linda and a few others on this list do know the
resources.
--- Linda Walker <[log in to unmask]> wrote:
> What about DR. Roy M. Nuzzo in NJ at Overlook
> Hospital. At least he
> is in the east and he might give a referral. He
> might also suggest x
> rays and diagnosing from them and how you walk the
> way he does with kids.
> From what I've read he knows the most about this.
>
> All the best,
>
> Linda
>
> At 04:35 PM 9/2/2006, you wrote:
> >you are very right kat. she needs a very good doc.
> in
> >my first post in reply, i said "i am no dr." i wish
> i
> >could help her find a good doc, but, as we all know
> >sometimes finding a doctor is very hard.
> >
> >--- Kathleen Salkin <[log in to unmask]> wrote:
> >
> > > I'd like to remind everyone that CP is not the
> only
> > > cause of muscle
> > > stiffness - there are lot of neurological
> conditions
> > > that cause
> > > muscle stiffness - MS, MD, Parkinson's, PPS, and
> > > dystonia, to name a
> > > few. Even not moving around enough can cause
> one's
> > > muscles to grow
> > > stiff with disuse. It's extremely important
> that
> > > Mary Katherine get
> > > a definite diagnosis. None of on this list
> (that
> > > I'm aware of) are
> > > medical doctors.
> > >
> > >
> > > Kat
> > >
> > >
> > > On 2 Sep 2006, at 21:31, Tamar Raine wrote:
> > >
> > > Hi mary ,
> > > It really sounds like you have cp, and Itotally
> > > relate to how you
> > > describe
> > > walking. I used to walk like a cp-person, but in
> my
> > > 30's it became
> > > extremely painful and hard to walk. when i
> turned
> > > 40, I got my first
> > > powerchair, which is great, a year ago I injured
> > > myself, thought it
> > > might
> > > be sciatica, but xrays finally show that it is
> just
> > > extremely tight hip
> > > muscles pulling my hip the wrong way. I am in
> the
> > > works to see if a
> > > baclofen pump will ease the hip and leg muscles.
> > > another disability that
> > > looks like cp is dystonia, you might want to
> read
> > > about that.
> > >
> > > good luck, keep us posted.
> > >
> > > Mag
> > >
> > > Tamar Raine
> > > [log in to unmask]
> > > Now serving tee shirts! and soon to come, Maui
> > > posters and other items;
> > > www.cafepress.com/tamarmag
> > >
> > >
> > > > [Original Message]
> > > > From: Mary Katherine Powers
> <[log in to unmask]>
> > > > To: <[log in to unmask]>
> > > > Date: 9/2/2006 6:12:01 PM
> > > > Subject: other questions
> > > >
> > > > Hello,
> > > >
> > > > I hope you don't mind yet another email.
> there
> > > are a couple of other
> > > > odd things I do and I was wondering if anyone
> can
> > > relate:
> > > >
> > > > a lot of the time, I don't like to have my
> feet
> > > flat on the ground. I
> > > > feel a pull that is uncomfortable in my lower
> > > legs. so when I'm in
> > > > the
> > > > bathroom, I usually lean on the floor with the
> > > balls of my feet and
> > > > sit
> > > > with my feet pointed upwards. when I'm
> sitting at
> > > the computer, I
> > > > often end up pulling my legs back and curling
> my
> > > toes under, or
> > > > sitting
> > > > with my lower legs bent so that the balls of
> my
> > > feet touch the floor
> > > > and the rest of my feet is up at an angle.
> > > sometimes I'll sit with
> > > > the
> > > > outside of my feet touching the floor, and
> > > everything else lifted up.
> > > > these things are more comfortable than sitting
> > > with my feet flat on
> > > > the
> > > > floor. I do have flat feet and I wear
> orthotics
> > > for them.
> > > >
> > > > maybe I've gotten really used to having poor
> > > posture and with the
> > > > stretching, I'll sit in a more standard
> position.
> > > it pulls too
> > > > much on
> > > > my legs. I guess the flat feet could account
> for
> > > it?
> > > >
> > > > I toe-walked for a while as a child and my
> mother
> > > talked to the doctor
> > > > about it, but he said a lot of kids do it.
> But I
> > > was told by a PT
> > > > that
> > > > I was essentially still doing it, because she
> said
> > > something about my
> > > > ankles not coming up all the way so I was
> pushed
> > > forward on my
> > > > toes. I
> > > > don't understand what she meant because I put
> my
> > > heel on the floor.
> > > > but she said I'm pushed forward too much, or
> > > something like that. she
> > > > said I was out of alignment due to bone
> structure.
> > > I'm completely
> > > > clueless on that.
> > > >
> > > > I also walked late - after age 2. I walked on
> my
> > > knees for a year. I
> > > > forget whether I said that already.
> > > >
> > > > can anyone else relate to not wanting to put
> your
> > > feet flat on the
> > > > ground? in shoes with the orthotics in them,
> it
> > > is easier. just
> > > > in my
> > > > bare feet, I don't like it.
> > > >
> > > > also, when I said I have to fight my legs to
> walk
> > > a lot of the time,
> > > > that is how it is. when I try to walk faster,
> my
> > > back stiffens up and
> > > > my legs "lock up" if anyone knows what that
> means.
> > > the resistance
> > > > gets
> > > > harder.
> > > >
> > > > I know this may all sound very trivial. I'm
> sorry
> > > if I'm offending
> > > > anyone by posting these emails - it's just
> there
> > > is really no one to
> > > > talk to who understands this stuff, and some
> of
> > > the things I do
> > > > seem so
> > > > minor that I don't bother mentioning them for
> fear
>
=== message truncated ===
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