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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…

Huntington’s disease, a neurodegenerative disorder, has affected several generations of my family. So far, it’s taken the lives of my dad, grandad, and great-grandmother. I tested negative for Huntington’s disease in the summer of 2023. In the early stages of my dad’s disease, my friends and I…

The United Kingdom’s Mental Capacity Act, introduced in 2005, states that a person is unable to make a decision if they cannot do one or more of the following: “Understand the information relevant to the decision “Retain that information for long enough to make the decision “Use or weigh…

Recently, as I sat on the couch enjoying the sound and smell of my wife Jill’s tea brewing, I thought about life’s simple pleasures. Normally, Saturdays are packed with all the chores and errands we didn’t do during the week, but not this day. The only thing on our agenda…

“My advice to other disabled people would be, concentrate on things your disability doesn’t prevent you doing well, and don’t regret the things it interferes with. Don’t be disabled in spirit as well as physically.” — Stephen Hawking  Huntington’s disease affected both my dad’s and my brother Gavin’s…