Columns

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…

My late father, David, never wanted to take the genetic test for Huntington’s disease, an illness that had already taken the life of his own father and his grandmother. He knew there was neither a cure nor a treatment to slow the disease’s progression. For many years, he…

Forms of mutant huntingtin (mHTT) protein that don’t clump initially drive early disease progression in people with Huntington’s disease, according to a study wherein patient-derived cells were transplanted into newborn mice. These soluble forms of mHTT were found to cause structural changes in the neurons producing them and to…

I couldn’t believe what I’d just heard. My wife, Jill, told me she recognized a song but couldn’t remember the lyrics. This sent me spiraling down what she calls the Huntington’s Disease Black Hole. It made me wonder if her memory lapse was yet another symptom of…