In my last column, I wrote about the increasing difficulties I’m having safely navigating my home using the “furniture surfing” technique. I wondered whether it was time that I break out the walker and give it another try. I also mentioned my plans to contact my doctor to discuss…
Columns
It’s now tornado season here in Nebraska, which is part of the U.S. Tornado Alley. I could write a column about Duchenne muscular dystrophy (DMD) being like a tornado in the way it came tearing through the life we’d established when my three sons — Max, 18,…
As my time with the assistance dog charity I work for comes to an end, I’m seeking opportunities to occupy my time and keep me meaningfully engaged. At the same time, I’m looking forward to discovering other means of employment to ensure that I realize my goal of self-reliance…
I have three sons with Duchenne muscular dystrophy (DMD): Max, 18, Rowen, 15, and Charlie, 13. When Max was young, he met all of his developmental milestones late. He didn’t sit up until he was 11 months old, crawl until after his first birthday, or walk until he was…
I had an incident about a month ago that I’ve been thinking about ever since. It’s left me wondering if it’s time for me to begin using a walker, something I tried years ago without much success. The Sunday after my wife, Wendy, had surgery recently, a friend…
I have three sons with Duchenne muscular dystrophy (DMD): Max, 18, Rowen, 15, and Charlie, 13. While caregiving and parenting three young men with Duchenne is full of the challenges and heartaches I often share in this column, they do not outweigh the beautiful moments. Joy and…
During the month of March, I took a break from writing my column because I was experiencing withdrawal from recently tapering off an antidepressant and a steroid medication, which took a toll on my mental and physical health. The withdrawal symptoms aggravated my comorbid attention-deficit/hyperactivity disorder…
My mind is spinning like the wheels on my son’s power wheelchair in the freshly fallen snow. You did not read that wrong, and it’s not a hypothetical. Here in Nebraska, it snowed this last week of March. It feels like a second winter. As if the spring snow isn’t…
I received an overwhelming response to my last column, in which I grappled with feelings of uselessness when my facioscapulohumeral muscular dystrophy (FSHD) prevented me from helping in the way I would have liked to do. In this case, I was sitting at home while my wife, Wendy,…
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…
Recent Posts
- I’m grateful for meaningful conversations with my adult children
- Early trial data support RNA therapies for two muscular dystrophy types
- Figuring out where to buy a lift chair for my FSHD symptoms was no small task
- Sarepta plans to seek full FDA approval of 2 Duchenne treatments
- When it comes to rare disease advocacy, just keep showing up