>
>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
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