Move it, stretch it, flex it, lift it, hit the water — just say YES to exercise
Why should having a neuromuscular disease exclude you from exercise and all its benefits?
Perhaps you’re not aware of what forms of exercise you can do, given your abilities. Maybe you have questions and doubts about the intimidating prospects of starting an exercise routine. Or perhaps you’re in the “What good will it do me?” frame of mind.
|Gail Ableman, who has Friedreich’s ataxia, exercises to help maintain strength in her upper body and keep her weight down.|
Jackie Montes, a physical therapist at Columbia University’s Eleanor and Lou Gehrig MDA/ALS Research Center in New York, encourages physical activity with your doctor’s approval.
“The goal of exercise is not to build muscle, but to improve function and avoid the complications of weakness,” Montes says.
Those who exercise enjoy many benefits (see “Benefits of Exercise”), including continued mobility, improved endurance, better cardiovascular health and a sense of well-being.
Here, seven Quest readers, ages 15 to 54 and all affected by neuromuscular diseases, share how and why they exercise — and the results they’ve experienced.
Gail Ableman, of Spokane, Wash., has good reason to work out. The 48-year-old, who has Friedreich’s ataxia, wants to keep her upper body strong so she can continue living alone.
Ableman’s daughter, Sami, encouraged her to start exercising in order to improve her health. In two years’ time, Ableman, who also banned junk food from her diet, dropped 60 pounds and gained a whole new way of living.
Ableman exercises five days a week at a gym. There she works with personal trainer Savanas Xavier, who helps her do triceps extensions, leg curls and stretching exercises for her back, chest and shoulders. Other exercises aid her in maintaining her strength for transferring, and she lifts weights above her head.
Before Ableman started exercising, she says, she’d get sore and fatigued simply reaching for objects overhead. Not anymore.
“My blood pressure is normal for the first time since I can remember,” she notes. “I can lift my arms up above my head now. I can’t tell you how much better I feel.”
Ableman used to rely on a hospital bed and other equipment to get up each morning. Now she’s sleeping in a regular bed for the first time in six years, and can transfer herself unaided. Her advice for those without access to a gym: Purchase light free weights or use resistance equipment like Thera-Band elastic resistance bands used in strength training and rehab.
|Bill Bowden uses a stationary bike in his daily workouts at the YMCA.|
Bill Bowden, of Tampa, Fla., worked for 25 years at IBM. After getting medical disability income at 46 because of his Charcot-Marie-Tooth disease, Bowden found himself with time on his hands. A friend recommended that he start working out, and Bowden went to his local YMCA to see what they could offer. That was three years ago, and he’s been exercising ever since.
Bowden works out three days a week at the YMCA for a few reasons. “I do it out of fear. I know that if I sit around and do nothing my condition will progress,” he says. “It makes me feel good and is a wonderful social outlet.”
Bowden works his chest, back and arms with an upper body stationary bike from SciFit, which he powers with his arms for 15 minutes. Then he switches to a leg exercise bike, pedaling it for the same amount of time. Another form of exercise is taking his lovable pug, Peaches, for walks a few times a day.
“I think it’s important to get your body moving, but you have to distinguish between a good workout and going too far,” he says. Too hard a workout spelled trouble initially for Bowden, who fell a few times. Now he listens to his body more closely while exercising.
“It clears my mind and gives me a feeling of accomplishment. And maybe it will keep my CMT from getting worse.”
|Helena Madsen finds pool exercises give her more energy during the day.|
Helena Madsen, of Arlington Heights, Ill., has limb-girdle muscular dystrophy. Though she’s always been able to walk, using a treadmill for exercise became increasingly difficult over the years as her abilities changed. She just couldn’t walk fast enough for a good cardiovascular workout.
When she began experiencing tendonitis in her shoulder and hip, Madsen tried warm water therapy at the Rehabilitation Institute of Chicago. A physical therapist developed a program that alleviated her pain. Madsen enjoyed her pool exercise program so much that when her physical therapy was completed, she found another program closer to home at the Wellness Center of Northwest Community Hospital.
Madsen, 40, starts each weekday at 5 a.m. by working out at the pool. Using the water’s gentle resistance and either a kick board or bars installed in the pool, she exercises her legs and arms. Her routine includes leg kicks, bicycling in the water and range-of-motion exercises for her upper body.
The result? “I feel so much better during the day,” says Madsen, who adds that she’s toning up and has more energy.
“It was a big eye opener to see quadriplegics with little strength gaining some movement while exercising in the water,” Madsen says. It’s a testament that any form of exercise, however small, is good, providing not just a physical benefit, but an emotional one as well.
What motivates her to exercise? Madsen and her husband, who works out in the same hospital complex, have decided to adopt a child from China next year.
“I need to get in shape for motherhood,” she says. “It’s not just about me. It’s for the benefit of my family.”
|Kelly Treece makes sure his arm curls don't overstress his muscles.|
Kelly Treece, 30, started working out three years ago and enjoys the benefits it brings him daily.
Treece, who has Friedreich’s ataxia, goes to Gold’s Gym four days a week in his hometown of Dupo, Ill. With the aid of a friend, he gets out of his wheelchair and onto an exercise bike where he rides for 15 minutes. This range-of-motion exercise for his legs gets his spirits and heart rate up.
Treece does leg presses to maintain his leg strength, too. When he started he was doing three times his weight, but his body dictated that he exercise using less weight. He also lifts weights to strengthen his upper body.
“Stretching and working out makes a big difference,” he says. “I can definitely tell the difference when I can’t come in to the gym.”
Treece started working out almost by accident. He took an exercise class in college to improve his grade average, but when he felt so much better after a workout he decided to continue the routine after college.
Call it a fluke or serendipity, Treece welcomes the life change.
Josh Jackson has Duchenne muscular dystrophy, but don’t tell his body that. The 15-year-old from Hoover, Ala., exercises because he wants to continue to walk and get up from a seated position with ease.
Jackson, who uses a power wheelchair at school,has made exercise and physical therapy a way of life for the last three years. Every other day Jackson uses light free weights of 1 to 3 pounds, then completes his resistance exercises with an elastic therapy band and ankle/heel stretches.
Jackson exercises his mind with self-discipline, too. “Determination is the reason I exercise, which is why I’m fighting my disease so well and can continue to walk at 15,” he maintains.
His physical therapy includes stretching his hamstrings, hip flexors and the iliotibial band, the fibrous tissue that begins at the hip and extends to the outer side of the shin bone just below the knee joint. Jackson believes these exercises, which his mother helps him perform, prevent contractures. For good measure Jackson also takes calcium, vitamin D and other supplements.
Christopher Ney, of Bridgeton, N.J., enjoys being active. Despite his diagnosis of Becker MD at age 11, Ney’s parents encouraged him to play with neighborhood kids, including playing football and wrestling. At 17, Ney joined the military and even went through boot camp. His upper body strength was exceptional, but his legs slowed him down, he says.
At 36, Ney still maintains his upper body strength by doing 100 push-ups and 150 crunches every morning. His conditioning is so good that he doesn’t feel any soreness after working out. Ney’s doctor gives him his blessing to continue as long as he doesn’t feel any pain.
Ney also uses an elastic band to exercise and strengthen his legs. The exercise also has helped him drop weight and become more active.
“I’m trying to keep my core muscles strong,” he says, knowing that once you lose muscle, it’s gone for good. Ney shares his positive energy and attitude by volunteering with the local MDA Becker MD support group.
|Pam Rhatigan makes time for exercise at a nearby university disability resource center.
Pam Rhatigan once had a hectic schedule that involved working on her doctoral degree in clinical psychology, raising a family and working as a psychologist. There was no time for exercise. Then in 1992, with her health deteriorating due to her spinal muscular atrophy (type 2), she made a life change.
In her hometown of Tucson, Ariz., she discovered the University of Arizona’s Medical Disability Resource Center, which has an adaptive sports gym featuring exercise equipment modified for wheelchair users.
A physical therapist at the gym evaluated Rhatigan’s abilities and created an exercise program for her. Rhatigan, now 54, works out for an hour twice a week with the help and support of the university’s physical therapy students.
“I do it to be as healthy as I can be. I know I’ll feel better afterwards.” Her routine consists of using elastic tubes on her arms for gravity-reduced active and assisted exercises. She also does range-of-motion and stretching exercises right from her chair, avoiding the need for transfers.
Though driven to keep exercising because of the energy it brings her, Rhatigan doesn’t push it.
“I don’t exercise to the point where I feel pain,” she adds. While she’s usually tired at the end of her routine, she rests for 15 minutes and soon notices a surge in energy.
“It feels good,” she says.
David Von Hatten is a freelance writer living — and now exercising again — in Austin, Texas. He has SMA3.
Don't forget to check out Quest April-June 2009, in which we revisit the topic of exercise with all new stories and tips from medical professionals and readers alike.
Before you begin to exercise you must talk with your doctor about what kinds of exercise might be best, given your neuromuscular condition or other health issues.
Physical therapist Jackie Montes, who recently presented a workshop on exercise for people with ALS (Lou Gehrig’s disease), says, “Exactly how much exercise is beneficial is still not clear.” Be sure to ask your doctor how often you should exercise, the duration of exercise and the level of intensity of your workout.
Remember that not everyone will receive the same level of benefits as the people in this article. Protection of your muscles must be your first priority.
Here are some general guidelines for starting an exercise program:
Avoiding fatigue or overworking your muscles is of primary importance. Experiencing soreness means that you’re doing too much, Montes says. Generally, it’s an indication that you’re tearing muscle and — for people with neuromuscular diseases — that’s not good.
For aerobic exercise, which helps improve the health of your heart and circulatory system, Montes suggests a stationary bicycle, upper body ergometer, elliptical machines or aquatics (for more about these products see “Exercise Resources”).
Also, consider multiple repetitions of resistance strengthening and stretching.
“It is important to start small and slowly and increase only when appropriate and by a very small percentage,” says Mike Haynes, an adapted health fitness instructor certified by American College of Sports Medicine and Disabled Sports USA. He’s executive director of the Lone Star Paralysis Foundation and former manager of St. David’s Wheelchair Fitness Center in Austin, Texas.
Here’s an example for someone who can comfortably lift a 5-pound free weight.
Start at 5 pounds, doing 3 sets of 10 for a week or more.
Then try 5 pounds, doing 3 sets of 12 for a while.
And then 5 pounds, doing 3 sets of 15…
Then move to a new weight such as:
If you can’t lift weights, moving your limbs through a range-of-motion is a starting point, or have someone help you.
“The ‘no pain, no gain’ motto made popular in the fitness community doesn’t apply to people with neuromuscular diseases,” Haynes says. He often recommends a muscular endurance program with low weights and medium to high repetitions, a cardio program, stretches, trunk exercises and rest.
Your goal should be to maintain functional strength, endurance and independence, and pain won’t help you get there.
Finally, “the most important aspect of starting and maintaining an exercise program is flexibility,” Montes says. “Be flexible, never rigid, with yourself and your exercise program.”
Your regimen might need to be modified based on your health and life’s daily obligations and responsibilities and to avoid overdoing it. Simply listen to your body and use common sense.
Access to Recreation
Adaptive Sports Association
National Center on Physical Activity and Disability
Aquatic Resources Network
Ex N’ Flex
SureHands Lift & Care System
Thera-Band Resistance Training
Top End (Invacare)
ACSM’s Exercise Management for Persons with Chronic Diseases and Disabilities, by J. Larry Durstine and Geoffrey E. Moore, American College of Sports Medicine, 2003, Human Kinetics, www.humankinetics.com.
Adapted Physical Education and Sport, other similar titles, 2005, Human Kinetics,