The Independence Blueprint: Managing Mobility Challenges With Duchenne Muscular Dystrophy

Duchenne muscular dystrophy (DMD) is a progressive disease, and over time, muscle strength and mobility will change. Mobility devices can help you manage fatigue, prevent falls, and maintain independence. By proactively preparing for mobility transitions, you can sustain a high quality of life at every stage of the disease.

Late Childhood At this point, it may become harder to navigate long distances. Some children may use a walker for better balance while others intermittently use a scooter or manual wheelchair.

Tween and Teen Years Most children will be unable to walk by the time they reach age 12 or 13. Even if they have been using a manual wheelchair, as muscles weaken they will eventually need to switch to a power chair.

“Maintaining mobility helps with circulation, muscle activity, and overall cardiovascular conditioning,” says Raj Dasgupta, MD, an associate professor of clinical medicine at the UC Riverside School of Medicine in California. “Even light movement supports heart and lung function, which is very important with conditions where respiratory health can decline gradually.”

“Movement is critical for physical and mental health — releasing endorphins and dopamine, circulating blood, improving cardiac and respiratory strength, maintaining flexibility, and reducing pain,” says Clarissa Aguirre, DPT, a board-certified pediatric physical therapist at Village Pediatric Therapy in Loma Linda, California.

The time to transition will vary, but experts say it’s better not to wait.

“Mobility aids are most helpful when walking becomes too painful, unsafe, extremely slow, or when the individual begins fatiguing to the point of limiting participation in school, work, or social life,” says Matthew Cifelli, DPT, the founder of Attain Physical Therapy in New Jersey and Florida. “Early adoption often preserves energy, reduces fall risk, and expands independence.”

Dr. Aguirre says, “In stage 2 of DMD (typically 4-6 years old) it may be time to begin wearing dynamic ankle-foot orthotics at night to limit calf and ankle tightness and prevent contractures (stiff joints).”

When walking becomes more difficult, a lightweight manual wheelchair can limit fatigue and improve functional mobility and independence. “This is also the time to consider getting custom knee-ankle-foot orthotics to optimize gait,” she says.

If possible, try out equipment before you buy it. “There are many different wheelchairs, and comfort is a priority to avoid complications, such as pressure sores,” says Aguirre.

“Fit, comfort, and controls vary widely between products,” Cifelli says. “I would recommend trialing devices through your local physical therapy clinic or through your mobility vendor.”

Ensure that the child can sit in a good upright position, which can prevent or delay the onset of scoliosis, or curvature of the spine. They should also be able to reach and operate the wheelchair controls easily.

Customizing a wheelchair can improve comfort and safety and allow for a little personal expression.

• Ramps to get in and out of the house
• Widening doorways to allow a wheelchair to pass through
• Adjustable bed to make transfers easier
• Grab bars and handrails in the bathroom
• Stair lifts
• Lower shelves and drawers for easier access to items
• Nonslip flooring
• Roll-in shower for easier access

“When prescribing exercise for patients with DMD, the goal is to preserve function, prevent joint contractures, and support quality of life without accelerating muscle damage,” says Ashley Katzenback, DPT, the owner of Cape Concierge Physical Therapy in Massachusetts. “There are a few key precautions to keep in mind when planning — no eccentric strengthening or prolonged walking down hill, and no high intensity exercises.”

Dr. Katzenback says aquatic therapy and daily stretching are the gold standard for exercise in patients with DMD. “Water supports body weight, allows for a full range of motion and reduces eccentric load on tendons,” she says. “Contracture development is common in the wrist, hip, and ankle joints, so daily stretching is essential.”

Mobility aids and equipment can be expensive. Insurance coverage depends on your individual policy.

If you don’t have health insurance, or if your policy either doesn’t cover or only partially covers DME, there are many resources for obtaining free and low-cost mobility equipment. These include:

• The Muscular Dystrophy Association’s Durable Medical Equipment (DME) Grant Program
• The Kids Equipment Network
• Friends of Disabled Adults and Children
• Wheel to Walk Foundation
• Local nonprofits and service clubs including Lions Clubs, Kiwanis, Elks Lodges, and Rotary Clubs

Ask your healthcare team if they know about resources in your own community.

• Most people with DMD will need a mobility device at some point, usually late childhood.
• Transitioning to a power wheelchair can give a child renewed independence and mobility.
• Mobility equipment should be tested prior to purchase, and wheelchairs can be customized to improve safety and comfort.
• Adaptive sports can be a great way to stay active, maintain cardiovascular conditioning, and stay socially engaged.