Emerging guidance offers cautious optimism—here’s what parents and caregivers should know
For years, families affected by Duchenne muscular dystrophy have heard a consistent message: “be cautious with exercise, don’t overdo it.”
That guidance came from a place of protection. Duchenne causes muscles to break down over time, especially under strain. Without clear evidence, exercise carried unknown risks, including how much strain might lead to damage.
Today, that conversation is evolving.
At a recent CureDuchenne professional education webinar featuring Donovan J. Lott, PT, PhD, CSCS (University of Florida) and Tina Duong, PT, PhD (Stanford University Neuro-Ignite Center), researchers shared recently published studies that begin to reshape how we think about physical and occupational therapy in Duchenne.
The takeaway isn’t all people with Duchenne should just “do more.”
It’s: we’re learning more, and with the right plan, some individuals may benefit from properly chosen exercise at the right time. We recommend that all PTs and OTs who work with people who have Duchenne watch this webinar: CureDuchenne PT and OT Webinar on Exercise in Duchenne.
A Shift in Understanding, Not a Free Pass
Historically, exercise in Duchenne muscular dystrophy was often avoided because we didn’t know what was safe.
Now, early research suggests that certain types of carefully guided and monitored movement may offer benefits for some individuals. But this is still an active area of study, recommendations must be individualized and ready to change when more evidence becomes available.
This does NOT mean starting an exercise program on your own.
Every decision should involve your care team including your neurologist, cardiologist, and physical or occupational therapist.
Potential Benefits of Exercise Being Studied
When thoughtfully designed and closely monitored, exercise may help support:
- Muscle health and function
- Cardiovascular health
- Range of motion and flexibility
- Bone health
- Emotional and social well-being
This shift will likely not only protect muscle but also support overall health and quality of life.
What Types of Activities Might Be Considered?
Under professional guidance, some examples include:
- Assisted range-of-motion exercises
- Shoulder pulley systems
- Aquatic therapy
- Arm and/or leg cycling
- Isometric (static position) exercises
- Power wheelchair sports such as soccer and hockey
These approaches are chosen because they can be adapted, controlled, and closely monitored.
Critical Safety Considerations
Even as research evolves, long-standing precautions still apply:
- Avoid eccentric contractions (jumping, squatting, lunging, sit-ups and more)
- Ensure cardiac clearance before aerobic activity and define acceptable heart rate parameters
- Recognize that more is not always better
- Stop immediately and contact your physician if you notice:
- Muscle pain or spasms
- Tightness or swelling
- Dark or blood-colored urine
Expert Perspective from CureDuchenne
CureDuchenne clinical experts Jennifer Wallace, PT and Doug Levine, PT emphasize a balanced approach:
- Exercise should be intentional and personalized
- Programs must reflect stage of disease and overall health
- Ongoing monitoring is essential
Their guidance reinforces a simple truth: the goal is not to push harder; it’s to support smarter care.
What Families Should Do Next
If you’re considering whether exercise might be appropriate:
- Start with your care team
- Ask your PT/OT if they are familiar with the latest Duchenne exercise research
- Work together to determine whether a structured, monitored plan makes sense
Also consider asking your provider about Duchenne-specific training. CureDuchenne offers free education through NeuroMuscularEd.org to help PTs and OTs stay current on best practices. They can view the webinar on this topic as well as many others in the “Professional Webinar Series” and can also become a CureDuchenne Certified Physical or Occupational Therapist, joining a network of trained professionals.
Disclaimer
This content is for informational purposes only and is not medical advice. Always consult your physician, neurologist, cardiologist, and physical or occupational therapist before starting or modifying any exercise or therapy program.
The post Rethinking Exercise in Duchenne Muscular Dystrophy: What New PT/OT Research Means for Families appeared first on CureDuchenne.