^^^^^^WARM GREETINGS FROM^^^^^^^^^^
Ivan Suzman 48/10 [log in to unmask]
Portland, Maine land of lighthouses 38 deg. F It was 90 F
yesterday!!
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On Tue, 31 Mar 1998 19:31:55 EST Helen Mason <[log in to unmask]> writes:
>Govenor John Kitzhaber has declared April to be Parkinson's disease
month in Oregon... {SNIP}..
-Helen Mason RN
Dear Listmembers....
Here goes Ivan trying to FIRE :UP the Parkinsonian and Caregiver
troops.......PLEASE read on....
(In Memory of Alan Bonander, Much Missed Young-Onset
Parkinson's Activist)
And, In Honor of Glenna Wotton Atwood, Maine author and
Parkinson's sufferer.......
ATTENTION PARKINSON's ACTIVISTS and ADVOCATES and people ready to SCREAM
for help:
_______________________________________________________________________________
NEWSFLASH! NEWSFLASH!
WE have done the same in Maine that Helen did in Oregon! Gov. King's
proclamation has just been completed, and adds to the joint Maine
House-Senate Resolution of last week- the Proclamation and the
Resolution BOTH call for FUNDING THE UDALL Bill.
PUSH PUSH PUSH That's what we've been doing here. I am so DISGUSTED that
the Udall Bill or Act is still floundering around in Washington. It would
give us 100,000,000.00 dollars to figure out what causes Parkinson's, but
it sits unfunded and nearly unmentioned by the media--and I am ANGRY--
Maybe we should PUSH PUSH PUSH in the streets. Young PWP's in
wheelchairs, with their EXHAUSTED caregivers and lovers and friends, in
particular, bellowing our heads off 'til we're HEARD...
Should I have to WAIT for Luciano Pavaratti to glorify and sancitify us
in Latin, in the Opera House in Rome, to get the politicians to realize
that we young Parkinsonians will be DEAD before the Udall Bill Act or
whatever is appropriated???
Does my epitaph have to say, "He fought a valiant battle, he broke all
the rules, but alas, he succumbed?"
PUSH PUSH PUSH--like my friends suffering from AIDS have had to do.
PUSHPUSHPUSH for REAL Parkinson's numbers! 1million?? Let's get REAL!
How about the millions whose trembling fingers and tented wrists go
undiagnosed? How about those millions too poor, too isolated, or too
shut-in to know??
How about the millions whose symptoms are still lurking like an unseen
Loch Ness Monster, and in whom there will be strange "internal tremors,"
now only distant rumblings, but about to turn their lives UPSIDE-DOWN??
Palsy? Shakes? Just getting old?? Small handwriting?? "Cogwheel"
motions??
I went out (thanks to TOLCAPONE) to hear part of a local men's chorus
show, last Saturday night--at intermission someone said to me--
"You're holding up so well, Ivan!"
WEll, I know, it was a well-intended compliment, but it made me feel
like I was 108 years old!!
Was he trying to be nice to old grampy Ivan, who may have made his LAST
public appearance??
Well, PUSHPUSHPUSH...what ELSE can we do?? Would all of you who are
able PLEASE ask your Representatives in governments questions like,:
"Why do young Parkinsonians like MaryHelenDavila and IvanSuzman and Greg
Leeman and LisaCrumrine and KarenBardo and Jacob Drollinger and
BarbMallut have to
SUFFER FOR THIRTY YEARS ?? AND end up PARALYZED in a hospital bed like
Mo Udall???
Maybe dying off and being left as a memory is what they want. Are we
"parkies" just an INAPPROPRIATE crowd of incoveniently ill people who
would be best be SEEN (very rarely if ever), and not HEARD??
The TYPICAL Parkinsons personality-- Re-defined as angry, marking time,
losing their voiceboxes and facial expressiveness to the RAVAGES of this
MONSTER. Depressed. Exhausted.
Yes, I could CHOOSE to put on my white silk gloves and tuxedo and
zippedy-doo-dah down the corridors of the CAPITOL--but after our heroes
and she-roes like Jim Cordy and Joan Samuelson and Muhammad and Lonnie
Ali and Dr. Abraham Lieberman have done that, what also makes sense to
me, is to PUSHPUSHPUSH, each in his or her special way...
