Noel’s Story – Living with ALS

Noel is a father, a Red Sox fan, and has been diagnosed with amyotrophic lateral sclerosis (ALS). He shares his story as he continues to do whatever he can to build awareness of the disease with the goal of changing the end result for others living with ALS in the future. 

My journey to getting my diagnosis for ALS started, I was in the masonry, wood stove, chimney business. It was becoming more difficult. I was dropping parts, having a hard time holding on to things. I really didn’t know a whole lot about ALS. I knew Lou Gehrig as a baseball fan. That's how everybody knows of it: Lou Gehrig being a Red Sox fan. That's just another reason to hate the Yankees. Some of the hardest things I think people living with ALS have to deal with, obviously the physical nature of it. You basically become a prisoner inside your own body. Your mind is as strong as it wants to be, as it can be, as you choose it to be. But your body just won't do what the mind says. People living with ALS or that have been diagnosed with ALS, I think most of their difficulties are emotionally. And I know for myself, it's not being able to be that strong father figure for my daughters. I knew my path. I mean, everybody that has that diagnosis of ALS, we all know how it ends sadly, but it is what it is. So, my whole goal was to do whatever I could to improve it for the people behind me that were going to end up getting that same diagnosis I got. I've embraced this and taken it as a challenge to myself that I'm going to do good for this. I'm going to raise awareness. I'm not going to feel sorry for myself. And I'm going to just be out there because every day, whether I want to have ALS or not, I wake up and it's part of me, so I might as well be out there loud and proud and try to gain as much support for the disease as I can.