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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…

Some experiences stay with you long after you return home, and my recent trip to New Orleans for advocacy work was one of them. I arrived expecting to share my story, learn more about Huntington’s disease (HD), and connect with members of the HD community. What I experienced was…

Years ago, my wife, Jill, was at a party talking with a friend. The conversation turned personal, and her friend asked a difficult question. It was the kind of question people sometimes ask when they want to be reassured but are afraid to hear what someone who knows them well…

Living with Huntington’s disease (HD) has taught me a great deal about healthcare, both the kind that makes you feel supported and the kind that leaves you questioning whether you were truly heard. As a Black woman living with HD, I have learned that being believed is not always…

My wife, Jill, who is gene-positive with Huntington’s disease (HD), has always believed that if something matters to you, you should pay attention to the people in charge of it. Lately, that has meant watching U.S. lawmakers much more closely. As someone living with a rare disease, she sees…

There are moments when looking at my mother feels like looking into a future I am trying very hard not to fear. My mother lives in a nursing home now. She is unable to walk, wears adult undergarments, and depends on others for many of her daily needs. I am…

For families affected by Huntington’s disease, some courtroom trials — especially those involving a defendant’s deteriorating mental health — are impossible to watch without feeling the weight of the tragedy at their center. The recent Lindsay Clancy trial is one example. Clancy was a nurse from Massachusetts whose…