My grandson Case is 9 and very active. He had percutaneous
lengthening with Dr. Nuzzo last Dec and has alcohol blocks. His heels
are now on the ground and he is very active in both adaptive sports
and regular sports. I am concerned that he will wear out his joints
in childhood as I have heard many on the list say they did that.
Hopefully with the surgery that will be postponed. His DX
is moderate spastic diplegia. He has been out of DAFOS since the
surgery except at night but he is going back into hinged ones as soon
as they are ready.
He has a personal trainer 3 times a week for strength building. He
goes to tennis either once or twice a week, just regular lessons and
does well at it but falls hard on the court which concerns me. I want
him to have more protective equipment like knee pads. There are great
ones at Sports Authority for volleyball that are only 10 bucks if
anyone wants them.
He plays soccer on Saturdays on an adaptive team. He does jujitsu
with his brother twice a week with a regular class. He has high self
esteem and does not compare himself to other kids.
Once a month there is an adaptive surf program his father is a large
part of and he goes to that. www.accessurfhawaii.org They are trying
to expand it to other locations. He also goes to the beach regularly.
He is at a school with grass so that helps. On most days he rides
his bike to and from school a mile and a half each way. He loves to
play basketball but there is no room for it at home so I made a small
court at my house. He is almost tall enough to start hitting the
regular size basket.
He has a wheelchair for long distances. He used to have forearm
crutches but they took them away cause they thought he was using them
too much. I'd like to see him have them again especially at school so
he can get around easier. Walking is a terrible struggle.
Last Christmas we went to Winter Park and they have an adaptive ski
program. Jason, his dad, wants to do it again but does not think he
will can afford it this year. We'll see.
At 05:51 AM 9/30/2007, you wrote:
>Thank you guys!
>
>Can someone tell me about physical activity in your life=3F. Is anybody perf=
>roming a sport=3F Are you all going to the OT or PT=3F Does it help=3F
>
>Manuela
>
>
>-----Urspr=FCngliche 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=3F You can give m=
>e a % if you want. Do you pay 100% out of your own pocket for the insuranc=
>e or does your job pays for it 100%=3F
>Manuela
>
>
>
>-----Urspr=FCngliche 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=3F Still a bit pricey, though.
>=20
>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 gra=
>duation. THAT was an experience! LOL!
>=20
>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 insuranc=
>e laws from Ohio, WVa., and PA. We're still involved in that mess. At le=
>ast no one was seriously hurt--that's the important thing. Cars can alway=
>s be replaced--people can't.
>=20
>Kyle
>
>
>=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F
>
>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 fin=
>d
>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=3F As for me, I've found
> > Botox. Anyo=3D ne else have any experience with this stuff=3F=20
> > It's been a godsend for=3D me. I get shot about every 3
> > months or so and a heck of a lot of stret=3D ching in between.=20
> > I guess we're going to start using some drug called=3D=20
> > "Myoblock" next time around. Apparently the body doesn't
> > develop the=3D same accomodation to the botulin toxin. I also
> > found a kick-butt ortho=3D tist in town that built an
> > incredible AFO for me--makes a night and day=3D difference in my gait.
> > =3D20
> > Last year I had an aneurysm pop somewhere in my gut and came
> > pretty clos=3D e to going 'casters up'. The net result was that
> > I lost about 30 pounds=3D in the hospital and have managed to
> > keep it off. That helps enormously=3D . Every pound you lose
> > is one pound less to carry on a battered old fra=3D me.
> > =3D20
> > I've also found a new med called Lyrica (pregabalin). The
> > stuff origina=3D lly was prescribed for folks with diabetic
> > nerve pain, but they are disc=3D overing it helps with a host
> > of CNS issues. My pain load has dropped=3D remarkably.=20
> > Lyrica and Zanaflex (tizanidine) at night are the only two=3D=20
> > CP meds I'm taking now. I'm doing better than I have been in years.
> > =3D20
> > Enough about me, what about everyone else=3F Bring me up to
> > date on every=3D thing.
> > =3D20
> > Kyle
>
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>=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F=5F
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>http://smartsurfer.web.de/=3Fmc=3D100071&distributionid=3D000000000066
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>kostenlos testen. http://www.pc-sicherheit.web.de/startseite/=3Fmc=3D022220
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