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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