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Old 05-08-2012, 04:28 AM
Bob Dawson Bob Dawson is offline
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Join Date: Dec 2008
Posts: 1,135
15 yr Member
Bob Dawson Bob Dawson is offline
Senior Member
 
Join Date: Dec 2008
Posts: 1,135
15 yr Member
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Quote:
Originally Posted by boann View Post
I am currently not on any pd meds. Mirapex didn't seem to be helping much after 11 yrs on it. Cut it down from 4.5mg/day to 1.5mg/day a while back - have been drug free for about a week and nothing much seems to have changed.
OMG. This is what Andy Groves from Intel used to speak about - that science should investigate these "aberrations". Right now, if a therapy or drug does not help at least a third of the patients, but does wonders for a few - it is thrown out. But science should investigate the few who do benefit. He was talking about the infamous GDNF trials, where one patient improved by 80% - and that was all we heard about it. Other patients, supposedly, did not do so well, so Amgen threw the whole thing out of the window - and the patient who was 80% better was ignored, because he was not the majority. At the time Andy said it made him furious that they did not try to learn everything they could from the 80 percent improved guy.
I am being incoherent but you can probably figure out what i am trying to say
and you stopped taking Mirapex after 11 years and no drugs at all for a week? The FDA and NIH helicopters should pick you up and take you to the top scientists and tell them to at least come up with a theory. Spotlights should be focussed on these stories - and there are many such stories - about different people living the disease differently
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