A Genetic Lottery
— Rebecca Field

“Heat, like gravity, penetrates every substance of the universe, its rays occupy all parts of space.” — Jean Baptiste Joseph Fourier, a mathematician who studied heat conduction Our dad died in May 2020 from Huntington’s disease, and my brother, Gavin, was diagnosed with it…

Our dad, David Roy Field, would’ve celebrated his 72nd birthday this February. I often wonder what he would’ve thought of our current family life if he were still with us today. We lost Dad to Huntington’s disease in May 2020. My brother, Gavin, was recently diagnosed…

“Yesterday/ All my troubles seemed so far away/ Now it looks as though they’re here to stay/ Oh, I believe in yesterday/ Suddenly/ I’m not half the man I used to be/ There’s a shadow hanging over me.” My dad and I loved listening to the Beatles’ “…

“Find another oak to weather the storm with you.” — author Deepak Chopra I’ve always likened caring for someone with Huntington’s disease (HD) to navigating a storm, with waves of difficult times crashing over you. Eventually, the storm clears and the waters grow calm again, but you know…

“See you in heaven one day” is a line from one of my dad’s all-time favorite songs, which I have recently been revisiting.  By 2020, my dad had been in nursing homes for almost six years, suffering from late-stage Huntington’s disease. He’d been having…

As I descended a country lane through the valley this morning on my way to work, storm clouds that had gathered began to clear, revealing a blue sky. Daffodil sprouts appeared in the hedgerows. The sun shone across the fields, highlighting the remaining autumnal colors, and then streamed through the…

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 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…

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…

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…