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Kathleen's #1 is especially important. I know certain friends don't really understand what it is like, for example, to lose one's fine motor skills as I look OK. People tell me I look "good"!! Unless you're shaking with tremors or twitching from dyskinesia people think you are OK. I can't make people understand how painful it is to strangle when I speak. Or that I can't fine-tune or modulate my voice. They think I'm mad when I raise it. When trying to sign my Visa receipt for nails manicure and pedicure, the woman ordered "just press down harder on the pen". or "Just relax" to my dystonia-ridden hands. It is so frustrating and fatiguing. Ray Rayilyn Brown Director AZNPF Arizona Chapter National Parkinson Foundation [log in to unmask] -------------------------------------------------- From: "Kathleen Cochran" <[log in to unmask]> Sent: Tuesday, January 13, 2009 10:03 AM To: <[log in to unmask]> Subject: Re: Time to make some noise! > RE numbers: the number I always hear is a million in the USA. Does anyone > know where this comes from and whether it is credible? > > Re diagnosis: I don't know if this article was posted on the listserv, so > excuse me if it's already made the rounds.. One of the authors is my > neuro. > I donated blood for the study. :-) > > http://www.medscape.com/viewarticle/574010_4 > > Possibe items for the wish list: > > 1. How about promoting awareness and understanding of the disease and its > impact? Most people think that just movement is affected. > > 2. Better understanding of how exercise and sensory stimulation influence > the disease? > > 3. Better assistive devices? The classic cane is just not very helpful, > IMHO. > > 4. A thorough investigation of what *really* happened with Amgen and GDNF! > > > > > 2009/1/11 Peggy Willocks <[log in to unmask]> > >> I'm posting this in several forums and here for feedback. >> >> I love David Letterman's Top 10 list, which can be hilarious. But I want >> to >> talk to you about a few serious topics relevant to Parkinson's disease. >> Visit Faster Cures website and their Top 10 "wants" for this year >> www.fastercures.org . Faster Cures was established by the Milkin >> Foundation >> after Mike Milkin survived a bout with cancer. Now the philanthropic >> Milkins >> are putting a bundle into helping all diseases find faster cures. And >> they >> aren't alone. The Grove Foundation (Andy Grove - former CEO of Intel who >> also has PD) is uncovering every shell they can too solve curing or at >> least >> better treatment of PD than a 40-year-old drug. And look at the Fox >> Foundation; Mike's org has raised upwards of $132 million in helping find >> a >> cure. >> >> Everybody wanted "change," and believe you me - it's coming! I feel for >> the >> Obama administration.. One can only imagine a different political party >> going into office after 8 years; there will be so many hands out asking >> for >> help that some will have to go home totally empty. and it's going to be >> up >> to us (grassroots) to get their attention. So this thread is to >> brainstorm >> what our Top 10 list should be. >> >> TOP 10 LIST FOR THE PARKINSON'S COMMUNITY >> >> 1. FIND OUT HOW MANY PEOPLE HAVE PD! >> I have volunteered with PAN for 8 years (Parkinson's Action Network), and >> each year at teir forum we go through 2-3 days of "training" and research >> updates, then visit our legislators on Capitol Hill too tell our story. >> Every time somebody asks me, "How many people have Parkinson's in >> Tennessee?" And every time I have to answer, "er . . . um . . . I don't >> know." Enough said! >> >> 2. WE NEED A TEST FOR DIAGNOSING PARKINSON'S ! >> Not only are we confused as to how many have PD, but we aren't really >> sure >> if those diagnosed really have PD! - we're trying to cure a disease >> diagnosed purely by symptoms. And on top of that - our clinical trials >> are >> based on "observed symptoms." Who's to say that a number of people out >> there >> taking Sinemet for years were just shaking from anxiety on initial >> diagnosis >> and the rest of their symptoms are as a result of the meds. There's >> something wrong with this picture. >> >> 3. WE NEED __________________? >> aha! I'm turning it over to you for a few thoughts. >> >> Please join in this discussion >> >> Peg >> >> ---------------------------------------------------------------------- >> To sign-off Parkinsn send a message to: mailto: >> [log in to unmask] >> In the body of the message put: signoff parkinsn >> > > ---------------------------------------------------------------------- > To sign-off Parkinsn send a message to: > mailto:[log in to unmask] > In the body of the message put: signoff parkinsn ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn