Profiles of People Who Exercise

People of different ages and different muscle disease symptoms describe their exercise routines

Article Highlights:

Profiles of people and their exercise routines:

  • Mary Gallo,  38, congenital muscular dystrophy
  • Jerry Huang, 11, congenital muscular dystrophy
  • Beth Bax, 39, Friedreich's ataxia
  • Ryan Levinson, facioscapulohumeral muscular dystrophy
  • Dani Anderson, 22, Charcot-Marie-Tooth disease
  • Nick Johnson, 45, Friedreich's ataxia
by Quest Staff on April 1, 2009 - 7:08am

QUEST Vol. 16, No. 2

Breathing Easier

In September 2008, Mary Gallo, 38, learned about a local pulmonary rehabilitation gym called Oxygym. She contacted her pulmonologist, who wrote a prescription for Oxygym’s restrictive lung program.

Mary Gallo

“Oxygym is the first place I’ve ever attended that focuses on both breathing and physical therapy. I found a workout program tailored to my medical needs,” says the Lindenhurst, N.Y., resident, who has congenital muscular dystrophy (CMD) with severe kyphoscoliosis and restrictive lung disease.

Gallo attends Oxygym for 90 minutes, three times a week. Each visit begins with a check-in, where her blood pressure and blood oxygen levels are checked.

Gallo works her arms by using a hand cycle, resistance band, and 3-pound weights.

She then spends 15 minutes on the treadmill, after which her blood pressure and blood oxygenation levels are checked again.

After the treadmill, she usually has a nutritional energy drink.

In addition to the leg press and leg curl machines, she does step-ups on a low aerobic-training step, while holding on to a bar. She hopes to advance to a stair-climbing machine.

The last stop is the breathing room, where she does group exercises to strengthen the muscles of the chest, back, neck and stomach.

In just two months at Oxygym, she’s doubled the volume in her lungs, notices more muscle mass in her arms and finds walkways and ramps easier to tackle.

“Since I’ve been attending Oxygym, I feel physically and mentally better, and I’m happier when I’m working out.”

Jerry Huang

Exercise Brought Him Independence, Happiness

Eleven-year-old Jerry Huang is a happy camper these days, and his new exercise program is the reason.

Two years ago Jerry, who has congenital muscular dystrophy, had tendon surgery to relieve severe contractures in his legs. He also began a physical training regimen that wasn’t much fun. “They had him doing things like throwing and catching balls,” said his mother Tina. “It was very tiring for him, and after 10 minutes he was ready to quit.”

Enter a new physical therapist at Jerry’s grade school in Los Angeles. She started him on a schedule of swimming exercises and yoga, and got him both a stander and walker. He now exercises and stretches twice a week in PE class for an hour at a time.

His mom says the change in her son has been incredible. “When he’s in the water, he can stand, he can walk, he can jump — all things he couldn’t do before. It has been so good for him.”

Jerry also doesn’t have to wear his full-length braces during the day anymore, just at night. “Now I can get out of my wheelchair and stand, and I can walk about 30 feet. And my mom doesn’t have to come with me to the bathroom anymore,” he says.

The change has been as much emotional as physical. His mom says when Jerry was younger, he was quiet and withdrawn. Now, with his newfound physical independence, and with mentoring from an aide at school, he’s become more outgoing and social, and he’s an honor student.

Beth on the Go

Once a week, working mother Beth Bax of Altadena, Calif., works out at 24 Hour Fitness, where she’s been a member since the early 1990s.

Beth Bax

An environmental engineer, Bax, 39, received a diagnosis of Friedreich’s ataxia in 1999.

Every other week she works with a personal trainer at the gym. “I originally signed up for sessions because I hadn’t exercised for over two years, and I needed someone to show me what exercises to do and make me accountable for showing up,” says Bax, whose neurologist supports her exercise routine.

She notes that for some people, a physical therapist might be a better alternative than a personal trainer.

“They’re better accustomed to people with disabilities and knowing their limits,” she says. “My trainer sometimes tries exercises with me that don’t work out.”

Bax’s visits, which usually last 90 minutes, start with a 15-minute warm-up on the gym’s stationary recumbent bike. Then it’s over to arm, leg, and back exercises with the chest, leg and calf press machines and the lat pulldown. Depending on the machine, the weight is usually 40-50 pounds, though heavier for leg lifts. And then there’s the 100 sit-ups.

