the fact that good docs are hard to find was a real drawback when i had to move. the reason for moving is a long story that those here know. if you are just recently joined you do not know the story; but a lack of good doctors was partially a factor in that saga too, but as i moved i was faced with leaving the good doctors i had found and having to find a trainable doctor here. it is not easy.
--- On Mon, 6/30/08, Cleveland, Kyle E. <[log in to unmask]> wrote:
> From: Cleveland, Kyle E. <[log in to unmask]>
> Subject: Re: books on CP, and a doctor question
> To: [log in to unmask]
> Date: Monday, June 30, 2008, 8:24 AM
> 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
>
>
>
>
>
>
>
>
>
> -----------------------
>
> To change your mail settings or leave the C-PALSY list, go
> here:
>
> http://listserv.icors.org/SCRIPTS/WA-ICORS.EXE?SUBED1=c-palsy
>
> -----------------------
>
> To change your mail settings or leave the C-PALSY list, go
> here:
>
> http://listserv.icors.org/SCRIPTS/WA-ICORS.EXE?SUBED1=c-palsy
-----------------------
To change your mail settings or leave the C-PALSY list, go here:
http://listserv.icors.org/SCRIPTS/WA-ICORS.EXE?SUBED1=c-palsy
|
