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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

    Thanks for the tips. We have a nutribullet. And regular blenders as well. So I assume as long as I can get the consistency thin enough to pass through we can blend him some great drinks. So far we have used ensure + with no complications. Only a small amount comes back in the tube if he stands...
  4. 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...
  5. 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...
  6. A

    just diagnosed a week ago

    Tillie, That's a great idea! That way he is in control of what questions to ask and I'm not telling him which ones I think he should be asking. I'm constantly reminding myself, "whatever he wants, support it 100%". Thank you!
  7. A

    just diagnosed a week ago

    Yesterday I was able to ask him about a PEG tube and he did not seem opposed to one but I don't think he's ready to admit he may need one. Or uncertain of other benefits of feeding tube such as feeding medication.He did make it clear a trach was not an option. So until he says otherwise I will...
  8. A

    just diagnosed a week ago

    I know he has an appointment at Hopkins in June and that is when he and my mom were going to the lawyer to write up the advance directives. I think he wanted to wait form the appointment to go over interventions and those questions prior to meeting the lawyer. I feel I will just have to ask if...
  9. A

    just diagnosed a week ago

    Thank you everyone. For a few months I have been doing smoothies: coconut milk, 1 scoop of super greens amazing grass, I banana and chocolate. He loves chocolate and it helps cover up the taste of the powdered greens. I'll have to double check with him but he likes the smootbies thin but maybe...
  10. A

    just diagnosed a week ago

    Dalvin, you mentioned a cut off point for respiration and peg surgery. My step dad said his was 52% at Hopkin's. Would you help explain the cut off point?. Would he not be able to tolerate the anesthesia? I asked if he wakes up at night and he said he sleeps well and he uses his rescue inhaler...
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