>I have limb-girdle
>muscular dystrophy, diagnosed at 14 years of age. I've had 20+ years to
>adapt to the gradual wasting but I can still remember little things, like
>running, laying on the floor, riding a bike, etc., but not as well as I used
>to remember.
When I read this, I thought about my own experience with polio. I was 7 when
I had it, and I can relate to "the gradual wasting" that Karen talks about
here. First there was my not being able to keep up with my friends on the
playground. I'd be running with them, and suddenly my legs would just quit,
and down I'd go onto the ground in a heap. From 2nd grade until 4th grade I
was always bruised and scraped from all of those falls, but I still kept
trying to run and keep up! Then there was the body brace in 4th grade, and
this was so confining that I couldn't do as many active things. As my
scoliosis progressed, so did my breathing difficulties; this put a lot more
limitations on my activities. And on and on. There was the spinal fusion and
the halo body cast which I wore for 9 months. Fortunaltely that made my body
brace obsolete, but for the next 10 years my breathing kept getting worse,
primarily because of all that I went through in my pregnancy and childbirth.
Finally when I had my trach and went on a vent, I adjusted very easily. I
remember just shortly after having had the tracheostomy done and while I was
still in the hospital, I had a dream about myself with the trach and in the
dream I was going about my regular routine. When I woke up, I took that as a
sign that I had accepted the trach and was at peace with it. Since then some
people over the years have asked me about how long it took me to adjust to
it, and I've told them that it took no time at all once I made the decision
to have it. In fact, I had been in training, so to speak, all of my life to
reach this point. And come to think of it, I guess that's the way it is with
most things in life. Life is a process.
Carol