Columns

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…

I thought I understood the highs and lows that come with Huntington’s disease, including the unfiltered comments and raw emotions my wife, Jill, sometimes shares with me. I have seen her frustration, her dark humor, and her moments of deep sadness. But nothing prepared me for what it feels…

Fear. Everyone has it. Everyone has that something they’re afraid of. I have many — of heights, of what tomorrow holds, all of it. But when you’re in a Huntington’s disease (HD) family, fear feels amplified. Ever since we got my husband Nathan’s HD diagnosis 10 years ago,…

One of the hardest parts of living with Huntington’s disease (HD) is realizing that the disease does not only affect movement. It can also affect emotions, reactions, patience, and the way the brain processes stress. Many people see HD through chorea, balance changes, or visible symptoms. But some of…

Huntington’s disease has changed so much about our life, especially for my wife, Jill. Her balance isn’t what it used to be, and falls are a real concern. In a house where stability is fragile, a small creature racing around our feet sounds like the last thing we should invite…