In ‘Muscle Memoirs,’ I’ll share tales of life with LGMD

Muscular dystrophy entered my life in the fall of 1984. I was 11 years old and beginning my sixth year of school. Along with neighborhood friends, I would walk to and from my elementary school every day. That September, I remember feeling very tired on the short walk down the hill, as well as a burning sensation in my legs. Little did I know then that these were the first outward symptoms of the condition that would eventually change and, at times, define my life.

About a year later, several doctors and a muscle biopsy determined that my muscle tissue was abnormal. My parents and I were given the news: I had Becker muscular dystrophy. In 1985, the science for detecting this disease wasn’t as precise as it is today, so much later in life, I would be diagnosed again, this time with limb-girdle muscular dystrophy (LGMD), but that’s for another column.

As you read more of my columns and get to know me, I’ll share some of my personal life hacks, as well as humorous tales of living with LGMD. I’ll also discuss other topics, like coping methods, my love for music and travel, my advocacy work, and some serious entanglements I’ve had while attempting to live my best life.

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Speaking of my best life, I’m a married father of two boys, ages 8 and 10, who brighten my days with laughter and their passion for living. At their ages, they’re a good reminder to us grown-ups that our world is full of wonderful things to discover, explore, and learn about. As a parent who lives with LGMD, my perspective is unique in that I am able to teach my boys about disability being a normal part of their lives although they do not have the condition.

Both of my sons have learned compassion, empathy, patience, and a willingness to be flexible when there are things “Dad can’t do.” They are growing up learning that life with a power wheelchair user in the house as their male role model is “normal,” and it is my hope that when they reach adulthood, they’ll lack the prejudices that many of us who are living with chronic illness tend to see in other adults from time to time.

In addition to being a disabled dad, I’m also a motivational speaker, musician, teacher, and writer (duh!). I recently retired from teaching middle school band and music at a New Hampshire public school. There, I had the opportunity to share my love of music with thousands of kids, spanning a career that lasted almost 30 years. I am a drummer and composer, as well as a lover of classic rock, funk, and jazz. Give me a solid drum and bass groove and I’m a happy guy.

I’m also a lover of books, travel, and all kinds of good food. I’ve been fortunate enough to visit most of the United States, and take several trips “across the pond” with my wife, where I’ve spoken about disability, advocacy, and the importance of having a solid support system in order to achieve goals. While traveling, we’ve expanded our knowledge as foodies by sampling cuisine in Italy, Spain, and other countries.

I am honored to join so many talented writers that make up the heart of Bionews, the parent company of this website. Here’s hoping that our loyal readers will welcome my voice to educate, inform, and motivate the masses, while having some laughs along the way. Let’s do this!

Note: Muscular Dystrophy News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.