. The study
is joint with another at the University of Pennsylvania, study a procedure
called SPECT scan. In lay terms, this is a procedure which (they believe) can
count the nerve endings (or some such) in the brain and once a baseline test
is done, comparative tests over time would give an indication of the
progression, regression or other possible status of the disease.

We are asked not to discuss our opinions concerning the efficacy of the drug
on us with others who are in or contemplating joining the study in order not
to influence attitudes toward the study one way or another since some of the
testing involves subjective questioning over time of the participants. I will
say that I jumped to join the  test on the off-chance that the drug works and
I can't understand why anyone within hailing distance of the test site in
Philadelphia wouldn't be eager as well. I live in Connecticut, 150 miles door
to door and I make the trip willingly. There are others in
the study who fly in for their evaluations. Think of it! A possible cure or a
neuroprotective result if it works. The only downside I can observe is the
requirement that to remain in the study, you must keep your PD medicine
levels fixed for three months before joining and for the first six months of
the study. I developed edema in my legs, presumably from my Requip dose, 4
months into the study. The obvious answer would have been to wean off Requip
until the edema disappeared and then try another Agonist. The study people
agreed but that would have meant leaving the study because of the
aforementioned fixed drug regime requirement, an outcome which was less
desirable for me than getting rid of the edema. So I lived with the edema for
the sake of remaining in the study. I will experiment with my meds as a
solution against the edema when my initial 6 month period is over in a few
weeks and the fixed meds regime is no longer a requirement.

In case I got too windy for my answer to be meaningful' I'll summarize in
short: JOIN.

Regards,

Paul H. Lauer