I believe, the part of cp that is non-progressive is the brain lesion that
caused it.  Compare to disorders that are progressive such as Rhett's
syndrome where the child progressively looses abilities or muscular
dystrophies such as Duchenne's or Becker's where progressively more and more
of the muscles are damaged.
Now, the symptoms of cp may change overtime with over/abnormal use and
strain on joints and muscles simimlar to athletes (think football players
who get knocked around a lot) or people who have very physically demanding
jobs (think nurses with bad backs and maids with sore knees).  This is what
you have to keep reminding doctors.  The problem is unless you live in a
well populated areas you may be the only adult with cp the doctor has ever
seen.  Someday, I tell you what the docs say about my friend with rheumatoid
arthritis.

Hopefully this more enlightening, than confusing.

Beth the OT

email address: [log in to unmask]


-----Original Message-----
From: St. John's University Cerebral Palsy List
[mailto:[log in to unmask]]On Behalf Of ISM
Sent: Thursday, April 19, 2001 2:55 PM
To: [log in to unmask]
Subject: CP: A Disease or a Conditon (was Re: A Question)


Dear Linda and Kathy,

First let me thank you Linda for being forthright.  Some fifteen years
ago, at about 46 years, I started on a path of chronic pain.  In the
first several years I was going through the traditional range of motion
exercises and pain management techniques with limited and spotty
results.

I had attempted to counsel with a psychologist who told me that I had to
face Cerebral Palsy as if it were a disease and not a stable condition.
Like you, Linda, I was uncomfortable with the idea and the reality
implied that CP might diminish my ability to function.  I was quite
shocked, hurt, and angered by the therapist's jolt to my preferred way
of perception and self definition.  To this I dance around the
distinctions of "condition" and "disease," though I am, finally, willing
to acknowledge that practicality of the latter term.

This year I finally think I have the first glimmer of return to more
robust, less isolated living.  Of course, I'm nearly sixty and a quarter
of my life was severed from the career and life style I was building and
cherished.  Fifteen years in the wilderness is a long time; especially,
when older age is at the end of the wandering.

I think we folks with CP need to wake up.  And we need to properly
demand the best that medicine offers.  We also need to know that at
times the best isn't enough and we have to utilize the best of our
abilities, alternatives, and resources.

Kathy Jo I agree with your agreement with Linda.

Linda, may I commend your fine intellect and precise dialectic?  You
brought me
out of Lurk.  I appreciate your realism.  And I thank you for the
opportunity to vent.

Thanks,

Steve


----- Original Message -----
From: "Kathy Jo Pink" <[log in to unmask]>
Newsgroups: bit.listserv.c-palsy
To: <[log in to unmask]>
Sent: Thursday, April 19, 2001 1:58 PM
Subject: Re: A Question


> I'm with you , Linda, on this.  Kathy
>
>
> -----Original Message-----
> From:   Linda Wagner [SMTP:[log in to unmask]]
> Sent:   Wednesday, April 18, 2001 8:48 PM
> To:     [log in to unmask]
> Subject:        Re: A Question
>
> You are so right Kathy S...
>
> But then again, I am not so sure I believe the "non-progressive"
> part...Heck, the brain damage that causes CP may not get worse, but we
do
> feel the affects of aging...so in a sense the CP does get worse.  Is
it an
> illness...I don't think so.  Is it a disease...I hate that description
too,
> but use it sometimes to explain CP.  Is it more of a "condition"?
That fits
> better in my mind...
>
> Linda