Kathy,
Many people who don't have CP battle depression. If you are feeling
depressed you NEED to GET HELP. I hope you are seeing a counselor on
a regular basis to deal with your feelings. We, on this list, are
certainly willing to help as we can, but none of us are
professionals. You need a professional.
I have two friends (both without CP) that battle depression. One has
found great success with counseling and the other with counseling and
medication.
Linda
On Oct 1, 2007, at 12:39 PM, Kathy Pink 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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