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:
> >
> > > Thank you guys!
> > >
> > > Can someone tell me about physical activity in
> > your life?. Is anybody perfroming a sport? Are you
> > all going to the OT or PT? Does it help?
> > >
> > > Manuela
> > >
> > >
> > > -----Ursprüngliche Nachricht-----
> > > Von: Cerebral Palsy List
> > <[log in to unmask]>
> > > Gesendet: 30.09.07 04:08:37
> > > An: [log in to unmask]
> > > Betreff: Re: Hello again
> > >
> > >
> > > How much does your insurance covers for all the
> > medication? You can give me a % if you want. Do you
> > pay 100% out of your own pocket for the insurance or
> > does your job pays for it 100%?
> > > Manuela
> > >
> > >
> > >
> > > -----Ursprüngliche Nachricht-----
> > > Von: Cerebral Palsy List
> > <[log in to unmask]>
> > > Gesendet: 30.09.07 03:49:32
> > > An: [log in to unmask]
> > > Betreff: Re: Hello again
> > >
> > >
> > > Yeah, Lyrica either works or it doesn't. At least
> > that's what my doc said. Luckily it works for both
> > of us, eh? Still a bit pricey, though.
> > >
> > > The aneurysm wasn't too bad pain-wise. I was
> > semi-comatose for five days, so if it hurt I either
> > didn't feel it or didn't care. The day I got out of
> > the hospital we drove 500 miles to Philly for my
> > daughter's college graduation. THAT was an
> > experience! LOL!
> > >
> > > Oh yeah, on the way back home we got in a car
> > accident on a bridge exactly over the center of the
> > Ohio River. We were rear-ended by a guy from West
> > Virginia who was himself rear-ended by a guy from
> > Pennsylvania. The Ohio State Highway Patrol and the
> > West Virginia State Police argued over whose
> > jurisdiction we were in (neither wanted to write up
> > the accident on their turf). Then we had to deal
> > with the insurance companies and the insurance laws
> > from Ohio, WVa., and PA. We're still involved in
> > that mess. At least no one was seriously
> > hurt--that's the important thing. Cars can always
> > be replaced--people can't.
> > >
> > > Kyle
> > >
> > >
> > > ________________________________
> > >
> > > From: Cerebral Palsy List on behalf of ehthiers
> > > Sent: Sat 9/29/2007 8:28 PM
> > > To: [log in to unmask]
> > > Subject: Re: Hello again
> > >
> > >
> > >
> >
>=== message truncated ===
>
>
>
>
>____________________________________________________________________________________
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