Care plan for ambulatory people with Duchenne muscular dystrophy

Last updated March 12, 2025, by Marisa Wexler, MS
Fact-checked by Inês Martins, PhD

People with Duchenne muscular dystrophy (DMD) who are ambulatory, that is, who are still able to walk, require specialized care to help minimize disease progression and maintain mobility and independence for as long as possible.

DMD is a genetic disorder that causes progressive muscle weakness and wasting. While children with DMD are usually able to walk, they often reach motor milestones later than expected and may develop an unusual gait due to muscle weakness.

A wheelchair is usually needed around the preteen or early teenage years, when walking is no longer possible. But this may happen later, as DMD’s progression often varies.

A comprehensive care approach can help maximize function and mobility, and maintain the best possible quality of life, for those who are still able to move around on their own. It is also an important part of navigating into being nonambulatory.

What kind of care is needed for ambulatory DMD?

DMD is a complex disease that affects the ability to move, as well as the health of the heart and lungs. Multifaceted care is important to manage all aspects of the disease, even in the early stages when you or your child are still able to walk.

This care can include medical monitoring to track disease progression, physical therapy and rehabilitation to maximize mobility and function, and specialty treatments to address common health complications. Assistive devices, such as orthotics and mobility aids, also can help support movement and reduce strain on muscles.

Counseling and psychological support are also important, as adjusting to mobility changes can be challenging.

Care can be provided in various settings, including hospitals, rehabilitation centers, physiotherapy clinics, and even at home. As each person’s needs are different, it’s important to work with your healthcare team to find the right options for your situation.

How care helps ambulatory people with DMD

There are many different aspects of care for children who are still able to move around,  the aim being to preserve mobility and independence for as long as possible, while boosting quality of life.

Medical monitoring

Since DMD symptoms tend to get worse over time, regular medical monitoring is essential for tracking disease progression and catching complications early on, so care can be adjusted as soon as new issues arise.

Current guidelines suggest that you undergo tests of motor function, muscle strength, and range of motion at least every six months. Regular monitoring is also advised for other aspects of the disease, including:

• bone health and scoliosis, an abnormal sideways curvature of the spine
• swallowing ability and digestive issues
• heart and lung function
• nutritional intake
• pubertal status, for older children and teens.

Physical and occupational therapy

Physical and occupational therapy are key parts of maintaining your mobility.

Physical therapy (also called physiotherapy) involves strengthening and stretching exercises done under the guidance of a physical therapist. The goal is to preserve mobility and make adjustments as it changes.

Physical therapy for DMD typically involves stretches and movements to treat contractures, when muscles or tendons become shortened. Contractures can prevent joints from having a full range of movement.

DMD physical therapy also can involve gentle aerobic exercises that increase heart rate. Because DMD makes you more susceptible to muscle damage, it’s crucial that you don’t over-exert yourself. The type of exercise you do, and its intensity and duration, should always be discussed with a physical therapist.

Physical therapists will also work with you to regularly monitor mobility changes and modify exercises to your specific abilities as DMD evolves.

Occupational therapy focuses on finding strategies for navigating day-to-day life better. It may include interventions such as modifications to the home environment and guidance related to using assistive devices. An occupational therapist can also recommend activities and exercises to maintain muscle strength and teach you energy conservation techniques that reduce fatigue.

Speech therapy is also a common part of early DMD care. It is intended to improve communication and swallowing function, as the muscles involved in those tasks are often affected.

It is recommended that kids with DMD see physical, occupational, and speech therapists regularly — either in outpatient settings or at school — to benefit the most from these interventions.

Mobility support

A major goal of care for those with DMD who are still ambulatory is to delay the loss of motor function, ensuring they retain the ability to walk independently for as long as possible.

Along with physical therapy and the use of assistive devices, care may also involve surgery to address foot-related problems as well as medications that can slow DMD progression.

The standard treatment for DMD involves the use of corticosteroids, which are anti-inflammatory medicines that can slow muscle damage. It’s recommended that regular steroid therapy be started early on, before mobility is noticeably affected.

New DMD treatment strategies such as exon-skipping therapies and gene therapy have recently become available in the U.S. These medicines try to slow DMD progression by increasing the production of dystrophin, a protein that’s either missing or abnormal in DMD patients.

While these therapies offer hope, their long-term effects are not fully known. To decide what might be best for you or your child, discuss the potential benefits and risks with your healthcare team.

Nutritional guidance

Proper nutrition is essential for maintaining overall health, but it can be particularly challenging when you have DMD. Starting from an early age, children with DMD should meet with a nutritionist every six months to ensure their current diet meets their nutritional needs.

Nutritionists can also make recommendations for which foods to eat and avoid with DMD, and suggest adjustments or supplements as needed.

As mobility decreases, so does the amount of calories needed. With nutritional needs changing over time, regular assessments are essential to prevent becoming obese or overweight, which can further impact mobility.

