^^^^^^ WARM GREETINGS FROM ^^^^^^^^^^^^ :-)
Ivan Suzman 49/39/36 [log in to unmask] :-)
Portland, Maine land of lighthouses deg. F :-)
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On Tue, 5 Jan 1999 12:27:13 -0500 Hilary Blue <[log in to unmask]> writes:
>Always remeber, if Ivan exists, there are many more out there just
>like him.
>For all their sakes, and for yours and mine, his story must be told.
>
>Hilary Blue
>
Dear Listmembers,
If I am not excluded from the WETA coverage of the Michael J. Fox
story, I would try to present OUR story. I know I ca, cover many issues
we face.
I would hope to represent every person with any type of Parkinson's..
My friend, Diane Atwood, R.N and Medical Correspondent at WCSH-TV ,
NBC-TV, Portland has just told me she will be calling Nicki Hoose, at the
1-703-998-2600 ext 2150, to try to urge that my I am included in the
Lehrer Hour.
I do volunteer work-such as handling phone calls asking about support
groups, being a patient representative on panel disussions for Nursing
Agency personnel who need continuing education credits , providing
presentations to the local support group on the Udall Bill, meeting with
state and national legislators about long-term home care budget issues,
and giving support and information for any and all callers or
correspondents. I have handled 3 Parkinson's emergencies in the last two
months. One PWP was hospitalized, one is still working and the third is
newly diagnosed as a PWP. People seek me out at my house at all hours,
for a better knowledge about living with Parkinson's. I have successfully
roused Maine's Congressional delegation to assume much stronger advocacy
roles in Washington. I am better positioned than ever to assist our
community to get FUNDS FOR RESEARCH FOR A CURE.
I have a background for many years as a college professor and as a
human rights advocate, and having lived in South Africa, I am even the
recipient of personal correspondence from MR. MUHAMMAD ALI.
I am not camera-shy, and have been on live and taped broadcasts on
Maine's CBS, NBC and local cable access TV stations. I initiated the
"TV-ready" PWP and CG list that now has 77 volunteers. I have made 6 TV
appearances about Parkinson's in 1998, and am Maine's Parkinson's
Awareness spokesperson, a job I will pass on to one of two top candidates
in Maine when I complete my responsibilities on January 10,1999. I am
hoping to work with Barbara Blake-Krebs on radio work in the near future.
So, Nicki, grab me for the Lehrer Hour while my rates are still
reasonable! And joking aside, thank you for the opportunity a taped
appearance on the Lehrer News Hour represents to the Parkinson's
Community.
Ivan Suzman
Portland, Maine
PWP 49/39/36
I feel fully able to present some of our issues-ranging from
caregiver issues to the cost of medicaitons issues to assisted living
issues to young-onset issues. I know that we must put education of the
public, publicity about our lives, and the need for an infusion of
earmarked research funds at the top of our wish lists.
I do not hide the fact that very recently, I have personally been
suffering a serious decline in my own health, despite the success I have
had by adding Tasmar to my other drugs. I am a victim of a Medicaid
system not designed to attract caregivers except on an ever-changing,
part-time basis.
