In memory of Michael Berardi

My brother was an incredibly successful and healthy 38 year old man when his wife told him to stop flexing his arm when he put his arm around her on the couch. He wasn’t doing it intentionally, but they didn’t understand what was happening at the time. Our maternal grandmother had died of ALS 25 years prior, but back then we believed ALS was sporadic, not genetic.

He slowly became weak and concerned, but he was also in denial. He sought out reasons such as a combination Lyme disease and Celiac disease. He traveled the world to visit far away churches to plead for his health. Once the captain of his hockey team he now struggled to walk up a flight of stairs. His strength vanished faster than we ever imagined.

Just has he got used to one physical aid, he was moving on to the next one in the line up. Just as we were getting used to the new life style, we had to adjust again. He choked on his smoothies and got a feeling tube, determined that he could be a medical miracle and this would be reversed when his real diagnosis was discovered. Then he couldn’t breathe and he received a trach. Then he communicated using an eye motion letter chart. Then he lost control of his eye movements. He died due to a complication of his feeding tube replacement.

He was born the year the Bruins won the Stanely Cup, which they didn’t do again until the year he died. He was happy to see it happen, but he broke our hearts when he passed just two years from his first symptom. That was in 2012. In 2019 my maternal uncle was diagnosed with ALS also and he was identified with the c9orf72 mutation. I was then diagnosed with same genetic mutation. I am doing whatever I can to help my 3 daughters and 3 grandkids.