Neuromuscular diseases such as Duchenne muscular dystrophy (DMD) may make it hard for your child or loved one to walk, run, and play. To help them maintain their mobility for as long as possible, their doctor will likely suggest physical therapy. This type of therapy helps people build or maintain strength, flexibility, and range of motion, as well as manage any pain or discomfort.

Physical therapy is a key aspect of a DMD treatment program. This article will cover what physical therapy is and how people with DMD may benefit from it. It will also discuss a few strategies for finding a physical therapist near you.

What Is Physical Therapy?

Physical therapy is a type of treatment for people with movement problems from an injury, a disease, or a disability. Physical therapists (PTs) are licensed professionals who have completed formal education and training. Many specialize in treating particular areas of the body or certain types of injuries.

During a physical therapy session, the PT will perform an evaluation and determine what kind of treatment is needed. Common examples include:

• Teaching new exercises, joint movements, and stretches
• Developing an exercise program and stretching routine to be done at home
• Using modalities, such as heat or cold therapy, to help with pain
• Performing soft tissue massage or gentle stretches
• Educating people with DMD, family members, and caregivers on the disease, as well as the disease process and its management
• Recommending mobility equipment and medical devices to help with recovery and improve quality of life

Physical therapists with special training can also help strengthen the breathing muscles to improve coughing and keep the lungs working well.

How Does Physical Therapy Fit Into Treatment for Duchenne Muscular Dystrophy?

Physical therapy is an integral part of DMD treatment. As a member of the health care team, a physical therapist can work with a pediatrician, an occupational therapist, and an orthotist (a specialist in medical braces and splints) to develop a comprehensive treatment plan.

The physical therapist will base the plan on a person’s current mobility status, needs, and overall health. DMD causes progressive muscle weakness and atrophy (wasting), which means the condition will change over time.

Parent Project Muscular Dystrophy recommends that physical therapists evaluate people with DMD every four to six months. They’ll look for developmental milestones, including sitting upright, crawling, standing, and walking. As the needs of your child or loved one change, the physical therapist can monitor their progress and adjust their treatment plan.

Strengthening Leg and Arm Muscles

The goal of physical therapy is to help preserve muscle strength, joint function, flexibility, and range of motion. A child with DMD needs specialized exercise programs to help improve coordination, balance, and lung and heart health. The physical therapist may have them walk on a treadmill to improve their gait (how they walk) and use an exercise bike to improve motor skills as they work on heart and lung function.

Exercise can be turned into a fun activity. For example, swimming is a great, low-impact way to strengthen muscles and work on breathing exercises. A physical therapist can recommend swimming programs or demonstrate exercises to work on at home if you have access to a pool.

Improving Mobility

As DMD advances, movement can become progressively more challenging. Individuals may face increased difficulty with tasks like getting up from bed, moving out of a chair, climbing stairs, and walking.

PTs are trained mobility experts who can help people with DMD develop movement plans to improve the way they get around. They can help them practice getting up and down from chairs, getting back up from the floor, and they can offer training on walking and climbing stairs. They can help people with DMD adapt certain movements to make them easier and more manageable as the disease progresses. Education is also a huge part of this process, teaching family members how they can best support their loved one with DMD at home.

Treating Contractures

Duchenne muscular dystrophy occurs when mutations (changes) in the dystrophin gene cause changes to the muscles. Muscle tissue is replaced by scar tissue and fat, so it’s less flexible.

The combination of weaker muscles and less flexibility makes it hard for people with DMD to move their bodies. Many develop what are known as contractures: when the muscle shortens and stiffens and the joints become rigid. Contractures first develop in the ankles because the shortened calf pulls on the Achilles tendon (the long tendon along the back of the calves).

Stretching and range-of-motion exercises under a physical therapist’s guidance can help manage contractures. Starting a stretching routine as early as possible can help maintain mobility longer. Stretching also helps relieve muscle stiffness, pain, and discomfort. Besides working on the legs, a physical therapist will use stretches for the rest of the joints to help maintain muscle length. In addition, the physical therapist can work with an orthotist to recommend ankle-foot orthoses or night splints for the leg muscles. Wearing these braces while sleeping helps stretch muscles for several hours a day.

