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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…

Mornings with Huntington’s disease can feel unpredictable. Some days I wake up with energy and clarity. Other days, fatigue or chorea greets me before I even reach for the light switch. There was a time when these inconsistencies left me feeling defeated before the day began. But over time,…

“Isn’t it ironic, don’t you think?” my wife, Jill, asked, quoting Alanis Morissette, her favorite singer. “Everywhere you look, people are talking about medications like Ozempic and Wegovy to help with weight loss, while the Huntington’s disease community is desperately trying to keep weight on our loved ones.” Jill and…