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  1. C

    Trying to find an ALS patient on A vent willing to communicate with my brother

    I feel a little bit silly replying to my own post, but I am not sure how else to let people know my brother has decided NOT to have a tracheostomy and a vent. I was moved by how quickly ALS forum members responded to my query. Thank you from the bottom of my heart. My family is quickly...
  2. C

    Trying to find an ALS patient on A vent willing to communicate with my brother

    My brother has been living with bulbar onset ALS for nearly 2 years. He just turned 64. He is trying to decide whether or not to have a procedure to prepare him for using a mechanical ventilator. He has asked his care team (at a major East Coast academic hospital/als research facility) to help...
    • Charlotte G
    • Thread
    • als als research brother bulbar bulbar onset caregiver clinic clinical conversation early life neurology onset research vent ventilator work
    • Replies: 10
    • Forum: General discussion about ALS/MND
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