Recent content by karzy81

  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...
  11. K

    Is there a rhyme or reason?

    My dad was diagnosed in March 2018. He walked out of the office, slowly, but on his own. September 2018 he was still walking with a walker. Breathing was great. Fast forward to May, he is in a wheelchair, his breathing is under 60 and he has very little movement in his arms. He can still eat...
  12. K

    Drastic change in breathing

    Hi Laurie, I haven’t really figured out how to respond here but thank you very much for all your insightful responses. Thankfully we live in Canada so all of the therapies and interventions are free. I know it must be frustrating to hear all of this looking for answers when there really aren’t...
  13. K

    Drastic change in breathing

    Thanks so much everyone. We are back in to the clinic next week to meet with the respiratory specialist. Our neurologist said it’s possible that the FVC didn’t capture his best effort. I guess, as mentioned earlier, there are many factors that could have an effect on the results. Everything is...
  14. K

    Drastic change in breathing

    I am pretty sure when my dad was admitted to the hospital in December for a pulmonary embolism they said there were many of them, not just one. I just find it weird that he hasn’t noticed a change in his breathing yet it went down so much.
  15. K

    Drastic change in breathing

    Hi everyone. My dad was diagnosed March 2018 with ALS. He has limb onset. His breathing, swallowing and talking have not been affected as of yet. ... so we thought. Today he had a breathing test. His score is December 2018 was 92 and today it was in the low 60s. That seems like a drastic change...
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