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  • Anyway, shortly after that he had to use a wheelchair and until about a month ago could help with transfers by pivoting his right leg. Since then he's gotten progressively worse. Several strange things happened to him starting about 3 1/2 weeks ago which indicated his respiratory system is getting much weaker. I had a long phone conversation with the head neurologist of the ALS team two days ago and she said, based on his symptoms, he doesn't have too much longer to live - she ventured to say could be weeks to a couple of months at the most. We had to adjust his BiPAP settings which is making him feel better but that's all it's doing. The disease is progressing. Until now we've adapted, coped, enjoyed all our time together. Now things are changing and our time together, as a family, had become even more precious but we all have this awful sense of sadness. Bob and our girls don't know the timeline.(Part 2)
    Just discovered I have to post this message in pieces to keep the posts short enough! Hi again. Sorry I haven't talked for a few days. Bob was diagnosed in November last year but had symptoms for about 3 years before that. It started with weakness in his left hand. Everybody thought it was a stroke. Then 1 1/2 years ago he started slurring. Last summer we were in Africa and he tripped over the tiniest rock on the beach and fell flat on his face - couldn't break his fall. When we got back his speech got even more slurred, he had a few falls and just in general got weaker. His gait changed. We saw a neurologist last July and started a battery of tests, scans, MRI's, etc. to rule things out. Bob had an EMG on 08 November and that's when we were told he had ALS. I'm glad he wasn't diagnosed before that - it would have been an even longer time to have to deal with the diagnosis. (Part 1)
    Bob doesn't want to know and because our oldest daughter (24) just got engaged, he wants to keep it a "happy" time for her. We have a younger daughter (almost 19) also. So this is how it goes. Bob uses his Bi-PAP at bed time and for his one nap during the day. He doesn't want to increase time on it as that will end up being his life support where one day it just won't be enough. He has chosen not to vent and will be at home till the end. Please write whenever you feel like it. I hope this message doesn't upset you. Take care.
    Well I feel privileged! Unfortunately we're in the same boat at the moment. I do hope we get to chat more as time goes on. Take care of you and your family.
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