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…
A Family Tradition - a Column by Carlos Briceño
I never met Dolly Parton, but like millions of others, I felt like I knew her. It’s easy to feel this way because of her music, laughter, generosity, the stories she told, and the remarkable way she seemed to make room for everyone. She was successful, wealthy, and larger than…
Imagine anger residing at one end of your home and autonomy at the other, with Huntington’s disease (HD) sitting right in the middle. Before my wife, Jill, found out eight years ago that she is gene-positive with HD, she could usually tell when she was becoming irritated. She…
My wife, Jill, who is gene-positive with Huntington’s disease, and I don’t usually associate Legos with cancer. Those are two worlds that feel like they belong on completely different shelves in life. Yet American households collectively owe at least $220 billion in medical debt, much of it tied…
My wife, Jill, was watching a show about survival the other night, the kind where people are pushed to their limits in the wilderness. When it ended, she turned it off and sat quietly for a moment. Then she said, almost to herself, “It’s wild how far people will go…
Disability benefits is one of those topics that my wife, Jill, and I never thought much about until Huntington’s disease forced it into the center of our lives. Before Jill was diagnosed as gene-positive in 2018, I vaguely pictured disability as something that happened to other people, a…
Years ago, our daughter, Alexus, asked where her favorite “coat to steal” was. She described one of my jackets. I pictured my closet and came up blank. “I don’t know what you’re talking about,” I said. She described it in detail: the color, the fabric, and how it hung on…
During a recent car ride, my wife, Jill, and I were listening to a podcast about healthcare, a topic I’ve become more familiar with in recent years. One comment surprised me: Many of the approximately 6o million Americans who live in rural areas don’t have access to basic healthcare due…
On a recent evening, my wife, Jill, who is gene-positive with Huntington’s disease, sat me down and said, “I need you to understand what happens in my head when I keep asking the same question.” When perseveration hits, it feels to her like a record needle that keeps…
My wife, Jill, and I recently went to Target to shop for new baskets. The trip reminded us of when we helped our daughter move earlier this year, and how that trip helped us to see each other more clearly, which sits at the heart of how we live with…
Recent Posts
- Early myelin protein loss may precede nerve fiber damage in Huntington’s
- What Huntington’s disease families can take away from the Lindsay Clancy trial
- Disclosure of my Huntington’s disease is not a confession
- Developer now seeking approval of Huntington’s gene therapy in US, UK
- The most important life lessons that Dolly Parton taught families like ours