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My wife, Jill, was watching a show about survival the other night, the kind where people are pushed to their limits in the wilderness. When it ended, she turned it off and sat quietly for a moment. Then she said, almost to herself, “It’s wild how far people will go…

Attending the 2026 Huntington’s Disease Society of America (HDSA) Convention in late June in Phoenix, Arizona, gave me the opportunity to meet professionals working to improve care for people affected by Huntington’s disease (HD). One of those professionals was Elizabeth Ferluga, MD, director of movement disorders at the telehealth…

Disability benefits is one of those topics that my wife, Jill, and I never thought much about until Huntington’s disease forced it into the center of our lives. Before Jill was diagnosed as gene-positive in 2018, I vaguely pictured disability as something that happened to other people, a…

My journey with invisible muscle movements known as chorea began in 2010, before I knew that Huntington’s disease was part of my story. It started with subtle, writhing movements in my toes. At first, the movements seemed small and easy to dismiss. I didn’t understand why they were happening,…

Years ago, our daughter, Alexus, asked where her favorite “coat to steal” was. She described one of my jackets. I pictured my closet and came up blank. “I don’t know what you’re talking about,” I said. She described it in detail: the color, the fabric, and how it hung on…

Sleep is supposed to restore the body and mind, but living with Huntington’s disease (HD) can make getting a peaceful night of rest more complicated. HD doesn’t stop affecting me simply because I get into bed. Involuntary movements, restlessness, anxiety, racing thoughts, medication effects, and changes within the…

During a recent car ride, my wife, Jill, and I were listening to a podcast about healthcare, a topic I’ve become more familiar with in recent years. One comment surprised me: Many of the approximately 6o million Americans who live in rural areas don’t have access to basic healthcare due…

Planning for the future while living with Huntington’s disease (HD) requires me to hold two truths at the same time. I understand that HD is progressive, and that my needs may change. I also believe that my future can still contain purpose, joy, growth, relationships, and meaningful work. Hope…

On a recent evening, my wife, Jill, who is gene-positive with Huntington’s disease, sat me down and said, “I need you to understand what happens in my head when I keep asking the same question.” When perseveration hits, it feels to her like a record needle that keeps…

Fatigue is one of those symptoms of Huntington’s disease (HD) that people may not see or fully understand. When someone looks at me, they may assume that because I am walking, talking, writing, traveling, or speaking publicly, I must feel fine. What they do not see is the amount…