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…
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…
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…
Spring has always been my favorite season, not just because of the warmer weather or the return of blossoms, but because it’s a reminder that renewal is possible. No matter how harsh the winter has been, no matter how barren the trees may look, life still finds a way to…
When I received the invitation from Brown University’s School of Public Health to discuss my memoir, “We Exist,” I felt deeply honored. As an advocate for Huntington’s disease (HD) awareness, particularly from the perspective of a marginalized community, I knew this was an invaluable opportunity to engage with…
Fatigue and sleep disruptions have been some of the most challenging aspects for me while living with Huntington’s disease. They creep in slowly, often unnoticed at first, until they begin to shape the rhythm of my daily life. Managing them has required a combination of self-awareness, adaptability, and a…
Every year, as March 17 approaches, the world turns a vibrant shade of green. People gather in pubs, clink glasses in celebration, and revel in the joy of St. Patrick’s Day. It’s a holiday known for its infectious energy, lively music, and, of course, flowing drinks. But for me, the…
As the snow melts and the first flowers bloom, I welcome spring as a season of renewal. For me, spring cleaning isn’t just about scrubbing floors and reorganizing closets; it’s about decluttering my mind, refreshing my body, and realigning my spirit. Living with Huntington’s disease means that every season…
Tomorrow, Feb. 28, I’ll celebrate a milestone that once seemed impossible: my 50th birthday. This date is deeply meaningful and significant for me. Just a day away from a leap day, it has always been a reminder to me of life’s unpredictability. But there’s another, even deeper correlation: Feb. 28…
Valentine’s Day is often associated with love, chocolates, and grand romantic gestures. But for me, this year, it became something much more profound — an unforgettable day of relief, gratitude, and the reaffirmation of hope. It was the day my nephew DeMarco Duhaney learned he was free from Huntington’s…
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