It doesn’t stop there. Bax rides her TerraTrike recumbent tricycle around her neighborhood for an hour twice a week. She even takes it along on family vacations so she can ride with her husband, Eric, and their two children, Natalie, 7, and Sarah, 4.

“I recommend a recumbent trike if you can sit in a seat and be stable,” she says. “It’s a great feeling to be going downhill super fast, and it’s nice to do something on my own that I don’t need help with.

“Exercise is proven to get you in a better mood, and I don’t know anyone who can’t use that in life.”

Food Influences Performance, Says Multi-Athlete

Ryan Levinson

Most athletes devote themselves to one sport. But Ryan Levinson of San Diego isn’t most athletes.

Levinson, who has facioscapulohumeral muscular dystrophy (FSHD) and has weakness in his chest and leg muscles, excels personally and professionally at cycling, surfing, sailing, paddleboarding, kiteboarding, scuba diving, kayaking and the triathlon.

He builds up strength and skill in the pool, ocean, bay, beach, gym, and on the road. Aside from practicing his sports regularly, Levinson focuses on stretching all muscle groups, core strength and balance training, functional strength training with a combination of exercise physio balls, dumbbells, ropes hooked to cable weights, aerobics and swimming.

Levinson no longer runs because weakness in the muscles that give his knees and hips stability puts him at risk for injury, but his exercise program is designed to optimize his strength and aerobic fitness for his target events.

Working with a registered dietician, he found that a healthy diet has had a positive impact on his health and athletic performance.

His diet mainly consists of lean protein, vegetables, whole grains and raw nuts. He avoids processed foods and concentrated simple sugars, completely eliminating trans fat. Water is his beverage of choice during the day, and before going to bed and after waking up, he drinks a glass of whey protein, which is a mixture of whey concentrate, whey isolate and amino acids.

Levinson says he has found that good food helps his body compensate for some exercise stress. “Without good food, your athletic performance can actually decrease because your body’s ability to recover will be impacted.”

Taking a Martial Arts Approach

For six years, teenager Dani Anderson of Newbury Park, Calif., trained regularly in the martial arts discipline of tae kwon do. Her dedication eventually earned her a coveted black belt rating.

Dani Anderson

An integral part of reaching that level of accomplishment was exercise, day in and day out.

Anderson, now 22, is even more a standout in her moves because she has Charcot-Marie-Tooth disease and uses a wheelchair for mobility.

“My tae kwon do school created a special curriculum for me,” she explains. “We came upon ways for me to do kicks, punches, blocks, etc., from my wheelchair, equivalent to those the rest of the class was doing. When the rest of the class was doing push-ups, I would repetitively lift a weighted stick.”

Anderson is no longer a full-time martial artist because she’s attending school and working full time, but she still exercises regularly.

“I exercise at home by doing movements similar to those I did in tae kwon do. My physical therapist supports the exercise program completely, but she also encourages me to swim regularly,” she says. “Now I swim at the gym. I do laps as well as walk in the pool. Along with tae kwon do movements, I expect these exercises to maintain the muscle mass I already have, and build strength.”

No Resistance to Resistance Training

Nick Johnson, Waltham, Mass., has been a big proponent of working out since he was a teenager, including throughout the 26 years since his diagnosis of Friedreich’s ataxia (FA).

Nick Johnson

Now 45, Johnson, a mechanical engineer, still is working out, but has cut back on the types and frequency of his routines. “There’s no question that FA has taken its toll on my muscles,” he says. “But I still find value in exercising.”

These days he mainly uses machines like Life Fitness that utilize resistance training.

Johnson focuses on eight types of resistance training that exercise different muscle groups in his arms and legs. He goes for eight repetitions per type. Exercising once or twice a week, he relies on an attendant for help when at his health club, and his wife’s assistance when exercising at home.

In addition to resistance training, Johnson spends 30 minutes on a handcycle, and occasionally tosses and catches a medicine ball.

“Exercise helps me in two ways,” he says. “First, I feel it slows the rate of progression of my disease. Second, it helps me with my mind-to-body connection. It helps me maintain that, and it can help reduce the physical pain in my body.”

Both his physician and physical therapist approve of his exercise regime, as long as he does it in moderation and with assistance.

“My advice to anyone with a disability contemplating exercise is ‘just do it!’ Be responsible, but try to keep pushing your comfort zone. Try not to get frustrated if your body isn’t doing everything you wish it would.”

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