Recent content by IreneD

  1. IreneD

    BulbarALS

    We had PT and OT as recommended by our MGH ALS team. The exercises would not have improved his abilities, but could have maintained what he had for a bit longer. My husband got to a point where his only ability to communicate was through an alphabet board and with eye gaze technology which was...
  2. IreneD

    BulbarALS

    As I read the timelines for people with bulbar onset, I realize that there is really no one timeline that you can extrapolate for what your journey will be. My husband's timeline, in retrospect, was very fast compared to what other people seem to be experiencing. My husband had slurred speech in...
  3. IreneD

    Bulbar onset disease

    Johnny, On Valentine's day (a month before he died), he sent me flowers and wrote a lovely, loving note to me. I didn't need it to be at the very last minute to know how he felt. The last couple of weeks were consumed with his needs and comfort and he wasn't "out of it" until a day or two before...
  4. IreneD

    Bulbar onset disease

    He was able to do "typing" through eye gaze technology. That got to be very slow and tiring for him, but he did send messages that way and that is how he communicated that he wanted to stop nutrition. We also asked a lot of yes and no questions. We also had a laminated sheet with the alphabet on...
  5. IreneD

    Bulbar onset disease

    I think you have to respect her wishes. My husband had a feeding tube inserted fairly early in his diagnosis and he certainly would have died a lot sooner had he not gotten it. He had many good months because of the feeding tube. There came a time when his life became unbearable. He couldn't...
  6. IreneD

    Recently diagnosed Bulbar Onset Motor Neuron Disease

    If I were you, I would be concerned that with your progression you will reach a point where you can no longer swallow food. My husband started having symptoms in Sept 2023 (slight slurring), diagnosed in December by ENT and by now his speech was definitely impaired. He was encouraged to get a...
  7. IreneD

    Bulbar Insights and Helpful Lessons

    My husband (72) was diagnosed in December 2023 with symptoms starting maybe in July 2023, but becoming more obvious in September. He got a feeding tube in March of 2024 and thank goodness for that. He stopped being able to eat anything around September of 2024 and prior to that for several...
  8. IreneD

    Toilet and Bidet

    We were gifted by the organization CCALS a toilet lift and bidet, both with remotes . It has been a huge benefit to my husband to maintain some autonomy when toileting. The lift that we got can be seen here <LiftSeat link removed> and this bidet fits over the lift <Swash 1400 link removed> don't...
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