Beyond Medication: Small Changes Can Improve the Lives of Patients With DMD

Over the 37 years of caring for his brother Ryan, Blake Benton learned how much small adjustments could dramatically impact Ryan’s quality of life.

Benton, now in his early 30s and cofounder and executive director of Coming Together for a Cure, remembers when Ryan, 5 years younger than him and living with Duchenne muscular dystrophy (DMD), was in his 20s—stronger than he would later become—yet if his arm slipped off the joystick of his wheelchair, he didn’t have the strength to lift it back up. Benton said something as simple as this could leave his brother stuck, unable to move or call for help.

Minor adjustments, like placing a pillow under his hip at night, made a difference for Ryan. “It would give him two extra hours of sleep. And better sleep meant he could approach the day more confidently and independently,” Benton said.

Ryan also received physical therapy, aquatic therapy, and massage, which made his day-to-day life a lot better. But these therapies are not always easily accessible, Benton said. Families need the right insurance coverage, access to the right providers, and the ability to travel to appointments—or better yet, in-home care options.

“There’s a lot of talk around finding a cure for Duchenne, and that’s great. But all these little things that make people’s lives so much better are rarely discussed,” Benton said.

Researchers are developing innovative treatments for patients with muscular dystrophy, including gene therapy and stem cell therapy. However, for many patients, these treatments won’t arrive early enough. What can be done in the meantime to help them live the best lives possible?