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You are doing fantastic work. I have been following your posts - both about your work and about your personal struggle with PD and I must say I am very impressed. I wish we all could be so dedicated. And so successful. Sincerely, Hilary Blue William Harshaw wrote: > > Dear Hilary, > > At the Toronto Chapter of the Parkinson Foundation of Canada, of which I > am the Chair, we try to address these issues: > > 1) This fall we are holding workshops "Financial Planning for > Parkinsonians" which will cover, among other things, planning for LTD, > optimizing use of the health care system and government aid programs. > > 2) In 1994-5, we were instrumental in securing the adoption of the > Trillium Drug Plan by the Ontario government - see my article in the current > issue of the National Parkinson Foundation "Report" - which provides, after > a graduated modest co-payment, a drug plan for those that don't have one. > > 3) We are holding workshops on "Creative Expression for PWPs" which > explores art and writing as a medium of expressing feelngs about PD, under > the overall direction of a psychiatrist. > > 4) We have a full time psychiatric nurse on staff who answers our > "800" line as well as local calls and visits local support groups > > Its not enough, but its a start. > > Bill > -----Original Message----- > From: Hilary Blue <[log in to unmask]> > To: [log in to unmask] <[log in to unmask]> > Date: Monday, September 06, 1999 9:14 AM > Subject: REPOST: Re: cyber PD and serendipity > > >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 > >> > > > > >