Columns

Dear doctors, I am writing to share my knowledge about living with a rare, chronic condition called limb-girdle muscular dystrophy. There are many types of muscular dystrophy (MD), ranging in age of onset, severity, and common symptoms and comorbidities, such as heart and lung involvement. But…

One thing I love about living in the Midwest is enjoying all four seasons. The last week of summer is nearly over, and autumn officially begins next week. On a walk yesterday, I noticed the first leaves changing and drifting to the ground. Another thing about me is that I…

Living with Duchenne muscular dystrophy means every trip to the hospital is key to my survival. From heart scans to routine medical appointments, leaving home is never simple. I rely on my mom to ferry me to every checkup in our family’s wheelchair-accessible vehicle. Earlier this year, when…

I expected today, as this column is published, to be long and exhausting. I’d been scheduled to drive to my central Nebraska home from Denver, then help the marching band perform at halftime of the high school football game. I’m a mom to seven children: Lexi, 24; Max, 19;…

My facioscapulohumeral muscular dystrophy (FSHD) causes a variety of symptoms that affect every aspect of my life. Sitting up in bed is a challenge. Getting dressed is tiring. Standing up has become a laborious process. I’ve had to adapt the way I brush my teeth. Eating is a…

On Aug. 21, I wrote to my local newspaper here in Singapore about a gap in housing policy that affects younger adults with severe disabilities. I’m one of those younger adults: I’m 29 and have Duchenne muscular dystrophy, a progressive condition that leaves me fully dependent on caregivers…

I’ve written columns about community and connection. I chose these topics because they’re relevant not only to those of us with rare, chronic conditions, but to everyone. I write through the lens of living with limb-girdle muscular dystrophy, but I strive to connect to all of society.

I spent part of this week with three of my sons in Denver. On Wednesday, they had a clinical trial appointment, followed by an appointment at the assistive technology clinic to try out some robotic arms. In anticipation of the latter, I began to reflect on my sons’ journey…

For years, I told the kids we couldn’t get another dog unless something happened to the two we already had. I did not want three dogs! I didn’t have room for that! Yet we now have a new puppy. My life is bursting at the seams most days, given that…

I’ve been on my own for the past 10 days while my wife, Wendy, and daughter Jill have been vacationing in Iceland. It’s been challenging. A couple years ago, when Wendy and Jill traveled to Croatia, Greece, and Slovenia, I wrote a column titled “Good to know that I…