Re: TM Experience

Deborah Capen (dcapen(AT)ivic.net)
Fri, 25 Jul 1997 18:07:51 -0700

This is to Kevin:
I noticed that you are here in Southern California. You are the first one I
have noticed from Cailfornia, at least that has revealed where they live. I
am glad that you finally found a neurologist that you can trust. I am also
here in Caifornia, in Riverside County. I was diagnosed within 48 hours, but
was struck suddenly, over 1 1/2 hours, at the Minneapolis Airport seven
months ago. I was sent to the Neurological Trauma Center, next to the
University of Minnesota. I am positive that because I was sent there, that
was the reason for my quick diagnosis. I was put on a program of IV
Steroids within that 48 hour period, took the IV for the next five days, then
Oral Prednisolone to phase my body off of the steroids. I was totally
paralyzed from the waist down, and within the first 24 hours of steroids, I
could wiggle one big toe, then each day showed more improvement. By the
fourth day, I was in a walker, slowly progressing a little more each day.

I am positive that if I had gone to the hospital where I live, they would
have had me in the waiting room all night, then would have told me I just had
a pinched nerve and would have sent me home. (It has happened before. I
went in with a Sebacious Cyst, was sent to the waiting room for five hours in
pain, I finally walked out. untreated. Called a friend who is on the Board
of Directors, boy, THAT was brought up in the next meeting:-))

Anyway, I was released and flew back home to California. It took a few weeks
to get integrated into the California medical system, but when it finally
happened, I found an excellent neurologist in San Bernardino. I have to
drive 50 miles each way to visit him, but I have absolutely no faith in the
medical system in the town where I live, and feel the long drive is worth it.
He is very knowledgeable of Transverse Myelitis, answers all my questions,
and I always have a new list of questions that I accumulate from what I read
here on the list. My neurologist had actually spent a few years working in
the hospital in Minneapolis, and confirmed my beliefs that I had been in the
right place at the right time, that they are listed as one of the top ten
medical centers in the nation.

I agree that it is very important to have a good neurologist that you can
trust, and that is part of the battle to a good recovery, since that gives
you a positive attitude, and positive attitude really helps with TM.

I AM getting better, I have my bad days like everybody else. Still can not
walk normally, though I can walk with a cane. I sometimes have to sit back
and assess my situation, am I really getting better, or am I just getting
used to the way I am, and accepting it to be normal now? No, I am getting
better. I still have to deal with the paralysis in the bladder/bowel region,
still have a "dead" foot, but I still have 17 months window time left. That
is what my doctor gave me. And if I think negatively, I might not get
better.

So, just keep thinking positively. Everybody has been healing at a different
pace, but I believe that some people are healing. They are no longer part of
the group, because they have healed, and no longer need the group to help
them get through their difficult times.

Any Questions?
Debbie
dcapen(AT)ivic.net