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
> > > >