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There is something unsettling about living with a disease that people seem to take more seriously when you are struggling than when you are doing well. I have lived with Huntington’s disease (HD) for more than a decade. During that time, I have learned how to manage my…

My wife, Jill, who is gene-positive with Huntington’s disease (HD), and I often talk about what we owe the future stewards of the healthcare system. It weighs on us as a family affected by a rare disease. When you spend a lot of time in doctors’ offices and waiting…

There is something powerful about standing in a room and telling the truth about what it means to live with Huntington’s disease (HD). Every time I share my story, I am reminded that advocacy is not just about speaking. It is about being seen, making space, and helping change…

My wife, Jill, who is gene-positive with Huntington’s disease (HD), told me recently that she has to “pump herself up” to do almost anything now. It’s not just the big things, like medical appointments or social events, but also the simple, ordinary tasks that most people move through without…

Airports can bring out some of my most challenging Huntington’s disease symptoms. The noise, crowds, bright lights, rushing travelers, long security lines, changing gates, overhead announcements, and uncertainty can quickly become overwhelming. What looks like an ordinary travel day to someone else can feel like my nervous system is…

My wife, Jill, talks about the future more than she used to. It’s not a conversation about vacations and retirement plans, but a quieter, heavier one that comes with being gene-positive for Huntington’s disease. Recently, she looked at me across our kitchen table and asked, “At what point does…

Living with Huntington’s disease (HD) has changed the way I think about the future. Before it became part of my life, planning ahead meant the usual things: career goals, travel, relationships, finances, and the kind of life I wanted to build. Now, future planning carries another layer. There are…

My wife, Jill, who is gene-positive with Huntington’s disease (HD), can be waiting in line at a grocery store, sitting on a park bench, or picking up a prescription, and the person next to her will start confessing something they’ve never said out loud before. They might talk about…

Living with Huntington’s disease has taught me many things, but one of the most important lessons has been learning how to stay present. When you live with a progressive illness, it’s easy for your mind to travel into a future that hasn’t happened yet. I call it “future tripping.”…

The first time I realized our kitchen had become a kind of care unit, I was standing by the sink watching my wife, Jill, pour iced tea. It was a quiet morning, the kind we used to move through without thinking. She reached for the pitcher, and her hand made…