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Re: Rilutek/Marilyn

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Ralph also had the severe forward bent head and neck. Sometimes he could

hold his head up but sometimes his neck was as stiff as a board.

Dr said it was because he had no control over the muscles that lift the

head. It was like all the muscles under his chin were pulling his head

down so his chin was on his chest. He also had the forward stoop

of the upper part of his body. That makes breathing very difficult.

All of this makes for a very sore neck and shoulders. That means

lots of rubbing and massage to loosen it up. Exercise was okay for a while

but when your patient has no control it is difficult to help.

There were times when I could not lift his head from the pillow because

it was as tho it weighed a ton. It also hurt him terribly when I would

forget and try to change his position on the pillow, then we would both

cry.

It is awful, as you say. But the best thing I found was to try to get

him to relax and then the massage. When he was tired there was nothing

to do but keep him comfortable and wait.

Love to you. Barb In Arlington, Texas

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