Found on braintalk

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Found on braintalk

Postby Pole on July 14th, 2003, 7:45 am

I've just found that post on braintalk forum.
I think we should all read it and think about that.

I have just returned for an afternoon visit with a 66 year old women with ALS. She is my friend's Aunt and was visiting form ST. Louis.
What an amazing women. She was aware of my "ALS Fear". We spent about a three hours together. I felt like a complete, selfish idiot sitting their crying and listening to her tell her story.
Let me tell you all, the twitching I have and the twitching each of you have described looks "nothing" like what I saw today. Her shoulders and arms twitch CONSTANTLY.They actually do look like "bags of worms" under her skin. I will report I have 24/7 twitching but in all reality it comes and goes some. Sure if I sit and watch I can usually see a twitch or two after a few minutes.My twitches cover a small area.Maybe the size of a half of a dollar. Her's covers her ENTIRE shoulder and upper arm area. It wiggles and twitches over and over And over and over. It Never lets up!!!

She also told me how her ALS progressed. She first noticed weaknesses in her right hand about one year ago.She was unable to button her blouse, open a jar, turn the door knob. She thought she had had a stroke. She did not have any twitching in her hands until she almost had no strength left to raise her fingers. It just progressed from there. Her speech is now a little slurred but I could understand her when I listened hard.
She said she has formed friendships with other PALS in her area and she doesn't remember ONE saying they had twitching early om.
I asked if her twitching started as just one twitch here and there and then spread to what I saw today, NO. Her twitching(bag of worms) was not visible or could not be felt until she almost had no use of that part of her body..............

I feel like *beep* now. This beautiful, loving, spiritual women( she was a Catholic Nun at one time but left maybe 20 years ago)
truly has the thing I dread most and here I was sitting there counting my FU**ING twitches......................... ANd I got up and walked out and drove my car, still able to shift gears, all the way home......
While she sat there, in her wheelchair, never complaining!!!!!!

I just thought I would share....

Love, peace, blessings and light,
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Postby KERRI on July 14th, 2003, 7:57 am

That was some post, I cannot believe it.

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Postby Jenn311 on July 14th, 2003, 7:59 am

Wow Marcin...

That was enlightning. THanks for sharing that with us!
Love, Jen
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