----- Original Message -----
From: I. S. Margolis <[log in to unmask]>
To: <[log in to unmask]>
Sent: Saturday, October 28, 2000 2:47 AM
Subject: Adults with CP


> Joanne dear,
>
> In my not humble opinion you're missing Kyle's point.  He's made his.
> I'll make mine.
> > Adults with CP are not children with CP.  Children's conditions cannot
> extrapolate our adult experiences.


That is true Steve but you didn't get to adult hood unless you went through
childhood. WHO you are is partly shaped on who you were as a child.I also
know that CP was treated socially and medically differant when you were
growing up than today as my kids are growing up. Whether it is for the
better or the worse I waffle in my opinion daily.


 We cannot be "fixed" and made
> "better."

This may be one of the differances between now and than thinking. Today I
feel there are more options. It is also hard to compare CP's as each one
with CP is differant and the cause ( if known ) is differant. In Alex's case
he was born at 26 weeks weighing 1#14 oz. He was frisky than as he is now
but have pulmonary hemmoragge and cardiac arrest that lasted 30 minutes
before his heartbeat came back does things to the hardiest of kids. His
first 2 years were h*** as he started to recive many of his medical labels.
The ones that caused the most harm were delayed gastric emptying complicated
by reflux and laryngotracheobronchiomalacia ( a very big word for a very
small baby that means his entire airway was soft and floppy and would
collapse and cause him to stop breathing when stressed. Stress was called
sucking on a bottle and moving his body which caused him to require more air
which wasn't there as his airway collapsed and he stopped breathing) He had
a gtube placed a fundoplication surgery to deal with the vomitting. IF this
is fixing and making better than yes we did it. We've also done other
surgeries that reduced his spasticity. Did it cure his "CP" ? Not by a long
shot but it did make it so he could use his body as effeciently as possible
and thus participate more fully with his peers. Does any of that tell you a
thing about who Alex is? Not by a long shot. Alex is more than his CP, much,
much more but these experiences will still have some influence on him.


 As we age we often come to doubt our ability to meet
> responsibilities as parents, spouses, wage earners, community activists,
> etc.  We encounter too much strain and pain as we cope with the normally
> abnormal demands of modern life.  We contend with the possibility that
> our bodies will break down, not allow us to accomplish our goals and
> obligations.  We develop gallows humor, toughness, and keen intelligence
> to make our way.  Not everybody gets this, not everybody needs to, not
> everybody can.


Steve what makes you think just people with CP experience this?  As the
saying goes, aging is not for sissies!
While life long CP has undoubtfully put more physical stress on your body
than a typical person is it really such a surprise when you wake up aching.
The typical person doesn't have this. My DH has needed reading glasses for
years now but wouldn't admit it because he felt that was one sign of aging
he wasn'tready to admit to. Hardly an issue to you but a huge one to my DH.
He is a master plumber. Every morning he wonders if getting up and going to
the job is worth it. Once he gets moving he's ok though and he really does
enjoy the challenge of working with the physics and other scientific issues
that come up because the architech   didn't understand why a pipe had to go
right as oppose to left.
>
> Kyle and Ken haven't been having all great days lately.  Bobby's feeling
> the crunch.  Mag and Carla ouch.  Deri's having a heap.  Most know my
> stuff.  While competent adults, our CP makes for day to day uncertainty.
> No contraception shields us now.
> I interpret Kyle's "disgust" had nothing to do with your sticking up for
> kids--for which, after all, Kyle, Ken, and most parents, including quite
> obviously yourself, devote much.  He responded to your misconception of
> his banter.  He and Ken were engaging Friday at the office stress relief
> and chatter.
>
> You say you have your own disabilities.  Perhaps we would know you
> better if you discuss them.  You may have been less misunderstood had
> you directly revealed your impressions of others reactions to your
> having seven children.  My teasing reply to your post suggested you more
> acknowledge your responsibility in the sex act than putting the thrust
> on
> your husband.  Perhaps others were being humorous.

I've discussed my disabilities before and feel it is quiet boring but if you
insist. I was diagnosied with juvenile rhumatory arthritis  by the time I
was in first grade. It was severe enough that my parents were told I would
be wc bound by the time I was 16.Since my folks never told me that till
later I didn't live up to the doctors expectations. I also have a severe
hearing loss since toddlerhood, which I find to be more isolating and
troubling than RA. RA also takes a toll on the joints as you age. I work as
a cashier in our local 24 hr emporium. I do it to give us the medical
insurance DH job doesn't provide. The extra income of course helps with the
expense of three kids in college, 2 left in youth hockey ( and you want hurt
try sitting on those bleacher seats !!! I usually stand during the games)
and Alex's extra expenses. It makes it difficult to lift his WC in and out
of the car during when we go places. It hurts when my gnarly fingers get
caught in the bars of shopping carts. I also have a condition called
anticardiolipin syndrome which causes the blood to clot. I got to tell you
I've never hurt like I did when I have the lung blood clots. It's not as
much an issue right now as they put a filter in the superior vena cava of
leading to my heart to catch further clots. MRI's have also shown areas of
demyliantion and we are waiting on whether it is MS or another auto-immune
disorder. Does that satisify your curosity?
Joanne
>
>