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…
A Family Tradition - a Column by Carlos Briceño
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…
Columns
Facing the Pain of Dying Younger
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…
Columns
Caregiving Is a Marathon
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…
My wife is extremely low maintenance. For instance, she’s allergic to chocolate and flowers, so she doesn’t want either for Valentine’s Day. Even if she weren’t allergic, she still wouldn’t want them because she believes Valentine’s Day is a manufactured holiday. So we essentially don’t acknowledge it. (However,…
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