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Date: | Sun, 29 Jun 2008 20:29:00 -0700 |
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Mary, i hate to tell you this, but as far as doctor's practices and books and anything else you may think of. they just do not even seem to know that we grow up.
maybe someone can suggest something.
Mary Powers wrote:
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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