David Kelly had recently retired from 33 years of teaching science at Pembroke Academy when a doctor’s visit about what he thought was carpal tunnel syndrome yielded life-altering news: Kelly had Lou Gehrig’s Disease.
An avid outdoorsman, he had spent the summer camping with his wife. Throughout his adulthood, he had checked off all 48 4,000-footers in New Hampshire and coached both softball and robotics. His family couldn’t reconcile the terminal diagnosis carried by the neurodegenerative disease with the active, vibrant man they knew and loved.
“I was thinking it was something you could fight,” said his daughter Melissa Kelly, who described her dad as seeming “invincible” to her. “I was like, ‘Let’s go. We got this. You’re a strong person.’ Basically, he was like, ‘There is no cure, and I’m going to go downhill fast.'”
Lou Gehrig’s disease, also known as amyotrophic lateral sclerosis, or ALS, does not have a known cause. It affects the nerve cells in people’s brains and spinal cords. According to the Centers for Disease Control and Prevention, “the nerves lose the ability to trigger specific muscles, which causes the muscles to become weak and leads to paralysis.”
ALS inhibits people’s capacity to talk, swallow, walk, and, as the disease progresses, breathe, according to the ALS Association.
Lou Gehrig was a Hall of Fame first baseman for the New York Yankees, renowned not only for his superb play but also for his durability, which earned him the nickname “The Iron Horse.” In 1939, he shockingly took himself out of a game because he didn’t feel well. He had ALS and died three years later.
Kelly’s family got involved with the ALS Association after his diagnosis. The organization’s counseling support, caregiver education and financial assistance proved instrumental.
Kelly passed away four years ago, but his two daughters, Melissa and Michelle, continue to participate in the ALS Association’s annual Walk to Defeat ALS. The event returns to Concord on Saturday, bringing together family, friends, caregivers and neighbors in Rollins Park.
The money raised through the event not only goes to supporting patients and their care but also funds research toward finding a cure for this “always fatal disease,” the organization says.
“It’s unfortunately very expensive, and you’re also needing a bunch of equipment that you didn’t plan on,” said Melissa. “So the ALS Association helped my parents get a lift in their garage because there were stairs. They helped them get different ramps.”
The association also assisted with obtaining an accessible van, navigating insurance and providing emotional support.
“We always say it’s a club that you are welcome to, but we wish you were never a part of,” she said. “But they welcomed us with open arms.”
She and her sister now sit on the event committee. They’ve forged numerous meaningful connections with folks, including helping a woman with ALS go kayaking. Melissa said she met a father with ALS and shared with him how her own dad had picked songs and danced with his daughters in the kitchen, unsure if he would make it to their weddings one day.
“He was like, ‘Oh my goodness, I have to do this with my girls because there’s a chance I won’t either,'” she said.
The more people she’s met, the more she has realized how widely the disease affects people.
“It’s kind of crazy to think of, that it’s not really as rare as you think it is,” she said.
The CDC estimates 35,000 people in the United States have ALS, with about 5,000 diagnoses each year. The average survival time is about three years, according to the ALS Association.
ALS made headlines a dozen years ago for the Ice Bucket Challenge, which brought awareness to the disease on social media and raised $115 million. The Concord walk is one of many such fundraisers happening nationwide.
Beyond raising money and working toward a cure, Melissa said the event shines for “the camaraderie of being next to people that are also going through the toughest things that they’ve ever gone through.”
In 2021, Kelly was inducted into the Pembroke Academy Wall of Fame. He delivered a speech and imparted advice on how to live a meaningful life. Positivity, he told the audience, matters immensely. It became harder for him once he received his ALS diagnosis. Still, he tried to find reasons to smile.
“But start each day with a positive attitude. If everything goes bad and you fail, try again. Failure and making mistakes is one of the best ways to learn,” he told the Pembroke Academy community. “However, you cannot give up; you have to try again. You can learn to have a good attitude. Life is far too short to go through it spending most of your time with a bad attitude.”
For ALS patients, especially, the walk is a source of joy, an opportunity to leave their homes and reduce isolation, to feel seen and supported.
“There’s like a sense of family with it,” she said.
The Walk to Defeat ALS will be held at Rollins Park on Saturday, Oct. 3, with check-in starting at 10 a.m. and the walk kicking off at 11:30 a.m. To register, visit als.org/WalkNH.
