I’m at the point where I can understand Stockholm Syndrome which is where a hostage or captive develops a bond with their captor. For many years I’ve been held in the grips by Duchenne muscular dystrophy and I’m not implying that I have any fondness for the disorder, the opposite is more accurate. More simply said, it is when you become accustomed to doing things a certain way or are adjusted to a particular ‘normal’ any change in your life or routine is…Continue
This is the week I am supposed to rest, relax and store up a bit of glycogen. That formula is in every runner’s training plan along with the advice to load up on carbohydrates and I should follow that advice. Sunday I run the Disney Marathon along with other families and friends participating in this race as well…Continue
Sunday afternoons were special to me as a young boy. Time moved slowly and the only limits were the ends of my imagination fueled by the most recent western I was watching. The good guys wore white hats and men protected women and children from attacks by circling covered wagons. I miss the simplicity of a child’s world and the certainty of solutions that came by following a specific formula.
Like all kids, I wanted to grow up quickly, failing to realize what I had to give up…
1997 may not seem so long ago, but at times it feels like half a lifetime to me. That was the year my family learned Matthew’s motor difficulties were something physical therapy could not correct and the first time we heard the word Duchenne. Everyone’s world changes after diagnosis of a devastating chronic illness and…Continue
When I was young, I remember my parents saying that “ignorance is bliss”. I never liked that expression and it has become more relevant for me when I speak with parents who have children affected by Duchenne muscular dystrophy who are trying to navigate educational or health care systems. Parents are often…Continue