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
>
>
>
> I love my Lyrica and find it helps a lot better than cymbalta without the
> side effects, I don't have CP nor diabetic neuropathy (still trying to find
> out the reason for my neuropathy). The aneurysm sounds extremely painful.
>
>
>
> Beth t.
>
>
>> -----Original Message-----
>> From: Cerebral Palsy List [mailto:[log in to unmask]]
>> On Behalf Of Cleveland, Kyle E.
>> Sent: Friday, September 28, 2007 9:57 PM
>> To: [log in to unmask]
>> Subject: Re: Hello again
>>
>> OK, so how's everyone doing CP-wise? As for me, I've found
>> Botox. Anyo= ne else have any experience with this stuff?
>> It's been a godsend for= me. I get shot about every 3
>> months or so and a heck of a lot of stret= ching in between.
>> I guess we're going to start using some drug called=
>> "Myoblock" next time around. Apparently the body doesn't
>> develop the= same accomodation to the botulin toxin. I also
>> found a kick-butt ortho= tist in town that built an
>> incredible AFO for me--makes a night and day= difference in my gait.
>> =20
>> Last year I had an aneurysm pop somewhere in my gut and came
>> pretty clos= e to going 'casters up'. The net result was that
>> I lost about 30 pounds= in the hospital and have managed to
>> keep it off. That helps enormously= . Every pound you lose
>> is one pound less to carry on a battered old fra= me.
>> =20
>> I've also found a new med called Lyrica (pregabalin). The
>> stuff origina= lly was prescribed for folks with diabetic
>> nerve pain, but they are disc= overing it helps with a host
>> of CNS issues. My pain load has dropped= remarkably.
>> Lyrica and Zanaflex (tizanidine) at night are the only two=
>> CP meds I'm taking now. I'm doing better than I have been in years.
>> =20
>> Enough about me, what about everyone else? Bring me up to
>> date on every= thing.
>> =20
>> Kyle
>>
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