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08-18-2010, 10:00 AM | #21 | ||
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In Remembrance
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Thank you Debi, this thread was like a rollercoaster ride but we had some laughs. i do realize that age makes all the difference, and it's important to know the ages of these people in studies who have not been treated but are diagnosed. An older person might be more likely to have an acetylcholine deficit. Just wondering if younger onset do.
I want the answer to be no, as you suspect. i am feeling better on one of the oldest drugs they have - nortriptyline. I don't want to stop taking it because it lowers acetylcholine. I think mine needs to be lowered. I feel like pd is overfiring for some. We are just wound too tight. Thank you to Todd as well.
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paula "Time is not neutral for those who have pd or for those who will get it." |
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08-18-2010, 05:24 PM | #22 | ||
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Senior Member
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Thank you, Debi Brooks.
Thank you, Paula W. For those of you who don't have a score card, Debi is an executive with the Michael J. Fox Foundation. Paula is a Senior Member and one of the moving forces behind this Parkinson's patients advocacy website. Joined August 2006 when the previous site melted down and this one was founded. She has posted 3,081 times, and this has been one of them. She can debate science and rock the boat at the same time. She is one of a whole gang who were here when the rest of us slept through the AMGEN GDNF debacle, a turning point, a litmus test, a tectonic shift. This site is their record. Both this group of old-time Parkinson's warriors and the Michael J. Fox organization, were created in fits of passion galvanized by an iron determination to eradicate this global disease from the face of the earth forever. Both say: Cure the disease. There were 1,500 science studies into Parkinson's last year. I am expecting a new agonist soon, cherry-flavored, bubble gum format. There seems to be a lack of seriousness in the studies. But this Neurotalk crowd and the Foxes are among the few who have declared war against the disease itself. Some stuff happened early on that appeared disappointing at the time - some sparks flew between these two passionate and determined groups. But the rest of us all lucked out. We have the best forum anywhere, full of proof of many things long ignored, such as what is the name of the disease that killed 90% of my substantia nigra before I got Parkinson's for the remaining 10% And we got Fox org, insightful and bold research, doing nothing but research, like a hound dog that picked up a trail. We got the best results from these two groups. This thread was started by a question from Paula. Debi answered the question. There are conversations. There is only one aim. Compare that to our recent hilarious attempts to even get a glance from Merck about sinemet. Just straight talk is all we want. But maybe Merck is not really deeply committed to action. But the communication here can be real, because everybody agrees on the single item of why we are gathered together around a bunch of scientists - the aim is to cure the disease. Paula and Debi work on that from different angles. I thank them both, and their posses as well. Paula, the tour - get an old school bus, paint it, and call it "Further". And people will either be on the bus or off the bus. It would attract attention from a few million Boomers. You tell them you are the only survivors of the Acid Test. |
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"Thanks for this!" says: |
08-18-2010, 08:20 PM | #23 | |||
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Senior Member
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What a way you have with words!
"Farther," . . . er, I meant "Further!" Peg |
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