Columns

Sleep has lately been a great concern for my wife, Jill, and me. After she recently had a meltdown about realizing she’s going to die young — sadly, Jill is gene-positive for Huntington’s disease (HD) — she realized her sleep patterns were atrocious, as she’d been getting only…

Because my wife, Jill, and I live less than half an hour away from Washington, D.C., commonly listed as one of the 10 most visited cities in the United States, we like to play tourist and visit the nation’s capital on weekends as often as we can. The last time…

In my previous column, I wrote about the need for new genetic testing options for people at risk for Huntington’s disease (HD), and teased a new passion project I’ve been working on. I’m excited to share a bit more about my endeavor in hopes of helping the HD…

Recently, a reader of this column posted a comment that touched me. It also reminded me how precarious the caregiving journey can be and how important it is to learn as much as possible about Huntington’s disease (HD). Since my wife, Jill, was diagnosed as gene-positive for HD in…

Twenty minutes. I was leaving work 20 minutes later than planned, which meant I would be late to pick up my wife, Jill, at home. We had dinner plans that evening with friends, and I knew she would be a nervous wreck by the time I arrived. Being late…

I started doing a lot of research about genetic testing for Huntington’s disease (HD) in 2019, after years of hearing stories from people in the community who’d had poor experiences. I came to the conclusion about a year into my research that if I didn’t try do something about…

Last in a series. Read part one. At the top of the list of why I can’t stand Huntington’s disease (HD) is the fact that my beloved wife, Jill, and daughter, Alexus, have it and, as a result, are going to suffer greatly. Another reason is that…

First in a two-part series. Something astounding happened recently. My wife, Jill, found someone who knows more about Huntington’s disease (HD) than she does. Because her father was gene-positive for HD, Jill saw firsthand what the disease does to a person. Many people on his side of…

As I’ve shared in previous columns, several Huntington’s disease (HD) advocates, including myself, were granted a patient listening session with the U.S. Food and Drug Administration (FDA), focused on people who are gene-positive for HD but have not yet developed symptoms. In preparation for the session, which took…

Recently, I was discussing the meaning of marriage with a young couple, who told me they heard marriage can be defined three different ways: One is where both people say, “I do.” The second way is, “I do … do I?” And the third is, “I do — until I…