Yes, the HOURGLASS is maybe better than the tulip. Pins, ribbons,
symbols of our struggle?? The tulip is OK, but does it convey ANGST??
Does it show GRIEF?? I don't think the tulip is enough. IT is too
sweet-and Parkinson's is ANYTHING BUT SWEET..
Unethical pig-transplants---what about Rhode Island's JimFinn?? Is he
supposed to sit around while people DEBATE the ethics??
He has every RIGHT to want the fetal pig-implant stage 2 operations to
go on--or is he supposed to sit around with only one- half of his
brainstem transplanted and the rest lying fallow under last year's dead
oak leaves, while ivory-tower debates about "ethics" drag on?? GIVE ME A
BREAK!!
Noone ever told me that once you get the dreaded diagnosis, "YOU have
Parkinson's Disease," unless you're the Bionic Amazon Woman or the
Supreme Invincible Superman, you ain't gonna make it anyhow....
PUSHPUSHPUSH (politely but insistently) is the language that
politicians seem to recognize.
And what about my earning power?? $$678/month is my social "SECURITY?"
You have GOT to be KIDDING! I can't buy the medications I need and keep
enough food iin the refrigerator on that "monthly income."
Is this the land of the free and the brave, or the land of the landed
gentry??
AND what about the "minority" Latina and Latino and African-American and
Asian American PWP's, and what about the elderly POOR who eat cat food in
a tin can, and who NEVER ever see a neurologist?
And what should I say to the Medicaid-funded "Licensed Clinical Social
Worker" who came to see me Monday morning, and, ignoring my house with
its grip bars, and wheelchair-width doorways with no threshholds, and its
beautiful, safe, shower with a bench, PEERED at me, his trusty social
worker's form on a clipboard, and asked me what kind of a "FACILITY" do I
want to go into?
Am I NEXT on the conveyor-belt to a "nursing home" or "assisted-care
facility??"
And the "typical" parkie?
He or she is: EMOTIONAL!! LIke Jacob Drollinger-- why shouldn't you be
upset? YOU have every right, and the fact that Wisconsin gave you a job
is a MONUMENTAL achievement-you must be a superman--I can't imagine the
hell you're going through.
And what about CHILDREN with Parkinson's? Romona in Tennessee --two
KIDS NOT EVEN 10 who need Sinemet?? WHO will notice them and care for
them??
Who cares if we're 1,000,000 or 15,000,000? The point is we are
afflicted by an INCURABLE DISEASE. And until the YOUNG persons SCREAM
(politely??) the Udall Bill will Languish. Meanwhile I am so DISGUSTED.
And David Langridge's wonderful ideas and Ida Kamphuis's elegant and
wonderful remarks that deserve HEADLINE NEWS attention just lie limp on
crumpled pieces of paper on the floor beneath the kitchen table here....
PUSH PUSHPUSH If Princess Diana sent a message about us, and Elton
John's single hit, "Candle in the WInd" was rewritten to become the
world's best-ever selling hit song, can someone PLEASE ask ELTON to make
a hit single for US?? Brian, Ernie, or someone in the UK??
PUSHPUSHPUSH and Sonia, when you come to New England, maybe you'll catch
the virus--the PUSHPUSHPUSH virus. Maybe the Danes and the Swedes can
create a Nobel Prize for Parkinson's Activism--and meanwhile, in
Hollywood, the Oscar goes to--
ALAN BONANDER!! Wait a minute, he's DEAD!! Whoops! OK then, Barbara
Mallut!!
I hope SOMEONE out there catches my drift--and Congrats to Helen Mason
for the ORegon GOvernor's PRoclamation--and to all of our brave ACTIVISTS
We're getting ready for PUSHPUSHPUSH-it's April and the time is
NOW--Parkinson's Awareness Month is here at last!!
As my dear DEAD friends who suffered from AIDS always said--"SILENCE
EQUALS DEATH"
THink about it--$2400 for every person with hIV/AIDS spent by the US
Government- only about $30 per person with Parkinson's- yet there are
380,000 Americans who have died of AIDS, and yet there could easily be
3,800,000 Americans who are suffering from Parkinson's!!!!!
PUSHPUSH PUSH is the only answer I have.......
Ivan Suzman 48/11
