Columns

My wife, Jill, who’s gene-positive for Huntington’s disease, has for months been riveted by the murder trial of Karen Read, a Massachusetts woman accused of killing her boyfriend, a Boston police officer, in 2022. Last month, a jury found Read not guilty of second-degree murder and manslaughter…

When people find out I have Huntington’s disease, there’s often a long pause, followed by a look I’ve come to recognize all too well: pity. Their eyebrows crease. Their voices drop an octave. They fumble for comforting words that often make me feel anything but comforted: “I’m so sorry.”…

Whenever there’s another failed clinical trial for Huntington’s disease, my wife, Jill, who is gene-positive, and I always try to find a silver lining. With each year that passes, doing that becomes more difficult. Last fall, after another trial failed, Jill said to me: “Sometimes it’s due to…

Kasia Rothenberg, MD, PhD, is my neuropsychiatrist and one of the most compassionate, skilled providers I’ve had on my care team since being diagnosed with Huntington’s disease (HD). I am proud to share her wisdom with the broader Huntington’s community in this special interview. Rothenberg is the co-director…

For those of us living with Huntington’s disease, the idea of calm can sometimes feel like a distant dream. Between the unpredictable nature of our symptoms, the emotional toll of navigating a complex diagnosis, and the misunderstandings we often face from the outside world, finding even a moment of…

Huntington’s disease is not the only trait my wife, Jill, inherited from her father. Her sense of humor, justice, and fortitude, while not genetic, was shaped by him as well. Recently, I realized that what we use for comic relief could be a way to advocate for people with…

When you live with Huntington’s disease, your world begins to shift in ways you never imagined. Things that once felt routine, such as tying your shoes, remembering appointments, or going for a walk, can suddenly feel like climbing a mountain. For many of us in the Huntington’s community, these…

If you ever met my wife, Jill, you’d know she has a handful of guidelines that she lives by — quirky, heartfelt philosophies that influence her approach to life. One of my favorites is her unofficial family motto: “Live like you’re a tourist.” It’s a phrase she uses to explain an idea…

One of the most common questions I hear as someone living with Huntington’s disease (HD) is, “Where do you get your medical care?” I always smile and say, “At the Huntington’s Disease Society of America Center of Excellence at the Cleveland Clinic,” because I’m genuinely grateful to be under…

Social worker Jessica Marsolek is the associate director of community services for the Huntington’s Disease Society of America (HDSA). My wife, Jill, who is gene-positive for Huntington’s disease (HD), and I met Jessica several years ago at an HDSA-sponsored online support group and were impressed by her…