well, linda, you can't be too protective, but, you
need to be sure that he learns to cut himself some
slack. i was over 50 when i finally got a doc that
said, ken go to the water to exercise and you have
nothing to prove to anybody. you are not made to
handle the stress you have put on your body.
over 50. i hope Case learns earlier.
of course all of us adults were told to "overcome"
when we were young. none of us has lived this long
before. YOU DON'T OVERCOME IT, YOU HAVE TO LEARN TO
LIVE WITH CP.
--- Linda Walker <[log in to unmask]> wrote:
> Yes yes yes this is one of the things I am concerned
> about for Case
> as he tries to keep up with such an active family.
> When I joined the
> list I was thinking of the long term adult outcome.
> I absolutely want
> him in wrist guards and knee pads but I am not the
> decision maker.
>
> At 07:42 PM 9/30/2007, you wrote:
> >i mean continuing to fight to "overcome" in the
> long
> >term was not good for me. some of the things i did
> as
> >a kid to be "normal" instead of accepting the cp
> and
> >adjusting did hurt and some of the things i have
> did
> >as an adult to contine a "normal" life were hurting
> >me. and yes, now life is harder for it. i'd have
> been
> >better off had i not been hard charging going to
> >"overcome this" and took a tact of saying i have cp
> >and it is okay that i can't do ________. you fill
> in
> >the blank. like swimming instead of being normal by
> >tacking a boy 2 1/2 times my weight. or not having
> >sense enough to file a complaint on being given
> duties
> >on my job that was rediculus for someone whose
> hands,
> >arms and neck were dystonic and going ahead and
> >iqnoring what the pain was telling me and "doing my
> >job." only in the past few years have i started to
> >just give myself a break. hey i have cp, you can't
> >expect me to do ___________. fill in the blank.
> >
> >guys take care of yourself, you have cp and there
> are
> >somethings you can't do. you can hurt yourself
> trying.
> >
> >that is what i mean to say. i am not saying don't
> do
> >anything, just give yourself some slack. i did not
> and
> >i am paying for it.
> >
> >--- Linda Walker <[log in to unmask]> wrote:
> >
> > > Ken
> > >
> > > what do you mean overcoming the disability has
> > > hurt me long term. Are you talking about
> injuring
> > > yourself as a kid that makes life harder as an
> > > adult. Swimming is great.
> > >
> > > At 02:40 PM 9/30/2007, you wrote:
> > > >any real exercise i di is supposed to be in a
> > > heated
> > > >swimming pool.
> > > >
> > > >"overcoming the disability" included playing
> sports
> > > >but only sandlot as i could not make the cut on
> an
> > > >organized team. i do remember trowing a kid
> over my
> > > >head in football and he got a offer to play for
> > > >michigan state. so i was rough as h*ll when i
> was
> > > >young.
> > > >
> > > >"over coming the disability" has really hurt me
> > > long
> > > >term.
> > > >
> > > >--- "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
>
=== message truncated ===
____________________________________________________________________________________
Building a website is a piece of cake. Yahoo! Small Business gives you all the tools to get online.
http://smallbusiness.yahoo.com/webhosting
-----------------------
To change your mail settings or leave the C-PALSY list, go here:
http://listserv.icors.org/SCRIPTS/WA-ICORS.EXE?SUBED1=c-palsy
|
