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A Rare Disease Won’t Keep This Mountain Man Off the Trails

Two decades ago, Ben LeNail’s typical weekend included a mix of cycling, running, backpacking, mountaineering and skiing. A self-described mountain man, he had summited bucket-list peaks, including Mount Rainier in Washington and Monte Rosa in Switzerland, in his 30s. But in his early 40s, he found himself struggling to find his footing on the trails.

At first, he thought the lethargy could be age-related. But at home, leaden legs turned his gait into a shuffle. In 2011, after a three-year diagnostic odyssey, Mr. LeNail was told he had X-linked adrenoleukodystrophy (ALD). The rare neurodegenerative disease, dramatized in the movie “Lorenzo’s Oil,” is similar to progressive multiple sclerosis and is slowly robbing him of his ability to walk.

“Suddenly, I had the body of an 85-year-old,” he says. “Our society has a very traditional vision of masculinity—a man should be able to throw a ball, jump, run. I had to reinvent myself with my disease.”

Refusing to be wheelchair bound, Mr. LeNail, 53 years old, embraced a daily regimen of Pilates, physical therapy, swimming and hiking. He continues to lead as normal a life as possible, entertaining friends with his wife, hiking with his dog and two sons, ages 19 and 24, and working as the director of business development at Alta Devices, a Sunnyvale, Calif.-based solar-energy company and an angel investor in health-care startups.

“I may not be able to summit a mountain, but I promised myself I would remain a vigorous human being both mentally and physically,” he says. “Ironically, the disease makes it more important than ever to exercise every day.”

The Workout

Mr. LeNail exercises for an hour daily, sometimes twice a day. Once a week, he works with physical therapist Vicky Ferreira. They focus on core strength, squats and exercises that utilize bands and pulleys. For the last 20 minutes of each session, they slow dance. “My disease makes my feet very lazy,” he says. “Rather than stare down at my feet and be tense, I can find some comfort and balance in her body next to mine. That helps my brain relax so my movements become less stiff and more harmonious,” he says.

He credits his weekly reformer Pilates class with keeping him out of a wheelchair. “My disease causes the muscles to atrophy, so the body becomes very stiff, almost hunched,” he says. “Pilates helps open up my body.” The workout consists of controlled movements using cables and pulleys that build core strength, flexibility and improve balance. “My body can be a bit spastic, but the repetitive, controlled movements help me build stability,” he says. “And there’s no risk of me falling with the cables attached to my wrists and feet.”

Vinyasa yoga is too fast-paced, so he has embraced yin yoga, a slower style. “It’s just the right mix of mindfulness and balance, and many poses are performed on the floor,” he says. Three days a week, he trains at Form Fitness in Palo Alto, Calif. To help his muscles avoid atrophy, he says “constant strengthening is crucial.” He uses a mix of free weights and machines and adds in high-intensity interval training, or HIIT, segments.

Mr. LeNail has a pool at his house and swims three to four days a week, mixing breaststroke and freestyle. “Swimming is the one intense cardio thing I can do,” he says. “It also loosens up my legs, which can feel very heavy at the end of the day.”

At least three days a week, he takes his golden retriever, Hazel, for a hearty walk on the trails of Coal Creek Preserve or Baylands Nature Preserve, both in the Bay Area. “Put me on a trail and the memory of my hiking days comes back,” he says. “I seem to walk, not effortlessly, but with more ease for a few miles.”

Mr. LeNail and Hazel on the trails of Pearson-Arastradero Preserve in Palo Alto, Calif.
Mr. LeNail and Hazel on the trails of Pearson-Arastradero Preserve in Palo Alto, Calif. Photo: Angela DeCenzo for The Wall Street Journal
The Diet

Mr. LeNail was born in France and jokes that as a Frenchman, he loves rich foods. He tries to curb his indulgences by fasting from 7 p.m. to 7 a.m. “It’s hard,” he admits. “Sometimes at 9 p.m. I really crave a cookie or some cheese. But I allow myself to eat well the rest of the day.” Breakfast is three eggs, and either oatmeal or granola topped with fruit and goat milk. Three days a week, he orders lunch from an Indian restaurant. His go-to is chicken curry with tomatoes and spinach. He refuels after a workout with an Odwalla vanilla protein shake.

He and his wife have a Sun Basket membership. The meal-delivery service ships ingredients and recipes that they prepare for dinner. Frequent meals include rainbow trout with a vegetable stir fry or salmon with sautéed kale. Mr. LeNail also enjoys cooking soups and quiches. His weakness is goat cheese.

The Gear & Cost

He wears Vibram FiveFingers shoes ($80) during Pilates and yoga. “They separate my toes and that gives me more ankle support,” he says. Lifting his feet takes extra effort, so he likes that Asolo Path GVS boots ($125) are lightweight while still delivering ankle and foot stability. He pays $29 per reformer class at Club Pilates in Palo Alto. His gym membership, which includes yoga classes, costs $169 a month and he pays $150 per physical-therapy session.

How Pilates Helps Fight Atrophy

As we grow older, our skeletal muscles tend to wither and weaken, a phenomenon known as sarcopenia. Muscle atrophy also occurs in people who suffer from spinal-cord injuries, stroke and neurological disorders such as multiple sclerosis, Parkinson’s disease and Amyotrophic Lateral Sclerosis, or Lou Gehrig’s disease, says Kara Flavin, a clinical assistant professor of physical medicine and rehabilitation at Stanford University.

“When the brain, spinal cord and nerves can’t talk to each other properly, they can’t send messages to our muscles,” she says. “As a result, our muscles can get smaller to the naked eye, weaken and have a tendency to get tighter.” Exercise, she says, can be the best medicine for age-related or disease-related muscle atrophy.

Pilates can be particularly helpful for people with stability and motor-related issues, says Jane Hein, a physical therapist and lead Pilates instructor at the Mayo Clinic Healthy Living Program in Rochester, Minn. “As our muscles deteriorate, our postural stabilizers that support our spine and trunk become weaker and suddenly, gravity poses a challenge,” she says. “Everyday activities like standing up straight and walking can become difficult. The risk of falls increases.”

She says a Pilates apparatus such as the reformer, which looks like a bed frame with a sliding carriage and adjustable springs, eliminates gravity, allowing people to perform strengthening exercises on their back, stomach and sides. Having your feet and hands attached to the reformer machine’s straps and pulleys while doing exercises provides proprioceptive feedback to the body’s neuromuscular system. “The person feels more safe and supported,” she says. “It opens up the entire body, so much so that people frequently say they feel taller after a session,” she says.

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