Last week, I lost my dear friend Aloysius Teo, who passed away at the age of 40. Aloysius didn’t have Duchenne muscular dystrophy, the progressive genetic condition I was born with, which weakens muscles over time, including those used for breathing and heart function. I use a wheelchair…
Columns
Managing my condition is a full-time job. Muscular dystrophy (MD) has woven its way into more than just my muscles. It takes a mental toll as time goes by. The hours tick away. The cells tick away. I was 12 when I learned of my diagnosis. I…
It’s been a big week for the Vertin Party of 9. We moved into our new home, and after only a week, the blessings seem boundless. I’m so thankful to share this because, as you can imagine, moving a large family is a tremendous undertaking. My husband, Jason, and I have…
My regular readers know that I love to play music. I’ve been performing nearly my entire life. Music began for me when I was 5 years old. My dad taught my brother, Tim, and me to play guitar and banjo. These were the right instruments for Tim, who is an…
I share seven children with my husband, Jason, including three sons who have Duchenne muscular dystrophy (DMD): Max, 20, Rowen, 17, and Charlie, 15. Most of my columns talk about caregiving and my sons with DMD. However, in our large family, many other dynamics are at play, including the…
On Sept. 6, I attended the launch of ReadSG at Singapore’s National Library to support my girlfriend, Amanda Yip. ReadSG is a five-year national movement by the National Library Board, Singapore’s public agency for libraries and archives, that encourages people to make reading an everyday habit, starting with…
I’m writing these words as we pass the 25th anniversary of the terrorist attacks of 9/11. Those of us old enough to clearly remember that day, and the days that followed, remember a nation and a world that was profoundly changed. Volumes have been written, studied, and analyzed in…
Last week, I traveled with my sons Max, Rowen, and Charlie to Colorado for their multidisciplinary neuromuscular clinic visit at a children’s hospital. My husband and I typically don’t both travel with the boys, so one of us can stay home with our younger daughters. This time, it was…
A few days ago, my friend Reena Deen, a disabled independent filmmaker with complex post-traumatic stress disorder and dyslexia, shared with me that her film “The Damned Ones” was selected for the After Dark Program at the 2026 Torino Underground Cinefest. “The Damned Ones” is a mystery…
Facioscapulohumeral muscular dystrophy (FSHD) and other health issues make it difficult for me to move these days. It’s hard to reposition myself when I’m sitting down. Standing to transfer now requires a seat that’s 22 inches or higher. It’s challenging to turn my feet to move from my wheelchair…
Recent Posts
- A close friend’s death prompts reflections on my own life and mortality
- FDA OKs trial testing treatment for muscle regeneration in FSHD adults
- I have many full-time jobs, and managing MD is only one of them
- MDA Engage: ‘I am not alone’ was the biggest takeaway in Chicago
- Having more space to spread out in our new home is the best blessing