Preparing for future care is one of the most intimate, emotional undertakings of the Huntington’s disease (HD) journey. It requires looking ahead to a time we may not feel ready to imagine, while still holding on to the life we’re living now. But no one prepares for this alone.
A couple months ago, my wife, Jill, and I were delighted to attend the wedding of one of our daughter’s closest college friends. Over the years, our daughter, Alexus — or Lexi, as we call her — has introduced us to some of the remarkable friends she made at the…
When most people picture Huntington’s disease (HD), they imagine the outward signs — the chorea, the unsteady walk, the tremors. And while those symptoms are real, they’re only a small part of the HD experience. The truth is, many aspects of this disease can’t be seen by others, yet…
Some days, I view my life like a split screen. On one side is life before Huntington’s disease entered it. On the other is everything that’s come after. Although our lives changed the day my wife, Jill, was diagnosed with Huntington’s in 2018, she hasn’t. Every now…
Today, on Thanksgiving, I find myself reflecting on what has truly sustained me this year, not just physically, but also emotionally and spiritually. The answer always circles back to one thing: the Huntington’s disease (HD) community. This beautiful, resilient, imperfectly perfect family has given me a sense of belonging…
My wife, Jill, and I recently helped our daughter, Alexus, and her husband move. One night, we had dinner together, along with some of her friends, and it began with the usual polite choreography: exchanging names, shaking hands, and engaging in small talk. By dessert, though, it felt like we’d known each other…
For most of my life, I wore exhaustion like a badge of honor. If I wasn’t busy, I felt behind. I learned early on that to be seen as capable, especially as a Black woman, I had to show strength at all times, no matter how depleted I felt inside.
As we celebrate National Family Caregivers Month, I would like to share an experience I had at a Huntington’s disease advocacy meeting I attended with my wife, Jill, a couple of years ago. It was my first advocacy meeting, and as I stepped through the doors of the…
As the holidays draw near, I find myself glancing at the table and noticing what’s missing: There’s an empty seat where a loved one once sat. Grief takes on a unique shape in the Huntington’s disease community. It’s not just about death; it’s about watching pieces of someone you…
“You pay for it now, or you pay much more later.” My wife’s father said that often. Ken wasn’t a policymaker or a scientist. He was a dad who lived and died with Huntington’s disease, passing in 2011 from complications of the same illness that now tightens its…
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