Columns

My brother, Gavin, was diagnosed with Huntington’s disease in January 2022, at the age of 42. The disease took our dad’s life in May 2020, when he was 68. So far, it has affected four generations of our family. As we enter a new year, I’m reflecting…

My dad spent the last four years of his life in the Warberries Nursing Home in Torquay, Devon, England, suffering from Huntington’s disease. He’d been moved there when his ability to swallow and his speech had deteriorated. The building was a Victorian Grade…

My wife, Jill, who is gene-positive for Huntington’s disease, and I were recently standing in line at a grocery store when she had an exchange with strangers that reminded us of how powerful words are. It instantly reminded Jill of a hurtful question she overheard…

My brother, Gavin, was diagnosed with Huntington’s disease in January 2022, at 42 years old. The disease has already taken the lives of our dad, grandfather, and grandmother. In recent months, Gavin’s cognitive impairment has seemed to worsen just as his anger and aggression have…

I was recently sitting in the living room, writing this week’s column, when my nephew Dylan sat down with his breakfast. He’s been staying with my wife, Jill, and me for several months, and I’ve noticed he eats a lot of avocado toast. When I asked him what…

My late father had been suffering from Huntington’s disease for about two years, and our family was struggling to manage his care ourselves. We were extremely fortunate to find Dad a personal assistant, Graham, who was the best we could’ve wished for. He was similar in age to Dad…

When I met my wife, Jill, she loved that I was a writer. She would smile every time I shared something I’d written. When I asked her about other authors she enjoyed, Jill said her favorite was Edgar Allan Poe. For…

Note: This column describes the experiences of the author’s father with tetrabenazine (often known by its brand name, Xenazine). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. My dad, who had Huntington’s disease, was moved…

The contents of Ingrezza (valbenazine) can be taken from their capsules and crushed before being sprinkled on soft foods or given via a feeding tube to Huntington’s disease patients who have difficulty swallowing whole capsules, a preclinical study showed. A Neurocrine Biosciences’ oral therapy, Ingrezza…

“Do you think the way people like to be shown love ever changes?” my wife, Jill, recently asked me as we were making the bed. “What a simple yet complicated question,” I replied, wondering where this conversation was going. Her next question deepened the mystery. “Do you think…