On Sun, 9 Feb 1997 07:39:57 -0500 "Stan R. Houston" <[log in to unmask]>
writes:
>Barb, Mary Ann, Anne, Dennis:
>
>All of you are ABSOLUTELY right. Except for an occasional celebrity
>who comes
>out of the closet early in the PD progession, we're invisible!
Stan, Barb, etc. etc.
Stan wrote the "gang" and asked,if it's " worth a try" to be on the Oprah
show?
YOU BETTER BELIEVE IT IS WORTH IT!!!
Count me as an available YO-PWP. I can add URGENCY, because of my
young age of onset (37), and the overwhelming consequences in my life.
My pain is enormous and my immobility increasing, so I ask God every day
to lessen this pain, and to strengthen me to help others from what I am
learning.
Briefly, about myself:
I have been known as a leading human rights activist/advocate. I was
the Greater Portland Martin Luther King Holiday Committee Co-Chairperson
in 1985-6, the year we got the State Holiday through the legislature.
In 1991, I was a recipient of the Maine Martin Luther King Award for
Community Service, because I was then in my 7th year as State Coordinator
of the Maine Project on Southern Africa. I had lived in South Africa
from 1973-1979, and spoke widely in support of the anti-apartheid
movement . I went to Boston when Nelson and Winnie Mandela first
arrived after he had spent 27 years in prison.
I founded the A..P.D.A.-affiliated Greater Portland Parkinson's Support
Group
in 1994. It started with 13 people, and now has nearly 200. I am the
only YOPD in the Group.
I am the only Young-Onset PWP ("YO-PWP") to emerge so far in Maine.
There are so many exhausting days when I wonder how to encourage more
YOPWP's in Maine to "come out of the closet." I did this both for my own
sanity, and to advocate for the Udall Bill.
I am single, and have multiple caregivers.
I live on Social Security. ( Even this computer is rented. I do not yet
have a printer).
The Gannett Newspapers wrote two 1996 editorials (in the Portland
Press-Herald), about my having won over the ENTIRE Maine delegation to
Washington to back the Udall bill. I will get copies and send by fax or
snail mail.
Now 47, I am facing either pallidotomy, or something dramatic, unless
the NADH I am trying is strong enough to forestall surgery.
I am afraid of the slurred speech and other problems that pallidotomy can
cause, so I am at a crossroads without knowing which path to take.
In my first PD-related public appearance, I was honored with a standing
ovation at the Maine Democratic State Convention in May, 1996. As a
disabled delegate with two caregivers on the convention floor,I presented
a platform amendment in support of the Udall Bill, which passed
UNANIMOUSLY.
Now I am working with my Republican state representative, WHO HAS
PARKINSON'S, possibly to get a Governor's Proclamation like the one we
saw from Virginia that was just signed by Governor Allen.
.
Ivan Suzman
47/10 (dx. March, 1989, but I count by when symptoms were first visible}
Portland, Maine land of lighthouses 30 deg. Today 5 Canadian geese
overhead--heading north for the spring??
P.S. GO Udallers GGGGGGGGGGGOOOOOOOOOOOOOOOOOOOOOOO!!!
