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Mornings with Huntington’s disease can feel unpredictable. Some days I wake up with energy and clarity. Other days, fatigue or chorea greets me before I even reach for the light switch. There was a time when these inconsistencies left me feeling defeated before the day began. But over time,…

“Isn’t it ironic, don’t you think?” my wife, Jill, asked, quoting Alanis Morissette, her favorite singer. “Everywhere you look, people are talking about medications like Ozempic and Wegovy to help with weight loss, while the Huntington’s disease community is desperately trying to keep weight on our loved ones.” Jill and…

When I first heard the words “Huntington’s disease,” it felt like the ground beneath me gave way. There was no clear path forward, no instruction manual explaining how to navigate a life that had suddenly been redefined. At the time, I didn’t have the language to express the tidal…

My wife, Jill, has a brilliant way of making complex things simple. She’s what I call an “explainer extraordinaire.” She has a gift for taking in information, processing it, and then breaking it down in a way that’s easy for anyone to understand. Her gift stems from the…

Life with Huntington’s disease is filled with challenges — some visible, some hidden. While the physical and emotional toll often takes center stage, there’s another weight that many in our community carry quietly: the financial burden. From navigating complex insurance policies to managing rising out-of-pocket expenses, the cost of…

My wife, Jill, recently had an “aha!” moment about some of the neurological symptoms her late father experienced during his battle with Huntington’s disease.  While folding some laundry, she picked up a large sheet that had been sitting in a chilly part of our home. The…

Some days, living with Huntington’s disease feels like trying to catch a butterfly in a storm. The winds of chorea, fatigue, mood swings, and forgetfulness push against the delicate wings of joy. Yet through it all, I’ve learned to reach for joy anyway. To find purpose in the present…

My wife, Jill, is generally an optimist. But lately, I’ve seen frustration cloud her eyes. It’s not just the daily battles we fight together against Huntington’s disease (HD). Those are struggles we’ve learned to face, one day at a time. This frustration is tied to something bigger: the Huntington’s…

Living with Huntington’s disease has taught me that self-care is not a luxury, but a commitment, an act of self-preservation, and a form of self-respect. Before my diagnosis, I had a very different idea of what self-care meant. I thought it was about escaping life’s stressors with…

For as long as I’ve known my wife, Jill, who’s gene-positive for Huntington’s disease, she’s had an uncanny ability to fix any problem thrown her way. It’s like watching a supercomputer in action, processing complex equations in milliseconds. I’ve come to realize that the way Huntington’s diminishes her…