A Family Tradition - a Column by Carlos Briceño

Emily Zivin is a licensed clinical social worker at Northwestern Memorial Hospital’s Movement Disorders Center in Chicago, one of the Huntington’s Disease Society of America’s Centers of Excellence. My wife, Jill, and I know her from Jill’s visits there. We find her to be effervescent, highly knowledgeable,…

Recently, our daughter, Alexus, came home for a weekend visit. It was wonderful, and the weather was perfect. We ate delicious food and had one big ball of fun. We are lucky to live in an area with many things to do. The weather has been so gray lately, but…

Because Feb. 29 is Rare Disease Day, I thought it would be a good idea to talk to my wife about what makes her so rare. Jill was diagnosed with Huntington’s disease in 2018. In the U.S., the number of people who have the disease is about…

Valentine’s Day, a holiday my wife doesn’t believe in, has come and gone. Jill sees the day as a manufactured holiday. She believes that every day should be like Valentine’s Day — in other words, you should show love every day to the ones you love. We don’t make grand…

As most of you know, my wife and daughter tested positive for Huntington’s disease. They have witnessed the brutality that Huntington’s can inflict, and they have every right to curl up in bed every day and cry. But they don’t. They get up and continue forward with what I…

I’m not a nurse or a social worker. In other words, I haven’t received formal training in caregiving from a college or a university. But I do feel that I’m prepared to do well as a caregiver because of the training I received as a child. I grew up in…

I saw a pig fly the other day. OK, that’s a lie. But it sure felt like one did because my wife, Jill, cried. It’s rare for her to cry. Crying makes her feel worse than whatever made her cry in the first place, so she tries to avoid it.

In this week’s column, I’d like to share a few details about a typical day for my wife, Jill. When the alarm sounds at 5:20 a.m., she wakes up and gets ready to go to work as a secretary in a small private school. Jill starts her workday by helping…

My mother-in-law, Edwina, visited us right before Christmas. I’m proud to say that I’m her favorite son-in-law. (That’s a family joke. I’m her only son-in-law.) Her husband, Ken, died from Huntington’s disease in 2011. During her visit, I asked her what it’s like to be a caregiver for someone you…

Patience doesn’t just happen. It takes work. Would you enter a weightlifting competition, run a marathon, or perform stand-up comedy without planning and practicing? You probably wouldn’t. So why do we expect ourselves just to be patient? When my wife, Jill, learned that she carries the Huntington’s gene, we started…