hilary sorry guys cant hold back it is me:)) I have been here a long
time. about 5-6 years. Don't remember. i remember when Ivan first came
on the list.  thank u though for the compliment and u have a good day.

Hillary Blue wrote:
>
> 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