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…
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In our quiet moments together, my wife, Jill, often shares her deepest thoughts with me. Recently, one such conversation left a profound mark on my heart. Jill’s Huntington’s disease has shaped our lives and made every moment precious, but her perspective on the journey is a constant source…
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…
As a father, I’ve had many moments when I was proud of my daughter, Alexus. I’m proud of her love of helping others; of her acceptance into one of the top schools in the world, the Massachusetts Institute of Technology; of how deeply she loves to enjoy life.
“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…
A Pollyanna is someone who maintains an optimistic perspective, even in the face of difficult situations. As a cup-half-full kind of guy, I like being positive. However, it’s essential to find balance, especially when dealing with mental health or other significant issues. Toxic positivity can be naive…
“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…
Fifteen years of marriage have taught me that compromise and understanding remain at the heart of a strong relationship. These elements have become more important since Jill’s diagnosis of Huntington’s disease in 2018. As I reflect on our life since then, I realize how much we have grown individually…
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…
Throughout her journey with Huntington’s disease (HD), my wife, Jill, has taught me a great deal about resilience, love, and understanding. One of the most profound lessons has been her empathetic approach to conflict. Jill has a remarkable ability to step back and try to understand the other…
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