Inactivity, such as bed rest and even sitting for long periods of time, can worsen muscular dystrophy (MD). Remaining physically active can keep you in the best condition to do everyday life activities.
Prof Basil T. Darras, a neurologist from Harvard Medical School, describes muscular dystrophy (MD) as “an inherited disorder that causes progressive muscle weakness (myopathy) and atrophy (loss of muscle mass) due to defects in one or more genes required for normal muscle function”. While there are more than 30 different types of MD, each with their own symptoms, the primary symptom for most types is muscle weakness.
With research indicating that physical activity and moderate-intensity, low-resistance exercise help to improve strength and endurance in people living with MD, it’s very important to include an activity programme as part of your health-care team’s overall treatment plan.
As yet there’s no known cure for MD, although some trial-stage drugs may slow or delay the progression. For now, treatment focuses on preventing complications due to the effects of weakness, decreased mobility, contractures (loss of elasticity in the joints), spinal curvature (scoliosis), heart defects and breathing problems.
Depending on your type of MD, your symptoms may be mild and progress slowly. However, there may be a rapid progression, which results in severely reduced muscular strength and endurance, hence the need to stay as physically active as possible.
The benefits of exercise
According to the US Muscular Dystrophy Association (MDA), many people with MD find various types of exercise both psychologically and physiologically beneficial. The most important thing though, is to find the most appropriate exercise or physical activity for you.
If you have MD, you’ll benefit from exercise because it:
• Reduces stress and provides a brief escape from your illness
• Enhances relaxation, especially when done as a recreational activity
• Prevents muscle mass loss so you can remain mobile for as long as possible
• Strengthens your cardiovascular system while you’re still able to exercise comfortably
Finding the right expert
Fitness professionals, physical therapists and personal trainers are able to create an appropriate programme for those living with MD to increase muscle strength, power and endurance while also focusing on flexibility.
Make sure your fitness professional or physical therapist has experience and knowledge of working with MD. Here is why it’s important:
• An appropriate personal trainer/therapist should know the characteristics of your specific dystrophy and also understand the process and patterns of weakness.
• This knowledge will enable him/her to properly assess, test and devise an activity programme best suited to your capabilities and limitations. In addition, the personal trainer will devise creative ways to keep you motivated to continue exercising.
• Exercising under the supervision of a trainer or physical therapist will ensure you don’t become too fatigued or overexert already weakened muscles and damage them further.
• Trainers or therapists will know how to use assistive equipment properly or adapt an activity if you have problems with contractures (loss of elasticity in the joints) or weakened muscles, which make it difficult to maintain your posture.
• Stretching and strengthening exercises will focus on keeping your body as upright, flexible and mobile as possible. Contractures mainly affect three areas – ankles (Achilles tendon), hamstrings (knee flexors) and the IT bands (hip flexors).
• The therapist or trainer will consider all aspects of your particular dystrophy to ensure your exercise programme is safe and effective. This will include factors such as intensity, type and exercise as well as psychological and environmental aspects.
An exercise programme for an individual with MD should include:
• Cardiovascular conditioning (only if your doctor has specifically recommended it as safe)
• Strengthening (only if recommended by your doctor)
• Stretching (flexibility), which incorporates range-of-motion (ROM) exercises
The MDA and the US National Center on Health, Physical Activity and Disability offer these exercise guidelines:
• Cardiovascular (aerobic) exercise aims to raise your heart and breathing rates. Cardiac problems are very common in several forms of MD and can limit your capacity to exercise. Always see a cardiologist before you start a prescribed exercise programme that includes cardiovascular training.
• Depending on your capability, aerobic activity options include cycling, rowing, swimming and walking.
• Aim to do aerobic activity sessions of between 20 to 40 minutes four to six days a week.
• Even leading experts aren’t sure whether muscles affected by MD can be improved by strengthening exercises. However, Hiroshi Mitsumoto, director of the Eleanor and Lou Gehrig MD Center at Columbia University Medical Center in New York, remarks that decreased muscle activity through disuse can result in weakness and muscle shrinking (atrophy) greater than that caused by MD itself.
• Your trainer or therapist should prescribe strength training for unaffected muscles. When doing any strength training or weight lifting, work under the guidance of your trainer or therapist. Remember to start slowly and only use very light weights.
• Stretching exercises are aimed at increasing range of motion, improving joint mobility and preventing contractures, a symptom commonly associated with MD. Any area of weakness in your joint structures (i.e. muscles, ligaments and tendons) is prone to tightness or contracture. When you don’t use your joints and muscles, contractures can hamper regular activities and affect movement in your neck, arms, hips and legs.
• Make sure you stretch all joints in your body, especially if you have a weak area in your arms, neck or legs. Do stretching exercises every day, on your own if you can, or with the assistance of a physical therapist or trainer if necessary. Stretch/hold each position for roughly 20 seconds.
As your illness advances, don’t get discouraged if you may need to reduce or modify aspects of your exercise programme. Remember to continually update members of your healthcare team about your exercise so they can adapt it if necessary to maintain your mobility and safety.
Six exercise precautions:
• Never push yourself past the point of fatigue – excessive fatigue can actually worsen muscle weakness. Prevent this by resting briefly whenever necessary during exercise.
• Stop if you experience signs of fatigue, i.e. excessive cramping, shortness of breath or unusually heavy sweating during exercise.
• Reduce your risk of harm – avoid training in extreme temperatures, exercising when you feel ill or fatigued, and moving a limb past the point of pain.
• Repeat each exercise at the level you find comfortable and tolerable.
• If you feel worse after an exercise activity or still sore the next day, then you’ve overdone it.
• Listen to your body: if exercise causes pain, STOP. If you’ve trained a specific muscle group, rest for at least 48 hours. Reduce intensity, duration or both if you experience muscle cramps during an activity.
1. Muscular Dystrophy Association (US) Website: www.http://mda.org
2. “Overview of muscular dystrophies – Beyond the Basics” Website: www.uptodate.com
4. Green, J. “Fitness training for clients with muscular dystrophy” National Center on Health,Physical Activity, and Disability (NCHPAD) Website: nchpad.org
5. Muscular Dystrophy tip sheet. Active Living Alliance for Canadians with a Disability (Public Health Agency of Canada)