When I answered a Facebook post in a Huntington’s disease (HD) community support group, little did I know what kind of a journey it would take me on. Fellow colleague and columnist B.J. Viau was looking for someone who might be interested in writing a column for…
“I wake up panicking and find it hard to unclench the ball of anxiety tightening in my chest.” — Melanie Pearson, from her first blog post about caring for her brother with Huntington’s disease. I understand Melanie’s feelings. Huntington’s has also taken the lives of my dad, grandad, and…
“The brain is like a muscle. When it is in use we feel very good. Understanding is joyous.” — Carl Sagan A chance meetup last summer with a local in my community led to a slightly random conversation about brain donation. I was discussing a genetic test I…
Huntington’s disease presents a complex range of behavioral, cognitive, physical, and psychological symptoms. It poses many challenges to families, friends, caregivers, and people who are living alone with this condition. Huntington’s has taken the lives of my dad, grandad, and great-grandmother. I tested negative for…
I recently connected with patient advocate Tanita Allen through my work for Huntington’s Disease News. In May, for Huntington’s Disease Awareness Month, Tanita kindly shared the story of her own Huntington’s disease journey for this website’s Community Spotlight project. Huntington’s disease has affected several generations of my…
We’re now halfway through our summer here in the U.K., but you wouldn’t necessarily know it this year. Only last week, I needed to wear jumpers and tights because of unseasonably chilly temperatures. We’ve been lacking much summer sunshine as we’ve had higher than average rainfall. This week, however, has…
“A friend is someone who knows all about you and still loves you.” — Elbert Hubbard Huntington’s disease has affected several generations of my family, taking the lives of my dad, granddad, and great-grandmother. I tested negative for the disease in the summer of 2023. In the…
“When it started getting bad, it was like watching her drown.” That’s how a young man named Morgan described watching his mother’s Huntington’s disease (HD) progress. His interview was part of a video created by the Huntington’s Disease Youth Organization (HDYO) about the condition’s impact on young…
In my early 20s, I went to see my general practitioner because I’d been noticing my dad having symptoms of what I thought could be Huntington’s disease. In hindsight, he’d been displaying cognitive signs for a decade, but now the physical signs had started to show. The doctor…
“Love and peace.” — Marjorie Guthrie’s signature sign-off on letters and notes Marjorie Guthrie was a dancer and teacher who started her own dance school. She also was the second wife of Woody Guthrie, an American singer-songwriter and visual artist who had Huntington’s disease (HD). I know the…
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