My ALS Story: Honoring Stephen, Person with ALS

Earlier this month, Stephen Ellis lost his battle with ALS. Prior to passing, Stephen shared his ALS story to help others and their loved ones. We honor Stephen and recognize his ALS journey in his own words.

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ALS is pretty much different for everyone. For me, it started in my lower body. I was walking funny, and my legs started giving out first. I would fall from time to time, which I later found out was foot drop. I was finally diagnosed in January of 2023.

Within 4-5 months, it went from balance issues to a cane to using a walker. Now, I am in a wheelchair. I still have some strength to stand, to get in and out of bed and to use the restroom. But I can’t really walk anymore because of the strength I’ve lost.

Then, I found out about the ALS Network. They set me up with a loaner wheelchair, and introduced me to a lot of other folks to bounce my questions off of. My wife is a part of one of their monthly connection groups. Having the opportunity to interact with the other caregivers has given her a lot of knowledge about ALS, and it has helped her through how the disease has impacted her. We also felt a lot of community support by participating in the Walk & Roll to Cure ALS.

I’m a teacher, and I am lucky to have had the support of my employer to help me continue to work. I always say – if I can still talk, then I can still teach – and if I can get up and get to school, then I’m going to be there.

As long as I can, I am going to be working, teaching, and helping my students. The one thing I always tell people is that I’m going to do what I can do until I can’t do it any more.

Stephen Ellis

Person with ALS