Columns

I was mad at my husband, Jason, for spending the night in the recliner. He’d been there because he’d been snoring loudly enough at night that I hadn’t been sleeping well, and he wanted to ensure I got a good night’s sleep. But I was in no mood to recognize…

Getting surprise help when you have facioscapulohumeral muscular dystrophy (FSHD) isn’t considered newsworthy. But maybe it should be. These days, it seems that most, if not all, of the news on television and social media is bad. These negatives aren’t limited to reports on wars, hurricanes, inflation, pandemics, and…

I drove my oldest son, Max, who is 17, to his second college visit this week. As we veered onto the interstate, I told him I knew someone his age who’d already decided to attend the school we were about to visit. He was surprised. “Already?” he said. “How…

Duchenne muscular dystrophy (DMD) is not a one-size-fits-all disease. I have three sons with DMD: Max, 17, Rowen, 14, and Charlie, 12. Each differs vastly from the others, from the speed of disease progression to how their bodies handle the changes, plus how each deals with the stress and…

Back in the 1980s, as a high school special education teacher, I enjoyed giving my students an assignment at the start of the school year to see if they could follow directions. I told them to read the document I handed out before doing anything. The directions on the top…

On Sept. 2, the Muscular Dystrophy Association (Singapore) (MDAS) held its annual Go the Dystance carnival at One Punggol, a community hub that houses the Punggol Regional Library. The event is typically held between SMA Awareness Month in August and World Duchenne Awareness Day on Sept. 7.

“Vroom, vroom, vroom” trails my son in the hallway at school. “Whoa, there. Do you guys have a license for those things?” an older gentleman says as my family navigates our way through a shopping area. “You drive that well,” a stranger remarks. Those are just some of the comments…

Duchenne muscular dystrophy (DMD) can be all-consuming. It’s so big that it often takes up all the leftover space in a room. However, we’ve had years where life is bigger than Duchenne. I’m grateful to be experiencing one of them now. My life often revolves around DMD because…

Those who read my columns regularly will know that my last one was written just after my wife, Wendy, and my daughter, Jill, took off for a vacation in Croatia, Greece, and Slovenia. Over their two-week trip, we communicated by FaceTime a lot, and they seemed to be having…

The first time the words “Duchenne muscular dystrophy” (DMD) were spoken to me, they might as well have been in a whisper. I could barely comprehend the specialist sitting across from me who was saying something was wrong with Max, my beautiful, oldest son. I remember asking questions, although…