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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
> >> > > >
> >
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2 February 2001, Week 1 January 2001, Week 5 January 2001, Week 4 January 2001, Week 3 January 2001, Week 2 January 2001, Week 1 December 2000, Week 5 December 2000, Week 4 December 2000, Week 3 December 2000, Week 2 December 2000, Week 1 November 2000, Week 5 November 2000, Week 4 November 2000, Week 3 November 2000, Week 2 November 2000, Week 1 October 2000, Week 5 October 2000, Week 4 October 2000, Week 3 October 2000, Week 2 October 2000, Week 1 September 2000, Week 5 September 2000, Week 4 September 2000, Week 3 September 2000, Week 2 September 2000, Week 1 August 2000, Week 5 August 2000, Week 4 August 2000, Week 3 August 2000, Week 2 August 2000, Week 1 July 2000, Week 5 July 2000, Week 4 July 2000, Week 3 July 2000, Week 2 July 2000, Week 1 June 2000, Week 5 June 2000, Week 4 June 2000, Week 3 June 2000, Week 2 June 2000, Week 1 May 2000, Week 5 May 2000, Week 4 May 2000, Week 3 May 2000, Week 2 May 2000, Week 1 April 2000, Week 5 April 2000, Week 4 April 2000, Week 3 April 2000, Week 2 April 2000, Week 1 March 2000, Week 5 March 2000, Week 4 March 2000, Week 3 March 2000, Week 2 March 2000, Week 1 February 2000, Week 5 February 2000, Week 4 February 2000, Week 3 February 2000, Week 2 February 2000, Week 1 January 2000, Week 5 January 2000, Week 4 January 2000, Week 3 January 2000, Week 2 January 2000, Week 1 December 1999, Week 5 December 1999, Week 4 December 1999, Week 3 December 1999, Week 2 December 1999, Week 1 November 1999, Week 5 November 1999, Week 4 November 1999, Week 3 November 1999, Week 2 November 1999, Week 1 October 1999, Week 5 October 1999, Week 4 October 1999, Week 3 October 1999, Week 2 October 1999, Week 1 September 1999, Week 5 September 1999, Week 4 September 1999, Week 3 September 1999, Week 2 September 1999, Week 1 August 1999, Week 5 August 1999, Week 4 August 1999, Week 3 August 1999, Week 2 August 1999, Week 1 July 1999, Week 5 July 1999, Week 4 July 1999, Week 3 July 1999, Week 2 July 1999, Week 1 June 1999, Week 5 June 1999, Week 4 June 1999, Week 3 June 1999, Week 2 June 1999, Week 1 May 1999, Week 5 May 1999, Week 4 May 1999, Week 3 May 1999, Week 2 May 1999, Week 1 April 1999, Week 5 April 1999, Week 4 April 1999, Week 3 April 1999, Week 2 April 1999, Week 1 March 1999, Week 5 March 1999, Week 4 March 1999, Week 3 March 1999, Week 2 March 1999, Week 1 February 1999, Week 4 February 1999, Week 3 February 1999, Week 2 February 1999, Week 1 January 1999, Week 5 January 1999, Week 4 January 1999, Week 3 January 1999, Week 2 January 1999, Week 1 December 1998, Week 5 December 1998, Week 4 December 1998, Week 3 December 1998, Week 2 December 1998, Week 1 November 1998, Week 5 November 1998, Week 4 November 1998, Week 3 November 1998, Week 2 November 1998, Week 1 October 1998, Week 5 October 1998, Week 4 October 1998, Week 3 October 1998, Week 2 October 1998, Week 1 September 1998, Week 5 September 1998, Week 4 September 1998, Week 3 September 1998, Week 2 September 1998, Week 1 August 1998, Week 5 August 1998, Week 4 August 1998, Week 3 August 1998, Week 2 August 1998, Week 1 July 1998, Week 5 July 1998, Week 4 July 1998, Week 3 July 1998, Week 2 July 1998, Week 1 June 1998, Week 5 June 1998, Week 4 June 1998, Week 3 June 1998, Week 2 June 1998, Week 1 May 1998, Week 5 May 1998, Week 4 May 1998, Week 3 May 1998, Week 2 May 1998, Week 1 April 1998, Week 5 April 1998, Week 4 April 1998, Week 3 April 1998, Week 2 April 1998, Week 1 March 1998, Week 5 March 1998, Week 4 March 1998, Week 3 March 1998, Week 2 March 1998, Week 1 February 1998, Week 5 February 1998, Week 4 February 1998, Week 3 February 1998, Week 2 February 1998, Week 1 January 1998, Week 5 January 1998, Week 4 January 1998, Week 3 January 1998, Week 2 January 1998, Week 1 December 1997, Week 5 December 1997, Week 4 December 1997, Week 3 December 1997, Week 2 December 1997, Week 1 November 1997, Week 5 November 1997, Week 4 November 1997, Week 3 November 1997, Week 2 November 1997, Week 1 October 1997, Week 5 October 1997, Week 4 October 1997, Week 3 October 1997, Week 2 October 1997, Week 1 September 1997, Week 5 September 1997, Week 4 September 1997, Week 3 September 1997, Week 2 September 1997, Week 1 