nope!  :) its not my pressure!  I think its vascular spasms cause by M C S.
:)  but THANKS!

JR



>From: Linda Walker <[log in to unmask]>
>Reply-To: "St. John's University Cerebral Palsy List"
><[log in to unmask]>
>To: [log in to unmask]
>Subject: Re: I'm new...
>Date: Thu, 3 Nov 2005 11:58:13 -1000
>
>Hello there,
>
>I don't have cp but follow the list cause my grandson does. I am=20
>looking  into feldenkris for  him because people here seem to think it=20
>helps. About you...my father had something similar and since you are
>into=20
>self diagnosis you might want to check your blood pressure. What
>happened=20
>to him was his pressure worked the opposite of how it is supposed to so if=
>=20
>he walked he got weak and fell down because the pressure dropped and if he=
>=20
>rested in bed his presure went high. So he would test regularly, after=20
>exercise, after rest, after eating to see what was going on. The doctors=20
>did not have a diagnosis. Anyhow knowing how blood pressure was
>affecting=20
>him helped with motor planning.
>
>All the best,
>Linda
>At 02:43 PM 11/2/2005, you wrote:
> >things detiriorated ove 40 years or so.  but I always had som very subtle
> >symptoms that nobody but me cud notice.  & a few years ago, I got
>something
> >I call =93The Weakness,=94 that made my spasticity & athetosis much
>less,=
>  (but
> >with a price)!  wen I tried2 move or speak, I=92d start2 pass out!  no=
>  doctor
> >knows wat it is.  I have a long long history of going 2 doctors.  they
>cud
> >do very little4 me.  I guess om kind of a =93do it yourself=94 person=85
>=
>  as a
> >teenager, I experimented with lenses & an eye chart, & diagnosed my
>visual
> >problems, & I guess, =93prescribed=94 my own glasses.  anyway, so I=92m
>no=
>  longer
> >interested in finding a diagnosis 4 anything wrong with me.  I managed 2
> >control The Weakness on my own=85  All the doctors wud do, is try to
>give=
>  me
> >drugs.  I=92m chemically sensitive!  but most doctors don=92t think that
> >multiple chemical sensitivity is real, so they insisted I take the meds.
>I
> >stopped seeing them & went off on my own.  it was all I cud do.   The
> >Weakness is getting better little by little.  & only recently, I hit a
> >milestone.  I may b starting 2 walk again.  I=92ve been working on THAT
>1=
>  for
> >years.  I don=92t think I=92m detiriorating anymore.
> >
> >I=92m noticing I can do things I couldn=92t do, years b4.  but this time=
>  its not
> >the Weakness thats doing it.
> >
> >I=92m still in bad shape tho=85  incredible fatigue!  as a matter of
>fact,=
>  I
> >gotta stop now & just veg out in front of the TV!  :)
> >
> >oh, it might not seem clear 2 u from wat I wrote, as2 wether the weakness
> >made my movements better or somhow worse.  its actually hard to tell!
> >better? yes!  worse?  well, also yes!  a strange affect!
> >
> >om really pleased that u replied so quickly!  :)
> >
> >JR
> >
> >
> >
> > >From: Kendall David Corbett <[log in to unmask]>
> > >Reply-To: "St. John's University Cerebral Palsy List"
> > ><[log in to unmask]>
> > >To: [log in to unmask]
> > >Subject: Re: I'm new...
> > >Date: Wed, 2 Nov 2005 15:39:17 -0700
> > >
> > >Jonathon (or JR?),
> > >
> > >Good to meet you, I'm Kendall, 44 (45 in three weeks), and married to
> > >Janet.  We both have CP, (her-spastic athetoid quadraparesis; me-left
> > >hemiplegia and some affects to right leg, and a laundry list of other
> > >non-CP medical conditions).  Sorry to hear about the losses you've had
> > >recently.
> > >
> > >Sounds like you've been through "the mill" in trying to reach a
> > >diagnosis.  Did your symptoms get gradually and progressively worse, or
> > >was it a fairly sudden (less than a year) change?
> > >
> > >We live in Wyoming, and are "parents" to three "kids" with a total of
>12
> > >legs, two garden variety cats and a 75 pound Chowbrador (Lab/Chow
>cross)
> > >dog.
> > >
> > >Kendall=3D20
> > >
> > >An unreasonable man (but my wife says that's redundant!)
> > >
> > >The reasonable man adapts himself to the world; the unreasonable one
> > >persists in trying to adapt the world to himself. Therefore, all
> > >progress depends on the unreasonable man.
> > >
> > >-George Bernard Shaw 1856-1950
> > >
> > >
> > >Hi,   I'm new.  I should introduce myself.  I'm arriving at a very sad
> > >time...
> > >   :(  2 of my friends died recently.  (Within the past year.)  So when
>I
> > >hear these things, it hits home.
> > >
> > >I'm Jonathan Rand.  Spastic, athetoid quad...  Nonverbal.  Official
> > >diagnosis
> > >of CP but no one knows wats really going on.  The condition acted like
> > >MS at
> > >first...  Episodal, progressive.....  Now, static.  I'm also visually
> > >impaired,
> > >had open heart surgery for a congenital condition....  & that's most of
> > >it,
> > >although not all!  :)
> > >
> > >I WAS a musician & an artist.  I wrote 50 songs, over the years.  I
> > >think
> > >EVERYTHING is lost now.  There's no written record or recordings of my
> > >latest & best stuff, & after years of not being able to practice the
> > >music,
> > >its faded from my memory.
> > >
> > >Call me PROFESSOR GADGET, because I designed my own assistive devices
>to
> > >help me shave & open doors etc. .  I only just got my mouse alternative
> > >up &
> > >running.  I call it The SNAKE.  I'm assembling a second snake to enable
> > >me
> > >to draw again.  I'm hoping to be able to make drawings of a speech
> > >machine I
> > >invented.  I think it'll enable someone to generate speech at a near
> > >normal
> > >rate of speed.  No waiting while u type, "look,
> > >
> > >
> > >out,
> > >
> > >
> > >
> > >                        he's,
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > >got,                                  a,
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > >                        gun!"
> > >
> > >
> > >Anyway, I guess that's enough?
> > >
> > >Except 2 say that it's a very lonely existance.  I have no normal
> > >friendships, & absolutely no love.  Basically, its just me, my
> > >powerchair,
> > >"';GOO-GOO," & my RATHER PRIMATIVE speech machine, "Little Stevie
> > >Hawking,"
> > >("Stevie," for short)!  Traveling through time, headed for the
> > >inevidable!
> > >:)
> > >
> > >Sounds depressing?  Well it is!  So I came HERE, looking for people who
> > >might share some of my experiences.
> > >
> > >OK, that's really it!  :)
> > >
> > >                                   JR