Reaction score

Profile posts Latest activity Postings Media Albums About

  • Hi Jackie! I also joined this group to try to find someone close to my age to talk to. My husband was diagnosed in 2004. I am his sole caregiver. We are together 24 hours a day/7 days a week. My children started college this past fall and moved away. I have been on my own ever since. I realize that at 42, I'm a bit older, but I also am just looking for someone that can relate. Everyone we have met at our ALS/MDA Clinic is so much older. They are retired, their houses are paid for, their children are grown, and they just aren't facing the same issues that I am. It's a difficult job that we have and it's important to have somebody to talk to.

    There is a new member- 24 years old- she posted her details on her profile page- maybe you can touch base with her as well. Her name on the forum is KathrynA
    Hi Jackie,
    I am a bit older, 37yo, but understand what it takes to be a caregiver. I am not my father's full-time caregiver, but live close enough that I help my Mom out on a regular basis, to include giving her a break for overnight care. My father was diagnosed with ALS in 2011 and has no use of his arms or hands, thus requiring help with all of his daily needs. This is the most brutal disease I have ever witnessed and it definetely feels overwhelming on so many levels. Unfortunately, not only is my father terminal, but my mother is as well- stage IV Metastic breast cancer. Feel free to message me or send an email to [email protected]
    I don't have a single friend that really understands what this journey is like.

  • Loading…
  • Loading…
  • Loading…
  • Loading…
  • Loading…