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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