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