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Physical therapy and the early stage of Duchenne (diagnosis - age 7)

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Is active exercise beneficial or harmful?

The role of active exercise and, in particular, strengthening regimes for boys with Duchenne is controversial. Proponents of active exercise believe that it is a very important part of a young man’s life and contributes greatly to his health, feelings of wellbeing and the development of sensory motor skills, which are important for future learning. Allowing the long bones to bear weight also helps improve bone density and bone strength. This is important for boys with Duchenne, as their bones tend to be naturally osteoporotic and even more so when taking steroid medication.

In the early years of his diagnosis, it’s important for a child with Duchenne to be exposed to a wide range of activities that enhance his physical, social and emotional development. Activities such as bike riding and swinging strengthen his gross motor skills before he reaches the peak of his strength and skill acquisition. Other activities include ball games and sensory-motor programs at his preschool or kindergarten. All of these provide good opportunities for learning and encourage the development of balance and coordination. Of course, activities will need to be adapted as a young man loses strength or find activities tiring. The proviso for all activity is that a young man with Duchenne should not be encouraged to do more than he is able, and that he should not become tired.

Because there is now a greater understanding of the role that dystrophin plays in the maintenance of cell-membrane integrity, especially during muscle contractions, physical therapists believe that resisted exercise regimes which include eccentric exercise, which increases stress on muscle and increases degeneration should not be a part of Duchenne management programs. In most homes and educational settings, participating in normal, developmentally appropriate activities and simply keeping up with his peers will provide sufficient exercise. Muscle strengthening exercises are believed to be damaging to muscle as well.

Physical therapists can recommend activities to give a young man with Duchenne suitable active exercise. Evidence from studies of the mouse model of Duchenne strongly suggests that some forms of exercise are more likely to cause muscle-fiber damage than others, especially activities that involve high-load, eccentric exercise. (In eccentric exercise, the muscle fibers lengthen while firing.) Land-based activities, especially ones that require a lot of running or walking on slopes or stairs, are much more taxing on muscle fibers. Conversely, water exercises are concentric, which means muscle fibers are shortening when they fire. With gravity eliminated, the stress on the muscles is reduced.

Physical therapists of boys with Duchenne often recommend hydrotherapy, which is aquatic physical therapy, from a very early age, if it is available. Early sessions will most likely concentrate on water familiarization, learning to swim, to float, and to be independent and safe in the water. Parent Project Muscular Dystrophy (PPMD) advises parents and caregivers to enroll their son in group sessions with children of similar abilities rather than regular learn-to-swim classes, which may place too many demands on boys with Duchenne. Individual coaching with a PT, parent or friend is often most successful. Swimming is thought to benefit muscle strength, increase endurance and it also provides excellent work for the respiratory system.

Another recommended activity that is an example of non-load bearing exercise is bike riding. It has the added advantage of permitting a boy with Duchenne the experience of speed that he might not otherwise enjoy.

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What about steroid medication?

Many boys take steroid medication, which is known to preserve muscle strength and functional ability much longer than would be possible in the normal course of the condition. The reason why steroids preserve muscle power and function is still not fully understood. Many parents ask for advice on the amount and type of active exercise that these more able boys should be doing. The advice given to parents of all boys with Duchenne, whether or not they are on steroids, is still applicable. Recommendations include balancing activity with restful occupations and never pushing the child to try harder or do more than he himself willing to do. In other words, let him self-monitor his level of activity. Endeavor to make the hardest work he does low-load, concentric exercise such as swimming. Try to minimize the harder work for his muscles (eccentric) by eliminating heavy work on stairs and slopes.

Parent Project Muscular Dystrophy encourages parents to permit their son to join peers in sports and other team activities as long as he has plenty of scheduled time-outs, substitutions or reduced demands. In soccer, for instance, the goalie position allows a young man to be part of the team without excessive energy demands. If a child is required to walk long distances to and from the activity, please provide an alternative means of transport, such as a bike, motorized scooter or simply a car ride to the destination so that he can enjoy the activity to the utmost when he arrives.

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What about stretches?

A regular stretching regime to keep muscles and tendons supple should be part of a young man’s daily routine in order to help prevent the development of contractures.

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What are contractures?

Contractures are a tightening of the muscle and tendons, which limit the full range of movement in a joint. They are inevitable if a regular stretching program is not part of a boy’s daily regime. This tightness occurs because not all muscles lose strength at the same time or pace, and boys with Duchenne develop irregular postures to compensate for this uneven weakness. The postures, which they habitually assume to improve their function, will inevitably lead to more tightness in some muscles and the eventual development of contractures. Ensuring that his joints are moved regularly through their full range, with gentle pressure at the end of the range, minimizes the risk of contractures. The pattern of weakness and tightness is very predictable in Duchenne, and your therapist will provide an appropriate stretching program to be performed either at home or school. Parents’ commitment to a regular daily stretching program will bring their son the best results and maintain his flexibility.

