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Good Morning Ivan,
If it were me, I'd be hunting for a new Doctor!!
End stage PWP cannot articulate their thoughts
nor anything else you have described. I'd be
hunting for a new Doctor who might just come up
with a better solution to your problems that just
"End Stage acceptance".
You aren't going to get away from us this easily!!!
just me,
Marjorie
At 05:07 AM 09/07/2000 -0400, you wrote:
>^^^^^^ WARM GREETINGS FROM ^^^^^^^^^^^^ :-)
> Ivan Suzman 50/39/36 [log in to unmask] :-)
> Portland, Maine land of lighthouses 44 clear canadian cold
>deg. F :-)
>********************************************************************
>DEAR FRIENDS:
>
> My 45-ish family doctor has just used the
>words, "END STAGE PARKINSON's"
>to describe my symptoms. THIS is
>truly challenging, something I must
>give considerable thought
>to, then try to forget about, and only then,
>try to beat it back by living VERY mindfully.
>
>After six months of slow progress, living alone,
>I feel like I took a turn for the worse in August.
>I have had to spend a month hidden away.
>
>Now I MUST re-emrge, bcause I am HOSTING
>a big fundraising evening, for the Parkinson's
>Alliance, at my own houe, on September 24th
>from 5-7 PM.
>
>I feel like my attitude is great, but like I
>am running too hard, just surfacing,
>then taking a NOSEDIVE , including
>near collapse, when I am tired.
>There seems to be new worry looming
>too large, and my softer spots are not
>hard enough to protect me yet.
>
>This has shocked me.
>
> It seems to me
>that when a PWP's symptoms are serious
>enough that one's battle for survival becomes,
>at age 50, what it is normally thought of as
>what is happening when one is 90,
>a rather healthy form of denial at times is possibly
>a really good thing.
>
>Do we" end-stage" PWP's need denial,
> just to keep our PD at bay, and to
>keep up our mental health?
>
>I also wonder what role
>sexual intimacy plays, as
>I am quite ALIVE in that department.
>
>I still hope to enjoy those
>pleasures regularly, and even
>more often, if the right
>situation presents itself.
>
>Does a hot sex life make
>all the difffculties of "end-stage"
>PD bearable?
>
>Or should I adjust, settle,
>and enjoy friendships instead?
>
>I really need both sexual
>intimacy and closer friendship
>but, meanwhile, what about the
>PD monster??
>
>Air conditioning is DEADLY
>to me, Cool to some people means
>c-c-cold to me. And anytime
>I feel cold, I get terriblel
>muscle cramps, or dystonia.
>
>I say to myself
>that I am almost certainly
>should go to a warmer
>climate in the winter, or face
>a long igloo-like existence.
>
>But WHERE to go? Where are
>the PD-friendly , affordable
>apartments on the Gulf coast,
>or in Florida, or on the south Atlantic
>seabord, or somewhere a bit more
>complicated to get to??
>
>The arrival of friends who can
>cope with the relentless battle
>agianst PD that I have been
>fighting is the ONLY way I can
>actually outlast PD, but PD is always
>rearing its head anyway.
>
>Tomorrow, in order to take a road trip,
>THREE friends will take care of me
>simultnaeously, so that I can
>speak at a hearing at the
>Department of Human Services
>in Maine's Augusta, about the
>ABOMINABLE $15.00 per
>night for the paid the night workers
>who help me. They are being abused
>financially. These are people
>who deserve $15.00 per hour.
>
>PLEASE help to bombard the
>DHS in Augusta, Maine, if you can.
>
>And send the Maine TV media and radio
>media and newspapers messages in
>support of this tiring, but VISIBLE,"end-stage" PWP.
>
>I'll check for e-mail responses within
>12hours. Thanks for your interest in
>my struggle. I believe there are dmany
>others out there.
>
>Ivan S.
>50/39/36
>
>:-)
>On Mon, 4 Sep 2000 22:55:33 -0400 janet paterson <[log in to unmask]>
>writes:
> > Parkinson's disease breakthrough(SNIPPED)
>(CONTINUED)
>
>The main current treatment for the disease is drugs but their success is
>limited and the side-effects can be significant.
>
>There is no cure and treatments only last a few years.
>
> > nd out why those cells get destroyed
> > in the
> > first place.
> >
> > Around 120,000 people in the UK have Parkinson's disease.
> >
> > janet paterson
> > 53 now / 44 dx cd / 43 onset cd / 41 dx pd / 37 onset pd
> > tel: 613 256 8340 url: "http://www.geocities.com/janet313/"
> > email: [log in to unmask] smail: POBox 171 Almonte Ontario K0A 1A0
> > Canada
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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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