Physical Therapy in Duchenne Muscular Dystrophy

Physical therapy is one of the most consistent threads of Duchenne muscular dystrophy care from diagnosis onward. It will not stop the disease, but it can preserve range of motion, delay contractures, support mobility for longer, and reduce pain. The right routine looks different at age four than at age fourteen, but the principle is the same: maintain function while protecting fragile muscle from harm.

This post is a practical overview of what PT in DMD typically includes and what families can ask of the rehabilitation team.

Why PT matters in DMD

The muscle damage in DMD is mechanical as well as biochemical. Without functional dystrophin, muscle fibers are more vulnerable to injury from ordinary contraction, especially under load. Over time, weaker muscles are also less able to keep joints through their full range. Tendons and connective tissue shorten. Contractures develop, first in the ankles, then knees, hips, elbows, and other joints.

The 2018 international care considerations describe rehabilitation as a core, lifelong component of DMD care, not a phase. (Birnkrant et al., Lancet Neurology 2018, Part 1)

Stretching and contracture prevention

Daily stretching is the practical center of rehabilitation in DMD. The Achilles tendon is usually the first focus because calf shortening shows up early and limits ankle dorsiflexion needed for walking. Other priority joints include the hips, knees, elbows, wrists, and fingers as the disease progresses.

Parent Project Muscular Dystrophy and similar patient organizations publish home stretching routines developed with physiotherapists. (PPMD, Rehabilitation and Physical Therapy)

Typical features of a stretching program:

• Daily routine at home, 10 to 20 minutes, with sessions adjusted to the child’s tolerance.
• Periodic in-clinic visits with a physiotherapist familiar with neuromuscular disease, often every one to three months.
• Stretches held gently, without bouncing, and without forcing past the patient’s comfort.
• Progression of focus over time as new joints become priority.

Consistency matters more than intensity. A modest routine done daily beats a maximal routine done occasionally.

What activities to avoid

In DMD, exercise that loads muscle eccentrically, meaning while the muscle is lengthening under tension, can cause more damage than benefit. Examples include heavy resistance training, jumping repeatedly onto a surface, running downhill, and high-intensity workouts with quick stops.

This is one of the few areas in pediatric medicine where “more exercise” is not always better. The dystrophin-deficient muscle does not respond to overload by getting stronger. It responds by getting injured. (Exercise and rehabilitation in DMD, PMC review)

Care teams generally advise against:

• Maximal-effort weight training.
• Sustained eccentric loading (downhill walking, plyometrics).
• Activities that produce delayed-onset muscle soreness lasting more than a day.

What activities may help

Low-intensity, sub-maximal activity is generally considered safe and may help maintain conditioning and mood.

Common recommendations include:

• Aquatic therapy and swimming, where buoyancy reduces joint load.
• Easy cycling at a comfortable cadence.
• Walking within the child’s normal range.
• Adapted sports that respect fatigue and avoid eccentric loading.

The right level of activity is the one the child can do without soreness the next day.

Splinting, bracing, and orthotics

Stretching alone is rarely enough. Night ankle-foot orthoses, often called night splints, are commonly used to hold the ankles at neutral and reduce calf shortening during sleep. Daytime orthoses may be used selectively as ambulation becomes more difficult.

Standing programs, using a standing frame for a portion of the day, can also help maintain hip and knee range and bone health after a child stops walking independently.

For background on bone health considerations during this transition, see bone health in DMD.

Adapting as DMD progresses

The physiotherapy program changes as the disease changes.

Early childhood: focus on play-based mobility, ankle stretching, and family education.

Later childhood: structured stretching, swimming, school-based PT support, gait monitoring, transition planning for assistive devices.

Loss of independent ambulation: power mobility training, upper-extremity range, sitting tolerance, posture, scoliosis surveillance, and continued lower-extremity stretching even without weight-bearing.

Adolescence and adulthood: upper-extremity preservation, equipment fit and reassessment, integration with respiratory and cardiac care plans.

For the broader picture, see DMD standards of care and DMD transition to adulthood.

Working with the rehabilitation team

A physiotherapist familiar with neuromuscular disease is part of standard multidisciplinary DMD care. Occupational therapy adds upper-extremity function, fine motor skills, school adaptations, and daily-living equipment.

Families benefit from a written home program, periodic reassessment, and a low-friction way to ask questions between visits. If a recommended activity causes new pain or prolonged soreness, that is worth reporting to the team before continuing.

What is still uncertain

Optimal frequency and intensity of specific stretches, the role of newer adjunct therapies, and how disease-modifying treatments will change rehabilitation goals over time remain active questions.

The reasonable framing is that physical therapy in DMD is preventive and supportive, not curative. The decisions belong to the rehabilitation team working with the rest of the multidisciplinary care plan.

For related reading, see respiratory care in DMD, bone health in DMD, and DMD standards of care.

Disclaimer: This post is informational and does not constitute medical advice. Decisions about diagnosis or treatment must be made with a qualified care team.