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,…
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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…
Dating can be a complex and emotional experience under normal circumstances, but for someone living with Huntington’s disease (HD), the journey to find companionship presents unique challenges. One of the most painful aspects of dating with HD is the rejection I’ve encountered when disclosing my diagnosis. At…
For years, my wife, Jill, had asked me to watch a TV show she thought I’d love. I spent all of that time saying no, but this year, I finally broke down and watched “The Sopranos.” As it played, I found myself reflecting on something profound: Grieving doesn’t get…
Traveling can lead to excitement and adventure, but for those of us with Huntington’s disease (HD), it can also pose significant challenges. Whether it’s navigating an unfamiliar airport or managing chorea (involuntary movement) or fatigue, the experience can feel overwhelming. I’ve found that traveling with Huntington’s requires…
My wife, Jill, and I often find ourselves in airports with free time while visiting family across the country. To escape the chaos in waiting areas, we often watch TV shows on my iPad. Recently, we finished HBO’s “Succession,” a drama about a global media…
One of the most challenging aspects of living with Huntington’s disease (HD) is coming to terms with the progressive nature of the condition and the inevitable changes it brings. For those of us who are symptomatic, that involves not only adapting to physical and cognitive changes, but…
Recent Posts
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- Proteins in tiny cell tunnels may be Huntington’s treatment target
- What Cuban food taught my wife about rare disease research
- The reality of invisible symptoms and the myth of ‘you don’t look sick’
- Lung disease treatment shown to ease symptoms in Huntington’s rat model