Columns

Sometimes Love Means Letting Go

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…

‘Never Apologize for Showing Feeling’

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…

Accepting Huntington’s Means Letting Go of the Wheel

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…

Things I’m Grateful For

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…

Even Caregivers Need Help Sometimes

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…

The Importance of a Spinal Tap in HD Research

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,…

Valbenazine Eases Chorea in Trial; FDA Submission Expected Next Year

Treatment with valbenazine significantly lessened chorea — a motor symptom characterized by jerky, unpredictable, and involuntary movements — in people with Huntington’s disease in the Phase 3 clinical trial KINECT-HD, according to an announcement from the therapy’s developer, Neurocrine Biosciences. Neurocrine now is planning to submit an…