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Subject:
From:
Linda Walker <[log in to unmask]>
Reply To:
Cerebral Palsy List <[log in to unmask]>
Date:
Mon, 1 Oct 2007 09:59:47 -1000
Content-Type:
text/plain
Parts/Attachments:
text/plain (315 lines)
Kathy,

I would try and analyze why you are depressed. Think carefully. Is it 
because of the enormity of the CP or is it other stressors in your 
life or is it  something that just came on or have you been battling 
this for a while. I am battling it as well right now I think 
primarily because of loss. Other friends have said how the drugs 
really work and you could go on one and then off when you pull out of 
it, go off.
I think sometimes loss or grief is thought to be stress so I would 
really try and figure this out. Then if it is nothing you can 
pinpoint it may be organic.
I have heard of health remedies that may work. Are you in menopause? 
That is huge. I work with a lot of people who have depression as a 
family trait. At any rate reaching out and asking for help is a good 
sign. If you feel suicidal you need to call a hot line.

All the best to you,

Linda


At 07:00 AM 10/1/2007, you 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 iss=
>ue
> > > than a disability.  In high school I ran cross country and let's just s=
>ay 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 Paralympi=
>cs 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 affe=
>cted
> > > 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 opiate=
>s 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 lef=
>t
> > > 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 immediatel=
>y
> > > 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 Brai=
>n
> > > 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 ga=
>it.
> > >
> > >
> > >
> > > 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 t=
>hat,
> > > 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 an=
>d
> > > 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 "mor=
>e
> > > 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
> > > >
> > > >
> > > > -----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? 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
> > > >
> > > >
> > > >
> > > > -----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?  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 coll=
>ege
> > > 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.  T=
>he
> > > Ohio State Highway Patrol and the West Virginia State Police argued ove=
>r
> > > 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 t=
>o
> > > 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=3D ne else have any experience with this stuff?
> > > >> 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.
> > > >> I guess we're going to start using some drug called=3D
> > > >> "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 ga=
>it.
> > > >> =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.
> > > >> Lyrica and Zanaflex (tizanidine) at night are the only two=3D
> > > >> CP meds I'm taking now.  I'm doing better than I have been in years.
> > > >> =3D20
> > > >> Enough about me, what about everyone else?  Bring me up to
> > > >> date on every=3D thing.
> > > >> =3D20
> > > >> Kyle
> > > >>
> > >
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