Columns

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…

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…

Making it to 25 years old is no small feat. It means you’ve survived for a quarter of a century. While 18 is a clear demarcation between childhood and adulthood, 25 makes it even clearer still. I celebrated that moment on my birthday last Friday. Getting this far in life…

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…

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…

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,…

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…

Millions of people around the country have quit their jobs in search of more fulfilling work, better hours, and work-from-home options in what the media is calling the “Great Resignation.” Some of them, I’m sure, are realizing that they don’t need to work a full 40 hours to accomplish…

My husband, Jason, and my three sons with Duchenne muscular dystrophy — Max, Rowen, and Charlie — just pulled out of the driveway. They are headed to Denver for neuromuscular appointments that start this week. A couple of weeks ago, I shared in a column that I wouldn’t…

Learning when to say yes and when to say no has been especially important for me as I live with Duchenne muscular dystrophy (DMD). It’s a balance between trying to rise up in my career by accepting story assignments, and saying no to events, friends, and more assignments so that…