When people think about physical therapy with Duchenne muscular dystrophy, they often picture stretching exercises or clinic visits. But at the CureDuchenne FUTURES 2026 Annual Conference, physical therapists Doug Levine, PT, and Jennifer Wallace, PT , reminded families that movement and mobility encompass much more than muscles and joints. From equipment and exercise to school accommodations and daily routines, every aspect of care plays a role in helping individuals with Duchenne maintain function, independence, and quality of life.
The session focused on practical strategies families can use throughout every stage of the Duchenne journey, emphasizing proactive planning, individualized care, and the importance of staying ahead of potential challenges.
Download the full presentation FUTURES 2026 PT Presentation.pdf
Maintaining Mobility Starts Early
One of the key themes throughout the presentation was the importance of preserving range of motion before significant tightness develops.
Levine and Wallace discussed the use of ankle-foot orthoses (AFOs) , commonly called night splints, which help maintain flexibility in the ankles and feet. These devices are designed to hold the foot in a comfortable position for several hours each day, helping slow the development of contractures—permanent tightening of muscles and joints that can limit movement and function.
AFOs should be comfortable and customized to the individual whenever possible. The goal is not to force additional flexibility but to preserve existing range of motion over time.
Hand and wrist splints may also become important as individuals age and rely more heavily on upper extremity function. Maintaining flexibility in the hands and wrists can help support independence with daily activities, communication devices, and wheelchair controls.
Why Stretching Still Matters
Stretching remains one of the foundational components of Duchenne care.
While stretching may seem simple, Wallace explained that regular stretching allows families and caregivers to monitor subtle changes in flexibility before significant contractures develop. Early detection of tightness can help families work with their care teams to adjust stretching programs, positioning, or equipment needs before function is affected.
The speakers encouraged families to think of stretching not just as an exercise routine, but as an opportunity to better understand how their child’s body is changing over time.
Download daily stretching guide
Exercise: Finding the Right Balance
Exercise continues to be one of the most frequently discussed topics in Duchenne care, and recent research is helping clinicians better understand what types of activity may be beneficial.
The presenters explained that exercise recommendations for Duchenne are very different from traditional fitness programs. Rather than focusing on high-intensity workouts, heavy resistance training, or activities that push muscles to exhaustion, the goal is gentle, low-load activity that promotes movement without causing damage.
Examples discussed during the session included:
- Aquatic activities and swimming
- Assisted range-of-motion exercises
- Arm and leg cycling
- Gentle aerobic exercise
- Isometric exercises, where muscles contract without moving through a full range of motion
The presenters stressed that “more” is not always better. Families should watch for signs that activity levels may be too high, including prolonged soreness, excessive fatigue, swelling, or dark-colored urine, which can signal muscle breakdown and require medical attention.
The Benefits of Water-Based Activity
If there was one activity that received special attention during the session, it was aquatic exercise.
Wallace described water as one of the safest and most beneficial environments for individuals with Duchenne. The buoyancy of water reduces stress on muscles and joints while allowing movement that may become difficult on land.
Beyond the physical benefits, aquatic activities can provide valuable opportunities for social interaction and inclusion. As mobility changes over time, swimming pools often become places where individuals with Duchenne can continue participating alongside friends and family members.
The presenters encouraged families to focus on water safety and enjoyment rather than competitive swimming, emphasizing that simply moving and playing in the water can provide meaningful benefits.
Choosing Equipment That Supports Independence
The session also explored the wide range of mobility equipment available today and how these tools can support independence rather than limit it.
From lightweight folding power wheelchairs and scooters to manual wheelchairs and complex power seating systems, equipment decisions should be based on an individual’s needs, goals, and daily activities.
The speakers emphasized that mobility devices are not signs of giving up function. Instead, they can help conserve energy, reduce fatigue, and allow individuals to participate more fully in school, community activities, travel, and social events.
Power wheelchairs, in particular, offer features such as tilt, recline, seat elevation, and customized positioning that can improve comfort, pressure relief, and access to daily activities.
The Importance of Standing and Positioning
Standing programs may also play an important role in maintaining health and function.
Using a standing device allows individuals who can no longer stand independently to spend time in an upright position. Standing can support flexibility, bone health, posture, and overall positioning while also providing opportunities for gentle muscle activation.
Proper seating and positioning are also critical components of care. Individuals with Duchenne often spend many hours each day in their wheelchairs, making customized seating systems essential for comfort, skin protection, posture, and function.
Building a Support Team
Throughout the session, Levine and Wallace emphasized that families should never feel like they have to navigate these decisions alone.
Physical therapists, occupational therapists, orthotists, seating specialists, physicians, and equipment providers all play important roles in helping families make informed choices. Families should seek out Duchenne-specific expertise whenever possible and refer clinicians who want specialized training should check out CureDuchenne’s physical and occupational therapy certification programs.
Key Takeaways for Families
The session concluded with several practical reminders:
- Focus on maintaining mobility and flexibility before problems develop.
- Use stretching and positioning strategies consistently.
- Choose exercise that promotes movement without overworking muscles.
- Consider aquatic activities whenever possible.
- View mobility equipment as tools for independence and participation.
- Stay proactive about seating, positioning, and standing programs.
- Build a knowledgeable care team and seek Duchenne-specific expertise when available.
As research continues to advance and new therapies become available, movement and mobility will remain essential parts of comprehensive Duchenne care. By staying informed and proactive, families can help support function, independence, and quality of life at every stage of the journey.
Need Personalized Support for Your Duchenne Journey?
The CureDuchenne Cares team provides personalized guidance, educational resources, and one-on-one support to help families make informed care decisions throughout every stage of Duchenne.
- Register for the CureDuchenne FUTURES Annual Conference to hear the latest in Duchenne care
This content is intended for educational and informational purposes only and should not be considered medical advice. Always consult your healthcare provider before making decisions about your medical care or treatment plan.
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