My wife, Jill, has always been a fighter, no question about it. Before her Huntington’s disease diagnosis, she’d march into any battle against anyone or anything without hesitation, no matter the stakes. After she learned that she’d experience the same decline from Huntington’s as her father did, though, she seemed to…
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Living with Huntington’s disease (HD) presents many physical hurdles, but the toll it takes on mental health is often overlooked. Many people, including myself, experience intense bouts of anxiety and depression as part of this journey. Coping with the physical symptoms of HD can be exhausting, and the…
If there’s one thing I know about my wife, Jill, who’s gene-positive for Huntington’s disease (HD), it’s that she seems to have a funny relationship with electronics. Over the years, her cellphones have developed quirks: missed calls, delayed texts, ghost vibrations when there’s nothing there. It’s not that she’s…
Navigating a new diagnosis of Huntington’s disease (HD) is a profoundly personal journey through a range of emotions, from shock and disbelief to worry. I know this experience all too well. Reflecting on my own path from diagnosis to today, there are so many lessons I wish I could…
Death wasn’t something I thought much about when I was younger. My mortality felt distant and abstract. Then, over a 16-year period, everything changed: My two older sisters died, one from cancer and the other from a tragic accident, and my parents also passed away. During that time frame,…
This October has been one of the most inspiring and empowering months of my life as a Huntington’s disease (HD) patient advocate. I had the incredible opportunity to participate in three major advocacy events, each one special and impactful. Speaking to future doctors, celebrating with my dream medical team,…
In 2018, in the months leading up to when my wife, Jill, was diagnosed as gene-positive with Huntington’s disease (HD), we kept our worries to ourselves about the symptoms she was exhibiting, including chorea and depression. We knew they were classic signs of HD, but it was difficult to…
It caught me off guard when a dear friend asked me recently, “How can I help you?” It wasn’t because I hadn’t been asked this before in different contexts, but rather that I realized I’d never truly given the question enough thought. Living with Huntington’s disease (HD) has…
I’ve always loved watching the Olympics. Seeing athletes in dazzling form and fierce competition compels my attention, and the 2024 Summer Olympics in Paris was no different. Little did I know that watching one event would lead my wife, Jill, and I to have a profound conversation about honesty,…
My wife Jill‘s love knows no bounds. She’s patient, forgiving, and understands me deeply. Yet, I sometimes act without considering how my decisions affect her. Here’s an example: I like to speak in public. I frequently discuss my faith, and although Jill doesn’t always share my beliefs, she…
Recent Posts
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- The power of constructive dialogue in life with Huntington’s
- I insist on being seen as I am, not as someone else’s story
- FDA requests additional clinical trial of Huntington’s gene therapy AMT-130
- A log cabin miles from anywhere was just what the doctor ordered