In PPMD’s experience, stretching programs are more successful if they are part of an established, regular routine. Boys with Duchenne often resist change and value routine and order in their lives. For this reason, PPMD recommends that stretching programs begin as soon as the Duchenne diagnosis is made and be continued without fail (within reason) every day at the same time. If possible, a stretching program should follow a pleasant warm-up activity such as a bike ride, a massage or warm bath, and then be paired with a special activity that the young man especially enjoys. Some suggestions from parents include making it your son’s special time alone with his parent when he can share the events of the day. It’s important for a parent to explain the stretching process and ask their son to help get the best result rather than create resistance. For example, when doing a calf stretch, explain that he needs to bring his toes up towards his nose as far as possible. Ask if he can help. This represents an assistive active exercise. By being asked to help, at the very least, he may not resist.

Ask your son to help by counting the duration of the stretch. Alternatively, he could time the stretch with a favorite song or rhyme. Another suggestion is to play games, which act as a distraction. These can be any favorite game or can include the goals of other therapies (i.e. speech therapy: going through sounds, initial, middle and ending sounds of words, and phonics; or playing “I Spy,” number games, etc.). In fact, anything that you can think of to distract him from the stretch may be helpful.

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What should we be stretching?

In the early years of Duchenne, a boy’s calf muscles will most likely tighten first. A PT will teach you stretches for this group of muscles. These stretches are sometimes called heel-cord or tendo-Achilles stretches, and they can be accomplished in a variety of ways, some of which are demonstrated on a DVD available from PPMD. You will also need to check the hamstring muscles, at the back of his thigh, and the iliotibial band, which runs down the outer side of the thigh. Also, in the early years, a boy’s ankles may be the only joints that require stretching. Your PT will assess his range and include only the stretches needed at the time.

There are many ways to stretch, ranging from active self-stretches and passive self-stretches to manual stretching performed by a parent or assistant. The suggestions recommended on the DVD from PPMD are a good starting point. Your PT may have favorites of his or her own.

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Can I do any harm when stretching?

You will need to be very well-instructed by your therapist to ensure that you understand the best holds and positioning. It’s important that you make good use of your own body mechanics, not only to make the job easier for you, but also to protect your own muscles from injury. As a guide, refer to the selection of stretches offered on the second disc of PPMD’s DVD under physical therapy for instructions on holds and positioning.

Both of the sections on PPMD’s DVD contain a sample of stretches only; your primary physical therapist may have his or her own preferences, too. Whatever you choose, there are some basic important guidelines for effective manual stretching. They are:

  • Position the child to ensure that he is well-supported and comfortable
  • Stabilize the joints that are not being moved by following the recommended holds
  • The intensity of the stretch should be sub-maximal and should never cause pain; however, the stretch should be felt. Applying a little pressure at the end of the range should be sufficient. The discomfort felt should be like that experienced when doing a good sports stretch. If the child resists strongly, then you should employ another method. How long to hold the stretch remains a debatable point, as there is very little research evidence pertaining to Duchenne. Practitioners from centers around the world all make different recommendations. However, we do know that the longer a young man can hold the stretch, the better, as a prolonged stretch permits the muscle spindle to habituate to the new length and allows the lengthening reaction to occur. It is also thought that in Duchenne we are trying to prevent scar tissue from forming in a shortened position, as it is this inelastic, tight scar tissue that contributes significantly to loss in range. Most parents are able to hold a sustained manual stretch for up to 30 seconds and repeat the same stretch 3 times. In these early years, both active and passive self-stretching techniques can provide a longer more sustained stretch. (Again, these are demonstrated on PPMD’s DVD.)
  • Take care not to overstretch. Your physical therapist will explain normal ranges and expectations for your child. A stretch can be managed better if it begins gently and increases slowly to the maximum intensity without causing pain. If you meet with active resistance, use some distractions, as the lengthening contractions due to resistance can cause damage to the muscle fibers.

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Should my son wear night splints at this age?

Doctors or physical therapists often recommend night splints as soon as a doctor confirms the Duchenne diagnosis. If a young man tolerates night splints well, this can be a wonderful start to accepting splinting as a “regular thing.” Night splints or ankle-foot orthoses (AFOs) hold the feet in most comfortable desired position for the duration of your son’s sleep, keeping his feet from being weighed down in the opposite direction by bedclothes.

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What about the respiratory therapy and assessment?

Respiratory function in the early years of the Duchenne diagnosis is normal. No change is expected until around 10 years of age, or later if the young man is on steroid medication. PPMD recommends that you visit your pulmonologist once at this stage for a baseline assessment. Physical therapists may take the opportunity to introduce simple activities that promote full expansion of a young man’s lungs and mobility of his chest wall. These activities will also accustom the child to tasks similar to those needed when testing respiratory function. Read more about the topic of respiratory therapy and assessment in the middle stage of Duchenne

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