Hello,
I am in an odd situation.
I was premature, 11 weeks early, under 3 pounds
and I have many of the features of CP but - I don't have a standard
type of it.
after talking with a number of doctors, this is what we believe. my
doctors and I. that I have the brain injury that causes CP. but also,
I am 'hypermobile' which is multiply double-jointed. my hands, wrists,
elbows, shoulders, feet, knees, thighs etc - all double-jointed.
and what we think is that the hypermobility gave my muscles the ability
to move in ways they 'shouldn't.' that means I do not have spasticity,
which is what I would have. and I have noticed in everyday life, that
I can make a lot of movements, such as turning my arms in unusual ways,
that non-disabled people cannot do.
(this is not something I do regularly. it was something I showed a few
people when they dared me to demonstrate what I was talking about, that
I could move my arms 'funny.' I was pretty young.
what I do have are problems with:
eating. eating takes a lot of Work, so I don't like to do it.
speaking. producing clear, comprehensible speech is difficult for me.
walking. due to balance and vestibular problems.
digesting food. physically eating (moving silverware) is hard, and
then digesting food is hard.
problems with seizures and vision, similar to what is described.
sensory integration issues.
I have made a LOT of progress.
I have very supportive, kind people in my life.
but - this is unusual, so I have a couple questions:
1. how do people cope with difficulty speaking and eating? physical,
not psychological.
those are two of my biggest problems right now.
and
2. does anyone else have an unusual type of CP?
where, the issues are not standard.
but - certain features of the brain stuff realllly affects your life.
that makes understanding difficult for me.
take care,
Mary Katherine
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