As we approach Rare Disease Day on Feb. 28, I find myself reflecting on the journey of my wife, Jill, with Huntington’s disease (HD) and the struggles that families affected by genetic conditions face. One issue I’m focused on is a critical gap in healthcare policy that continues to…
For Valentine’s Day each year, I write my wife, Jill, something romantic. It’s my way of expressing the depth of my love for her as she battles Huntington’s disease, an inherited neurodegenerative terminal illness. Each of the columns, which often are in the form of a play, has been…
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…
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…
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.
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…
Sometimes our best-laid plans go sideways, and what emerges is better than anything we could’ve orchestrated. That’s what I learned the year my wife, Jill, was diagnosed with Huntington’s disease (HD). When your world gets turned upside down, you grasp for anchors — those memories of better times that…
My wife, Jill, has battled being gene-positive with Huntington’s disease (HD) with remarkable grace and resilience. Despite her difficulties, she continues to find joy in the simple things, such as the companionship of a furry friend. Our beloved dog, Baby Girl, passed away in 2022, leaving a…
My wife, Jill, has Huntington’s disease — a rare, neurodegenerative illness that can seem to rule her life. One of the hardest things to deal with is Jill’s nearly constant worrying about going places. It’s difficult to…
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