Columns

“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…

Ah, spring has finally sprung. Plants are blooming, trees are budding, and the weather is warmer. As a result, my wife, Jill, and I recently decided to take advantage of the beauty exploding around us, along with the good weather, by spending the day in the nation’s capital, close…

Psychosis causes a person to lose a degree of contact with reality. According to the National Health Service, three main symptoms are linked to a psychotic episode: hallucinations, delusions, and confused and disturbed thoughts. As a 2019 Huntington’s Disease News article noted, “Psychosis is defined as experiencing hallucinations…

From time to time, my son-in-law, René, will ask me “when you were young” questions, usually to poke good-natured fun at me. Here’s what I mean: I was born in 1964, but if you heard what he’s asked me — such as, “Did you use an abacus instead of…