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Mary Y and Terrie... You've both painted such a graphic picture of the PD Allience meeting that I almost felt like I was there! It sounds like a dynamic and exciting experience. I get the feeling that much (if not all.... ) of the squabling we've had on the List the past few months was also alive and well at the PD Allience meeting. It's fortunate that cooler heads prevailed.... It appears to ME that the birth of this current argumentativeness (is that a word?) has grown out of utter FRUSTRATION amongst our Parkie and caregivers brothers and sisters who put in so many years of grassroots efforts and expectations into getting the Udall Bill passed, only to see no PD research funding come of that tremendeous effort (so far, anyway). Since the passage of the Udall Bill, and the subsequent stagnation of that Bill as we futilly try to push thru the promised funding, we're like a great big roiling mass of Parkinsonian ANGER waiting to explode or to be INSPIRED FURTHER. You two wonderful women surely have done the latter with your respective accounts of the PD Allience Meeting! YOU GO, GIRLS!! Barb Mallut [log in to unmask] BTW -----Original Message----- From: Mary Yost <[log in to unmask]> To: [log in to unmask] <[log in to unmask]> Date: Tuesday, February 09, 1999 2:27 AM Subject: Parkinson's Alliance Meeting >Just home from the Parkinson's Alliance meeting -- such an intense >experience is not possible to convey in words! If I had taken pictures, >they would have been eloquent: > > Dr. Peter Morabito in the elevator, comforting Victor, his Great Dane >trained to help PWP's with balance. Victor is good at his work, but has a >personal phobia of elevators. A sign on his back says that he is a >working dog. "Do not pet me", which I noticed while I was scratching him >behind his ears. > >Terrie Whitling, moving us to tears with her summary of how the meeting >had given her hope. In her lap was a piece of needlepoint, a bookmark she >had been creating so painstakingly -- spelling out MARY, a surprise gift, >worthy of the Parkinson's Art Exhibit, opening this week in Los Angeles. > >Jim Warsaw, commanding quiet and attention to stop a flurry of arguments, >barely controlling his tremor as he spoke with passion and laser-like >focus. His point: those of us with Parkinson's don't have time to dink >around. Every effort we make has to be thought-out so we can be effective. > >Kim Seidman and Carol Walton, two blondes with brains in contradiction to >all the blondes jokes, iron hands in velvet gloves, seizing the floor >when open discussion had progressed to the point where it needed to be >wrestled to the ground and formed into action plans These two are >formidable, especially since in the back of their memories are images of >their fathers, who had hard last years with PD. > >Dr. Abraham Lieberman, ignoring his own fatigue as he copes with postpolio >syndrome, seemingly at home with us, open to answering however many >questions we had. > >Margaret Tuchman, dyskenesia all over the map, describing to us at dinner >some of her dreams such as establishing a place of safety for abused >horses. Her selflessness and joie de vivre quietly set the tone wherever >she is. > >Jim Cordy, "the General", stretched out on the floor to relax while a bunch >of us re-capped the day. He good-naturedly admitted to being "a pain in >the ass" and promised to stop talking so much -- which was answered by >howls of disbelief. And a smile like sunshine from himself. > >And many more images. I wish you all could have been there. > >"For I have promises to keep, and miles to go before I sleep..." >We left with the promise that each of us would send the Listserv a note >about the meeting. I've just come home and it's after midnight. I feel >compelled to keep my promise, though I know this note gives only an >incoherent sketch. Other people will fill in the details and give you the >substance. And in time I'll pull together more clearly what I think it >all means for us. In brief -- there's a lot to do if we want a cure, >but after all these years, I'm starting to believe that we can do it. > >Mary Yost (one of many Mary's on this list), age 50, diagnosed 1990, >mother of one wonderful son who won't ever have PD if we find the cure >