1. M

    ALS paired with alcoholism

    Hello everyone, I am the only daughter of a father who was diagnosed in August. He is progressing "slowly" but I'm not really sure (no one is). My issue is that he is a severe alcoholic. Prior to this diagnosis (about 10 years ago) he was instituted as an alcoholic. He has been in and out...
  2. J

    Help! I'm from Portugal! Bulbar ALS? EMG gold standard?

    Dear All! I need your help! My name is Paulo, 46 years old. I’m so glad to find this forum. Here in Portugal we haven’t almost support groups. I beg your pardon for my deficient English. When does “it” begin? In May/June 2015 I noted slight problems in swallowing certain foods (olives). Then I...
  3. O

    Where, O death, is your victory? Where, O death, is your sting?

    Where, O death, is your victory? Where, O death, is your sting? After all it's Hotel California, You can check-out any time you like, but you can never leave!. I have no fear of death, but I do have fear of the lock-down syndrome, I have no wish to be force fed or of artificial breathing for...
  4. 4tloml

    On Grief

    Just read this by author Mirabai Starr: "Elisabeth Kübler-Ross, pioneer of the conscious dying movement, lived to regret having described the common features of the grief journey as stages. She came to see that everyone grieves differently and that science collapses in the face of the mysteries...
  5. Atsugi

    Life Expectancy and its Variables

    I copied some statements (below) about life expectancy. Here’s what I think I know from the doctors and from helping my wife as she progressed: In ALS, death usually comes from impaired breathing, especially aspiration pneumonia due to swallowing problems. If the patient lives long enough...
  6. Atsugi

    One family survives ALS

    I wrote a huge blog post about how my family continued to evolve after the death of our PALS. You're all welcome to view it. Maybe former CALS could post their own stories and hints about the post-PALS experience. That would be useful for everybody. --Mike