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Fatigue and sleep disruptions have been some of the most challenging aspects for me while living with Huntington’s disease. They creep in slowly, often unnoticed at first, until they begin to shape the rhythm of my daily life. Managing them has required a combination of self-awareness, adaptability, and a…

First in a series. Talking about mental health was taboo when I was younger. Thankfully, that has changed for me — especially at home. My wife, Jill, who is gene-positive for Huntington’s disease, knows that two of its symptoms, anxiety and depression, may require medication and talking to…

Every year, as March 17 approaches, the world turns a vibrant shade of green. People gather in pubs, clink glasses in celebration, and revel in the joy of St. Patrick’s Day. It’s a holiday known for its infectious energy, lively music, and, of course, flowing drinks. But for me, the…

If I ever need a short, concise way to describe something, I consult my wife, Jill. So when a friend asked Jill to describe some of the challenges she’s faced with Huntington’s disease, she began with one of its most devastating symptoms: the gradual loss of cognitive function. Jill shared…

As the snow melts and the first flowers bloom, I welcome spring as a season of renewal. For me, spring cleaning isn’t just about scrubbing floors and reorganizing closets; it’s about decluttering my mind, refreshing my body, and realigning my spirit. Living with Huntington’s disease means that every season…

Two weeks before Valentine’s Day, my wife, Jill, approached me with an unexpected request: “Let’s go away for Presidents Day weekend.” When I hesitated, citing work deadlines, her expression changed. “I’m feeling bad juju about being home,” she admitted quietly, a statement that immediately concerned me given her ongoing battle…

Tomorrow, Feb. 28, I’ll celebrate a milestone that once seemed impossible: my 50th birthday. This date is deeply meaningful and significant for me. Just a day away from a leap day, it has always been a reminder to me of life’s unpredictability. But there’s another, even deeper correlation: Feb. 28…

I recently learned something valuable: Not every item we buy is made to accommodate people with disabilities. This realization came with a mix of frustration and enlightenment, sparked by something as mundane — and essential — as a computer screen. My epiphany started when my wife‘s laptop broke, the…

Valentine’s Day is often associated with love, chocolates, and grand romantic gestures. But for me, this year, it became something much more profound — an unforgettable day of relief, gratitude, and the reaffirmation of hope. It was the day my nephew DeMarco Duhaney learned he was free from Huntington’s…

As we approach Rare Disease Day on Feb. 28, I find myself reflecting on the journey of my wife, Jill, with Huntington’s disease (HD) and the struggles that families affected by genetic conditions face. One issue I’m focused on is a critical gap in healthcare policy that continues to…