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    The end

    Today I had a major setback as both my legs and trunk stopped working, just like that'. Also my breathing muscles are almost completely paralyzed, I have a catheter and briefs as I can't get out of bed. I've decided enough is enough. Early next week I will be checking into the hospice house...
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    Goodbye to all

    I would like to thank the CALS who have stayed after their losses to help us PALS as best as you can. I can name many of you but I'd leave some out. You have made a miserable two years just a little more bearable. I wish for you healing and a return of joy and happiness. And thank you for your...
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    Important question

    When you have deteriorated to the point of going on yourself and near total paralysis, is removing the breathing mask that keeps you alive considered suicide?
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    Is there something after?

    Been thinking a lot about this lately not meant to be religious.
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    Peg tube coming out

    Has anyone had the situation where the inner tube is coming out of the stomach. The bumpers are tight , it's not them that are moving, the tube inside the bumper with the numbers n it is moving out at about 2mm per day.
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    Hospital bed

    I just got a hospital bed to keep me more upright. Problem is when it keeps me upright my head tilts down to my neck since I have no neck muscles. It's also like sleeping on an egg carton. The mattress has cells of air separated by space.supposed to keep pressure sores away, but it's intolerable...
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    Peg tube bumper rising

    For the last 2 weeks the tube inside the bumper has been continuously rising over a quarter inch by now. I don't understand how this can be happening. It's not the bumper itself but the tube within the bumper. It won't go down at all but continues to move up. I am afraid it will go out of my...
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    Start hospice tomorrow

    well, the finalchapter in my life has started, tomorrow I go into hospice. I now have little use of my hands and my legs can barely hold me up anymore. I'm on bipap 24 hrs/ day. I think it won't be too long now and I will be rid of this horrible disease. They discussed with me when the morphine...
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    Sad story

    my older daughter was in town to visit her mother. Whenever she comes to town she gives me an hour then leaves. Well she gave me two one hour windows, by text, and I texted back saying that since this would probably be our last visit, I'd like a little more time just to reminisce and see her. I...
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    Breathing muscles

    for the past month I have been having muscle contractions around my chest. It's like what we used to do when we got up in the morning and stretched, but this happens more trhan once when I wake up. There is a tightness under y ribs like there was in my arm before the muscles died. Is this my...