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?
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?
