Why each stage of DMD progression is uniquely challenging

“The stages of Duchenne.” I remember seeing this heading on many of the websites I obsessively read when I learned that my three sons, Max, 18, Rowen, 14, and Charlie, 12, had Duchenne muscular dystrophy (DMD).

The stages of Duchenne are like a timeline of disease progression. Parent Project Muscular Dystrophy (PPMD) describes five stages of DMD: “Diagnosis (infancy/childhood), early ambulatory (childhood), late ambulatory (late childhood/adolescent/young adult), early non-ambulatory (adolescent/young adult), and late non-ambulatory (adult).”

I recently spent time on Zoom with parents whose children cover all the stages of DMD. As I listened to them, I was tempted to think that things are easy for those in the early stages of the disease. But then I remembered my own feelings when my boys were going through those times.

It prompted me to reflect on where we are now, as well as our journey to get here. I realized that every stage of the disease is challenging. When your children are in one of them, all you know is that it’s hard in its own way.

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Looking back

As a young mom with three newly diagnosed boys, every stage frightened me. At the time, I focused only on their current stage, which was diagnosis. I remember not wanting to be around older boys with Duchenne because it was terrifying to think that someday, like them, my three sons would need a wheelchair and other medical equipment.

I didn’t allow myself to think about what the next stages would look like. It took me three years to feel strong enough to attend the PPMD annual conference, where I’d meet other parents — and boys and young men living with Duchenne.

DMD is relentless. The next stages of the disease have been arriving for my boys, and I’ve found parts of each one difficult.

For us, the early ambulatory stage was lighter than the diagnosis stage, because the boys were still mobile and able to do things. I was aware that it wouldn’t last forever, but it gave our family the courage to try new things, such as homeschooling for a year and taking the boys to walk in the ocean.

Yet while that stage offered blessings, it also brought fear and dread of what lay ahead. It felt like a race against time as I tried to give them everything I could before certain activities became impossible.

The late ambulatory stage brought months of knowing that my sons would eventually grow weaker and be unable to walk. I was constantly scared that my oldest son would fall, so we tried to prepare by making our home wheelchair-accessible. We went through similar things with my second son with DMD, and we’re now doing it with my third son with the disease.

Two of my sons — Max and Rowen — are now nonambulatory, which is the most physically demanding stage. I’m tired. Everything I do requires multiple steps and lots of planning. We’re slow and need help to be on time anywhere we go. There’s no spontaneity in our lives. Getting the boys out of bed, dressed, and fed, giving them their medications, and getting them into our van require dozens of steps.

I watch the boys grow weaker and consistently ask me for help with new things. It hurts my heart to see how they must work to merely lift a drink to their mouths, and I wonder how much longer they’ll even be able to do that by themselves.

As Max enters the adult stage of the disease, we celebrate his decision to attend college and live on campus next year. But I wonder how we’ll make it happen. I’m overwhelmed by the challenges we’ll face.

We’re learning to include him in the management of his healthcare, because he’s now an adult. But his arrival at adulthood is also a reason to rejoice. Not everyone is so blessed.

Each phase of DMD is difficult. My heart aches for everyone in this community. None of us wanted to learn about Duchenne, but one thing we all have in common is an intimate knowledge of the disease and everything it entails. Each family will find its way through the challenges and discover reasons to celebrate.

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.