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.)

For HD Families, Survivor’s Guilt Is a Heavy Burden

As everyone who reads this column knows, Huntington’s disease (HD) is a devastating illness for those who test positive on a genetic test. But it can be equally terrible for family members who test negative. I’m referring to survivor’s guilt, which happens when someone feels guilty for surviving a…

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…