hi jr, well, I am on and off most evenings from 4 pm to midnight.  I also
have mcs... frustrating when people that work for me change their shampoo
or laundry soap... and try  finding unscented hair products!

i work with  an alternative body work called feldenkrais; the past six
months been working on "unhooking" my body movements when I talk, and it
has worked very well.  and 20 years ago kept me walking an extra ten years,
then I kept falling so went into a chair, been in chair 8 years, but I told
her I want to start working on walking again this fall. so, we'll see.
anyway, it's a gentle, non invasive bbodywork that retrains the brain to
have the body move easier. Look up moshe feldenkrais / www.feldenkrais.com
oh, you won't need a diagnosis for this.

Where  do you live? I'm in Oakland CA


~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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"What is real but compassion, as we move from birth to death?"
~~Greg Brown~~


> [Original Message]
> From: Jonathan Rand <[log in to unmask]>
> To: <[log in to unmask]>
> Date: 11/2/2005 4:43:51 PM
> Subject: Re: I'm new...
>
> 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 “The Weakness,” that made my spasticity & athetosis much less, (but
> with a price)!  wen I tried2 move or speak, I’d 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 “do it yourself” person…  as a
> teenager, I experimented with lenses & an eye chart, & diagnosed my visual
> problems, & I guess, “prescribed” my own glasses.  anyway, so I’m no
longer
> interested in finding a diagnosis 4 anything wrong with me.  I managed 2
> control The Weakness on my own…  All the doctors wud do, is try to give me
> drugs.  I’m chemically sensitive!  but most doctors don’t 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’ve been working on THAT 1
for
> years.  I don’t think I’m detiriorating anymore.
>
> I’m noticing I can do things I couldn’t do, years b4.  but this time its
not
> the Weakness thats doing it.
>
> I’m still in bad shape tho…  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=20
> >
> >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