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  • Users: NotMyDad
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  1. N

    My daddy died in his sleep, at home

    And I wasn't there. I spent two months in Poland with him from August to mid October, and then had to come back to the US to work and to bring my kids back to their dad. My father begged me not to leave. He prayed for a quick death, and he prayed for an easy death. At least those two prayers...
  2. N

    my dad got his peg!

    My dad has his peg placed yesterday. He was already week and losing weight and choking so badly - for hours, every single day.... At first I was so happy and relieved.... No more choking, and hopefully he'll become stronger eventually. And it was a miracle he decided that peg was a way to...
  3. N

    I read a lot about trach, but still have questions if you could help...

    First, I know I started several separate threads, and I wonder if that's okay. Or should I just start one and stick to it? I start a new thread with each new question, and I'm afraid I may have more questions, and more each day... My dad's doctor recommends that he gets a trach together with...
  4. N

    my dad is tortured with saliva/mucus - need advice...

    He wakes up in the middle of the night choking on saliva and nothing helps. I mean - the only thing he tries is cough it out, and of course this doesn't help. His doctor - an anestesiologist with no experience with bulbar ALS, doesn't have any advice. My dad suffers so much he now often says he...
  5. N

    question about electrotherapy, electrostimulation

    Hello Everybody, My dad's physical therapist recommended some electrotherapy to him, and they already got a small device. Now, on the device it says it shouldn't be used when someone has hernia, and my dad may have it - but won't see a surgeon for another month I think (a long wait for some...
  6. N

    would the peg help with saliva/mucus problems?

    Hi All, My bulbar onset dad who refuses a peg has more and more problems with not being able to cough out whatever bothers him in his throat, or deeper than throat, and also with saliva or mucus - I am not sure he knows which one is the bigger problem; he seems to think it's saliva, and its...
  7. N

    almost contant pain - from hernia?

    Hello Everybody, My dad has bulbar onset ALS. He doesn't speak and only eats pureed food (refuses a feeding tube). He chokes regularly. He still walks - started to have problems with his left leg; fell once. Recently, he's been complaining about an almost constant pain somewhere in his...
  8. N

    Problems with cough assist

    Hello Everybody, My dad's disease makes him more and more miserable, and he has less and less patience. Now he is upset that he is supposed to use his BiPap and cough assist. Neither works really well for him. With the BiPap, he constantly complains that it leeks into his eyes, and he has eye...
  9. N

    BiPap mask for a bulbar onset patient?

    Hi Everyone, My father started with a BiPap machine last week, and it doesn't seem to work. He is bulbar onset, and right now can't keep his mouth closed other than by holding it with his hands, which he can still do, but it's not easy even now (and his hands are weakening). He has to press...
  10. N

    Is he going to choke to death?

    So today my sister had a 'conversation' with my (non-speaking bulbar onset) father, and he finally said it explicitly. He doesn't want a feeding tube, and that's that. He chokes on food almost daily even though he of course tries to be super careful while he eats and eating takes most of his...
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