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  • So sorry I never saw this message. My father was ill and died - did not visit the forum for a few months. Yes, my friend is still with me - 6 years in my home, 4 years on a vent. She is quite paralyzed now - can move her hand less than 2 inches - but enough to signal me. Only her eyes move other than that. She still has a radiant smile, though.

    Just for info - the vent is not so difficult for me - the caregiving problem is total lack of any communication or movement. I have help 10 hours a day - I do all of the nights. Once you find willing help (I have trained 2 people, one a CNA, one a former truck driver, now a CNA) things can be OK, although I have rarely left my home in 6 years.

    One more thing - Pat, my PALS was never upset with the vent - never was afraid, felt tied down or unbearably dependent.

    As for depression - our big breakthrough turned out to be Neurontin at night (300 mg) and Ativan (1/2 mg) 3X per day. Sha also takes Ambien to sleep at night. Beth
    Sometimes faith is all we have to hold on too, and mine gets really stretches some days, hope you are doing good today, and I look forward to getting to know you:)
    BLPhill thanks for your reply
    so bulbar onsett....
    5 years is a great milestone

    not to be morbid but between limb or bulbar onsett, which seems to affect the lungs sooner??
    I'm 5 years and counting.........no feeding tube or wheelchair or bi pap yet.(knock on wood) My speech is such that only family understands me and I walk with a walker, although very slow. other then that i'm "normal", so to speak. I think the first two and a half years were the most rapid of my progression. I'm going for another emg on dec 13th. (yikes) If you want to ask your question here just click new thread and ask away.
    Hello forever hopeful, welcome to the als forums. If you want to view peoples progression with als, I would like to suggest you become a member of patientslikeme the als community. You can actualy view the progression of others with als and pls. You can learn much on that website.
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