Chapter 24: Progression

 ALS is both predictable and unpredictable. It’s a progressive disease but it can move slowly or quickly. It affects various muscles but can start in the legs, arms, hands, or vocal cords. For one friend of Jessica it started in the big toe.

When Jeremy was diagnosed (August 2025), a friend told me to expect periods of decline followed by “plateaus.” I was doubtful at the time because the progression had been so fast. We didn’t really see any plateaus for the first few months. After that, sure enough, there would be weeks when things seemed to stabilize. 

Unfortunately, once this disease takes hold there is no turning back. The plateaus offer a little respite but there are no upswings.

Eric Dane passed away today from ALS, and I watched his “Final Words” interview on Netflix. In addition to his sweet messages for his daughters (be brave, find your purpose, and live in the moment), it struck me just how rare this disease is (about 2 new cases per 100,000 each year in the U.S.) and how many people know little to nothing about it - including medical professionals. 

I hope that by writing about Jeremy’s situation I can encourage people to learn more. Even though it’s rare, each of these lives is precious. And each ALS story has profound lessons for the rest of us.