Re: fatigue

Aurore Bleck (ableck(AT)nas.edu)
Mon, 12 May 97 10:27:00 EST

Bill,

The muscle spasms might be a good sign! Your legs are perhaps more
interested in moving and doing things, and the muscle spasms are a sign of
increased neurological activity as a way of preparing for movement. I had
to take Baclofen for a while (at night only) to help me sleep because the
spasms were waking me up (and the hypersensitivity didn't help).

The physical therapists, aides, doctors, other medical folks will never be
as interested in your well-being as YOU are. They have their own troubles
and lives. YOU should promote at attitude in your physical therapy
sessions and with others that "improvement is the expectation"--you are
working for improvement and that will be the end result. I always believed
I would be better, and I am. I took as much charge as I could. On the
weekends when there was no or limited physical therapy at the rehab
hospital, I'd get the nurse to spot me when I tried walking and I'd do
exercises in my bed on my own. I'm still not 100%, but I haven't finished
improving yet!

Aurore

========================

Well yes I'm still here baraly I just hate waiting I'm the type of person
that wants something right away. You know in a way physical therapy is
good but in a way its bad some of the people there really don't know much
about transverse myelitis and they treat me like I'm always gonna be like
this. Sure I know that there is a chance of that but what I need right now
is all the support I can get from everyone. Is it hard for any of you guys
to sleep at night because its real hard for me. Another thing is lately
I've been getting alot more muscle spasms and its really getting annoying.
And one more thing how many of you know about the myelin project and whats
going on there. I read there latest results on online but that was
from1995 and its been two years and I want to know whats up and if there
starting any clinical trials anywhere I'd be happy to participate. Like I
said I'll try anything I can to get out this dang thing.

Well see ya

Bill Kennedy