dying

  1. L

    Dad is actively dying

    Hi everyone, my Dad is now actively dying. He started rapidly deteriorating over the weekend. He couldn't inhale well and was gasping for air. He stopped tolerating his tube feedings and were increasing is morphine and Ativan doses everyday. On Monday the hospice determined that he was eligible...
  2. J

    I just need assurance

    I have already read the sticky note but I just have some questions I need answering. Sorry if this seems long or you have read this before, I just really want to make sure. My symptoms: -Muscle twitching all over body (Legs, Back, Arms) I will say it started a few days ago and I was really...
  3. Lkaibel

    On a Lighter Note

    My husband truly loves me and has my best interests at heart. I was not offended in the least when he told me today that he would like me to see other men because then he would not have to worry about me being alone. I said Sweetie, your heart is in the right place but when would I get time to...
  4. pdcraig

    Need some advice and a bit of a ramble

    It's been a long time since I last posted. My PALS is still hanging in, defying all predictions. It's sometimes hard to believe it's been over 5 years. He's reached the point where swallowing is a real issue. No PEG, he won't consent. He's saying he is choking on his saliva all the time. When I...
  5. J

    Sharing My Experience to Hopefully Help Others

    Hey everyone. So a few years ago I was convinced I had ALS, and one of the only things that calmed me down was coming to forums like this and reading about other people's experiences. Although intellectually I knew it was most likely my anxiety causing the symptoms, it's hard not to panic when...
  6. N

    PAIN and ALS?

    Hi I'm brand spanking new here and I just wanted to know... As ALS progresses and you start to have muscle/ nerve failure, is it painful as the muscles weakens? I mean when you try to move a dying muscle or limb does it cause pain? Does it feel like it is weak and the muscle is straining under...
  7. B

    Possible Onset Bulbar Palsy

    Hello ALS community, my name is Bill. First I would like to say how saddening it is to read people's stories and how brave they are fighting the various symptoms of ALS or other MND's. Good luck and God bless to all of you. My symptoms actually started about 8 months ago wo even knowing it, I...
  8. Tedstehr

    FTD and ALS

    My father-in-law died of FTD/ALS shortly after my diagnosis of ALS. We knew he had FTD, but had no idea about the ALS until I started researching the disease. When I found this sub forum, I strongly suspected what had happened. My father-in-law, Yan, was an incredible man. He was a GP and...
  9. tripete

    Things that you do not hear about ALS

    In June of 2016 I posted a thread about Pain in ALS and how the "experts" tell us that ALS, as defined by the dying/malfunctioning of our motor neurons, is not painful. As time has progressed I have found many other things that "they" tell us are not issues that are. Like Smell, Bathroom...
  10. KatieNBoyd

    Books that helped me

    Hello my friends, I am listing the books that we have. I want them to go to anyone that feels they would like them. No cost I will just mail them to you. Each of these have helped me through all of this. I hope that others might be able to use them too. The Comfort of Home, A complete guide...
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