When I met my wife, Jill, I had a different view of healthcare than I do now. Since she learned she was gene positive with Huntington’s disease in 2018, I’ve been forced to look at healthcare through Jill’s eyes. We’ve gone to countless doctor appointments together, where I’ve witnessed…
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Anger is a powerful emotion that many people living with Huntington’s disease face regularly. This neurodegenerative disease causes changes in the brain, often leading to mood swings, irritability, and, for some, aggressive behavior. These emotional shifts aren’t a reflection of our character, but a byproduct of how the disease…
One of the many issues my wife, Jill, faces as she battles Huntington’s disease (HD) is dealing with mental healthcare providers who treat HD patients by the book. Here’s what I mean: They follow a very specific, rigid protocol that makes her feel like she’s not being seen as an…
In a world buzzing with notifications, tight schedules, and endless to-do lists, finding a sense of calm might feel like a distant dream. Being symptomatic with Huntington’s disease is especially challenging when I’m trying to balance my life. Despite having Huntington’s, I’ve adopted the following techniques to help center…
Healthcare for those with Huntington’s disease comes with complexities that often require a collaborative approach. Over the years, I’ve learned the value of being proactive on this journey by asking key questions to ensure that my providers and I are aligned. These questions not only help me understand my…
When I first read about a recent study from the University of Iowa, which showed that a common heart drug may slow the progression of Huntington’s disease, my heart skipped a beat. My wife, Jill, battles Huntington’s, which has been our family’s greatest challenge — mainly because there’s been so little…
Picture a family tree, its branches stretching toward the sky, vibrant with life, yet bearing the deep scars of an inherited gene mutation — one that causes Huntington’s disease (HD). For those unfamiliar, this neurodegenerative illness ruthlessly destroys the mind and body by erasing memories and stripping away independence.
Living with Huntington’s disease (HD) can feel like an uphill battle, but self-care can make a meaningful difference in managing its symptoms. The key to a successful self-care routine lies in personalizing it to fit your unique needs and lifestyle. These seven tips have helped me manage my…
To ring in the new year, I wanted to share a fun fact about my wife, Jill: She takes her “Beetlejuice” very, very seriously, and nothing — not even Huntington’s disease — will ever take that away from her. When the sequel to the 1988 cult classic was announced…
Living with Huntington’s disease (HD) means navigating a world of unpredictability — fluctuating symptoms, physical limitations, emotional challenges, and the stigma that often comes with a chronic illness. Setting healthy boundaries has been crucial to managing my energy, maintaining relationships, and living my best life despite the hurdles. Following…
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- The gift of community is what I’m most thankful for this year