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…
Columns
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…
As someone whose wife and daughter are gene-positive for Huntington’s disease (HD), I’m always interested in any new studies and advancements in treatment. So when a friend recently called to let me know that the Huntington’s Disease Society of America (HDSA) is hosting a meeting in November…
My name is Tanita Allen, and in 2012, I received life-changing news: I was diagnosed with Huntington’s disease (HD), a rare, neurodegenerative condition. Huntington’s is rare enough as it is, but the belief that it doesn’t affect people of African descent made getting a proper diagnosis even…
Halloween is coming next month. It’s my wife Jill’s favorite holiday, mainly because she likes scary experiences. Her excitement is like a child’s when she enters a haunted house or steps onto a roller coaster. There’s something about the rush — that heart-pounding excitement — that makes her fearless…
When I answered a Facebook post in a Huntington’s disease (HD) community support group, little did I know what kind of a journey it would take me on. Fellow colleague and columnist B.J. Viau was looking for someone who might be interested in writing a column for…
My wife, Jill, sometimes daydreams about items we could sell on Etsy, an online store for handmade or vintage products. One idea is a T-shirt that says: “I’m not drunk. I have Huntington’s disease.” Jill is gene-positive for the disease, as was her father and multiple people…
My wife, Jill, has always been the embodiment of resilience. She’s the type of person who can power through even the most daunting circumstances. I loved this quality when we met because it was a testament to her strength of character. She especially relies on her toughness as she…
My wife, Jill, loves the thrill of roller coasters. The higher, faster, and twistier the ride, the better. Most people scream, but Jill never feels calmer than when she’s on a coaster. She’s one of those rare people who can focus better and handle stress more effectively when an…
Recent Posts
- Actor Will Forte shares family story in Teva awareness campaign
- Finding ‘space in the middle’ to deal with life’s challenges
- What a compassionate reset looks like in life with Huntington’s
- Ingrezza engages with therapeutic target more strongly than Austedo
- Anticipation of a possible new clinical trial has us holding on to hope
- What caregiver burnout is really about — and what you can do about it
- Oral Huntington’s treatment aims to slow disease progression
- Accepting help from my loved one with HD is a lesson in partnership
- Understanding how Huntington’s disease affects my cognition
- Guest Voice: We hold onto hope while fighting for new treatments