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Your work and words are inspirational. Can you tell us more about the financial planning workshops inToronto run by the Toronto Chapter...or more about the 800 number? -----Original Message----- From: William Harshaw <[log in to unmask]> To: [log in to unmask] <[log in to unmask]> Date: Monday, September 06, 1999 10:55 AM Subject: Re: REPOST: Re: cyber PD and serendipity >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 >>> > > > >> >