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
>>> > > >
>>
>