Jeff Rose is an avid adaptive surfer and skier. But his daily workout is not aimed at performance. “When I elevate my heart rate, it reminds me I’m in charge of my body,” Rose says.
When Rose was 18, he was diagnosed with Friedreich’s ataxia, a rare genetic disorder in the same family as muscular dystrophy. The first sign was difficulty walking, and the news was even more devastating because Rose witnessed his aunt’s experience living with the condition.
Despite their shared diagnosis, Rose has taken a different path: “I love my aunt, but we have different attitudes and different perspectives,” he says. Rose’s sister also lives with an advanced stage of the condition.
“My brain and body are fine, but the neuro-communication between the two gets jumbled,” Rose explains. Speaking with him, it suddenly becomes clear that we’re just hearing Rose through a filter.