Columns

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…

Living with Huntington’s disease (HD) means navigating a wide range of symptoms that can impact my energy, coordination, and even my appetite. Some days, I wake up feeling strong and motivated, while other days, I need to give myself extra grace just to get through simple tasks. One way…

The other day, I overheard something beautiful that made me pause and reflect. My wife, Jill, who is gene-positive for Huntington’s disease, was on the phone, comforting a friend struggling with caregiving responsibilities. “You’re doing an amazing job,” Jill told our friend. “Remember, even on the toughest days, your…

A recent weekend in North Carolina was nothing short of magical. I was invited by the nonprofit advocacy group HD Reach to be the keynote speaker for their annual Education Day. The theme this year — “HD Has Color” — couldn’t have been more perfect. It felt like an affirmation…

My wife, Jill, recently challenged a sentiment she hears far too often: that people with Huntington’s disease should feel “grateful” it’s a slow-moving condition, unlike amyotrophic lateral sclerosis (ALS). Her reaction struck a deep chord in me and revealed an important truth about how we view devastating rare and…

The sun filters through the trees, casting golden light onto the path ahead of me. The crisp morning air carries the scent of damp earth, and with each step, I feel more connected to the world around me. Nature has become more than just a backdrop to my life; it…

As my wife, Jill, and I sat at a sidewalk cafe, we basked in the warmth of the sun — a welcome feeling after what had felt like a lifetime of gloomy winter weather. Jill’s diagnosis of Huntington’s disease is an unwelcome companion in our lives, but it’s also…