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…
The Huntington’s disease (HD) community is a family bound together by shared experiences, mutual understanding, and unbreakable ties of support. Within this family, certain individuals shine in ways that leave an indelible mark on our hearts. My dear friend Roy Nierenberg was one of those bright lights — an…
For as long as I can remember, the Lunar New Year has held a special place in my heart. Every year since 2008, I’ve made it a tradition to celebrate the occasion with a meal at one of the most authentic Chinese restaurants in my town. This year was no…
Anger is a powerful emotion that many people living with Huntington’s disease face regularly. This neurodegenerative disease causes changes in the brain, often leading to mood swings, irritability, and, for some, aggressive behavior. These emotional shifts aren’t a reflection of our character, but a byproduct of how the disease…
In a world buzzing with notifications, tight schedules, and endless to-do lists, finding a sense of calm might feel like a distant dream. Being symptomatic with Huntington’s disease is especially challenging when I’m trying to balance my life. Despite having Huntington’s, I’ve adopted the following techniques to help center…
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