BOSTON (CBS) – Steve Kowalski was diagnosed with ALS in August 2017. He was losing feeling in his right toes, and noticed on a vacation to Florida that he couldn’t successfully slip the foot into a flip flop.
He knew he needed to go to the doctor to get it checked out, but didn’t think much of it. His doctor then sent him to Tufts, and within two hours he had a diagnosis. “It was shocking because I literally walked to Tufts thinking ‘OK something’s wrong’ and walked out with a chronic, fatal disease,” he told WBZ.READ MORE: "Time for the village to step up": Volunteers help ease nationwide baby formula shortage
Kowalski was at the doctor alone, and didn’t tell anyone about his diagnosis for 90 days — not even his three children, in their teens and twenties.
“I obviously was in a complete fog,” he said. “I was just riddled with despair and worry and not myself. Just hiding from the world.”
But in that lonely time, Kowalski saw something on the TV. Pete Frates, a Boston College grad and ALS hero, would be honored on September 5, 2017 on Boston City Hall Plaza with “Pete Frates Day.”
As much as he wanted to avoid facing the disease, Steve Kowalski felt compelled to go. He stood far in the back of the crowd. “I was so reluctant to go,” he said. “I wasn’t ready to face this publicly at all.”READ MORE: Video: Likely tornado spotted in Charlestown, New Hampshire
Then, he heard Pete’s wife, Julie, speak. “After listening to Julie, Pete’s wife, and Pete’s mom, Nancy talk, it pulled me in and basically pulled me out of the fog I was in,” Kowalski said. “They taught me that ALS doesn’t need to be a death sentence but it can be a life sentence, and you’ve gotta fight for your loved ones and not give up, and that’s what I’ve been doing ever since.”
Kowalski is deeply involved in the ALS foundation. His three children have moved in to be with him and support him. He’s still walking — sometimes with the help of a cane — and says fatigue is his biggest struggle right now.
Two years after that day on City Hall Plaza — at the five year Ice Bucket Challenge event in Boston — Kowalski had the chance to thank Julie Frates for changing his outlook on the disease. “We hugged and we cried together and I thanked her,” he said. “She didn’t even know she helped me that day.”
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He says Frates’ impact, both financially and emotionally on ALS research and patients, cannot be understated, and that he’s incredibly sad to hear of his passing, but hopes to help carry on his legacy through fighting for a cure.