Amid a topsy-turvy start to 2024, I’ve marked a date on my calendar I’ve been looking forward to more than any other: Valentine’s Day. While it might not be a particularly significant day for many others, it’s a big deal for me. It’ll be my first time celebrating the day…
Columns
I do too much. You might assume I’m talking about caregiving because you’re reading a column written by a caregiver. And in part, you’re right. But mostly, it’s an admission that I’ve been doing things for my three sons with Duchenne muscular dystrophy (DMD) that they can…
I received an email on Jan. 12 from Duchenne UK, an important Duchenne muscular dystrophy (DMD) nonprofit in the United Kingdom. Its announcement: “Breaking News! First treatment for all [DMD] patients approved in U.K.” It went on to note that the Medicines and Healthcare products Regulatory Agency,…
I love to read, but finding time to sit down with a good book can be challenging in my busy house. As a mom to seven and a primary caregiver to my three sons with Duchenne muscular dystrophy (DMD), quiet time is often interrupted by my children. Occasionally, however,…
The symptoms of my facioscapulohumeral muscular dystrophy (FSHD) make staying positive a daily challenge. Many people with muscular dystrophy struggle with depression. This battle is magnified every winter as I also feel the impact of seasonal affective disorder (SAD). Exposure to sunlight helps our bodies…
One of my favorite early-summer memories is from when my sons Max and Rowen were younger. Both lovely little boys — one blond-haired and blue-eyed, the other dark-haired and brown-eyed — squealed with laughter upon discovering a frog in our front yard. Max held the frog up in his hands…
There is joy after a diagnosis of Duchenne muscular dystrophy (DMD). There is joy after the loss of ambulation. There is joy in the midst of watching Duchenne slowly work its progressive, muscle-wasting way through my sons Max, 18, Rowen, 14, and Charlie, 12. That may be hard…
As I look forward to the year ahead, I’m filled with a mix of emotions: unbridled joy at the thought of spending my first Valentine’s Day with my girlfriend, Amanda; a sense of dread as my caregiver Glenda leaves in July; and the euphoria of turning 29 in October. Writing…
Pennsylvania’s Somerset County, where I lived before moving to Pittsburgh a year ago, is situated in the Laurel Highlands, an area that is part of the Appalachian Mountain Range. At an elevation of more than 2,000 feet above sea level, the county often gets snow when other parts…
When I stopped working at a job away from home in 2007, I never imagined it would be a permanent change. I was pregnant with my third child, Chance, who is now 16, and had decided that I wanted to stay home full-time with my kids. On my last day…
Recent Posts
- I have 5 essential tools for managing cold and flu season with Duchenne MD
- FDA fast tracks Dyscorban for treating heart problems in Duchenne
- My emotions blurred as I watched my play from ‘The Other Side’
- MDA-led project to map how human muscles repair themselves
- My willingness to educate others about MD benefits all of us