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^^^^^^ 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