Ivan.
Bless both you and Greg for your honesty and courage!
I'm with you! Off with the rose-colored glasses! Down with glossy
illusions and up the ante!! How many people out there want to come down
with PD at the current rate of 50,000 per year in the U.S., with virtually
no hope of a cure because an ideological miscreant dogmatically insists that
frozen invitro-fertilized eggs destined for the incinerator are better-off
destroyed than being used to find a cure (for we "wierdos") because it is
"unethical" to use unwanted life to preserve wanted life????
Why not chose a day with some impact for our coordinated effort? Why not
Independence Day? That'd be appropriate... and would come soon enough on
the heels of the current debate to make sure that the connections we want to
see realized are made.
I'm ready! I'll do the Newport News Tribune, Newport, Oregon. Anyone else
nearby who wants to join me?
Do we really need coordinating? Probably, at least at the state level.
Anyone want to coordinate Oregon?
I would love to have a copy of each story, for "the book" Beverly, Joan & I
have expressed interest in compiling. I'm thinking of 4 "categories" of
"voices":
PWP
Caregivers
Children of PWP
Friends of PWP
Also thinking of a companion website to show all our "faces"... get out
your digital cameras and set the resolution on High! Or send me hardcopy
photos scanned and emailed, or just send me the hardcopy and I'll scan!
Have presently two suggestions for foundations to fund putting this
together:
MJ Fox Foundation
NW Parkinson's Foundation
anyone else have any suggestions???
Send suggestions and stories to me, and to all of the list (if you choose)!
Marla
Marla L. Gillham
PO Box 343
Yachats, OR 97498-0343
541.547.4090
[log in to unmask]
----- Original Message -----
From: Ivan M Suzman <[log in to unmask]>
To: <[log in to unmask]>
Sent: Monday, June 11, 2001 10:58 PM
Subject: Re: PARKINSONS--TELL IT LIKE IT IS / at multiple PRESS CONFERENCES
> Greg,
>
> I hope you have everyone's respect--you deserve it, brother!
>
> You should e-mail what you wrote to the most powerful people in
> Washington
> that you have access to at this time. Your writing is compelling. It is
> frightening.
> Greg, your story ought to get the media talking. I would be more than
> glad to join
> with you and support you in a press conference, if that would help end
> the suffering.
>
> How about this idea, folks: let's choose a day and set up
> An International Day of Parkinsonian Press Conferences,
> called "TELL IT LIKE IT IS!"
>
> Coordinated multiple press conferences with audiences
> to PUSH for the cure of PD would be the plan.
>
> Here is one of the awful things I would tell the world about the PD
> battle I'm in.
>
> I am a 51-year old man, always trying to salvage life from scraps. I am
> alone, and one
> step from a nursing home. Out and about, I have been questioned three
> times,
> as if I were a drunk. My emotions are right under the surface.
>
> I can never be sure from one day to the next how I will survive. I am
> called a younger, or
> "Young Onset" PWP,. In reality, I am rapidly aging and forever in battle
> gear, now in my 16th year up
> against the PD monster .
>
> Although my mental faculties, praise be to God, are virtually perfect, I
> could still
> become Jonah, as PD will swallow me right up, if I'm not on alert
> mode.
>
> I have paralysis - a word EVERYONE understands. I am lucky if I get to
> enjoy slow movement, or bradykinesia. I am totally frozen, like a
> statue, at times.
> It is indescribably difficult to be in solitary confinement by choice,
> waiting, waiting,
> laying on a daybed upstairs, out of the view of house visitors who would
> hardly
> understand, secluded, waiting for movement to return, sweating or
> shivering, unable to get up.
> This happens to me daily, whenever a dose of medications wears off too
> suddenly.
>
> Plus, pins and needles pierce my left leg with sharp pains at many
> sites on my leg, in waves, all at the same time. This sensation is more
> painful than the
> rush of pain you get if you brush your finger against a live electric
> wire.
>
> I empathize and agree with you, Greg-- and with Anne Rutherford----let's
> TELL IT LIKE IT IS.
>
> PD is intolerable; only the rare few survive even partially intact.
>
> To focus on Hollywood and its glamorous lives is distracting, but at
> least for
> me. not as compelling as the stories of ordinary PWP's, TELLING IT like
> it
> really is.
>
> No rose-colored glasses for me!
>
> Ivan Suzman
> Portland Maine's other PIEN correspondent
>
>
> On Tue, 12 Jun 2001 00:10:51 -0000 "Gregory E. Leeman"
> <[log in to unmask]> writes, in part:
>
> > Dear Listmembers:
> >
> > Sometimes I feel like such a negative person. My PD is progressing
> > rapidly,
> > my voice barely audible. Manic mood swings are taking away what
> > little
> > personality I have left. Always battling with mental illnesses and
> > the awful
> > debilitating paranoia and hallucinations.
>
> (CUT)
>
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