Wow,

I asked a question about CP and pain and know a lot more than before.  I
wanted to know more, and you certainly gave me an education.  I am also
dismayed to learn that there isn't a medical focus on the problems associated
with CP and aging.  Obviously there should be more of an awareness in the
medical community about this important issue.

Hmmm...a lot of what Anee said sounds familiar in terms of labeling.  As you
know, I don't have CP (as I have stated before).  I have peripheral
neuropathy.  That is always secondary to something else, like diabetes, but
they could never find my primary cause -- which I have read is true in about
a third of the cases of PN.  It's a rare occasion for me to run into anyone
who knows this about PN, let alone to run into someone who knows what PN is.
But when they do, the questions are always about the primary disorder.  It's
almost an invalidation of the PN, which has progressed so significantly, and
with such a vengeance that it has altered my lifestyle in a dramatically
negative way (as evidenced by my wheelchair, crutches, and comfortable but
ugly shoes).

Trisha said that some of these problems are universal, and I agree.  Trisha
was talking about pain, but with regard to disability issues in general, we
should be tribal.  This is not in the category of pain of course, but I'll
throw it in because I think it's important.  Making headway in a world where
the dominant culture is nondisabled means needing to have a strong and
impenetrable unity.

I'd recite that last sentence again, but to save bandwidth, I'll just ask you
to read it again -- please.

Since the comment was made that baby boomers with CP can be the first
generation to expect a normal life span, I am not surprised that the thrust
of medical education has been in pediatrics and young adulthood.  Even so,
Anee clearly stated her position about young adults with CP. Trisha's
daughter, Amber, has developing hip problems and she is only thirteen.  And
it stands to reason, knowing the little that I know about physiology in
general, that certain secondary issues can be anticipated for people who have
CP as they get older and wiser -- or grizzled, as Kyle states, although I
doubt that his mug is as grizzled as his powers of lexicon are creative.
Given an understanding of basic anatomy though, I don't understand why there
aren't more doctors who have at least a passing familiarity with this issue.
With respect to musculosketal concerns (i.e., hip displasia, etc.), this is
simple ergonomics, and I wonder if a competant ergonomist wouldn't be able to
anticipate specific medical problems after an assessment of the way CP
affects you specifically, as well as your daily regimen and habits.  As Anee
said, she rests both forearms on a desk to read -- it's an ergonomic
correction for her.

In the wonderful world of ergonomics, the focus is on the behavior that can
result in a medical problem, and what can be done to avert its occurrence.
In the workplace, that may mean teaching an employee the proper body
mechanics to avoid incurring carpal tunnel syndrome or thoracic outlet
syndrome.  Trisha has to perform certain tasks in specific ways to
accommodate her disability.  When I make Carla's recipe, I'll have to sit
down and rest my arms on the counter to accommodate my disability.  These
alternative choices are ergonomic adjustments to prevent further stress on
already damaged areas of our bodies.  In the CP world, hip surgery may be
required to avert a grander medical problem down the road, such as in Amber's
case.  Her physiological behaviors are a function of her CP, and not other
dynamics such as having been battered, or a misunderstanding of proper body
mechanics, but the result is the same.  The body doesn't know what's causing
the breakdown -- it's just responding as the body naturally will.

Kyle's grizzled mug -- well, I don't know.  We'll form a committee and
develop a power point presentation.  I'll have to get back to you.

I'm fairly wordy this morning, but to wrap this up, I'm wondering how
productive it would be to involve ergonomists in these issues?  I see an
untapped potential in their area of expertise.

Just a thought -- I've been known to have them,
Betty