mary,
in the last two years i have made great progress with my speaking by having feldenkrais lessons. I am learnng to sense when my body is going to get tight and/or legs or arms do their dance. in fact it has now become impossile for me to speak when i am the least bit tense, where befoe i would try to force the words out and it wouldnot be clear to anybody but my sister or mom. now strangers understand me 90 % of the time. I wish i had worked with a feldenkrais teacher when i was a kid! The thing is when i have better control of my body, eating is easier! i also don't choke as much. those extra movemens we make, and the energy we spend trying to control them, takes a lot of energy. I think when you get more relaxed, digesting food will be easier. in the meantime, get a blender, and make fruit smoothies and green salad smoothies. These are good if chewing tires you out. I have them all the time.
learn more about feldenkrais at www.feldenkrais.org
oh, i was full term and i am double jointed, which sets me up for pain
when i use my laptop becuz of the touch pad 4 the mouse.
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http://www.zazzle.com/TamarMag*
Tamar Mag Raine
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www.cafepress.com/tamarmag
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----- Original Message ----
From: Mary Powers <[log in to unmask]>
To: [log in to unmask]
Sent: Tuesday, April 29, 2008 8:56:35 PM
Subject: trouble talking, and trouble eating
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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