Columns

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…

The holidays have a way of magnifying everything: joy, grief, gratitude, exhaustion, hope, and the quiet ache of what we wish life still looked like. For most people, this time of year is about traditions, gatherings, and the excitement of closing one year and welcoming another. But for those of…

My wife, Jill, and I are what you might call the walking wounded these days. My elbow had been swollen and sore for weeks due to bursitis, although I kept telling myself it would get better. It didn’t, until I went to the doctor and got some anti-inflammatory medicine. Jill’s…

Preparing for future care is one of the most intimate, emotional undertakings of the Huntington’s disease (HD) journey. It requires looking ahead to a time we may not feel ready to imagine, while still holding on to the life we’re living now. But no one prepares for this alone.

A couple months ago, my wife, Jill, and I were delighted to attend the wedding of one of our daughter’s closest college friends. Over the years, our daughter, Alexus — or Lexi, as we call her — has introduced us to some of the remarkable friends she made at the…