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Cerebral Palsy List <[log in to unmask]>
Date:
Sun, 30 Sep 2007 16:57:36 -0400
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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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