I'm starting to feel better! I am trying to do this without a counselor. I
am on medicine.
On 10/1/07, Kathy Pink <[log in to unmask]> wrote:
>
> Did this make it to the list?
>
> On 10/1/07, Kathy Pink <[log in to unmask]> wrote:
> >
> > 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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> >
> >
>
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