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.)
This week, my wife, Jill, bought meals from HelloFresh, a company that sells kits with the ingredients and the recipes to cook at home. Apparently, because of the pandemic, something known as “cooking fatigue” has led many people to tire of the repetitive chore of starting from scratch.
I recently received an email from Kelli Yoder, the communications manager at Adira Foundation, an organization whose mission is to “invest in better lives for people with neurodegenerative diseases.” She wrote that the foundation had enlisted the help of StoryCorps, a…
Buried in my brain is a Proustian memory. It occurred during my elementary school graduation ceremony when the principal played the song “The Way We Were,” by Barbra Streisand. Any time I hear that song, I am transported back to hearing Streisand’s voice: “Mem’ries/ Light the corners of my…
One of the characteristics of a good journalist is being able to digest a lot of information, such as the entirety of a study, and then concisely present the most pertinent and interesting facts in a 700-word story. I have written many of these articles in my career, and I…
Over Easter weekend, my mother-in-law, Edwina, visited. My wife, Jill, and I are always happy to see her, and as usual, the conversation turned to the latest news in the family. One notable occurrence was a situation involving her brother’s mother-in-law, Lucille, whose health at 97 years old is fragile.
“Do you believe in miracles?” Sports announcer Al Michaels uttered that sentence on national television in February 1980 during an Olympic hockey game between the United States and the Soviet Union. During the game, which was later dubbed the “Miracle on Ice,” the Americans were heavy underdogs. But that…
My wife, Jill, and I do not dwell on her Huntington’s disease (HD). We know it’s there, of course, lurking like gray, angry clouds and chilly air that say winter is coming. But from time to time, we do talk about it. The other night, Jill used a…
One of the most inspirational definitions of kindness I’ve ever read comes from Father Lawrence G. Lovasik’s book “The Hidden Power of Kindness“: “Not only is kindness due to everyone, but a special kindness is due to everyone. Kindness is not kindness unless it is special. Its charm…
I like learning, especially from smart people. My wife, Jill, is one of the smartest I know. With that in mind, I wanted her wisdom from the years she spent caring for her father, who had Huntington’s disease (HD) and died in 2011. Following are some of the lessons…
I have previously discussed in this space my wife Jill’s dislike of visiting the doctor. I use the word “dislike,” but she would use the word “hate.” Since Jill was diagnosed with Huntington’s disease in 2018, I try to go with her to appointments when she asks me to.
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