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REPOST: I am reposting this series of exchanges because I think that some of the issues raised are very important and , I fear, may have been lost in the hub-bub over the SPARKLE issue. Particularly my last letter - which is listed first. (reverse chronology) > > Once again, I agree with you totally. The health care provided for the > so-called 'indigent' is woefully inadequate. Not only PWPs but right across > the board. THere are many diseases going undiagnosed and untreated. And I > believe this will be a political issue - should be, MUST be - > on a local, state and federal level. But this is not specific to PD. I'm not > suggesting we abandon these people. I'm just suggesting - hoping - that others > will adddress their needs. > > Meanwhile there are those among us, members of our own communities - members > of this list - who are facing hardship. Individuals who are known to us > personally through the net, or support groups, or maybe we've met them at a > conference. Or just heard their stories on the list. BUt they are people with > names (and sometimes faces) that we recognise. Who are having hard times. > Maybe a marriage is breaking up because the strains of dealing with PD have > baecome too great. Maybe someone is facing foreclosure because the cost of the > disease has overtaken his financial resources - maybe someone does not have > medical insurance. or cannot afford the medication or has lost his job becuse > of PD but doesnt qualify for SSI - whatever. > > What i am trying to say is that there are people close to home that need help. > We don't have to go out and look for them. I dont know how we would put this > into practice, but wouldnt it be nice if there ws some kind of fund that people > on the list could tap into in their time of need - maybe get low interest > loans, or outright gifts. Or even some sort of pension fund. TO supplement > the woefully inadequate Social Security payments - but without prejudicing the > rights to those payments. It is all very complex. Sometimes the assistance > needed is not simple money. > The cost of adequate care is very high to those who do not have it. Not all of > us are blessed with spouses or adult children capable of caring for us > Maybe one of the large home health agencies would sponsor home care to some > needy individuals. THe field is ripe for investigation - into supply and > demand. We dont even know what people need, let alone how to fill those needs. > > I suggest that this area is as important a one for investigation and funding > as finding the cure. Because we have to stay alive to get the cure. And for > some of us, just a little extra financial support may make that difference. > > Hilary Blue > > > William Harshaw wrote: > > > > > > > Hilary & Michel, > > > > > > My concern is with the people in our society who are undiagnosed through no > > > fault of their own, except perhaps that they live in the inner cities of our > > > large metropolitan areas. Some years ago I challenged the Parkinson > > > Foundation of Canada to conduct an inner city census to get an idea of who > > > had what and was undiagnosed. we do so little for the inner city residents > > > except to belittle them and libel them by stereotyping them as lazy n'er do > > > wells. To my shame nothing was done. > > > > > > -----Original Message----- > > > From: Hilary Blue <[log in to unmask]> > > > To: [log in to unmask] <[log in to unmask]> > > > Date: Saturday, August 28, 1999 5:19 PM > > > Subject: Re: cyber PD and serendipity > > > > > > >Yes, I agree with you 100%. It would be wonderful if every PWP had a > > > computer > > > >and access to the internet. ANd I regard that as a basic need. For me > > > >personally, I think I would stifle without the ablility to communicate with > > > my > > > >fellow human beings. And as my hand writing shrinks to nothing, and my > > > voice > > > >fades to a mumble, the internet assumes more and more importance. > > > > BUT, and this is a great big but, there are many of the basics that some > > > >people would consider even more important than computers !!! > > > >I refer to > > > >housing, > > > >food, > > > >clothing, > > > >medication > > > >and > > > >CAREGIVERS. > > > >>From time to time, we see appeals on the list. > > > >Or hear stories of people in need. > > > >My concern is with those people. > > > >What say you? > > > > > > > >Hilary Blue > > > > > > > > > > > >Michel Margosis wrote: > > > >> > > > >> > My concern is always with those who don't have > > > >> > access to a computer or to the net. They are the ones who suffer is > > > >> > isolation. If I could advocate for anything it would be to give every > > > PWP a > > > >> > computer with free internet access > > > >> > > > > >> Thank you, Joan, for your note. With respect to your thought expressed > > > >> above, our support group (Capital Chapter of NPF) did exactly that. One > > > >> of our members had a source of usable computers that were surplused by a > > > >> large company and these PC's were donated to individual PWP. In my > > > >> mind, that is a worthwhile activity for any support group. > > > >> > > > >> Michel > > > >