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Old 11-12-2008, 11:44 AM
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pegleg pegleg is offline
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Join Date: Sep 2006
Location: Tennessee
Posts: 1,213
15 yr Member
pegleg pegleg is offline
Senior Member
pegleg's Avatar
 
Join Date: Sep 2006
Location: Tennessee
Posts: 1,213
15 yr Member
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Well, Ron et al - you swayed me to post on this one. I don't know why I decided to read the forums today, but I am glad I did and would like to respond.

I justt got back from my 8 - year evaluation post Spheramine surgery. Spheramine, as y ou may recall, was the implanting of retina dopamine-producing cells from a donor eye into the brains of advanced PWP's. I was one of the original 6 in this study at Emory in Atlanta.

After 48 months, the sponsors were still singing its praises att maintaining a 43% improvement in Phase I after 4 years! Then the first year Phase II results came out. They haven't been published yet, but it was said oint blank that they did not meet their endpoints - no way - case closed. One of the big sponsors pulled out their s upport, and now the future of Spheramine and even the original company looks bleak.

This is how this relates to your question. I have few but horrible off times. It may only occur one or two times a day, but that's enough to get in the way of being an acceptable quality of life. And my worst off time is often a few minutes after taking my meds. (I take Stalevo and Requip XL).

Compare this, if you will the results of being off ALL meds for 12 hours. This is what is required when I go for my annual evaluations. I am not sprinting by all means, but i can walk unassisted and perform pretty well on the neurological exam (finger tapping, timed walk, rising from a chair unassisted, etc.)

Charlie's answer about us producing dopamine when we rest may be part of the answer, but after 2 hours and walking up steps and everything before testing? I don't get it, but there's an answer somewhere in there, I'm sure!
Peg
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