Hi Joanne,
Although the treatment protocols used with your son were different than
those in my case, and no doubt many of the others my age would agree, the
aging process for us with cp would still be essentially the same. Simply
put, we work harder than the physically able-bodied to often do even the
most rudimentary of tasks. That said, the wear and tear on our joints and
muscles is more rapid, if you will, than our able-bodied peers. We fatigue
more easily in just trying to keep up. Some of us, through sheer
determination, have kept going longer than we should have. For myself, my
spine wouldn't be in the shape it's in had I used a scooter or wheelchair
during university or my worklife. Chronologically 47, I have the spine of an
80 year old.
Most of us, no matter what the type of cerebral palsy, has developed an
array of strategies that allow us to function well on a daily basis. One
spastic diplegic may be less functional than another for reasons other than
the physical nature of their condition; thus the importance of examining the
total picture, if possible - the lifestyle thing, etc. In the case of quad
cp combined with other impairments, it would be important to have input from
caregivers. Even the reactions of family (parents and siblings) can impact
on how we, with disabilities, fare in life. If we are emotionally damaged in
some way as we grow up, that will affect how we perceive ourselves as adults
and how well we maintain physically.
In the grand scheme of things, children born today, or even within the
past 10 years had/have many more opportunities than perhaps Bobby and I did.
We didn't have the option of the computer if our handwriting was sloppy.
When I was in school, there was no special classroom, etc. Frankly, I don't
think that ws a bad thing at all. We did the best with what we had and we
survived :) And so did our parents!
Cheers!
Carla
http://www.brunnet.net/terrier
----- Original Message -----
From: jd <[log in to unmask]>
To: <[log in to unmask]>
Sent: Friday, December 07, 2001 10:21 PM
Subject: Re: Personal Profiles - CP and Aging
> I wonder if this would really hold true for the ones
> coming after you? Speaking as a mom of a youngster
> with moderate spastc quad CP and other medical
> issues,I wonder if the treatments that are offered to
> our kids now, that weren't offered when you were
> growing up, might in fact lessen the effects of aging
> by lessening the spasticity early. Right off the bat I
> think of SDR surgery, which ALex has had done when he
> was four(they cut the sensory nerve rootlets in the
> lower spine in order to interupt the "bad" message
> from the brain to the legs) and the bacoflen pump.
> Prior to the SDR, Alex required the use of his hands
> to balance when he sat. He could sit indian style if
> placed that way but had to be placed in and out of the
> position. He could not pull to a stand and he did not
> walk even with very supportive gait trainers. He was
> also labeled severely MR because he could not perform
> tasks on the IQ tests because he needed his hands to
> balance. After the surgery his legs were noodles.
> Today 2 years later,he can side, indian,and long sit
> at will, getting in and out of position with ease.He
> pulls to a stand and can side step. He is also able to
> use a walker now for short distances. The early
> decrease in spasticity has got to help when he does
> age.As far as MR goes, now with the simple use of his
> hands for something other than balancing he is
> participating in the regular 1st rade classroom,doing
> regular 1st grade work with modifications like using a
> computer rather than handwriting etc.
> Joanne
> --- Carla MacInnis <[log in to unmask]> wrote:
> > Perhaps you and Deri could work together
> >
> > I seriously think we should look at doing this as
> > we'd be helping those who
> > come after us, or those who are in the early stages
> > of what we oldsters are
> > experiencing now
>
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