Confronting a family tradition that never goes away
Gaining a deeper understanding of how Huntington's disease affects families
In the summer of 2022, my wife, Jill, and I attended an eye-opening event that made me understand exactly what Huntington’s disease (HD) does to a loved one. It was a family reunion hosted by Jill’s paternal relatives.
Her father had HD, as do multiple people on his side of the family. It’s a tradition that, sadly, has been passed on to my wife and our daughter, Alexus, both of whom are gene-positive for this horrific, terminal illness.
As Jill and I arrived at the retreat center, I saw some folks I knew, but even Jill didn’t recognize most of the attendees. After introductions were made, I saw something that gave me pause.
A woman’s muscles were jerking and writhing involuntarily, which is a symptom of Huntington’s known as chorea. As I looked around, no one else seemed to notice the woman’s uncontrolled movements, or if they did, they didn’t acknowledge it.
I waited until Jill and I were alone to ask her who the woman was. Jill wasn’t sure, but she joked that the woman was definitely family. It took me a second to get what Jill was saying: The woman has HD, and HD runs in Jill’s family.
I was a little shaken, but as I glanced around the room, my first thought was how many people here could or do have HD?
Focusing on the present
Later, after we ate, Jill and I took a walk outside. I squeezed her hand, and she looked at me with sadness in her eyes. Jill told me my reaction was completely understandable. Seeing HD in people besides her was startling, to say the least, but I wanted to know how it was affecting Jill.
She said she’d never thought about the fact that so many of her aunts and uncles suffered and died from HD. At family events, she told me, it was normal to see people moving constantly, making odd sounds, and using wheelchairs because of the disease.
“Is it difficult to deal with?” I asked.
Yes and no, she said.
“It is normal for me because I grew up with it, but seeing people in different stages of the disease I have is hard,” she said. “It’s a reminder of what’s to come. It feels a little like getting diagnosed with a cancer that half of your family has died from, while the other half are enduring horrible treatments that may never work.”
As we walked back to the building, I heard laughter. Inside, the family was holding an auction, where everyone was bidding on random gifts people had brought. As we took our seats, I looked around the room. It was obvious that everyone was enjoying themselves, which made Jill happy.
My beautiful and brave wife then looked at me and said, “Yes, being part of an HD family brings sadness, but it’s taught us all to live in the present and always appreciate little moments like these.”
Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Huntington’s disease.
About the Author
Pam Voss Westman
My family started out with late stage HD. Our family reunions sound like the way you describe Jill's. Every stage is visible. I just got used to seeing the symptoms and took them in stride.Our families are slowly showing the symptoms earlier and earlier. Before DNA testing was available, I just called it a "Thompson" thing... my grandma's maiden name. It seemed 90% of the families refused to acknowledge it. As the next generations showed HD earlier in their lives, they had to admit that relative must've had it. When I see a potential relative while researching for a family tree, one of my questions is do you have HD in your family? That actually worked for some!