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
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