I have been very depressed and suicidal because I have CP. Is this common?
On 9/30/07, 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
> >
> >
> >
> > 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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