 |
 |
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]