Bone health is another key concern in DMD, especially when taking corticosteroids for long periods of time. A dietary plan that ensures adequate intake of vitamin D and calcium can help reduce the risk of fractures and other bone-related complications.

Swallowing issues and being susceptible to digestive problems are also concerns. Routine monitoring can help detect these problems early and ensure appropriate dietary modifications or medical interventions are given as needed.

Respiratory and cardiac care

DMD progression often leads to heart disease and breathing problems due to weakness in the heart and chest muscles.

But because they usually don’t develop until after the ability to walk is lost, the focus of cardiac and respiratory care is mostly on monitoring during the ambulatory stage.

This includes tests of breathing function, such as measuring how much air you can forcefully exhale, or sleep studies that track your breathing patterns during sleep.

Another key part of respiratory health during the ambulatory stage is getting all recommended vaccines, including pneumococcal vaccines and annual flu shots, to prevent life-threatening infections.

For heart health, tests of heart function should be done at least annually in young kids with DMD, though more frequent testing may be required if there are signs of heart health problems.

Some doctors might suggest starting on heart-targeting medications, such as angiotensin-converting-enzyme inhibitors (ACE inhibitors) or angiotensin receptor blockers (ARBs), even before there are signs of heart problems. This is somewhat controversial, so the risks and benefits of this type of treatment should be discussed with your healthcare team.

Mental health and social support

Living with DMD can be stressful and make everyday interactions more complicated. It’s important that children and adolescents get psychosocial support to help their mental health and social life as they deal with mobility loss and other disease-related challenges.

Counselors and therapists can help manage psychological and learning struggles, offer adaptations to make life easier to navigate, and provide age-appropriate guidance on muscular dystrophy self care​.

They may also help with establishing educational and career goals, and initiate discussions about transitions of care, including how to find and finance care services that may become necessary after mobility is lost.

Creating your ambulatory DMD care plan

After a DMD diagnosis, you and your child will work with a healthcare team to develop a personalized care plan for DMD that helps navigate the challenges of the disease.

Care is typically led by experts in neuromuscular diseases, such as pediatric neurologists, but also involves a multidisciplinary team that may include nurses, physical and occupational therapists, dietitians, and other specialists.

A key part of a DMD care plan is scheduling routine evaluations with therapists and specialists. While managing multiple appointments can feel overwhelming, integrating care plans into daily routines can make it more manageable.

Creating a tailored care plan will also involve discussions about what life with DMD may look like in the future. This will allow you and your family to make proactive choices about assistive devices, home modifications, and other future steps that can support long-term independence and make life with DMD easier.

Although visits to hospitals and healthcare centers are important, home care for muscular dystrophy plays a crucial role in achieving the best possible outcomes. Families and healthcare providers should work together to incorporate therapies, nutrition, and supportive strategies into everyday life.

Long-term benefits of care for ambulatory DMD

Starting appropriate care at an early age during the ambulatory stage can have many long-term benefits including:

• slowing DMD progression to help retain mobility
• prolonging the ability to walk independently
• preventing or managing complications such as scoliosis, fractures, and heart and lung problems
• supporting independence by adapting to mobility changes with assistive devices and therapies
• maintaining quality of life through proactive disease management and a structured care plan
• building long-term healthcare relationships with specialists who will provide ongoing, lifelong care.

Adjusting your care plan with time

As DMD progresses, care plans need to be adjusted to address changing needs as best as they can. While some aspects of care remain consistent, there will be new challenges at different stages of the disease, requiring adaptations in medical treatment, mobility support, and approaches to daily care.

Early-stage DMD (childhood)

In the early stages of DMD, when your child is likely still able to walk, establishing a structured care plan is essential. At this stage, key components of care include:

• regular monitoring to track disease progression and detect early complications
• physical therapy and mobility support to maintain walking function and prevent contractures
• early initiation of corticosteroid treatment to slow muscle damage
• nutritional guidance to support bone health and overall well-being
• early discussions about assistive devices to ensure a smooth transition as mobility needs change.

Mid-stage (adolescence)

As children with DMD become teenagers, symptoms become more severe and their mobility worsens. Losing the ability to walk independently during the early teens is very possible. Care will start to focus on adjusting to life within these limitations.

DMD care during adolescence includes:

• transitioning to mobility aids, such as power wheelchairs, to maintain independence when no longer able to walk
• increased use of assistive technologies, such as robotic arms and voice-activated smart home devices, to help with daily activities
• physical therapy to prevent contractures and maintain muscle strength in the upper body
• increased monitoring of heart and lung function.

Late-stage (adulthood)

By adulthood, you are likely to be dealing with significant mobility challenges as well as cardiac and respiratory issues.

Managing DMD at this stage will focus increasingly on adaptive strategies to help you deal with the challenges of worsening mobility and supportive care for other complications from DMD. You will continue to need nutritional support and other supportive therapies to maintain overall well-being, however.

Muscular Dystrophy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.