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  1. K

    Riluzole/ Radicava discussion...

    My dad used it early on and I truly believe it didn’t help. All it did was take away time spent with his family in my opinion. Totally up to you, I am sure that other people have had more of a positive experience with it. Good luck
  2. K

    A Heartfelt Thank You

    It is with a heavy heart that I have to let you all know my dad passed away from complications from pneumonia this Sunday. We thought that we would have more time with him but he went from slow progressing to very fast in a short period of time. Before his illness, he lived life to the fullest...
  3. K

    Progression Changes

    Yes that’s true and I’m probably being insensitive but at least they have a chance at surviving
  4. K

    Progression Changes

    I agree. Nothing is worse. He couldn’t have just gone and gotten cancer
  5. K

    Progression Changes

    There is nothing worse than this disease. He hates the bipap and it’s the only thing that makes him feel better. He never was anxious a day in his life until this disease came around. He can’t wear it without a double dose of Ativan and even then he hates it
  6. K

    Progression Changes

    Hi Everyone, I guess I’m just grasping for straws here but when my dad was diagnosed with limb onset als he was progressing rather slowly. His breathing was great and he was still walking. Fast forward to the last three or four months and he has gotten drastically worse. He can’t move most of...
  7. K

    Easy to press call system

    Thank you everyone. You have been a great help
  8. K

    Easy to press call system

    It’s strange....his speech is not slurred but his voice level is very low. Any reason why this would happen?
  9. K

    Easy to press call system

    Hi all, I recently purchased a wireless doorbell that rings upstairs so my father could call us when in need. It has become increasingly hard for him to press the button. Does anyone know if there are “easy to press” call systems available? Keep in mind I am in Toronto, Canada.
  10. K

    Is there a rhyme or reason?

    Hi Laurie, Always grateful for your response. He does have bipap and it doesn’t help that he also has echolasia which doesn’t help with his eating. He goes to a great clinic in Toronto and we have discussed feeding tubes. I’m Canada they have something called MAID which is medical assistance in...
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