Columns

Many times over the years since the 1989 car crash that nearly killed me, I’ve been asked if I had any near-death or out-of-body experiences while I hung between life and death. I always try to clarify what people mean by these terms. If we’re talking about my spirit…

In August 1985, I was diagnosed with Becker muscular dystrophy. At that time, there was no genetic test for the disease, nor DNA sequencing of the blood. Instead, I underwent a muscle biopsy on my left thigh and calf, the tissue was sent for pathology, and the medical…

The Christmas decorations are down and tucked into storage for another year. The house is clean, the counters are clear of the holiday sweets, and our routine is again in sync. However, this holiday season has left lingering fears and sadness quivering in my heart. I share seven children with…

A few days ago, I watched the Netflix documentary “The Remarkable Life of Ibelin.” I wasn’t prepared for how deeply it would move me. The film follows Mats Steen, a young man from Norway who lived with Duchenne muscular dystrophy (DMD). Online, he was known by the avatar…

Occasionally I struggle to find a topic to write about in my weekly column. I had that experience before writing this one, so I asked my husband, Jason, what I should write about. He jokingly said, “Husbands!” At first, I laughed with him, but I quickly realized it was…

In the past 12 months, our oldest daughter got married, our oldest son moved across town into a college dorm, another son started his final year of high school, and, most significantly, I returned to full-time work outside the home. Life is drastically different for our family than it was…

Facioscapulohumeral muscular dystrophy (FSHD) primarily affects muscles in the face, scapular region, and upper arms, hence the name. Progression is different for everybody, but the condition can eventually affect most, if not all, muscles in the body. As an additional “bonus,” FSHD also can cause nerve deafness, a condition…

Since I began writing for Bionews, the parent company of Muscular Dystrophy News Today, I’ve connected with many people living with chronic illness outside of my “comfort community” — those with forms of muscular dystrophy (MD). While I live with limb-girdle MD, I have many friends…

This patient advocate's journey is full of emotional highs and lows as she navigates raising three sons with Duchenne muscular dystrophy. Despite the uncertainty, every victory, no matter how small, is a celebration of resilience and hope.

Living with Duchenne muscular dystrophy (DMD) has involved a series of challenges and triumphs, each shaping the person I am today. As 2025 approaches, I’m reflecting on that journey as well as imagining the path ahead — especially since the coming year includes a significant milestone for me. I’ll…