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IVAN I AM 42 AND I GO TO THE SENIOR CENTER. HECK I CAN'T DO WHAT THE SENIORS DO BUT THEY OFFER TRANSPORTATION AND HELP. IF THEY CAN HELP I DON'T CARE HOW OLD THEY ARE:) Ivan M Suzman wrote: > > 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 :-) > ********************************************************************