Columns

In a world full of negativity, positive reinforcement is a welcome practice. I’m lucky to be part of a family where it is encouraged and implemented. The process has shaped me into a better husband and caregiver to my wife, Jill, who is gene-positive for Huntington’s disease. Jill…

“Can they tell by looking at me how useless and weak and flimsy and [artificial] (and how foney) I feel?” — notes from Woody Guthrie, dated Aug. 21, 1952 Woody Guthrie was an American singer-songwriter and visual artist who was born in 1912 in Oklahoma. Though he inherited…

A neighbor recently told my wife, Jill, and me that her eyesight is getting worse, so she can’t continue reading, which is her favorite pastime. Jill told her about a column I recently wrote about audiobooks, noting that they had helped Jill with her own reading difficulties and…

“And my mother … that was a little too much for her nerves, her something.” This comment, made in 1940, was the first time American singer-songwriter Woody Guthrie had publicly alluded to his mother’s Huntington’s disease. Guthrie was born on July 14, 1912, in Okemah, Oklahoma,…

Watching my wife, Jill, give advice to people touched by Huntington’s disease (HD) during a recent online support group meeting reminded me of the importance of sharing wisdom. Knowing she’s gene-positive for the rare, terminal illness she inherited from her late father has given her the opportunity…

As an advocate and columnist for Huntington’s Disease News, I was excited to be chosen as a moderator for this site’s Community Spotlight. The initiative will highlight personal stories and raise awareness throughout May in honor of Huntington’s Disease Awareness Month. My role involved finding other people…

Huntington’s disease, a neurodegenerative condition, can cause symptoms that are often unpredictable and debilitating. My wife, Jill, who is gene-positive for Huntington’s, has provided me with valuable insight into what she feels by coming up with some impressive descriptions of it. Jill shared a poignant description…

Imagine what a world without Huntington’s disease (HD) would look like if a cure were found. It would be a world free from the suffering caused by symptoms like chorea and cognitive, emotional, and behavioral changes. There would be no more swallowing difficulties, weight loss, or pneumonia…

As my wife, Jill, and I recently made our way through Ronald Reagan Washington National Airport in Arlington, Virginia, I saw her glance longingly at a Starbucks we passed on the way to our gate. We were headed to Boston to visit family but were running a little…

Some of my closest friends are musicians who love the work of Bob Dylan. During a recent conversation, Dylan’s visit with ailing singer-songwriter Woody Guthrie came up. My friends hadn’t realized that Guthrie had Huntington’s disease — which they knew as the same…