Old 08-30-2007, 11:07 PM #1 (permalink)
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Hello all,

I hope to word this so it does not sound morbid but uncertainty and not knowing are tormenters to me. My Mom was diag. 7/06 with bulbar onset als. Besides having this she is on in years, 77. She got a peg 2/07 and can no longer eat, she has not spoken since 12/06 and can barely walk with walker and assistance. She has her motorized wheelchair as of last week. She uses bipap at night and cough assist as needed. She cannot dress herself and needs assistance with clothing going to the bathroom. Which is another problem because she often has bowel accidents. I know the average expectancy is 12-18 months. I just don't have a clue where she is or how much worse it gets. Does anyone have experience. I know there is not magic number and everyone is different but on a scale of 1-10 I would just like to know where she is. I cannot get the doctors to tell me. Any educated guesses?
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Old 08-31-2007, 08:53 AM #2 (permalink)
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Hello Sass. Sorry to hear about your Mom. I sort of understand the need to know what the future holds. Myself, I like to plan but sometimes life does not give us that option. Also unfortunately life does not give us the option of making a debilitating disease any easier either for the one going through it or the one watching.

If you search the threads you will find people who lived long and happy lives for many years, as well as some who did not, unfortunately. The disease affects everybody in similar but different ways. I wish I could offer more. Please feel free to visit and vent and share anytime! Cordially, Cindy
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Old 09-06-2007, 12:28 PM #3 (permalink)
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I agree with Cindy that you cannot estimate....many people live with it for years and others for only a short time. My mother's case is very similar to yours....diagnosed in 08/2006, PEG tube in 03/2007, started BiPAP 07/2007 and I lost her on 08/18/2007. Do not, however, let my case discourage you. My mother also had emphysema before her diagnosis and I think her poor pulmonary function was the cause of her rapid deterioration. Keep chin up and fight for your loved one. That's all any of us can do. My thoughts and prayers are with you and yours.
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