Ken...

Your comments about most people not being informed
about PD has reminded me about the recent TV shoot
for the program "Extra" that I was a part of.

There were two other Parkies besides myself plus Dr.
Robert Iacono as part of the shoot.  All three of us Parkies
had been long-time Parkinson's sufferers, had had
pallidotomies (one fella had even had a bilateral pall) with
dramatic, positive results, and were articulate advocates
for getting the word about PD out to the public, as was
Dr. Iacono.

I found it interesting that the while the "Extra" producer
kept repeating "THIS is GOOD copy" as he wrapped up
the shoot, that when push came to shove and it was time
to air the program, it WASN'T aired because the producer
wanted a "celebrity" with PD to add validation to the segment.

So far, he's found it impossible to GET a celebrity, and he
apparently believes three living, breathing, REAL people
with Parkinson's PLUS a famed movement disorder
specialist and neurosurgeon is just not enough of a "draw" for
his audience - which is made up of people just like US, albeit,
with most not having PD.

This whole experience left me with a feeling that there's just
not any "allure" in Parkinson's Disease... We're not particularly
"marketable" to the national media without the added
requisite "celebrity!"  Because of that pervasive attitude, we
 continue
to remain "invisible" to the rest of the world.

The "average Parkie" like most of us just don't come across
as "good copy," unless as you pointed out, there's some
new treatment or drug just out and THAT is presented as tho
it's the next best thing to sliced bread and the implication
AND understanding by most of the general public is that it's
a cure for PD.

Ya know.... Maybe we should have an "I HATE Parkinson's"
Day, and THAT might get us some press!

Barb Mallut (who hates PD even MORE when it's 100+ degrees out!)
[log in to unmask]

---------
From:   Parkinson's Information Exchange on behalf of Ken Becker
Sent:   Tuesday, April 21, 1998 8:24 PM
To:     Multiple recipients of list PARKINSN
Subject:        Re: An idea for new device:

Well, Rita, there will always be people who can get hit on the head with a
hammer and not feel a thing. I was thinking of convincing the folks teetering
on the brink of helping PWP's who are just not informed about the disease.
Until my father was diagnosed with PD, I knew nothing at all about it, and
then I would have agreed with the general public, that there are worse
diseases.  Even the stories you see on tv showing successful pallidotomy
results, are more of a disservice to the majority of PD sufferers than a help.
The impression that it is just about a cure, is the wrong message to send out.
If you poll 100 people, about the effects of the major diseases, most would be
able to tell you about heart disease, kidney dis., cancer, diabetes, with a
fair amount of accuracy. If asked about Parkinson's, I would be surprised if
one in a hundred would know the symptoms, and that is sad!
We have to inform the uninformed, and then, maybe the money would start to
flow, and the cure for PD would be at hand.  [log in to unmask]