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…
Columns
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…
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…
Recent Posts
- What a compassionate reset looks like in life with Huntington’s
- Ingrezza engages with therapeutic target more strongly than Austedo
- Anticipation of a possible new clinical trial has us holding on to hope
- What caregiver burnout is really about — and what you can do about it
- Oral Huntington’s treatment aims to slow disease progression
- Accepting help from my loved one with HD is a lesson in partnershipÂ
- Understanding how Huntington’s disease affects my cognition
- Guest Voice: We hold onto hope while fighting for new treatments
- Top 5 Huntington’s disease news stories of 2025
- Another year means treasuring more moments of shared joy