Mary, Anthony Arnold, One of the members of this list works with a company that makes speaking devices for people such as you and I. I have a laptop from a different company. but think Anthory would be a good place to atart.
---- Original message ----
>Date: Tue, 29 Apr 2008 23:56:35 -0400
>From: Mary Powers <[log in to unmask]>
>Subject: trouble talking, and trouble eating
>To: [log in to unmask]
>
>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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