Mary Katherine,

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
> > >
> --
>
>
> 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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