Hi Joanne -
I have athetoid/spastic quad cp and walked some until I was about 17. It
wasn't a very functional walk, but I spent some time on my feet and that was
beneficial. I remember enjoying standing and walking - I felt so tall and
kind of powerful. It was really a different perspective on the world.
Anyway, even though I enjoyed it, I never felt safe/stable. (My palms are
starting to sweat as I write this.) I felt like I could lose my balance and
topple over with the slightest distraction or breath of air coming my way.
(We used to joke that if someone blew on me, I'd fall.) Maybe this is part
of what's going on for Alex.
As a child, I received praise for doing things even if I felt unstable. The
less equipment I needed the better. I have a great mom, but she didn't
realize that it would have been better for me if we (me, mom, and pt) had
figured out how I could be on my feet AND feel stable, even if it meant
using more equipment. It is great that Alex lets you know that he feels
unsafe. I recommend finding ways to make sure he won't fall, then playing
"balance games" until he is confident that he can't fall. Maybe later you
can work on how to fall, if he wants to be in situations where he is
sometimes unstable. There are times now when I choose to do a risky transfer
on my own, but I'm making that choice for myself, instead of trying to
please those around me.
I love it that you seek adult perspectives on growing up with cp. I think
you're a great mom to Alex.
Pam
----- Original Message -----
From: "jd" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Wednesday, November 28, 2001 3:11 AM
Subject: balance and growing up with CP
> Rayna's falling has me wondering about something. Alex
> has moderate spastic quad CP. He is the worlds
> champion crawler, plays his own version of baseball,
> basketball,golf,hockey on his knees. It can be quite
> hilarous as he plays both defense and offense in the
> team sports,at the same time and keeps up a running
> commentary ;). To walk he needs a walker, afo's and a
> hip/thigh brace to stabilize him and even then he
> won't stand independantly. He appears to enjoy
> "walking" if you judge by the smile on his face but it
> obviously requires lots of effort. The question...when
> you were 6 or just starting to walk independantly were
> you afraid to stand alone/walk because of falling?
> what does it feel like? Is it a brain thing, like you
> get dizzy when you have a fever, a leg thing that the
> legs just aren't as strong, a perception thing as
> things must look differant standing as oppose to being
> on the floor. How can I help give him confidence. I
> know walking at this point is an alternative mode of
> ambulation and most likely will never be his main
> means of motion which is ok but I would like him to
> have as many options as possible.
> Joanne
>
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