Hello Margie and others

I'm a bit worried that I might be in/on the wrong List here - that these
comments may be strictly between carers and not for the tender eyes/ears
of PWP.  But here goes anyway.

On Fri, 10 Jan 1997, you wrote:

> my first response was grief for the loss of my vision of our future
> together - and had you asked me prior to the> diagnosis, I couldn't
> even have told you that I had such a vision.  And the grieving process,
> as I said, goes on from there.  I think that's one thing that PWOP
> (people without Parkinson's) can never understand.

Since my diagnosis last August I have struggled with my emotional
reaction to the point it becamea cleear to me that it IS a grieving
process, and the only way I could describe it is in terms off (ito)
'grieving for the future'.  Only you refine that nicely by speeaeking ito
loss of the 'vision' of a future.  What was difficult until I
put in your terms was grppling with the absurdity of grieving for
something that I'd never had, something that is 'lost' before it has
happened.  But, like you, I never had a strong vision for the future
(hope/s? yes) so it would have seemed somehow fraudulent to grieve for
such a vision.  But I DID somehow imagine i had a 'future'.


>      Another point I'd like to make, to see if other caregivers have noticed
> it, is that until the disease is really advanced, other people don't see the
> limitations it imposes, and can't imagine how limited or changed our lives
> are because of it.  There are so many little, unexpected things that Dick
> can't do, or do well (or at a reasonable speed) that PWOP (I made that up, I
> think, but I kinda like it) don't see.  Anyway, I think that also results in
> a feeling of isolation and aloneness with the disease when interactions with
> friends and relatives end up resulting in yet another realization that no one
> truly understands what it's like living with this disease except other PWP
> and their immediate caregivers.  Family members who don't live in the home
> may think they understand, but they don't.


Here I want to try and project into this stream some reciognition,
awareness, of how the very real problems you raise impact upon those of us
who live alone, none of whose family members, no matter how much they
care and think they u/s, live in the same home so clearly they do not,
cannot see those little and unexpected things, therefore do not/cnnot
u/s. (My daughter WAS with me yesterday in time to see howdifficult the
simple task of applyiny sunscreen to my right arm and shoulder now is - my
left hand simply could not/would not 'go' - and I did wonder if she
thought I might be faking it!)

I would have to say that ALL my interactions with friends/relatives
end up as you say.  This is a feeling of aloneness and isolation like no
other i've ever encountered - and i think i'm pretty much known for being
something of a loner, which is to say, someone who is not afraid of her
own company and has not needed to fill all the empty spaces in my life
with others simply to avoid 'being al-one'.  But now I'm constantly
frustrated that no one else will 'get alongside me' and read anything.
My daughter has begun to nibble at the occasional email from this list
that i print out, and I think begins to u/s that she doess not u/s.  So
that's a start.  But for me this list is where it is ALL at ... for the
moment at leeast.

Thanks if you've read this far.  I think we probably all need/take a
specific role in this new 'life' (hah!) we've been dished.  Mine seems to
be to wave a banner (with my still good arm) for lone-PWPs.  It's not that I
want to say to those with carers 'Yes but it's harder for us' but that
I"d like to broaden awareness of what I see as a largely unacknowledged
dimension of this disease that has its place in a still broader pattern
of social change in which more and more people choose to live in single-person
households (and many do so not really by choice, of course).  Andwe DO
see from time to time on this list instances of lack of awareness of
problems attributable to this dimension.

Beth Leslie