person with als

  1. D

    Family not helpful

    In another thread I explained that I didn’t think I’d be able to be enough support for my boyfriend who lives with his mom and sister. He and I have been together for 5 years but have been becoming a bit distant since my daughter died 7 months ago. I’ve been needing time to myself . But then...
  2. N

    Family member positively reflecting on life and loss

    I hope this post is appropriate for this section, but I wanted to briefly share a personal reflection of my experience during my father's battle with ALS and what I hold dearest to my heart after losing him. The topic of ALS can be a sad discussion, it is sad. But, as odd as it sounds, after I...
  3. Q


    Hi, I like to know if it’s true that if a person with als who uses a bipap 24/7 will not need invasive ventilation?
  4. P

    Is this ALS? Or can ALS improve?

    Hello I have some health problems for 5 months now and it is destroying me. And I have some questions for you to clarify what docs could not. It started with twitching in legs mostly in thighs and calfs but it became widespread. Next I started felling a weakness after some sport activities. Like...
  5. T

    ALS Familia question

    My PALS was diagnosed in Sept 2011. I am not aware of anyone else in his family that has or had ALS. His mother passed a year and a half ago and a family member came across an old letter that she had filed away about a family member who had died showing some symptoms of ALS probably 75 years...
  6. A

    Second Opinion Confirms ALS

    Hello everyone. I have been recently been diagnosed with ALS through a second opinion. Obviously things are very confusing right now and have yet to set in. I am still extremely hopeful that this is a misdiagnosis and will be seeking a third opinion. A little history about my journey to this...
  7. JimInVA

    How We're Doing - My Facebook Post

    People often ask how my wife, Darcey is doing... and I'll typically answer "She's holding her own pretty well!" I honestly don't mean to be "put offish" with that answer... its just difficult to describe where she's at in her ALS journey or how exactly we work together each day to "keep...
  8. A

    Natural herbs?

    Can someone point me in the right direction. I've read and been advised we should seek some recreational drugs! For a person with ALS what would be the benefits, verses prescription pain medicine? Thanks for any input. Alana:|
  9. H

    ALS Foundation in the Philippines

    My cousin was diagnosed as Amyotrophic lateral sclerosis (ALS) positive. I just wanted to know if there are foundations here in the Philippines that helps and support person with ALS? She needs a series of medical tests and maintenance drugs but due to financial constraints, she cannot afford...
  10. O

    Creating a digital legacy - video messages for children

    Hello everyone, I'm a PhD researcher from the UK looking at the use of digital legacies with people living with ALS, and how the legacy is used by children in their family. Although there are lots of different types of digital legacy, I'm focusing on a purposefully recorded video-based legacy...