I Dodged the Gene That Took My Mother's Life

And now I spend my career advocating, pole vaulting and log rolling.

by Jordan Rosenfeld
Apr 3 2017, 2:00pm

Courtesy of Shana Vergesten

Shana Vergesten's YouTube tutorials on TRX-style lunging with a medicine ball express a mastery of endurance, but her propensity for fitness is more than muscle-deep. She spent her childhood watching her mother succumb to Huntington's disease, a fatal neurodegenerative disease that slowly and painfully erodes muscle control. Rather than crushing Vergesten, it gave the 37-year-old Wisconsin-based fitness instructor and health advocate a purpose as solid and unyielding as the logs she commands as a world champion lumberjack athlete.

Though Vergesten's mother died of Huntington's in 2013, her fighting spirit inspired Vergesten to push her own body to its limits through sports like gymnastics, pole vaulting and swimming. she knew she had a 50 percent chance of inheriting the fatal disease; this stayed in the periphery of her mind, but it never appeared to slow her down.

In June 2014, Vergesten learned that she does not in fact have the gene that took her mother. She and her husband felt free to start a family, and her son Greyson was born in May of 2015. Despite dodging the disease, she has committed herself to education and advocacy of Huntington's disease for life, in the hopes of raising awareness and moving closer toward a cure.

How did your mother's illness shape your character?
It wasn't just her illness, but the attitude my parents had. They decided to embrace positivity and living life to the fullest... That's when athletics were introduced into my life. Even though they told me about the disease, they also showed me all the research and all the hope in terms of eventually finding a cure or a treatment.

Then my parents did a great job of making sure I had time after school to be myself. I had gymnastics practice, log rolling, swimming. Something where I could go and just be with my friends and not have to worry about my mom. It allowed me to still have my childhood. We also traveled around the world and all over the United States even though my mom could barely walk. We went to Israel and Egypt. We had to hold her up but she walked all around the pyramids with a big smile on her face. I've carried that attitude and inspiration with me ever since.

Courtesy of Shana Vergesten

What was it like to live with that uncertainty that you might inherit this disease?
The risk was always there, so it wasn't something I dwelled on every day, but it was always in the back of my mind, especially when I was dating people and thinking about kids. I wasn't sure if I was ever going to be able to have a family, though I really wanted one. It didn't get really scary until I actually went through the testing process. We lucked out and got a negative result, and I have a beautiful baby boy now.

What is your goal in raising awareness for Huntington's?
For as many people as possible to understand and know what Huntington's is. I'm not a scientist [but] I can educate people. With knowledge comes power. The more people who understand the disease, the more fundraising we can do, but also the more compassion there is for people with Huntington's.

What do you love about log rolling? It's a pretty esoteric sport.
Over 150 years ago, to avoid logs getting jammed on riverbeds, the bravest lumberjacks, called river piggers, would ride on the logs and steer them to the mill. If they fell in, they would either freeze to death or be crushed between the logs. At the end of the lumberjack season, all the lumber camps would get together and have logrolling competitions. What we do is represent history from over 100 years ago, but rather than bearded men in flannel it's a bunch of girls in Lululemon gear.

It's probably one of the most fun sports anyone has ever tried. It starts with you learning to balance on a log by yourself, which is a great workout. Over time you start competing against other people. It's kind of like boxing, except you don't touch anyone. You use your leg strength, footwork, and reaction time to try and knock your opponent in. You're jerking the logs different directions. As the match progresses, we move to smaller logs, which spin faster, so it gets more exciting. The first person to win three falls wins the match. It looks so dangerous, but if you think about it, you're actually rolling over water. The worst injuries are bruised or scraped shins and you tend to fall away from the logs.

Now that you know you won't have Huntington's, what has changed about your life?
Not a thing. Having Huntington's disease in my life—even though it was awful and I'd do anything to have my mom back—gave me a whole new community and a purpose. It's very selfish! It makes me feel really good that I'm continuing to fight my mom's fight.

Update: A previous version of this article states that Vergesten is a "fitness instructor." She is an ACE certified trainer.

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