nancy,
you are new on the list, i believe,
so you dont know ivan as some of us do.
 he has the most staying power
of anyone i have yet to meet.
  your advice is wonderful,
but believe me,
we could all learn from ivan.
i have had the rare pleasure
of visiting several times in his home.
i wish he could open it up to the public
and give guided tours -
it is a perfect example of a pd compatible home.
it was purpose built,
 after an unfortunate fire
almpwt gutted it several years ago.
and now it has everything
that a pwp could passably need -
double banisters up the stairs,
knotted ropes in the bathrooms
and at strategic [points around the house
to pull yourself up by.
his bedroom is arranged
as you suggest
 with everything he needs within reach,
his bathrooms are custom built to accommodate walkers opr wheelchairs - you
name it, ivan's home is arranged to accommodate it.

and ivan -
    end stage -
          never !!!!!!! -
end stage is when you are bed ridden, dot know who you are, dot recognize
anyone, cant do anything for yourself, incontinent.... and if your doctors
waiting room was so pwp-unfriendly - well, he shouldnt be your doctor - maybe
he did see you at yuour very worst, but that iis the nature pn the disiease -
hilary you are up, sometimes you are down. has abhe seen you mowing your lawn,
like i did, just four weeks ago?


hilary




nancy wrote:
>
> 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