Neuromuscular Disease Exercise

Commit To Your Health Kerry Westfall contacted Ed Ferrell with what seemed a simple request. He wanted Ferrell to become his personal trainer.

The proposal wasn’t out of the ordinary. Ferrell worked at a fitness gym in Southern California and trained clients for a living. But Westfall’s situation was complicated:

At age 16, he had been diagnosed with the rare neuromuscular disease Friedreich’s ataxia, a progressive genetic disorder that causes movement problems and damage to the nervous system. According to the National Institute of Neurological Disorders and Stroke, the disease leads to degenerative-muscle coordination that can also cause, among others issues, heart and spine problems. About one in every 50,000 people in the United States inherits Friedreich’s ataxia.

Ferrell accepted the challenge of training Westfall, who happened to be at a critical moment in his life. After having dealt with his condition for 12 years, he’d hit a low point. He’d recently been laid off from his position as a software engineer at Microsoft, and faced the stress of feeling his disease worsen.

“I started going to the gym because I could feel myself getting weaker,” said Westfall, who began lifting weights in 1998. “ I was going maybe three or four times a week and working with Ed. We clicked right away. He used to work for Microsoft, also, and he had a unique way of explaining exercises and muscle use.”

Knowing that his new client was a wheelchair user, Ferrell was able to tailor resistance workouts to Westfall’s abilities and needs.

“Kerry wanted to come in and get some tone and strength to delay the onset of what was happening, as much as he could,” Ferrell said. “We worked a lot with posture, as that’s one of the problems he and others with the disease tend to have. When muscles are toned, they hold you in position. When posture is poor, then it affects breathing, which is bad for heart and blood distribution, so all kinds of challenges can come into play.”

Proper nutrition is also a key part of health rejuvenation, said Westfall, who began his strict strength-building regimen in 2004 by adopting a healthier diet.

“When you’re sedentary or don’t have the ability to exercise, weight gain becomes an even bigger issue,” Ferrell said. “You can’t burn as many calories, so you really have to watch what you eat.

Once he committed to a disciplined routine of rigorous exercise and sensible eating, he began to notice positive results that were also evident to others.

“Every time I went to the gym, people would stop in their tracks to watch me work out,” he said. “Someone would often approach me afterwards, just to tell me how inspiring I was to them.”

Motivated by his own positive development, Westfall began to realize that others with neurological conditions could take better control of their lives, if presented with the right information. He began to discuss with Ferrell the possibility of developing a workout DVD that would showcase their insights.

“Over the course of his own workout experience, Kerry saw a lot of progress and felt really good about it,” Ferrell said. “I think that’s where he got the idea of doing the DVD. He thought, This is great, this is working for me, and everybody should be doing it—not just people who have a disability.”

After trainer and client outlined their goals for making the project, Westfall enthusiastically set about convincing his team of doctors to contribute their expertise to it. He even hired a professional film crew.

The resulting team effort became the workout DVD Commit to Your Health on which neurologist C.R. Smith, MD, discusses how a fitness program promotes rehabilitation of muscular neurons; nutritionist Edward F. Group, III, MD, walks the viewer through meal planning; and David Mitzner, MD, sheds light on osteoporosis and heart maintenance.

Proceeds from the DVD go to the Westfall Foundation, a 501(c)(3) tax-deductible organization the filmmaker established to help others acquire the tools needed to enhance and prolong their lives.

A lot of people don’t grasp the benefits a program of this nature could offer someone with a neurological disease, Westfall said. “If someone has a condition, it’s not the finish line. If anything, it’s a call for them to do more.”

Though he’s upbeat about his health these days, he admits to having struggled with depression shortly after his diagnosis. That sense of futility, Westfall’s doctors say, is not uncommon among those battling Friedreich’s ataxia.

“Many individuals become angry and frustrated,” Smith says during a segment of Commit to Your Health. “They get angry because the disease has robbed them of their independence, and they get frustrated because doctors can’t always give them relief. People around them don’t really understand what they’re going through.”

Westfall, who says his outlook is improved considerably by regular exercise and a healthy diet, now has higher hopes for the days ahead. “I’m finding all sorts of health benefits from my exercises,” he said. “Exercise applies improves everything I do.”

Ferrell says that, for many people interested in improving their health, the biggest challenge is arriving at the right exercise program.

“Sometimes there are too many alternatives for people,” Ferrell said. “As a result, they get confused and ultimately don’t do anything.”

He says that some exercisers will benefit from the social aspects of a gym membership, while others will do well with workout machines at home. Ferrell, although admittedly biased, asserts that one-on-one training has superior benefits:

“The workout you get from a personal trainer is focused, private and offers exercises tailored to your needs,” he said. “So you accomplish your goals and make progress while being held accountable.” But at the end of the day, the bottom line is exercise and eat well.

Westfall says he hopes his DVD inspires others with diseases or disabilities to awaken to their own possibilities and take control of their health.

“I’m in a wheelchair, so it’s not easy for me to do any of the exercises,” he said, “but I do them. If I can do them, anyone can.”

by Josh Pate


Excerpts from the Quincy Jones Issue Oct/Nov 2011:

Susanne Bruyère, PhD — Creating Possibilities at Cornell

Virginia Jacko, CEO — Blind Visionary

Quincy Jones — Renaissance Man and More

David Zimmerman — Sharing the Spotlight

Michelle Sie Whitten — Things Are Looking Up

Still Swinging — An Inside Look at Adaptive Golf

Workout DVD — First You Get Off the Couch

Humor Therapy — Coupons Are For Suckers

Articles in the Quincy Jones Issue; Humor — Coupons Are For Suckers; Ashley Fiolek — 2011 Women’s Motocross Champ!; Sen. Tom Harkin — Working For More Jobs; Cinderella — A New Spin on an Old Tale; Still Swinging — An Inside Look at Adaptive Golf; Susanne Bruyère, PhD — Creating Possibilities at Cornell; Virginia Jacko, CEO — Blind Visionary; Meet the Biz — Actors Training Actors; PAWS/LA — The Sick and Elderly’s ‘Best Friend’; Quincy Jones — Renaissance Man and More; Michelle Sie Whitten — Things Are Looking Up; Workout Dvd — First You Get Off The Couch...; The Old Guard — A Change is Gonna Come; OCD — From Pain to Published Author; ABILITY's Crossword Puzzle; Events and Conferences... subscribe

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