^^^^^^WARM GREETINGS FROM^^^^^^^^^^^^^^^^^
Ivan Suzman 48/12/9.5 [log in to unmask]
Portland, Maine Land of lighthouses 43 deg. F
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Dear Parkinson's Community and friends,
Michael Claeys of the Parkinson's Action Network suggested that I
provide a few helpful hints to those who may wish to know how I managed
to win, in a relatively short time ( I think it was less than a week)
both of Maine's U.S. Senators to sign on to the October 5, 1998 letter,
calling on the National Institutes of Health to dramatically increase
truly Parkinson's-focused research grants.
I guess I would start by stating that I was never afraid to be
passionate. Every person I talked to was a new friend to enjoy. As I
told my story over and over on the much-used speaker telephones at home,
I kept a 3 x 5 card with a hand-drawn caricature of a smiling face, that
says "ALWAYS USE FIRST NAMES!" right by my telephone in my kitchen, to
remind me to maintain a positive attitude.
I made sure that I developed a friendly, personal network of contacts
in each of Maine's four congressional offices. I NOTED THE NAMES of the
staff members I talked to, especially because many legislative
internships for students, and shifting, temporary assignments of staff
can cause quick changes in who will actually answer the phone in a
Congressmember's office.
I learned to listen carefully to the EMOTIONS at the other end of the
line. I tried to be very INFORMATIVE, and brief. I explained each and
every time who I am, that I have Young Onset Parkinson's Disease. I
explained that in some circumstances it can be, unfortunately, fatal.
Whenever my medicines wore off during a conversation, I used a speaker
phone for more CLARITY.
I made sure that my words, even if labored, were understood.
Having a COPY of the UDALL ACT at my side was a huge help I actually
read the entire contents of the Act to high-ranked legislative aides in
Washington, who, although sympathetic, had not really informed themselves
of its contents.
I always emphasized the potential VOTING BLOCK that we Parkinson's
people and our many care providers represent. In Maine, with a smaller
population than in many states, a single vote can actually carry an
election. Every voter counts.
I used the highest numbers estimated by OFFICIAL sources. Whereas the
APDA and the NPF have used figures of about, I believe, 1.5 Parkinson's
sufferers ("PWP's") in the USA, I avoided using my own estimates of
perhaps double these numbers. I did explain how hard it is to estimate
numbers fully.
I explained carefully what my WORST SYMPTOMS are. They are so numerous
in me that it is very clear, especially the loss of control of my body's
core temperature, that a quiet and honest explanation of what is
happening to me was convincing enough to win the support of nearly anyone
I met or talked to for even a brief period.
In meetings with support groups, I would WEAR LOCALLY-MADE PINS to
emphasize that a real, LOCAL effort is under way to increase Parkinson's
Awareness.
In meetings in the offices of Congresspersons, I would not be upset if
my medicines wore off. In fact, in Olympia Snowe's office in Washington,
my trusty orange juice somehow leaked out of my bookbag.
Senator Snowe's office soon looked like a library of yellowing, 'antique"
documents, and we laughed as we tried to blot off orange juice and
present her with information. I MADE A POSITIVE OUT OF AN AWKWARD
SITUATION.
We all know that persistence pays off. Sonia Nielsen of Denmark ends
her posts with 'NEVER GIVE UP." I always kept this in my mind.
I frequently referred to THIS LIST OF 1600 PEOPLE on instantaneous
e-mail!!
It's late at night, and my "on-period" is ending. I am stiffening up,
so I must close here, take medicines and go rest. Hope these hints help
out.
Ivan
