> When we left the hospital we knew that Jake was paralyzed and knew that he
> needed alot of PT to build his upper body, we knew to watch for skin breaks
> and autonomic dysreflexia....We didn't know alot of the other stuff that
> comes along with TM. Now from reading all your lists we know so much more.
> Also we find that other people think that he should just beable to learn
> to live in his wheelchair and from his chest up he is fine. They don't
> understand the fatigue, etc. Is this list of symptoms complete or are there
> more.
> Paralysis or weakness of limbs(including numbness or tingling)
> Chronic Fatigue
> Chronic Pain
> Girdle feeling around abdomen
> Headaches
> Dizziness
> Loss of balance
> Bowel and Bladder control problems
> How does everyone get work, school, etc to understand that an asprin
> doesn't take these things away?
>
A good list. I would add, for some of us, anyway, muscle spasms and
"'fasciculations' which is a fancy word for involuntary contraction or
twitching of muscle fibers under the skin." I took the latter as a quote from
a previous note on the list.
What is autonomic dysreflexia?
I think we can help to educate others, not only for ourselves, but for others
with illnesses or disabilities, by trying to explain some of these things when
we have the opportunity. It's hard when people ask how you're doing...you
don't know if they really want to hear it all. :-) But certainly at times when
people expect you to do things you just can't, you can explain why. Sometimes
I worry about being thought a hypochondriac, since for the most part I "look"
normal, so I don't often elaborate on how I feel. But sometimes people need to
know.
Barbara