Linda,
Kids with disabilities try to do 120% better than their peers at
physical activity. To prove to themselves, and others, that they CAN do
it they'll really push themselves too hard and end up paying for it
later in life.
But, it's a thin emotional line that you really need to be cognizant of.
Encourage Case to be as physically active as possible and what ever you
do, don't "baby him" or make a big deal about his CP. Being
overprotective can do a lot more emotional damage than rough-housing can
damage his body. If you can, steer him towards the low-impact sports
like swimming and cycling. Discourage things like football and
wrestling. I think common sense goes a long way here.
Case has a leg up on the rest of us codgers on the list. Our doctors
and therapies were stone-age compared to what's available to pediatric
physiatrists, neurologist and surgeons these days.
Kyle
-----Original Message-----
From: Cerebral Palsy List [mailto:[log in to unmask]] On Behalf
Of Linda Walker
Sent: Monday, October 01, 2007 2:08 AM
To: [log in to unmask]
Subject: Re: Hello again
Yes yes yes this is one of the things I am concerned about for Case
as he tries to keep up with such an active family. When I joined the
list I was thinking of the long term adult outcome. I absolutely want
him in wrist guards and knee pads but I am not the decision maker.
At 07:42 PM 9/30/2007, you wrote:
>i mean continuing to fight to "overcome" in the long
>term was not good for me. some of the things i did as
>a kid to be "normal" instead of accepting the cp and
>adjusting did hurt and some of the things i have did
>as an adult to contine a "normal" life were hurting
>me. and yes, now life is harder for it. i'd have been
>better off had i not been hard charging going to
>"overcome this" and took a tact of saying i have cp
>and it is okay that i can't do ________. you fill in
>the blank. like swimming instead of being normal by
>tacking a boy 2 1/2 times my weight. or not having
>sense enough to file a complaint on being given duties
>on my job that was rediculus for someone whose hands,
>arms and neck were dystonic and going ahead and
>iqnoring what the pain was telling me and "doing my
>job." only in the past few years have i started to
>just give myself a break. hey i have cp, you can't
>expect me to do ___________. fill in the blank.
>
>guys take care of yourself, you have cp and there are
>somethings you can't do. you can hurt yourself trying.
>
>that is what i mean to say. i am not saying don't do
>anything, just give yourself some slack. i did not and
>i am paying for it.
>
>--- Linda Walker <[log in to unmask]> wrote:
>
> > Ken
> >
> > what do you mean overcoming the disability has
> > hurt me long term. Are you talking about injuring
> > yourself as a kid that makes life harder as an
> > adult. Swimming is great.
> >
> > At 02:40 PM 9/30/2007, you wrote:
> > >any real exercise i di is supposed to be in a
> > heated
> > >swimming pool.
> > >
> > >"overcoming the disability" included playing sports
> > >but only sandlot as i could not make the cut on an
> > >organized team. i do remember trowing a kid over my
> > >head in football and he got a offer to play for
> > >michigan state. so i was rough as h*ll when i was
> > >young.
> > >
> > >"over coming the disability" has really hurt me
> > long
> > >term.
> > >
> > >--- "Cleveland, Kyle E."
> > ><[log in to unmask]> wrote:
> > >
> > > >
> > > >
> > > > Manuela-
> > > >
> > > >
> > > >
> > > > Like several other folks on the list (Kat, Ken,
> > et
> > > > al) CP hit me with a glancing blow. I'm a left
> > > > hemi, but I wasn't impaired much growing up-no
> > > > speech or cognitive issues and my spasticity was
> > > > more of a cosmetic issue than a disability. In
> > high
> > > > school I ran cross country and let's just say I
> > was
> > > > not always last in the races.
> > > >
> > > >
> > > >
> > > > CP became an issue for me in my late 20s and
> > early
> > > > 30s-the over-use problem that Kat wrote about.
> > The
> > > > first indication that I was having problems was
> > in
> > > > 1992 when I was training as a cyclist for the
> > > > Paralympics in Barcelona. I tore my achilles
> > during
> > > > a qualifying ride. During my recuperation I had
> > an
> > > > MRI that showed a lot of joint damage on the
> > > > affected side-left hip, knee, shoulder.
