Columns

As we approach Rare Disease Day on Feb. 28, I find myself reflecting on the journey of my wife, Jill, with Huntington’s disease (HD) and the struggles that families affected by genetic conditions face. One issue I’m focused on is a critical gap in healthcare policy that continues to…

The Huntington’s disease (HD) community is a family bound together by shared experiences, mutual understanding, and unbreakable ties of support. Within this family, certain individuals shine in ways that leave an indelible mark on our hearts. My dear friend Roy Nierenberg was one of those bright lights — an…

For Valentine’s Day each year, I write my wife, Jill, something romantic. It’s my way of expressing the depth of my love for her as she battles Huntington’s disease, an inherited neurodegenerative terminal illness. Each of the columns, which often are in the form of a play, has been…

For as long as I can remember, the Lunar New Year has held a special place in my heart. Every year since 2008, I’ve made it a tradition to celebrate the occasion with a meal at one of the most authentic Chinese restaurants in my town. This year was no…

When I met my wife, Jill, I had a different view of healthcare than I do now. Since she learned she was gene positive with Huntington’s disease in 2018, I’ve been forced to look at healthcare through Jill’s eyes. We’ve gone to countless doctor appointments together, where I’ve witnessed…

Anger is a powerful emotion that many people living with Huntington’s disease face regularly. This neurodegenerative disease causes changes in the brain, often leading to mood swings, irritability, and, for some, aggressive behavior. These emotional shifts aren’t a reflection of our character, but a byproduct of how the disease…

One of the many issues my wife, Jill, faces as she battles Huntington’s disease (HD) is dealing with mental healthcare providers who treat HD patients by the book. Here’s what I mean: They follow a very specific, rigid protocol that makes her feel like she’s not being seen as an…

In a world buzzing with notifications, tight schedules, and endless to-do lists, finding a sense of calm might feel like a distant dream. Being symptomatic with Huntington’s disease is especially challenging when I’m trying to balance my life. Despite having Huntington’s, I’ve adopted the following techniques to help center…

Healthcare for those with Huntington’s disease comes with complexities that often require a collaborative approach. Over the years, I’ve learned the value of being proactive on this journey by asking key questions to ensure that my providers and I are aligned. These questions not only help me understand my…

When I first read about a recent study from the University of Iowa, which showed that a common heart drug may slow the progression of Huntington’s disease, my heart skipped a beat. My wife, Jill, battles Huntington’s, which has been our family’s greatest challenge — mainly because there’s been so little…