Columns

A recent weekend in North Carolina was nothing short of magical. I was invited by the nonprofit advocacy group HD Reach to be the keynote speaker for their annual Education Day. The theme this year — “HD Has Color” — couldn’t have been more perfect. It felt like an affirmation…

My wife, Jill, recently challenged a sentiment she hears far too often: that people with Huntington’s disease should feel “grateful” it’s a slow-moving condition, unlike amyotrophic lateral sclerosis (ALS). Her reaction struck a deep chord in me and revealed an important truth about how we view devastating rare and…

The sun filters through the trees, casting golden light onto the path ahead of me. The crisp morning air carries the scent of damp earth, and with each step, I feel more connected to the world around me. Nature has become more than just a backdrop to my life; it…

As my wife, Jill, and I sat at a sidewalk cafe, we basked in the warmth of the sun — a welcome feeling after what had felt like a lifetime of gloomy winter weather. Jill’s diagnosis of Huntington’s disease is an unwelcome companion in our lives, but it’s also…

Spring has always been my favorite season, not just because of the warmer weather or the return of blossoms, but because it’s a reminder that renewal is possible. No matter how harsh the winter has been, no matter how barren the trees may look, life still finds a way to…

As I entered our living room recently, I was met with a scene that caught me off guard. My wife, Jill, was sitting on the couch, tears streaming down her face while watching “The Masked Singer.” This wasn’t unusual in itself; she loves the show for its music…

When I received the invitation from Brown University’s School of Public Health to discuss my memoir, “We Exist,” I felt deeply honored. As an advocate for Huntington’s disease (HD) awareness, particularly from the perspective of a marginalized community, I knew this was an invaluable opportunity to engage with…

Last in a series. Read part one. In my last column, I wrote about mental health issues and shared some advice from Alexis Ryan, a psychiatric nurse practitioner that my wife, Jill, sees to help her cope with Huntington’s disease. In part two of the series, I inquired…

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…