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Hello Camilla and everyone,especially, nancy, hilary, jo ann, greg, don mck, juanita, j.r., sid, marjorie, margie, jeannette, and (sorry)those that I missed-THANK YOU all so much. I feel quite a bit better now. Regarding the "END STAGE parkinson's" diagnosis of me by my family doctor...This is apparently debatable wording, and your messages have lifted me up. THis word choice may be explained by his lesser exposure to PD, and by the cold examining rooms in the air-conditioned medical building. Still, i go into shocking paralysis too often,with frightening hyopothermia. Then I forget about it for a while and WHAMMO! it hits me when I least expect it. My neuro says I have a "serious case of advanced young-onset Parkinson's Disease." Yet at times still fairly predictable and sometimes even for 4 or 5 hours, I function very very well. Last Saturdya night, after a tough day, I still went out late, and sang karaoke. I sang John Lennpn's "Imagine" and all the couples (ladies and gentlemen in this case) got up for that last s-l-o-w- dance. AFter, people just mobbed me- what a feeling!! On that night, in that moment, PD had been completley stymied-it was absolutely wonderful I think Camilla hit the nail on the head. The family doctor is NOT a movement disorder specialist. Nor is my neurologist a specialist in PD, but he listens very well, and he and I have worked very together for 4 years now. Also, he hs seen LOTS of PD. Even though my PD has advanced QUICKLY,recently, creating a few panics from unforeseen off-periods arriving suddenly, powerfully, bringing me great pain, and with too much paralysis much too deep, and with muscle power problems, including trying to "push" when on the commode, which I can only approach in a good "On-period, I still think that if Don McKInley can keep going, end-stage is not yet reached, I can learn from him and Vivian, and try to get though life somewhat more cheerfully Plus you guys and gals, including that WEE remark from Juanita(-made me laugh-)all deserve a lot of credit for responding to us SINGLE, UNHITCHED pwp's s, gay, bi, hetero or whatever. Btw, my favorite bumpertsticker this week is: " I'm straight, but not narrow." I called nancy to help her- and hilary, thank you for your for your verykind words about me. Now as for the fundraiser for the Parkionson Alliance, sid, and others,this fundraiser has a HUGE number invited--either to attend or to send checks, that will be purely for RESEARCH> THe social page editor of the SUnday newespaper (the Maine SUnday TElegram_) just requested an invitiaiton---so Sid LEvin, if you want to fly out here, you might be "seen" attthe ievent, by our local writer- Natalie Brenner!! Guess I can't feel too awful, even though I'm still single-despite signals from my own terra infirma that I better base mytrelationships on friendhip, and not count on the sacral nerves to cooperate on command. Maybe the AARP invitation (even if I am a 30-ish 50 year old, the AARP already has found me) is something I should take seriously. OH no, I just discovered more denial , called, I will never grow old. On Thu, 7 Sep 2000 17:29:30 -0400 Camilla Flintermann <[log in to unmask]> writes: > > My 45-ish family doctor has just used the > >words, "END STAGE PARKINSON's" > >to describe my symptoms. > > Dear Ivan--- I note that this statement did NOT come from your > neuro, but > from your "family doctor". > Perhaps his knowledge of PD and of you as a PWP, is not infallible? > > Has your neuro EVER said anything like this to you? I'll bet > not..... > > Camilla Flintermann, > Oxford, Ohio > <[log in to unmask]> > > on PDWebring at > http://members.tripod.lycos.nl/genugten/flinterm.htm > > > # # # # # # # # # # # # # # # # # # # # # # > # > # " Nothing is as inevitable > # > # as a mistake whose time is come." # > # # # # # # # # # # # # # # # # # # # # # # > # ^^^^^^ WARM GREETINGS FROM ^^^^^^^^^^^^ :-) Ivan Suzman 50/39/36 [log in to unmask] :-) Portland, Maine land of lighthouses 58 deg. F :-) ********************************************************************