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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