> > > >
> > > >
> > > >
> > > > My mobility really declined from 1992 to 2000.
> > The
> > > > biggest problem was fibromyalgia. I was treated
> > > > with opiates for the pain and did not have any
> > other
> > > > therapy.
> > > >
> > > >
> > > >
> > > > I live near Columbus, Ohio and I found a great
> > > > doctor at the Ohio State University's Physical
> > > > Medicine department. He got me off of the
> > opiates
> > > > and started me on a PT regimen that consisted
> > mostly
> > > > of warm water therapy and myofascial release.
> > > >
> > > >
> > > >
> > > > Today, I feel like I am back to the point I was
> > > > twenty years ago. I wear an articulated AFO on
> > my
> > > > left leg, get Botox (300 units) in my left
> > medial
> > > > hamstring every three months and exercise daily
> > with
> > > > a strict routine-and I stretch, stretch,
> > stretch.
> > > > Each day I ride a stationary bike for 20
> > minutes,
> > > > 100 rpm with minimal resistance and then do a
> > cycle
> > > > on the weight machine (work one muscle group to
> > > > exhaustion and then immediately work the
> > opposing
> > > > muscles-minimal weight, high reps).
> > > >
> > > >
> > > >
> > > > I am very fortunate to be able to work with a PT
> > who
> > > > had worked with head-wound soldiers coming back
> > from
> > > > the current conflicts in Iraq and Afghanistan.
> > He
> > > > was able to flip from Active Army to the Guard
> > and
> > > > he's now working on long-term programs for these
> > > > kids. Some TBI (Traumatic Brain Injury)
> > patients
> > > > have symptoms that mimic those of either
> > athetoid or
> > > > spastic CP. His big focus is on stretching.
> > He's
> > > > also taught my wife the myofascial release
> > > > techniques which do wonders for my fibro pain
> > and
> > > > gait.
> > > >
> > > >
> > > >
> > > > I don't engage in any sport that would involve
> > high
> > > > impact to the major joints-no running, jumping,
> > etc.
> > > > My sports, if you want to call them that, are
> > > > cycling, fly fishing and target shooting.
> > > >
> > > >
> > > >
> > > > You'll find in our CP sphere that adults are
> > left
> > > > with the short end of the stick. All of the
> > > > research funding is spent on juvenile studies
> > and
> > > > little regard is given to those of use who are
> > aging
> > > > with CP. Ours is the first generation that
> > lived to
> > > > middle age and beyond with the condition, so we
> > are,
> > > > and probably will remain an enigma to the
> > medical
> > > > community.
> > > >
> > > >
> > > >
> > > > Kyle
> > > >
> > > >
> > > > ________________________________
> > > >
> > > > From: Cerebral Palsy List on behalf of kat
> > > > Sent: Sun 9/30/2007 4:57 PM
> > > > To: [log in to unmask]
> > > > Subject: Re: Hello again
> > > >
> > > >
> > > >
> > > > Hi, Manuela,
> > > >
> > > > I'm Kat and am one of the list mods - I have CP
> > and
> > > > work and live in
> > > > North Carolina. I participated in sports when I
> > was
> > > > younger, like
> > > > volleyball, football (soccer), racquetball and
> > > > horseback riding as well
> > > > as hiking and camping. Unfortunately no one
> > warned
> > > > me about the wear
> > > > and tear on my joints so I didn't protect them
> > as
> > > > well as I should have
> > > > and consequently got osteorthritis at an early
> > age.
> > > > This is not to say
> > > > to keep from doing sports, etc, but to increase
> > the
> > > > stability of the
> > > > joints by proper exercise and stretching.
> > > >
> > > > FYI,, I'm 54 so I grew up with physical
> > therapists
> > > > who were of the "more
> > > > you use it the better" school - from the polio
> > > > treatments. Polio
> > > > victims went through the same sort of regime and
> > now
> > > > many of them now
> > > > suffer from post-polio syndrome from the overuse
> > of
> > > > their muscles and
> > > > joints.
> > > >
> > > > Kat
> > > >
> > > > Manuela Shepherd wrote:
> > > >
> >
>=== message truncated ===
>
>
>
>
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