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.
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“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…
“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…
In a world full of negativity, positive reinforcement is a welcome practice. I’m lucky to be part of a family where it is encouraged and implemented. The process has shaped me into a better husband and caregiver to my wife, Jill, who is gene-positive for Huntington’s disease. Jill…
“Can they tell by looking at me how useless and weak and flimsy and [artificial] (and how foney) I feel?” — notes from Woody Guthrie, dated Aug. 21, 1952 Woody Guthrie was an American singer-songwriter and visual artist who was born in 1912 in Oklahoma. Though he inherited…
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- The boundary that improved communication in our marriage
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