• The hardest part for me is that we’re young for ALS. My wife and I are both 39- so on top of seeing all your dreams crushed and dealing with the grief, I’m working full time, we have a 5 year old son, and now I’m a full time caregiver and paperwork jockey. I suppose we’re fortunate in a way that I can work from home, but there are definitely days when I don’t know how much longer I can keep this up.

    I’ve found the ALS resources to be pretty lacking, but then again, what I’d really like is someone to live with us full time and take care of half of this! My biggest lesson learned is to accept help when offered. It took a while to get to that point, but family and friends have been generous with their time when they can, and that’s been helpful.

    • Owen,
      You and your wife are very young for ALS. I know it can happen at age, but we don’t anticipate it until we are in our 50s or older. My cousin, Jessica, was in her early 40s and had just had her second child. Her symptoms started showing up when she was pregnant and the doctors assumed it was related to her pregnancy. After she had her daughter the symptoms continued. It took about a year to get her diagnoses and they only considered ALS after she mentioned that our grandfather had ALS. (We’ve had over 14 people with ALS in my family) My family had always been involved with fundraisers because of my grandfather and an uncle. At this point the family volunteered for several research studies. Between the volunteering and actively participating in research my family in Missouri had a lot of contacts for support.

      You are smart to look into ALS resources. There might be some other resources through other organizations in your community. Have you reached out to churches, or community organizations. Honestly, I think accepting help from friends and family is the hardest thing to do, but the best way to have support. They often feel helpless and just want to make things a little easier, even if it is temporary.

      Amanda

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