PPMD recently hosted a webinar centered on common questions from families: is exercise recommended in dystrophinopathy care and how it can be done safely? Experts discussed what we currently understand, what researchers are still exploring, and how this information can be thoughtfully incorporated into day-to-day life.

Speakers:

• Claudia Senesac, PT, DPT
• Donovan Lott, PT, PhD, CSCS, University of Florida
• Tanja Taivassalo, PhD, University of Florida
• Tina Duong, PT, PhD, Stanford Medicine

Why Exercise Matters

Dr. Senesac emphasized that our understanding of exercise in dystrophinopathies continues to evolve. While research takes time, families need guidance now, especially as new treatments are becoming available. Exercise is medicine and it can benefit individuals across the spectrum. She also highlighted a recent meeting held in partnership with PPMD that focused on translating exercise research in dystrophinopathy into clinical practice, which led to a publication in Journal of Neuromuscular Disease. Read the publication here.

Dr. Senesac captured the driving force behind this work in one powerful statement: “The more we share, the more you know, and the more we collaborate, the more we can improve overall health.”

What Research Tells Us So Far

Dr. Lott reviewed current research on exercise in dystrophinopathy. While more high-quality studies are needed, early findings are encouraging:

• Assisted cycling appears to delay functional deterioration in Duchenne muscular dystrophy (Jansen, et al, 2013)
• Moderate intensity isometric strengthening appears safe and effective in Duchenne (Lott, et al, 2021)
• Moderate intensity endurance exercise for Becker muscular dystrophy appears to be safe and improve strength & fitness. (Sveen, et al, 2008)
• Supervised low intensity (LI) resistance training may be considered in the management of patients with Becker (Sveen, et al, 2013)
• Those with Becker may be more prone to exercise-induced damage from high-intensity (HI) exercise than those with other forms of muscular dystrophy (Sveen, et al, 2013)

Key takeaways:

• Exercise can be beneficial
• Moderation and supervision matter
• More research is still needed

The Whole-Body Benefits of Exercise

Dr. Taivassalo highlighted that exercise supports much more than just muscle health. It can positively impact the:

• Heart
• Lungs
• Bones
• Immune system
• Digestive system
• Hormones and metabolism
• Brain and nervous system

Because movement depends on coordination between the heart, lungs, and muscles, improving fitness can help lower the risk of additional health complications.

What Does Safe Exercise Look Like?

Exercise plans should be personalized and follow the FITT principle:

• Frequency (how often)
• Intensity (how hard)
• Time (how long)
• Type (what kind)

Dr. Tavaissalo also highlighted her recent pilot study that showed that personalized, moderate intensity exercise programs, such as cycling and strength training, can improve muscle, heart, and bone health without causing additional muscle damage in dystrophinopathy.

Key takeaway: Exercise should be considered an important part of dystrophinopathy care, just like taking medication. It should be tailored as an individualized prescription for each person.

How Do We Measure Exercise?

Dr. Duong explained that monitoring progress is essential for ensuring exercise is both safe and effective, and is also a key component of dystrophinopathy research studies used to evaluate outcomes.

Healthcare teams may use:

• Timed function tests
• Disease specific assessments
• Standardized scales

These tools help:

• Track changes over time
• Understand how treatments are working
• Adjust therapy plans
• Provide objective measures of progress

Ways to Monitor Exercise Intensity at Home

Families can also help track exercise by paying attention to:

• Quality of movement (i.e. whether form is being compromised or control of the movement is being lost)
• How hard it feels, also called rate of perceived exertion
• Heart rate when appropriate

It’s important to remember exercise plans should be regularly reassessed by your or your child’s provider and adjusted, since needs can change over time.

Bringing It All Together

Exercise can play a meaningful and positive role in dystrophinopathy care when done thoughtfully and safely. Focusing on moderate, personalized activity, working closely with your healthcare team, monitoring how the body responds, and making adjustments over time as needs change are all key components. As research continues to advance, so will our understanding, but families do not have to wait to begin incorporating safe, guided movement into daily life. Ask your neuromuscular provider and physical therapist for safe exercise recommendations for you or your child today!

Additional Resources

Watch the recorded webinar here.

NEW! Access the publication here.

NEW! Download the Exercise Considerations in Dystrophinopathy resource here.

Download the PPMD Range of Motion Guide here.

Check out PPMD’s Physical Therapy Video Series, which features guided stretching exercises for individuals with dystrophinopathy.

Schedule a 1:1 meeting through our PPMD For You program for more questions on coordination of care, talking with your medical team, and other care related topics.

 

References

• Jansen M, van Alfen N, Geurts AC, de Groot IJ. Assisted bicycle training delays functional deterioration in boys with Duchenne muscular dystrophy: the randomized controlled trial “no use is disuse”. Neurorehabil Neural Repair. 2013 Nov-Dec;27(9):816-27. doi: 10.1177/1545968313496326. Epub 2013 Jul 24. PMID: 23884013.
• Lott DJ, Taivassalo T, Cooke KD, Park H, Moslemi Z, Batra A, Forbes SC, Byrne BJ, Walter GA, Vandenborne K. Safety, feasibility, and efficacy of strengthening exercise in Duchenne muscular dystrophy. Muscle Nerve. 2021 Mar;63(3):320-326. doi: 10.1002/mus.27137. Epub 2020 Dec 22. PMID: 33295018; PMCID: PMC9254904.
• Sveen ML, Jeppesen TD, Hauerslev S, Køber L, Krag TO, Vissing J. Endurance training improves fitness and strength in patients with Becker muscular dystrophy. Brain. 2008 Nov;131(Pt 11):2824-31. doi: 10.1093/brain/awn189. Epub 2008 Sep 6. PMID: 18776212.
• Sveen ML, Andersen SP, Ingelsrud LH, Blichter S, Olsen NE, Jønck S, Krag TO, Vissing J. Resistance training in patients with limb-girdle and becker muscular dystrophies. Muscle Nerve. 2013 Feb;47(2):163-9. doi: 10.1002/mus.23491. Epub 2012 Nov 21. PMID: 23169433.