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?
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> 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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