As a caregiver to my wife, Jill, who is gene-positive for Huntington’s disease, I’ve learned that helping isn’t always as straightforward as it seems. Recently, as I watched her face scrunch up in frustration while she looked at her to-do list, I reminded her that she could…
“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…
It’s been a hot summer so far, which isn’t the greatest weather for my wife, Jill, to deal with. She is gene-positive for Huntington’s disease, which causes her to have difficulty regulating her body temperature. But recently, a rainstorm was followed by a soft, summer breeze…
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…
As my 60th birthday approaches in August, my wife, Jill, and our daughter, Alexus, have decided that we must celebrate in a special way. Because our schedules are free in mid-July, we’ll be getting together soon instead of next month. However, instead of throwing a party, they have…
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…
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…
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