Note: This column discusses suicide. Resources for help are listed at the end of the column. In the Huntington’s disease community, I’ve noticed that conversations about depression and suicide are often avoided or treated as taboo. Medical professionals sometimes warn families like ours that suicide may be an outcome…
Dear past me, I know you’re scared. I know your hands are trembling, not just from the involuntary movements beginning in your fingers, but from everything this diagnosis means. Huntington’s disease. You heard the words, but your brain hasn’t fully let them in yet. You’re still sitting in…
Children of people with Huntington’s disease are subject to more childhood trauma than their peers, contributing to increased psychological distress during adulthood, a new study reports. The researchers noted that while the symptoms of Huntington’s can manifest at any time of life, “their onset is usually around [the] age…
When I was a child, I never missed an episode of the television series “The Incredible Hulk.” I was fascinated by Bruce Banner’s struggle — how he tried to control the monster inside him as he turned green, his muscles bulging out of his clothes; how he fought…
I’ve stood in front of classrooms filled with bright-eyed medical students in their freshly pressed white coats, ready to learn the clinical details of Huntington’s disease. They take notes, nod along, and ask technical questions. But when I begin to speak not from a textbook but from lived experience,…
Daily treatment with Ingrezza (valbenazine) led to reductions in motor- and cognitive-related disease burden for adults with chorea due to Huntington’s disease, according to new data analyses from the Phase 3 KINECT-HD clinical trial. These changes were assessed with a relatively new patient-reported measure, called the Huntington’s Disease…
My wife, Jill, who’s gene-positive for Huntington’s disease, has for months been riveted by the murder trial of Karen Read, a Massachusetts woman accused of killing her boyfriend, a Boston police officer, in 2022. Last month, a jury found Read not guilty of second-degree murder and manslaughter…
When people find out I have Huntington’s disease, there’s often a long pause, followed by a look I’ve come to recognize all too well: pity. Their eyebrows crease. Their voices drop an octave. They fumble for comforting words that often make me feel anything but comforted: “I’m so sorry.”…
Participating in dance classes may help people with Huntington’s disease improve their balance and maintain their functional capacity, according to the results of a small U.S. pilot study in which patient mobility was assessed before and after an intervention program. The researchers shared the results in a talk titled…
Long-term care facilities can help people with Huntington’s disease thrive, and successfully managing the transition into long-term care requires cooperation and communication from everyone involved, social workers said. Caregivers need to pay attention to “indicators,” assessments of what a person can do without assistance — that can involve anything…
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