dad

  1. C

    Dad in hospital…

    My Dad is not doing good. My parents are on a cruise right now. We all tried to talk my Dad out of going but he wanted to go as his brother and sister were going and they’ve never all been on a trip together. My Mom just called this morning to tell us my Dad is in the hospital on the ship and...
  2. B

    Panic attacks

    Hi Everyone, Been a while since my last question. Hoping someone can help us out or guide us. My dad is in the late stages of ALS and is now living in a residence and having multiple panic attacks per day. This has been going on for the last 2 weeks and he is being brought back and forth from...
  3. 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...
  4. Nuts

    Life

    Matt has been gone four months, and it feels like a lifetime. On the other hand, I think I'm just now mourning what we went through. All the losses that I was unable to mourn because we were too busy trying to live--I think they are battling their way out of the box I locked them in at the time...
  5. E

    Breathing regular checks

    Hey everyone! Today my father had a breathing exam and, as it has been the case since he is testes, the results were perfect. In the past two years and a half since first measured, there has been no observable decline as measured by any indication of respiratory function. Given these results...
  6. B

    C9 carrier with possible symptoms

    Hello everyone! This ended up being a very long post so I I'm going to put a tldr at the end for those of you with limited energy. This is my first post here and as a c9 carrier I will likely be lurking around for a while as it is the most comfort I have found so far. I want to say thank you...
  7. S

    My Dad was diagnosed a year ago and I’m looking for some support

    Hello all, My father was first diagnosed with lower motor neuron ALS roughly one year ago. He got the official diagnosis in September 2018 when they were finally certain that it was not CIDP. Within the week my Dad was diagnosed, I accepted my first job out of graduate school and moved 2 and a...
  8. worrieddaughter77

    My dad is still kicking, but recently got the flu.

    Hello, Sorry I've been away from the forum for a long time. Two teenagers, one baby, and full time care of my dad (shared with my mom) was tough.. And then... We decided to move from the USA to Finland. It was my husband's idea actually... He dragged us in June 2018 because he thought we could...
  9. C

    MRI and now call with doctor

    So my Dad was called for another MRI of his brain 7 months after ALS diagnosis. That was 2 weeks ago. The neurologist said she wouldn’t call if nothing shows up. Today her office called and asked if my Dad was available for a phone call from the neurologist tomorrow at noon. Does anyone have...
  10. MarieLaure

    Soon after diagnosis

    On his first clinic day after diagnosis my dad saw a psychologist who asked him to model how he saw himself in a sort of clay or children doth sort of thing. At the time he could still move his hands a bit but not all of his fingers. He was surprised to see that his work made him think of...
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