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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