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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