Mary Katherine, you'll find the silence of work devoted to the CP/aging
issues deafening. What we've found here as a group is that research
into aging and CP does not have the "sex appeal" as that found with
juveniles. We have no telethons, no foundations, no "celebrities"
speaking on our behalf.
There are many of us in this group who were relatively able-bodied in
youth. We were encouraged to physically push ourselves 110%, to our
detriment. Now we are older and in worse shape than had we been more
prudent with our athleticism.
In general, I think you would probably be better served by a physical
medicine doc. Though the majority specialize in SCI (spinal cord
injury), once in a while you can find a gem at a large teaching
hospital. Be prepared to fire your doctor the minute she/he isn't
serving you and go on to the next. Remember, you are their CUSTOMER!
Physiatry is an imperfect science practiced by imperfect beings.
The World Wide Web is your friend. Here is where you're going to find
useable data. You won't find it in books because, quite frankly, none
have been written. Hope this helps.
Kyle C.
-----Original Message-----
From: Cerebral Palsy List [mailto:[log in to unmask]] On Behalf
Of Mary Powers
Sent: Sunday, June 29, 2008 8:52 PM
To: [log in to unmask]
Subject: books on CP, and a doctor question
Hello,
I am interested in books on CP.
I've done some looking and I see plenty of books about children, but not
much that acknowledges that we grow up :)
I also see a lot of professional books.? the problem with this is that
my type is ataxic, but it's an unusual kind of ataxic.? I was diagnosed
as a teenager.? however, as an adult I have had other doctors be
skeptical.?
that is b/c I have what looks like normal muscle tone when I am resting
and for the first - about two minutes of doing an activity.? and then my
muscle strength falls off a cliff.? my muscles are very weak.
I have muscle spasms/tremors, difficulty with a lot of motor activities
and etc.? also I feel shaky often.? I get tremors/spasms in my
stomach/midsection.? I also have the difficulty with depth perception.?
When I was 15, I was told damage to the cerebellum caused this.? I have
visual difficulties as well.
I have a very supportive husband and I work part-time.? they are very
supportive at work.
the doctors decided that I was basically ataxic, but an unusual
variation on it, where I had most of the symptoms but not all of them.?
I also have other symptoms like spasticity and etc. at times.
the reason I'm saying all this is that I'm almost 40 and am noticing
some effects from aging, similar to what I hear other people talking
about.? more immobility and etc.
and I would like to do PT and/or OT.
so - two questions
1.? since I have an unusual type of CP, how do I best find a doctor who
has an open mind about unusual presentations so I can get good PT/OT
recommendations?
I have actually encountered only one skeptical doctor and he was an
orthopedist who attributed my problems to being overweight.? I really
don't think that's the case b/c of what I have noticed, and what I was
told when I was 15.
I've been told that seeing a physiatrist is better than seeing a
neurologist.? does that sound like that makes sense?
and
2) any recommendations for books about CP that are not medical, and are
not about children, I would appreciate.? particularly if they are
written by someone with CP.
thanks
Mary Katherine
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