Columns

I recently took my three sons with Duchenne muscular dystrophy (DMD) to a hospital in Denver for three days of a clinical trial. One day was for each of them — Max, 18, Rowen, 15, and Charlie, 13 — and then they each had a day of cardiac…

I am traveling this week with my three sons who have Duchenne muscular dystrophy (DMD): Max, 18; Rowen, 15; and Charlie, 13. The four of us are in Denver for three days of clinical trial appointments and one day of cardiology appointments. Other Duchenne moms are often surprised…

As I write this column, my wife, Wendy, is undergoing abdominal surgery. I won’t go into details, but it’s a pretty extensive procedure, so I’m concerned. I’d like to be there for Wendy, but due to my health issues, it’s just not possible. Instead, my daughter Jill is with her…

I don’t want to miss a thing. Yes, as I typed that, I sang the Aerosmith song in my head. It’s the soundtrack to my husband Jason’s favorite movie, “Armageddon.” But more than that, as a special needs parent and caregiver, I find that the lyric plays…

Life is lived in seasons, at least here in Nebraska, where we experience all four of them. Some days offer nearly perfect weather: The sun is shining, the temperature is in the mid-70s, and I can smell the thaw of winter and feel the hope of spring. Then there…

I’m reading “Eyes to the Wind: A Memoir of Love and Death, Hope and Resistance” by Ady Barkan, a late lawyer and political activist who had ALS. It’s been a tough read so far. In the book, Barkan recounts his experiences after being diagnosed with ALS…

I am a competitive former college athlete married to a someone who is equally competitive and also was a college athlete. We like to win and try to position ourselves in ways to make it possible. However, when three of our sons, Max, 18, Rowen, 15, and Charlie, 13, were…

On Feb. 19, I went to see my psychiatrist for the first time in 2024, after enduring a rocky start to the new year. When I last saw him in November, we’d decided that I’d consult him again as needed, but I wouldn’t have fixed appointments. The year started for…

When three of my sons were diagnosed with Duchenne muscular dystrophy more than 10 years ago, I shared everything we experienced on social media and found support and understanding. But as they grow older, weaker, and more dependent on me, I find caregiving harder than I could’ve imagined. I…

Last night, my wife, Wendy, asked me if I’d like to go out to eat. For most people, this request wouldn’t require much thought. It’s a simple yes or no question. However, my facioscapulohumeral muscular dystrophy (FSHD) makes even simple decisions like this one much more complicated. FSHD is…