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  • Users: anneo
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  1. A

    he didn't suffer

    My step dad, Ron, was diagnosed in March and passed away Friday morning in his sleep. He had bulbar ALS and was still mobile and enjoying parts of life. On his last day we laughed, ate apple pie and I drank beer. I told him I loved and all my care was through love and not pity. When I left to go...
  2. A

    Excess Saliva

    Hi everyone. My stepdad has bulbar onset ALS. He is having trouble with excess saliva. We have tried 2 oral medications which caused too much dizziness and he can not tolerate the drops. From our first ALS clinic in June, they spoke about Botox. Has anyone had that procedure? And if so, was it...
  3. A

    PEG scheduled tomorrow for step Dad

    My step dad was diagnosed with Bulbar ALS in March 2014. At his ALS clinic early June his breathing was at 48% so he has decided to get PEG tube while he still can. He has lost 75 pounds so far. Hoping he can gain a few pounds back. He has been drinking ensure. Any good tips on making drinks to...
  4. A

    Speech Board

    We are looking into purchasing a speech board. Not sure if that is what is called. But the type that is a board with letters, numbers, pain chart etc. Any recommendations? Also, my Step Dad has his group Dr's appointment at Hopkin's in early June. Is that something they may provide in this...
  5. A

    just diagnosed a week ago

    Hello, My step dad was just diagnosed on March 31st at Hopkin's. We have shape yes ALS for about 8 months. Onset symptoms were slurred speech, difficulty swallowing, weakened muscles, and breathing troubles. I'm his stepdaughter but really want to step in and do as much care giving as possible...
  6. A

    i want to help

    My step dad is displaying signs of ALS. He has a Dr's appointment at Johns Hopkins with an ALS specialist soon. He is a very proud man and I do not want to overstep my boundaries, but I am seeking out suggestions on how I can best relate to his struggle and what things can I do to be the most...
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