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> >Attorney-General Janet Reno >c/o Sheila Lyon >Public Affairs Office, >Office of the Attorney-General >Room 1228 >950 Pennsylvania Ave. NW >Washington, DC 20530-1228 > >Dear Sheila and Ms. Reno, > > I want to start this letter, which asks the Hon. Janet Reno to help >persons like myself, who suffer from Young Onset Parkinson's Disease, >by telling you that I feel very grateful to you, Sheila, for warmly >and receptively listening to my telephone call yesterday. I hope you >can share this letter with Ms. Reno, personally, as soon as possible. > > What the Parkinson's community is fighting for is FULL funding of >the Parkinson's Research, Education and Assistance Act of 1997, also >known as the Udall law. Although a $100,000,000.00 appropriation was >approved in November of 1998, we are being told by the Parkinson's >Action Network in Washington, that only about $36,000,000.00 of the >total was actually spent during the past 12 months. > > I am writing as an individual, although I am a known PD patients' >and PD support group members' > advocate. I am writing because my body is breaking down from 14 >years of fighting PD, since age 35. > > I am already in the early advanced stage. I have to be with a >personal care attendant around the clock. At times, a small miracle >happens, and the four medicines I take allow me to have a loud enough >voice and >a smooth enough gait to function without being visibly abnormal. > > My PD surfaced in 1985, as stiff shoulder blade muscles on the >right side, and as a right shoulder that was always painful and stiff >when I woke up. By 1987, my arm and hand stopped swinging when I >walked. That spring, of 1987, I was swimming in a shallow lake, and >suddenly, my entire right upper limb froze, and >I nearly drowned. That near-drowning shocked me into going to talk to >doctors who specialize in neurology. >21 visits and 9 doctors later, Boston University diagnosed me with >YOPD, which has now progressed to my being nearly TOTALLY paralyzed >when my medications somehow do not help. > > I have gone from being a college Anatomy Professor to living on >$687/ month of Social Security DIsability Insurance. I am very >uncertain about even the next month or two, when the colder weather >starts to settle in. I have been both to Boston University and to >Massachusetts General Hospital (Harvard) this spring. One opinion is >to have a left-sided pallidotomy, even though it is well known that >brain surgery, which carries the risk of stroke or death, may not be >the best option. > > I am now 49. In my last two years of battling this devastating >illness, I have made six TV appearances, four of which are available >on videotape. I sent one videotape to Ms. Reno, through the office of >my U.S. Congressman, Tom Allen. last year. I also have been working >closely with the Portland office of Senator Olympia Snowe, through >staff member Linda Lyon, and with Sen. Snowe's Washington health aide, >Jennifer >Griffith. > > Please, Ms. Reno, do whatever you can to help us with the Udall >law. We need visible leaders like you to help us get the FULL funding >of the Udalll law, to put into motion the opening of PD research >centers, federally funded, so that a cure to this horrible disease may >be found. > > Sheila, thanks again for what you are doing to help all of us with >PD, and our weary caregivers. > >Sincerely yours, > >Ivan Suzman 49/39/36 (49 now, 39 at dx, 36 onset of visible symptoms) >9 Range Street >Portland Maine 04103 - 1135 >Tel: 207 797 8488 >e-mail address: [log in to unmask] > ^^^^^^ WARM GREETINGS FROM ^^^^^^^^^^^^ :-) Ivan Suzman 49/39/36 [log in to unmask] :-) Portland, Maine land of lighthouses 62 deg. F :-) grey skies ********************************************************************