I’ve had a walker with wheels for a decade. I got it after back surgery in 2014 and used it for a month or so. As a blind person with facioscapulohumeral muscular dystrophy (FSHD), I found it much more difficult to maintain my orientation without direct touch. I was…

Sometimes we need wake-up calls in life. They are near misses that tell us we need to make a change, approach a problem differently, or alter how we interact with others. These can take the shape of a car crash that tells us we need to pay attention and get…

I have a decorative sign hanging on a wall that says, “Life starts all over again when it gets crisp in the fall.” The fall reminds me that we need to begin to prepare for school. Every fall, my husband, Jason, and I attend individualized education program (IEP) meetings…

Three of my boys were diagnosed with Duchenne muscular dystrophy when they were small. We’ve spent many years preparing to be caregivers for them as adults with Duchenne. We remodeled our home, added ramps to the front and back of our house, and upgraded to a wheelchair-accessible van. The…

Muscular dystrophy is a genetic condition that causes muscle weakness and a loss of muscle mass. There is no cure for any type of muscular dystrophy but there are treatments that can help patients manage the symptoms and improve their quality of life. MORE: Watch what happens when children meet a man…