Proper positioning and strength training are important for preventing scoliosis, a condition that causes the spine to curve. Researchers believe that up to 90 percent of boys with DMD who don’t use steroids will develop scoliosis, according to Parent Project Muscular Dystrophy. By working with a physical therapist, you can watch for changes in your child’s or loved one’s posture and spine.

Preventing Injuries

Children with DMD are at a higher risk of bone fractures, especially in their legs. A physical therapist can evaluate your child or loved one and make recommendations for your home and daily routine to prevent injuries. If an injury does occur, the physical therapist will develop a specialized rehabilitation program to boost recovery and reduce pain.

Using Adaptive or Assistive Devices

Eventually, nearly all children with DMD will need to use adaptive or assistive devices to help with mobility or enable them to stand for an extended period of time. A physical therapist can recommend and fit the devices best suited for your child or loved one and demonstrate safe use and correct positioning. For example, properly placed pillows or bolsters can help a child sit comfortably and maintain range of motion. Because a growing child’s mobility needs will change over time, a physical therapist will give recommendations for mobility devices like walkers or wheelchairs.

DMD Muscles and Exercise

People with DMD respond differently to exercise than people without DMD. In someone without DMD, muscles can repair themselves and grow stronger after exercise. In someone with DMD, the lack of dystrophin can cause the muscle to become injured rather than stronger after exercise. Exercise can put too much stress on the vulnerable muscle fibers, which can cause the body to replace them with fat and connective tissue. This leads to further contractures and trouble using the muscles.

Exercise Guidelines for DMD

Because of the damage they can cause in people with DMD, it’s best to avoid exercises that put a lot of stress on the muscles. Examples of these types of exercises include high-resistance training (with heavy weights or at fast speeds) and eccentric exercise, where the muscle is active as it’s lengthening.

When they are carefully selected, exercises can be beneficial for people with DMD. They can prolong the function of the muscle, boost strength and endurance, and improve lung and heart function.

One study showed that mild-to-moderate leg exercises done at home were helpful for strength and function for boys with DMD between ages seven and 11. When thinking about what exercises will be best, it’s important to consider many variables:

• Contraction method — This refers to how the muscle is activating. It is important to avoid eccentric (lengthening) contractions.
• Exercise duration — This describes how long each exercise session lasts and how long the person has been involved in an exercise program. People who are not used to exercise are less likely to tolerate it as well as those who have been exercising for years.
• Exercise intensity — It is recommended to maintain low to moderate levels of exercise, as these are the least harmful and most beneficial for people with DMD.
• Individuality — No two people are the same, so something that works for one person might not work as well for another. It may take time to find the best exercise program for each individual.

Other low-impact activities, such as yoga, might be a helpful addition to an exercise program. Yoga can help to improve lung function by focusing on breathing.

Numerous organizations host adaptive-sports activities and competitions for people with different ability levels. As always, it’s best to consult with a health care provider before you start any new exercise program to ensure it’s safe for you.

How To Find a Physical Therapist Near You

If you want to get your child or loved one started in physical therapy, it’s important to first find a qualified physical therapist. You can reach out to other myDMDcenter members in the comments and ask how they found this type of health care provider.

You can also ask your child’s or loved one’s doctor for recommendations. They’ll connect you with in-network providers who may be covered by your insurance. It’s best to find a physical therapist with experience or training in treating children and adults with DMD.

The American Physical Therapy Association’s Find a PT search engine allows you to look for providers in your city and state, filtering by their specialties. For example, you might choose to include DMD, pediatrics, wheelchair mobility, and scoliosis in your search.

After finding a physical therapist you’re interested in, you might ask them the following questions:

• Have you ever treated someone with DMD?
• If so, how old were they, and how long did you treat them?
• Do you have specialized training in treating people with DMD or other neuromuscular diseases?

Working with the right physical therapist may help keep your child or loved one as strong, flexible, and mobile as possible for as long as possible — and even have fun while engaging in this key aspect of DMD treatment.

Find Your Team

At myDMDcenter, the site for people with Duchenne muscular dystrophy and their loved ones, people come together to gain a new understanding of DMD and share their stories with others who understand life with DMD.

Has your child or loved one done physical therapy to help with their Duchenne muscular dystrophy? How has it helped manage their symptoms? Share your experience and questions in the comments below.