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…
Healthcare for those with Huntington’s disease comes with complexities that often require a collaborative approach. Over the years, I’ve learned the value of being proactive on this journey by asking key questions to ensure that my providers and I are aligned. These questions not only help me understand my…
Living with Huntington’s disease (HD) can feel like an uphill battle, but self-care can make a meaningful difference in managing its symptoms. The key to a successful self-care routine lies in personalizing it to fit your unique needs and lifestyle. These seven tips have helped me manage my…
Living with Huntington’s disease (HD) means navigating a world of unpredictability — fluctuating symptoms, physical limitations, emotional challenges, and the stigma that often comes with a chronic illness. Setting healthy boundaries has been crucial to managing my energy, maintaining relationships, and living my best life despite the hurdles. Following…
Living with Huntington’s disease (HD) is a journey filled with ups and downs, uncertainties, and moments that test our mental, emotional, and physical strength. Over the years, I’ve realized that practicing self-compassion isn’t just beneficial — it’s necessary. When the world feels heavy, or when my symptoms remind…
Living with Huntington’s disease (HD) brings unique challenges — physical, emotional, and mental. Navigating its complexities while maintaining a sense of peace and presence in my daily life hasn’t always been easy, but mindfulness has become an essential tool in my toolbox. Following are five ways I practice mindfulness…
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