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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] >