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   :-)
> ********************************************************************