Well, Hilary..... I plan on dropping emails to the TV programs I
mentioned in my original post, i.e., Primetime, Dateline, and Oprah
when I get home  from this weekend's vacation.

Since I'm going to be very short on time tomorrow, and am leaving for
San Francisco early on Friday morning, I hope others of our
List-family will take the bull by the horns, ASAP, and write to those
programs, and any others they can think of 'bout Ivan's experience
and that of the List-family as we saw and took part in the the
unfolding drama.

Barb Mallut
[log in to unmask]



-----Original Message---
From: Hilary Blue <[log in to unmask]>
To: Multiple recipients of list PARKINSN
<[log in to unmask]>
Date: Wednesday, November 11, 1998 1:15 PM
Subject: Re: Ivan''s Delimma as PD Publicity


>Barbara,You are absolutely right. This is a story that is crying out
to be
>told.The plight of the single, young onset pwp, who doesn't have the
backing
>that the older population has - all the services such as home
nursing,
>hospice, and even medicare are geared towards the older citizens -
they even
>fall under the aegis of the Dept. of Aging. And so someone in Ivan's
position
>has to fend for himself.But it was the tremendous outpouring of
faith and
>support that impressed me.This is a caring community - because we
can all see
>ourselves in that selfsame situation.
>This would really make a wonderful segment on Dateline, or one of
those
>programs - Ivan the activist, the advocate on behalf of us all. His
problems,
>his struggle, the PD community  pulls together s and supports him in
his
>dogged determination not to give in.  And the hopeful ending - maybe
a cure,
>but if not, maybe at least some legislation to ease the situation,
so that
>Ivan and others  need never face this isolation problem again.
>Anyy ideas on how to start - how to get this publicised?
>Hilary Blue
>
>--------------------------------------------------------------------
-------
>Barbara Mallut wrote:
>>
>> I've been following with awe our List-sib, Ivan, in his struggle
to
>> get the caregiver assistance he needs in order to maintain his
>> independence and continue to remain in his own home while disabled
by
>> PD.
>>
>> I'm also awed by the overwhelming virtual world-wide response
(30-odd
>> nations are represented here on the List)  across the miles in
order
>> to share suggestions, ideas, and loving support to Ivan - if not
in
>> person, at least via email, Listmail, and telephone.   AMAZING!
>>
>> I'm SO happy to see that there's SOME relief, if not the total
relief
>> we all wish for Ivan, in this ongoing caregiver nightamarer he's
been
>> living with. Hopefully out of this problem Ivan'll be able to
build
>> up a list of individuals in his hometown who can physically
respond,
>> rather than having to count on the physically scattered world-wide
>> virtual community which, by virtue of the great distances between
us
>> all makes it mighty tough - if not literally impossible - for us
to
>> rush to Ivan's side as we'd like to do.
>>
>> >From my home in Los Angeles, as I watch this drama unfold on my
>> 'puter  monitor via email posted to the PD List, the sheer
logistics
>> in this whole "Ivan's Caregiver Nightmare" have been astounding!
>> Ivan called upon the List-family for help, and by God,
collectively
>> AND individual the help was there  in one way or another!
>>
>> It seems to me that THIS experience is just crying out to be
shared
>> with the world via a multi-media approach, say, via local radio in
>> the Maine area, and national and world-wide TV-segments on
tele-news
>> magazines such as "Primetime,"  "20/20," "Oprah," etc.
>>
>> I think it'd be sad to miss this wonderful opportunity to engage
the
>> interest of the media-involved (millions, at the very least!) in
>> Ivan's moving  and inspiring human interest story.   By Ivan's
having
>> PD and at such an early age, he comes across as very REAL to a
wide
>> number of age groups.  Plus, verbally Ivan is able to articulate
well
>> as a Parkinson's advocate.   (And, not only that... errrrr.....
he's
>> "camera-friendly 'cause of being a total fox!) <grin>
>>
>> Seriously, let's not miss this chance to garner publicity for PD!
>>
>> Barb Mallut
>> [log in to unmask]
>>
>> Ivan's always been a terrific spokesperson for us all  and I feel
>> pretty confident in saying he'd give this type of media blitz
>> z his eloquent best just as he has in the past (after he's had a
bit
>> of a rest & recovery from THIS terrible experience tho!)
>>
>> Whatcha say, Ivan 'n folks - is this a potential great human
interest
>> story AND  a Parkinson's story AND  a List-family story to share
>> with the media, or not?   I sure think so!
>>
>> Barb Mallut
>> [log in to unmask]
>