February has a quiet way of exposing what the holidays can hide. In December, people check in. They send the “thinking of you” texts. They ask how you’re holding up. Even the people who don’t know what to say still make an effort to say something, because the season almost…
Columns
Breaking news: We have a new dog. He’s a puppy. His name is Dexter, and he’s perfect. He’s perfect at eating little things that have accumulated on the floor of our home, such as dust balls, little scraps of paper, and tiny pieces of food. He’s perfect at walking so…
Anger is one of the most misunderstood and quickly judged symptoms of Huntington’s disease. When people hear the word “anger,” they often picture a personality flaw. They might assume it’s an attitude problem, a character issue, or a choice. Rarely do they consider neurodegeneration or other shifts…
Before her Huntington’s disease (HD) diagnosis, my wife, Jill, worked with children between the ages of 5 and 15. Every afternoon, when she came home, she carried stories about the little dramas that had unfolded at school that day. There was always something — a Lego taken without permission, an argument…
January is loud. It shows up with fireworks, fresh calendars, and the not-so-subtle message that you should reinvent yourself by Monday. There’s a whole culture built around before-and-after photos and big declarations, as if being human is a project you can complete with enough discipline. Living with Huntington’s disease…
Hope recently arrived at our house disguised as a press release. Years ago, my wife, Jill, who is gene-positive with Huntington’s disease (HD), tried to explain what it feels like to live with the emotional ups and downs of a rare disease. She said there are days when news…
There’s a moment many Huntington’s disease (HD) caregivers can describe with uncomfortable clarity: the day you realize you’re not just helping anymore — you’re holding everything together. At first, it looks like small adjustments. You drive to appointments. You repeat yourself a little more often. You quietly take over…
When my wife, Jill, recently offered to help me with work, my first instinct was to say no. As a communications director with no staff, I’m used to doing everything myself. However, there’s a price to pay, as a typical workweek is usually about 55 hours and filled with meetings…
People often associate Huntington’s disease (HD) with movement symptoms like chorea, fidgeting, and unsteadiness. But the truth is that many of the most life-altering symptoms of HD don’t occur in the muscles at all. They happen quietly inside the mind. And because these changes aren’t always visible, they’re…
Some families celebrate holidays and birthdays with cake and candles. Ours? We celebrate being alive with crowns, banners, and a little medieval pageantry. If you’ve read my earlier columns, you know my wife Jill’s “live like you’re a tourist” motto is more than just a saying; it’s the compass…