A Family Tradition - a Column by Carlos Briceño

vote, white coat syndrome, protective, show, details, unexpected, party on, choose, outside the box

Carlos is a journalist in the Midwest, who through the grace of God has been blessed with a brilliant, beautiful, and courageous wife and daughter. His wife found out she was gene-positive for Huntington’s Disease (HD) at the age of 41, while his daughter found out she was gene-positive for HD when she was 22. Carlos’s aim in writing column is to offer a caregiver’s perspective while also trying to inspire those families who are dealing with Huntington’s. He loves to evangelize, read, play soccer, and share — according to family members —really bad puns. (For the record, Carlos thinks his puns are really punny and funderful.)

How Are You Spending Your Dash?

Years ago, my wife, Jill, changed her approach to life. As she tells the story, she went from being an angry young woman to appreciating every second she spends on this earth. She was diagnosed with Huntington’s disease in 2018, but her transformation started years earlier. Jill had our…

On Rare Disease Day, Our Communities Unite as One

Whenever I share that my wife and daughter are both gene-positive for Huntington’s disease (HD), I usually have to explain what the terminal illness is — “Imagine combining Alzheimer’s, Parkinson’s, and ALS in one disease” — and what will happen to them if a cure isn’t found in…

Encouraging Difficult Conversations About Huntington’s Disease

Earlier this month, my wife and daughter, Jill and Alexus, respectively, participated in a panel discussion about Huntington’s disease (HD). The topic was difficult conversations. Jill and Alexus are both gene-positive for HD, but they each had different reasons for accepting the invitation to participate. Alexus said, “I love talking…

A Punny Valentine’s Day Play for My Honey

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…

Horror Films, Huntington’s, and Bad Luck

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…

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…