Adaptive Skier with FSH

Learning that Gregg Kuersteiner snow-skis black diamond (expert) slopes at high speed doesn’t seem unusual until you see the rig he skis on.

Kuersteiner, 47, began skiing at age 2 every weekend of the season in his native upstate New York, under the tutelage of his father, a ski school instructor. He became an expert skier at an early age, and raced on the giant slalom team in high school.

At 27, though, he learned he probably (the diagnosis still isn’t certain) has facioscapulohumeral muscular dystrophy (FSH). The disease weakened his arms and legs and he began falling frequently. In three years, he swore he’d skied his last run.

That decision held up until six years ago, when his first daughter was born and he realized he wanted her to hit the slopes just like he had, at 2 years old. And that meant, in order to coach her, he had to be on the slopes with her.

Kuersteiner’s older brother Eric had been trying to get Gregg back onto skis, anyway. He’s an instructor with ARISE and Ski, an adaptive ski program in central New York.

One of the devices he uses to get people with disabilities onto snow-covered hills is called a bi-ski. It’s a sit ski with a bucket seat mounted atop two short fat maneuverable skis. The skier helps maintain balance by gripping two mini-skis (outriggers).

“I had the advantage of having been a strong skier for most of my life,” Gregg says of his ability to pilot the bi-ski down the mountain. Eric skis along behind with a 12-foot tether attached to the bi-ski, just in case Gregg rockets out of control.

And rocket he does, faster than most other downhillers on standard skis.

“Some people who have nothing wrong with them have crappy attitudes,” he laughs. “I live life for every day.”

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