September has always signified a quiet shift for me. It’s evident in the crispness of the air, the softened light, and the way the days naturally fall into a steadier rhythm. Even though the calendar says the year is winding down, this month feels like a beginning. It’s not the…
Swallowing difficulties start in the early stages of Huntington’s disease (HD) and progress over time, affecting both voluntary movements in the mouth and involuntary movements that transport food to the stomach while protecting the airway, a study showed. Researchers used the Swallowing Disturbance Questionnaire (SDQ) to assess swallowing problems,…
Last in a series. Read part one. Choosing genetic testing for Huntington’s disease is an act of courage on its own, as I pointed out in my column last week. But as my wife, Jill, discovered, the medical system’s maze can make it feel like an outright ordeal.
There’s a unique kind of pain that doesn’t come from having Huntington’s disease, but rather having to convince people the disease exists. Living with Huntington’s as a Black woman has meant constantly being disbelieved, questioned, and scrutinized. It has meant being invisible in plain sight. My journey with Huntington’s…
An investigational treatment prepared from stem cells found in young teeth appears to be safe and to help adults with Huntington’s disease move better and carry out daily tasks more easily, perhaps by slowing damage to the brain, according to data from a Phase 2 clinical trial. Called…
First in a series. When people ask my wife, Jill, about her Huntington’s disease, I never expect her reply to reach for a playground metaphor. But she has a way of drawing from everyday life, turning even the hardest subjects into something instantly relatable. “It’s just like a…
Life with Huntington’s disease often feels unpredictable and overwhelming. There are times when the emotional and physical weight feels like too much to carry. In those moments, humor has often been my saving grace — a source of comfort, distraction, connection, and identity. Yet like many tools we turn…
A postdoctoral researcher at the University of Michigan won a three-year grant to support her work investigating the cellular mechanisms underlying Huntington’s disease. The Huntington’s Disease Society of America (HDSA) awarded its Berman-Topper Family HD Career Development Fellowship to Elizabeth Tidwell, PhD, whose project, “Determining the structure…
The other week, I hit what I like to call the trifecta of family wins. My wife and daughter actually laughed at one of my puns (a rare feat); I managed to find something my wife, Jill, couldn’t see (she usually finds the things I lose); and, perhaps most…
Huntington’s disease has transformed nearly every part of my life: my body, my emotions, my routines. But one of the most profound changes has been in how I show up as a friend, and how friendship shows up for me. Huntington’s has a way of filtering out relationships. It…
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