August 1997, Week 5 August 1997, Week 4 August 1997, Week 3 August 1997, Week 2 August 1997, Week 1 July 1997, Week 5 July 1997, Week 4 July 1997, Week 3 July 1997, Week 2 July 1997, Week 1 June 1997, Week 5 June 1997, Week 4 June 1997, Week 3 June 1997, Week 2 June 1997, Week 1 May 1997, Week 5 May 1997, Week 4 May 1997, Week 3 May 1997, Week 2 May 1997, Week 1 April 1997, Week 5 April 1997, Week 4 April 1997, Week 3 April 1997, Week 2 April 1997, Week 1 March 1997, Week 5 March 1997, Week 4 March 1997, Week 3 March 1997, Week 2 March 1997, Week 1 February 1997, Week 5 February 1997, Week 4 February 1997, Week 3 February 1997, Week 2 February 1997, Week 1 January 1997, Week 5 January 1997, Week 4 January 1997, Week 3 January 1997, Week 2 January 1997, Week 1 December 1996, Week 5 December 1996, Week 4 December 1996, Week 3 December 1996, Week 2 December 1996, Week 1 November 1996, Week 5 November 1996, Week 4 November 1996, Week 3 November 1996, Week 2 November 1996, Week 1 October 1996, Week 5 October 1996, Week 4 October 1996, Week 3 October 1996, Week 2 October 1996, Week 1 September 1996, Week 5 September 1996, Week 4 September 1996, Week 3 September 1996, Week 2 September 1996, Week 1 August 1996, Week 5 August 1996, Week 4 August 1996, Week 3 August 1996, Week 2 August 1996, Week 1 July 1996, Week 5 July 1996, Week 4 July 1996, Week 3 July 1996, Week 2 July 1996, Week 1 June 1996, Week 5 June 1996, Week 4 June 1996, Week 3 June 1996, Week 2 June 1996, Week 1 May 1996, Week 5 May 1996, Week 4 May 1996, Week 3 May 1996, Week 2 May 1996, Week 1 April 1996, Week 5 April 1996, Week 4 April 1996, Week 3 April 1996, Week 2 April 1996, Week 1 March 1996, Week 5 March 1996, Week 4 March 1996, Week 3 March 1996, Week 2 March 1996, Week 1 February 1996, Week 5 February 1996, Week 4 February 1996, Week 3 February 1996, Week 2 February 1996, Week 1 January 1996, Week 5 January 1996, Week 4 January 1996, Week 3 January 1996, Week 2 January 1996, Week 1 December 1995, Week 5 December 1995, Week 4 December 1995, Week 3 December 1995, Week 2 December 1995, Week 1 November 1995, Week 5 November 1995, Week 4 November 1995, Week 3 November 1995, Week 2 November 1995, Week 1 October 1995, Week 5 October 1995, Week 4 October 1995, Week 3 October 1995, Week 2 October 1995, Week 1 September 1995, Week 5 September 1995, Week 4 September 1995, Week 3 September 1995, Week 2 September 1995, Week 1 August 1995, Week 5 August 1995, Week 4 August 1995, Week 3 August 1995, Week 2 August 1995, Week 1 July 1995, Week 5 July 1995, Week 4 July 1995, Week 3 July 1995, Week 2 July 1995, Week 1 June 1995, Week 5 June 1995, Week 4 June 1995, Week 3 June 1995, Week 2 June 1995, Week 1 May 1995, Week 5 May 1995, Week 4 May 1995, Week 3 May 1995, Week 2 May 1995, Week 1 April 1995, Week 5 April 1995, Week 4 April 1995, Week 3 April 1995, Week 2 April 1995, Week 1 March 1995, Week 5 March 1995, Week 4 March 1995, Week 3 March 1995, Week 2 March 1995, Week 1 February 1995, Week 4 February 1995, Week 3 February 1995, Week 2 February 1995, Week 1 January 1995, Week 5 January 1995, Week 4 January 1995, Week 3 January 1995, Week 2 January 1995, Week 1 December 1994, Week 5 December 1994, Week 4 December 1994, Week 3 December 1994, Week 2 December 1994, Week 1 November 1994, Week 5 November 1994, Week 4 November 1994, Week 3 November 1994, Week 2 November 1994, Week 1 October 1994, Week 5 October 1994, Week 4 October 1994, Week 3 October 1994, Week 2 October 1994, Week 1 September 1994, Week 5 September 1994, Week 4 September 1994, Week 3 September 1994, Week 2 September 1994, Week 1 August 1994, Week 5 August 1994, Week 4 August 1994, Week 3 August 1994, Week 2 August 1994, Week 1 July 1994, Week 5 July 1994, Week 4 July 1994, Week 3 July 1994, Week 2 July 1994, Week 1 June 1994, Week 5 June 1994, Week 4 June 1994, Week 3 June 1994, Week 2 June 1994, Week 1 May 1994, Week 5 May 1994, Week 4 May 1994, Week 3 May 1994, Week 2 May 1994, Week 1 April 1994, Week 5 April 1994, Week 4 April 1994, Week 3 April 1994, Week 2 April 1994, Week 1 March 1994, Week 5 March 1994, Week 4 March 1994, Week 3 March 1994, Week 2 March 1994, Week 1 February 1994, Week 4 February 1994, Week 3 February 1994, Week 2 February 1994, Week 1 February 1994 January 1994 December 1993 November 1993
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