Columns

Recently, my wife, Jill, who is gene-positive for Huntington’s disease (HD), took a trip to Boston to participate in an observational HD study. She had been looking forward to it in part because she’d be able to visit her brother and his family and stay at our daughter‘s…

Tiny moments. Life is full of them. For instance: I was not expecting the phone call. My wife, Jill, always texts me when she wakes up. She never calls. But during a recent morning, my cellphone rang while I was at work, and when I picked up, I saw…

Ever since my mom was diagnosed with Huntington’s disease (HD) in 1995, I’ve been attending all types of support, fundraising, and educational events. I’ve had the honor of traveling the world and meeting people from many countries who’ve been affected by HD. When I was young, my parents…

My wife, Jill, and I selected “A Family Tradition” as the name of this column because of the genetic nature of Huntington’s disease (HD). If someone has the HD gene mutation, their children have a 50% chance of inheriting the disease. It’s a tradition that no one…

Second in a series. Read part one. As my wife, Jill, experiences Huntington’s disease (HD) progression, we must prepare for all aspects of her care. Recently, she wanted to start thinking about our financial future. She knows that HD can be a financial burden, as the rare…

First in a series. My wife, Jill, who was diagnosed with Huntington’s disease (HD) in 2018, doesn’t like to think about what’s in store for her. She knows her illness will progress in cruel ways, so she prefers to live in the present moment. But recently,…

Help4HD is a nonprofit organization with a mission to educate the world about Huntington’s disease (HD) and juvenile Huntington’s disease. Its aim is to serve our community and provide information, education, and resources. Help4HD hosted its annual family symposium in Nashville, Tennessee, October 7-8, and it was…

One of the supervillains from my childhood was Mr. Freeze, who was featured in DC Comics and the 1960s “Batman” television series. For years, I associated the word “freeze” with negative connotations because Mr. Freeze was such an evil character. Nowadays, “freeze” is a word I’m grateful for…

Thinking about death isn’t pleasant, and neither is talking about it. But my wife, Jill, who is gene-positive for Huntington’s disease (HD), asked me to write about the topic. In particular, she wanted me to discuss the importance of making a living will. Being proactive in this manner…

The pharmaceutical company Teva is turning to social media to help people with Huntington’s disease (HD) to improve the management of chorea — a hallmark motor symptom that an estimated 90% of patients with the neurodegenerative disorder will develop. The company, fully Teva Pharmaceutical Industries, has established…