Columns

Welcome back to “Hidden Truths,” a column that seeks to offer an honest look at living with a neuromuscular disease. I not only like to present my own experiences, but also to challenge others to examine themselves and think outside the box. I believe that by questioning and searching for…

I have shared many times in this column that I have three sons with Duchenne muscular dystrophy. People sometimes think I’m an expert on the subject. But the truth is that my boys are unique, and Duchenne has affected each of them differently. Their disease progression and weakening muscles…

Sir Isaac Newton’s third law of motion states that for every action on an object there is an equal and opposite reaction. In 1686, his law was groundbreaking, but in 2021, we take its simplicity for granted. There is a consequence for every action taken. When a bullet discharges…

On a Facebook page that documents our family’s journey with Duchenne muscular dystrophy, I recently posted about how invitations to birthday parties and friends’ houses are not typical for my three boys with Duchenne, especially with them using chairs full time. However, the post celebrated the fact that my…

Over the past few weeks, several people have asked me how I can be in a good mood nearly all the time when so many issues surround me. So, this week, I want to elaborate on my thought processes, and try to explain positive thinking, why I am the way…

I think all moms need strong shoulders and extra arms. We carry purses, diaper bags, backpacks, and discarded jackets. Duchenne moms carry more, including sometimes our kids and their equipment, although I’ll admit that power wheelchairs are great for carrying bags without tipping over, unlike manual chairs and strollers.

As my Duchenne muscular dystrophy has progressed, it’s become untenable for me to live on my own without outside help. We’ve begun seeking professional caregiving assistance while my parents are away on vacation or work trips. It’s nothing major — mainly help with cooking, cleaning, getting into and out…

I have a decorative sign hanging on a wall that says, “Life starts all over again when it gets crisp in the fall.” The fall reminds me that we need to begin to prepare for school. Every fall, my husband, Jason, and I attend individualized education program (IEP) meetings…

Welcome back to “Hidden Truths.” Over the past two weeks, I’ve had several meaningful discussions about what it means to have a neuromuscular disorder. Accordingly, this week I wanted to get a bit more personal and answer a question brought up by a friend: “How did it feel growing…

Three of my boys were diagnosed with Duchenne muscular dystrophy when they were small. We’ve spent many years preparing to be caregivers for them as adults with Duchenne. We remodeled our home, added ramps to the front and back of our house, and upgraded to a wheelchair-accessible van. The…