Mary Katherine,

The difficulties you describe with eating and speaking sound very similar to
what my wife, Janet, experiences.  We'll talk it over and reply to you.

On Tue, Apr 29, 2008 at 9:56 PM, Mary Powers <[log in to unmask]> wrote:

> 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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>


-- 


Kendall

An unreasonable man (but my wife says that's redundant!)

The reasonable man adapts himself to the world; the unreasonable one
persists in trying to adapt the world to himself. Therefore, all progress
depends on the unreasonable man.

-George Bernard Shaw 1856-1950

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