ALS
Sunday, September 6, 2026
My name is Becca and my husband, Joe, was diagnosed with ALS officially in March 2026. He had started to have noticeable symptoms in October 2025, but we did not get him into a doctor until late December 2025. The reasoning for this seems silly in hindsight: his insurance sucked, and he and all of our kids were moving onto my plan in January. So, one appointment, for something we thought truly would be a neurosurgical fix, was a lot easier to swallow paying for at the end of his own insurance enrollment.
January came, and he got set up for all sorts of appointments thanks to the neurosurgery and neurology teams he saw. At first—they were hoping it was surgical. There were issues in his spine, not massive issues, but they were issues that could ‘possibly’ explain some of what he was experiencing per the MRI’s. However, an EMG was ordered to be safe. The EMG is where it all went from bad to worse. That was when we learned the issues in the spine were NOT the issue—it was his motor neurons. Enter ALS…
It has been a devastating ride ever since. This is not the first marriage for either one of us—but it is the first marriage where we both feel loved, supported and safe—the one where you know you have found your person. To have to face the fact that one of us will depart this life much sooner than planned has been a traumatic thing to wrap our minds around.
A year ago, last August and September, Joe and I had begun discussing our retirement—granted, at that point it was at least 15+ years away for both of us, but it is fun to plan and dream. We really liked the idea of getting a van or a camper and driving around the country. It did not matter where we went as long as we were together. Now, we are facing the hard reality that we will not live that dream out together. It has been a hard truth to swallow.
Regardless, we are trying to find joy in the every day. He is still here and we are still alive so we should LIVE. That might look different than it did a year ago, but it involves a lot of taking advantage of opportunities as they present themselves—going to see favorite musicians perform, going to parents’ weekend at our middle’s university, seeing friends as much as everyone’s schedule allows. We even started doing little things, which are more manageable at times, more local: we got a membership at our states space discovery center where we can see all the planetarium shows we want as Joe loves space; we have begun to enjoy “memory lane” weekends where we watch our favorite cartoons from childhood in our pajamas while enjoying our favorite childhood cereals; and we still volunteer with one of our local rescues, going to events at local breweries and helping show off all the wonderful pups available for adoption.
So, ALS sucks. The future is not what we had planned. We are learning to pivot with everything life is throwing at us. This seems an impossible task to conquer as times. It can be exhausting, depressing and lonely for both of us. But we still have each other. We do not want to waste whatever time we have left with each other because that time is more precious than gold. ALS might rob a lot from us, but we will not let it take our joy or our love.
A Dozen Yellow Roses 