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
>> > > >
>
