since linda brought up being in charge of our medical
decisions,i am going to name some problems in the
medical community.

my biggest problem with getting medical care over the
years is that doctors are with few exceptions too lazy
or too busy to do their jobs. we go in with something
that we know is a problem that is not anything to do
with our cp. we generally do know our bodies and know
if we have a problem that is different. the doctors
who want to find one thing wrong and not be bothered
with going any further has no trouble finding one
thing wrong (our cp) and does not want to think about
what might be wrong further. i guess an examplemight
be in order. i had halux rigitous (stiff toe). not an
uncommon problem, dianosed with an x-ray of the foot.
i go in an tell the doc, my foot is really hurting and
it is different. well "its just the way you walk." i
have to go to 3 doctors before i get the one who will
think beyond the cp and do the x-ray. a little out
patient surgery and it is fixed. why should it have
taken visiting 3 doctors to get this handled? lazy
doctors.

another problem is some doctor that has just a few cp
patients and thinks he can compare for consistancies
between the patients. cp can have so many combination
of symptons and severities depending on what part of
the brain was damaged, that to try to treat one cp'er
based on what has been seen in another cp'er is crazy.
but you have those "treated one, treated them all"
doctors out there.

maybe it will have gotten better by the time chase
gets older linda.

--- Linda Walker <[log in to unmask]> wrote:

> That is such an interesting symptom. I wonder what
> causes this physical
> reaction to toenail clipping. I feel nothing when I
> clip mine. I've heard
> of the clothing tags bothering the neck but not
> this. Sounds miserable. The
> only time I had water retention was when I was
> pregnant and I slept with my
> feet elevated and was put on a low salt diet and it
> helped. Very bland and
> tasteless food though.
> Recently I got Case volley ball kneepads. He had
> lost the ability to weight
> change, always hard for him but even more so
> recently because of knee
> injuries due to falling. He loves to run and falls
> on his knees a lot. The
> pads work great and he loves them and now wants
> wrist pads but I have not
> found any good ones. Any suggestions are welcome. I
> want him protected but
> with the most freedom.
> Anyhow, as a baby one of the first things we noticed
> was that his toes were
> tightly cramped in a tensed position and turned
> under also. The braces
> stopped the underturn and now his toes are flaccid
> but in the correct
> anatomical position. So now part of physical therapy
> consists of exercises
> to teach him to use those toe muscles again. He
> tries to pull a towel
> forward with his toes.
>  From my observation of my grandsons cerebral palsy
> progression and of the
> many interventions offered and practiced I think
> that the most important
> thing for a good outcome is early intervention with
> physical and
> occupational therapy, before age one. He was not
> diagnosed until 16 months
> when I told his mother she needed to use the cp word
> with the doctor and
> see what he said as I was pretty certain he had
> this.  Now, I take 7 year
> old Case to lomi lomi massage and  any alternative
> therapies that the
> people suffering this brain injury think help ought
> to be incorporated into
> their daily lives. We are still searching for the
> right interventions.
> Because CP has a broad range of symptoms, it is
> important that the cp
> adults make their own health care decisions. I am
> teaching Case that he
> will have to make his decisions someday so he needs
> to notice what works
> and what doesn't.
> Has anyone ever used those shoes with the springs on
> the back of them? His
> PT uses those shoes and they look like they would
> help a toe walker.
> Any how I am rambling and hope everyone has a very
> Happy Thanksgiving.
>
> All the best,
>
> Linda
>
>
>
> At 08:36 AM 11/23/2005, you wrote:
> >my feet spasm and cramp when i do my toenails.
> hurts
> >like the dickens.
> >
> >--- Magenta Raine <[log in to unmask]> wrote:
> >
> > > or get a long nail file or emory board and file
> them
> > > down! sandpaper on a
> > > long stick might work too! ;->
> > >
> > >
> > >
> > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
> > > [log in to unmask]
> > >
> > > "What is real but compassion, as we move from
> birth
> > > to death?"
> > > ~~Greg Brown~~
> > >
> > >
> > > > [Original Message]
> > > > From: Deri James <[log in to unmask]>
> > > > To: <[log in to unmask]>
> > > > Date: 11/22/2005 6:41:16 PM
> > > > Subject: Re: My water-retention problem
> > > >
> > > > On Tuesday 22 Nov 2005 05:47, Rayna wrote:
> > > >
> > > > [snip]
> > > >
> > > > > It seems that I have weird little toes, they
> > > both turn under my  feet -
> > > > > always have, and I thought that  was normal,
> > > apparently not - and in the
> > > > > last few weeks that has meant that I've
> > > essentially been walking on my
> > > > > toenails.  That explains the excruciating
> pain
> > > when I walk.  May have to
> > > > > go to a podiatrist - the thought makes me
> > > physically ill.  I cannot bear
> > > > > people fiddling with my feet - or even
> touching
> > > them.  I've spoken to a
> > > > > few others with CP in the last couple of
> years
> > > who also have this
> > > > > difficulty.  Does anyone else have problems
> with
> > > this, or have any ideas
> > > > > as to the cause - physical or psychological?
> > > > >
> > > > > Rayna
> > > > >
> > > >
> > > > I hate cutting my toenails. There are two
> > > strategies (equally awful):-
> > > >
> > > > Either cut them regularly, but the scars from
> > > cutting bits of toe haven't
> > > got
> > > > time to heal, or
> > > >
> > > > Ignore them until you've got to use a pair of
> > > scissors like bolt cutters
> > > to
> > > > get anywhere with them (always count them
> > > afterwards - there should be
> > > 10!!)
> > > >
> > > > 50 years of walking on the balls of my feet
> means
> > > that even my bunions
> > > have
> > > > got bunions now!!
> > > >
> > > > Cheers
> > > >
> > > > Deri
> > >
> >
> >
> >
> >
> >
> >__________________________________
> >Yahoo! Mail - PC Magazine Editors' Choice 2005
> >http://mail.yahoo.com
>





__________________________________
Yahoo! Mail - PC Magazine Editors' Choice 2005
http://mail.yahoo.com