Columns

Years of living with facioscapulohumeral muscular dystrophy (FSHD) have taught me that it’s a balancing act on a high wire. It’s an everyday challenge to keep from falling off one way or another. Overdo it and you spend a day or two paying the price with…

My seven kids are my kids. That’s it. They all have strengths as well as weaknesses, challenges, and issues they must overcome. They also all have moments when they argue, talk back, get in trouble at school, and are genuine pains in the rear. I cannot tell you how…

It happened two weeks ago. Then it happened again yesterday. Is this my new normal? If so, what to do? Should I laugh? Should I cry? Is a little spilled milk worth getting upset? I’m an early riser, getting up each morning to say some prayers and read some meditations.

This month, I had the rare opportunity to meet Dr. Brenda Wong, a native Singaporean and a professor of pediatrics and neurology at the University of Massachusetts Chan Medical School, where she was the founding director of its Duchenne Program. My parents had heard Dr. Wong’s name since…

In a large family, there is always something to celebrate. I have seven children whose ages range from 15 months to 21 years old. Last week, we attended opening night at the theater, baseball games, a first communion, and a belated birthday celebration. Next week, we have another opening night…

As I’ve tried to decide what part of Duchenne muscular dystrophy (DMD) to write about this week, I can’t seem to come up with the amount of focus necessary to do so. Instead, Duchenne is always there, all the time. Does that happen to anyone else? Duchenne can take…

Each of us dealing with facioscapulohumeral muscular dystrophy (FSHD) is on a slightly different trajectory. For some, the disease is a series of small losses that level out to a period of relative stability. For others, the disease is a steady, steep decline. For some, the disease remains confined…

While very serious and sometimes grim, the prognosis today for Duchenne muscular dystrophy (DMD) is the best it has ever been. This is because so many new therapies are in the clinical trial process, and some have already been approved. As a result, parents of children…

Note: This column contains spoilers for the series finale of the Netflix TV show “Dead to Me.” As I write this, the date is April 3. I’ve just survived the longest and most helpless week of my life. Two Sundays ago, my support worker, Glenda, suddenly fell ill from…

As a child, I wasn’t around people who used power wheelchairs. Perhaps because my sons were the first people I’d met who were living with Duchenne muscular dystrophy (DMD), or maybe because I’m old enough, power chairs seemed less prevalent when I was younger. After my sons were…