^^^^^^GREETINGS FROM^^^^^^^^^^
Ivan Suzman 47/10 [log in to unmask]
Portland, Maine land of lighthouses 29 deg. F unseasonably cold
***********************************************************
Hi Barb Mallut and Listmembers(and Hello to Michel, Kathy K, Helen D of
Porland, Oregon, Dennis of Australia. Don and Viv, KenB, BBruce,
Dr.Charlie, Fred in NY, Lisa in the Islands, YOPPERS and Yappers and
YOPWP's with YOPD and more..
It's ME again. Ready to SHAKE IT UP...
This morning, I've been thinking about AIDS activism, as a MODEL for
Parkinson's activism.
I've also been pondering the activism of one of my role models, Mr.
Muhammad Ali, and his famous slogan:
" Float like a butterfly,
sting like a bee!"
I am feeling FEISTY, now that I have MIRACULOUSLY acquired a lover,
and a morning caregiver, who both see Parkinson's as a challenge, instead
of as a wall. It is so wonderful to be ready to rock 'n' roll
again........
Yes, Barb Mallut, you are SO right when you say,
>I sure agree with ya about the need for us Parkies to be seen AND
>heard in the
>media. And I believe it's most important to aim TONS of those
>messages at
>the younger-than-112-years-old-crowd!
Well, folks, FACE IT, the Udall Bill has come and gone. We PWP's are
already forgotten by the public. There's NO VISIBLE follow-up.
We Parkies are INVISIBLE ONCE AGAIN.
Sorry to start everybody's morning with tough-love, but honestly, if
you ask around, NOOOOOOOOOBODY is talking about PARKINSON's, except US.
Are we in a post-Udall period of PARKINSILENCE?????????
Consider this:
AIDS gets about $1600 million/yr of much-needed NIH funds. With
the Udall Act in place, Parkinson's gets its first significant piece of
the pie:$100 million/yr.. Why are we so far BEHIND???
Being a gay man, who has seen friends waste away and die from AIDS,
I can tell you that it is the legacy of publicity-seeking and
TV-conscious PWA's, some of whom have died, who have made all the
difference. It is the slogan, "SILENCE = DEATH" that ACT-UP used, that
got PWA's LOTS of TV coverage.
When ACT-UP (The Aids Coalition To Unleash Power) marched,
protested, wore militant black leather, and sat-in at school board
meetings, AIDS research Congresses and political and medical
conventions, desparately-needed MONEY flowed to AIDS research.
Maybe many of our Listmembers are justiiably conservative, and
AIDS scares you. Well the Act-Up slogan, "SILENCE = DEATH" is FULLY
applicable to Parkinson's, and can suggest to us how to become more
VISIBLE.
Either we make LOTS of noise, and we are VISIBLE on TELEVISION,
or we're unnoticed.
I was talking over morning coffee with the love of my life, Jay,
and he was saying, "we MUST get on TV, and in ALL the media!"
Barb, you hit the nail on the head! I still think a World
Congress of PWP's, and their CG's, and for each country, a National
Congress of PWP's and their CG's is needed NOW, with TONS of TV coverage.
In the meantime, while working towards these Congresses, we
must become more MEDIA-ORIENTED.
That takes a massive commitment from all of us.
IVAN
On Sun, 23 Nov 1997 20:56:23 -0500 Barbara Mallut
<[log in to unmask]> writes:.
>
>I sure agree with ya about the need for us Parkies to be seen AND
>heard in the
>media. And I believe it's most important to aim TONS of those
>messages at
>the younger-than-112-years-old-crowd!
>Let my fellow "Boomers," and the "Generation-X" bunch know that
>Parkinson's
>is NOT an "old person's disease" any longer. It's time to make the
>millions
>of people UNDER 50 know that LOTS of folks in THEIR age group are
>getting hit
>with Parkinson's and will stand a chance of having it for the better
>part of
>half their life-time if a cure isn't found.
>
>Unfortunately, we're still all too invisible!
>
>Barb Mallut
