MK,
Don't know where you are in the country, but Wayne State University (In
Detroit) and Kansas have good movement disorders clinics that could probably
give you a good definitive diagnosis. If you do a Google search on
University movement disorder clinic, it yields several thousand hits, and
the first few pages include sites for University centers across the country.
http://www.med.wayne.edu/Neurology/clin_programs/clinics.asp#movement
http://www.kumc.edu/parkinson/
A physiatrist also might be a good person to talk to. The American Academy
of Physical Medicine and Rehabilitation website www.aapmr.org has a
geographical listing.
As far as non-medical books on adults with CP, they are few and far
between. An Amazon or Google search might be your best bet.
On Sun, Jun 29, 2008 at 9:29 PM, ken barber <[log in to unmask]> wrote:
> 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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--
Kendall
An unreasonable man (but my wife says that's redundant!)
The reasonable man adapts himself to the world; the unreasonable one
persists in trying to adapt the world to himself. Therefore, all progress
depends on the unreasonable man.
-George Bernard Shaw 1856-1950
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