Columns

For the past two years, in honor of Valentine’s Day, I have written a love letter in this space to my wife, Jill, who has Huntington’s disease. This year, instead of a Valentine’s Day letter, I’ve decided to write her a love play. It goes like this: [Carlos makes a…

My daughter, Alexus, recently spent about a month with my wife, Jill, and me, and the more time she visits with us, the sadder we get when she leaves. The weekend that she left, Jill and I moped. To divert our attention, we decided to go to a movie…

Two weekends ago, my wife, Jill, and I said goodbye to our daughter, Alexus, son-in-law, René, and their cats as they headed back home to Boston. Because remote work is now common during the pandemic, Alexus and her husband were able to spend December and early January with us…

It’s not often that I see my wife, Jill, cry. She says crying makes her feel worse. As a result, she doesn’t stay sad for long and rarely sheds tears. She’s able to compartmentalize her emotions, and is usually levelheaded and pragmatic when talking about them. When the doctor delivered…

Family has always been important to my wife, Jill. However, she wouldn’t plan many trips due to concerns about travel costs. Jill’s attitude shifted after she tested positive for Huntington’s disease in 2018. She saw every long holiday weekend as an opportunity to visit our loved ones. Because our…

In many previous columns, I’ve shared the statistic that only about 10% of those at risk for Huntington’s disease (HD) have chosen to get predictive genetic testing. This is a brave decision for the few in this small slice of the HD pie, considering that there aren’t…

I tend to be more grateful these days than I used to be, and to help you understand why, I’ll share a little story. I’ll also list several reasons why I’ve been particularly grateful lately. On Christmas Eve, I had to be at work at 10:30 p.m. to shoot photos…

Happy New Year! Now that 2021 is in the rearview mirror, I have a simple wish for 2022: a cure for Huntington’s disease, which my wife and daughter are gene-positive for. As much as I hope for that, I also spend a lot of time thinking about taking…

Since my wife, Jill, was diagnosed with Huntington’s disease (HD) in 2018, she’s been concerned about something that plagued her father for a long time before he died from the same condition: weight loss. Jill’s father was in good health when he was diagnosed with HD, but during his…

I traveled last month to the University of Wisconsin-Madison to participate in an observational research study called PREVENT-HD. I’ve written about the importance of participating in trials, and the purpose of the PREVENT-HD study is to develop tools to find and track subtle, but measurable, changes in behavioral,…