Ivan
i tried to think abit before replying. I understand the shock of hearing
certain words from physicians, but I sit here today. I can't get up and
give myslf a bath. I am covered financially it is just hard to find an
aide.  they get paid 8.50 to 12 dollars an hour, but many don't have
cars.
I am typing this to the List not for sympathy, but tryiing to say not to
give up. If u can get to whereever u are going, go. WHo cares how many
poeple have to help. The more the easier it is on the caregivers
sometimes.

some hints to all when u having an off day and u can't move. Have ur
meds, water in tippee cups, some Ensure, phone, and computer of course:)
right at hands not arms reach.

I am not a doctor, but I do know that we are all human. Please seek
counseling and a GP physical. Read the stages of PD. sorry I don't have
them handy right now. All I know is that I knew this lady who used to be
bedridden and couldn't eat food, couldn't transfer herself, ect.
Nothing. Saw her yesterday. She is abit wobbly, walks with her rollator,
reading a book about human evolution, wasn't feeling the greatest , but
happy she walks sometimes. End stage to me was when she was bedridden
and almost got a peg tube, was totally dependent. Just goes to show u-
never give up:)
ok?

nancy

"Marjorie L. Moorefield" wrote:
>
> 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