Columns

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…

My wife, Jill, and I recently went to Target to shop for new baskets. The trip reminded us of when we helped our daughter move earlier this year, and how that trip helped us to see each other more clearly, which sits at the heart of how we live with…

When I first heard about the devastating earthquakes that happened in Venezuela on June 24, my heart immediately went out to the families trying to survive the aftermath. I thought about the fear, the confusion, the loss, and the uncertainty that come after such an unimaginable disaster. I also…

The recent news that UniQure plans to ask the U.S Food and Drug Administration for accelerated approval of the experimental gene therapy AMT-130 to treat Huntington’s disease (HD) in the next few months caused my wife, Jill, to admit something that startled me.  Jill,…

Living with Huntington’s disease (HD) can sometimes feel like carrying a weight that other people cannot see or fully understand. HD affects movement, thinking, emotions, communication, and independence. The symptoms can change from one day to the next, which makes it difficult to predict what kind of support a…

My wife, Jill, has has been watching a lot of “lawtube” videos on YouTube lately. She likes tracking court-related cases as a way to slow the decline from Huntington’s disease (HD). The cases, and anything relating to legal issues, hold her attention. It’s part of her growing bag of…

Traveling with Huntington’s disease requires more than packing a suitcase. It requires planning, patience, self-advocacy, and a deep understanding of my body. I love the idea of seeing new places, speaking at events, visiting loved ones, and saying yes to meaningful opportunities, but traveling while symptomatic means I…