When Michael Wilson started noticing the muscle twitches in 2014, he and his wife, Wendy, figured it had to be stress. It had been a hard year—Michael’s father had just passed away—and they thought it was his body’s way of telling him he needed rest. But the twitching didn’t go away, and as time went on Michael began to notice muscle weakness as well. Something was definitely wrong.
Finally, in 2017, Michael was diagnosed with ALS. And while he and his wife and 7-year-old daughter, Londyn, had already begun to experience many life changes during those three years, they would soon learn that ALS would impact every part of their lives, both big and small.
As Michael slowly lost the use of his arms and legs, the Wilsons discovered that no task was simple anymore; not the scratching of an itchy nose, not brushing teeth, not going from the kitchen to the living room. “Almost every single thing that Michael needs to do has to be done by someone else,” Wendy said. “Twisting the top off toothpaste, bringing a fork to his mouth, opening a door—it’s all on someone else.”
In many ways, their lives became a constant cycle of adjusting, and then re-adjusting. Mornings start early, with what used to be an easy routine, now more complicated and time consuming. “The process of getting ready in the morning for him takes three hours,” Wendy said. “If there’s something early, we’ve got to get up really early. It takes away from your sleep. And it all just adds up.”
The challenges aren’t just physical but emotional as well. Wendy wears many hats—wife, mother, caregiver—and at times, these roles collide, sometimes painfully. She remembers a moment when Michael’s medication infusion fell during Londyn’s bedtime. “She wanted me to read her a story, and I couldn’t,” Wendy said. “I really wanted to, but I couldn’t. And that hurt.”
As she has grown up, Londyn has watched both her dad and mom face the day-to-day of living with ALS. But even though her childhood was not “normal,” she has grown into a young woman with empathy and maturity beyond her 15 years. “If you ask her to do chores, she’ll roll her eyes like any teenager,” Michael said. “But if you ask her to do something for me, she doesn’t bat an eye.” Wendy agreed, “she’s incredibly empathetic. I think these experiences will serve her well in life. She’s already got a perspective that most adults don’t have.”
Even with everyone taking on more than they’d planned, the Wilsons find joy in the time they have together, allowing themselves the grace to laugh at whatever life throws at them. Michael recalls an unforgettably hilarious incident involving a transfer lift and their excitable new dog. “She just booped me—right there—with her cold, wet nose,” he said. “I'm just in the lift, dangling, and (Wendy’s) over there, laughing.”
Michael and Wendy have also found strength from the ALS community. “Joining support groups changed things for us,” Michael said. “At first, we were scared to see what’s to come. But being part of that community empowered us.”
Both Wendy and Michael are also active on their local community leadership council and in sharing their experiences with others. A mechanical engineer by trade, Michael has shared the value of planning for the future with those new to ALS. “Get the equipment you need before you need it,” he advises. “Practice using it. It’s better to figure it out now than during an emergency.”
Michael’s progression has been slower than some others, so he and Wendy try and focus on the here and now and enjoy the small joys of life together—laughter at the dinner table, shared moments of quiet understanding, and the strength of family. “I guess what keeps us going or what keeps us able to smile is just knowing that we have this time together, wanting to enjoy the time that we do have,” Wendy said.
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