Columns

My Parents Have Helped Me Overcome Duchenne MD

A 7-mile hike with a 1,000-foot elevation gain was on the schedule for our second day of camping at Point Mugu State Park near Malibu, California. I was with our small Boy Scout Troop 911, which operated out of my elementary school in Huntington Beach. It was a…

What We’ve Learned About Marriage as DMD Parents

My marriage is one of the most important things in my life. Shortly after my sons were diagnosed with Duchenne muscular dystrophy (DMD), I heard a staggering statistic about the divorce rate among DMD parents. Issues like financial strain, stress, exhaustion, depression, and grief can create problems in the…

How I Overcome Constant Worry About Life With Duchenne

Having Duchenne muscular dystrophy gives me plenty of things to worry about, like scheduling doctors’ appointments on time, not knowing when I might lose my ability to do certain actions, and using the bathroom when out with friends, because I know I’ll need help but will be too embarrassed…

3 Reasons I Love Having 3 Sons With DMD

Before COVID-19, I used to travel a lot and participate in several in-person meetings and conferences related to Duchenne muscular dystrophy (DMD). Unfortunately, having three sons with DMD is somewhat rare, so I was sometimes shy to share this fact when introducing myself. When I did, the room would often…

What I’ve Learned About Adaptive Skiing and Duchenne

In a previous column, I mentioned that my family would be skiing in Winter Park, Colorado, over Christmas break. My sons Max, Rowen, and Charlie, who have Duchenne muscular dystrophy, tried adaptive skiing for the first time. The experience taught us a lot. Traveling with the boys requires…

Coping With the Stress of Caregiving

Being the mother and caregiver of three sons living with Duchenne muscular dystrophy brings a lot of stress. Much of it is everyday stress that I have learned to live with and don’t always notice — like knowing that three of my children have a fatal and incurable disease, and…

Holiday Gift Ideas for Loved Ones With DMD

I often see posts in Facebook groups and other places asking about what holiday gift ideas people might have for sons with Duchenne muscular dystrophy (DMD). Duchenne can affect different muscle groups, and patients can experience both muscle weakness and problems with muscle control in performing tasks and activities,…

Decreasing Decision Fatigue Through Time Chunking

It’s good to have you back to my column, “Hidden Truths.” I appreciate everyone who takes the time to read my reflections on life with limb-girdle muscular dystrophy. As I was considering what to write this week, I received a wonderful comment on a recent column from a…