Exactly.... it's like, when we're a child we;re told that it's
non-degenerative, then 20,30,40 years later, when we're getting
a bit concerned that maybe, in fact, it IS degenerating, they
turn around and say "ioh, well obviously the  secondary effects
will degenerate, wear and tear on the body, etc etc......."

How many of us, how many of our parents would have done things
differently if we had the WHOLE picture.......


>when i was in my early 30's a doc said when i worked 8 hours it
was like a
>TAB working 16. this is not a direct quote, it was an
orthopedic who said
>this. so wnen i was working nearly as much ot as staight time
back then, i
>was really wearing on the body.
>
>i think the old story about it no being degenerative is what
suprised us
>all. we did not expect this. i'd have done lots of things
differently.
>
>
>-----Original Message-----
>From: Emma Gabriella Murphy
>[mailto:[log in to unmask]]
>Sent: Saturday, December 08, 2001 1:40 AM
>To: [log in to unmask]
>Subject: CP and Aging
>
>
>This discussionn about aging with CP has  been really useful
for
>me.  I am 23, and for the last 7 yrs or so have felt that very
>slowly, my cp is getting wosre.  Obviiously  I don't feel it on
>a day to day- even a year to year level- but I can look back at
>things I used to do without any probs- ie handwrite a 6 page
>letter- and see that yes, it is changing.,  I a way my parents
>have had a harder time coming to terms with it than I.  I guess
>out of love for me they don't want to see that I'm suffering,
>etc.... My mother is still in denial, any  time I  talk about
>how I feel it's getting worse, and how I am a bit fearful of
the
>future (I don't live in fear, obviously, b/c there is no point
>to that, but I am aware of something- maybe anxiety- deep down
>inside me), she says things like "Maybe by thinking so
>negatively, you WILL bring this upon yourself."  That kind of
>attitude really annoys me..... I think- like bobby pointed out-
>that through my childhood, my parents were reassured by
>specialists that its "non-degenerative" b/c the brain damage
>obviously doesn't change, but what they don't take into account
>is that the wear and tear  on our bodies is perhaps more than
>that of TAB's, and (*in my case, anyway) any thinhg I do, ie
>typing this email, feeding myself) is taking more energy than
it
>would if I didn't have to control the spasticity by keeping my
>muscles tense....
>Anyway, there's my t