Neuromuscular diseases like Duchenne muscular dystrophy 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 movement, 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 your child or loved one may benefit from it. We’ll also discuss a few strategies for finding a physical therapist near you.
Physical therapy is a type of treatment for people with movement problems from an injury, a disease, or a disability. Physical therapists are licensed professionals who have completed formal education and training, and many specialize in treating particular areas of the body or certain types of injuries.
During a physical therapy session, this health care professional will perform an evaluation and determine what kind of treatment is needed. Common examples include:
Physical therapy is an integral part of a DMD treatment plan. As a member of the health care team, a physical therapist can work with a pediatrician, an occupational therapist, and an orthotist (specialist in orthotics) 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 your child’s or loved one’s needs change, the physical therapist can monitor their progress and adjust their treatment plan.
The goal of physical therapy is to help preserve muscle and joint function, strength, flexibility, and range of motion. A child with DMD needs specialized exercise programs to help improve coordination, balance, and lung 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 while working on heart and lung function.
Exercise can also be turned into a fun activity. For example, swimming is a great, low-impact way to strengthen muscles and work on breathing exercises. The physical therapist can recommend swimming programs or demonstrate exercises to work on at home if you have a pool.
Some physical therapists also recommend that children with DMD play adaptive sports like T-ball and enjoy time on the playground. Activities like hitting a ball, climbing stairs, and standing up from sitting work all the muscle groups. Physical therapists can also offer strategies to keep children safe while playing.
Duchenne muscular dystrophy occurs when mutations in the dystrophin gene cause changes to skeletal muscle, which normally connects the joints and tendons. Instead, muscle is replaced by scar tissue and fat, so it’s less flexible.
The combination of weak muscles and lost flexibility makes it hard for people with DMD to move their bodies. Many develop contractures, when muscle shortens and stiffens and joints become rigid. Contractures develop first 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 treat contractures. The sooner your child or loved one begins a stretching routine, the longer they’ll maintain their mobility. Stretching also helps relieve muscle stiffness, pain, and discomfort. Along with working on the legs, the physical therapist will use stretches for the elbows, wrists, knees, and hips.
In addition, the physical therapist can recommend ankle-foot orthoses or night splints for the leg muscles. Wearing these braces while sleeping helps stretch muscles for several hours a day.
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 happen, the physical therapist will develop a specialized rehabilitation program to boost recovery and a return to walking.
Eventually, nearly all children with DMD will need to use adaptive or assistive devices to help with mobility or allow standing for an extended period of time. The physical therapist can recommend the devices best suited for your child or loved one, as well as demonstrate safe use and correct positioning. For example, properly placed pillows or bolsters can help a child sit comfortably and maintain range of motion. As a growing child’s mobility needs change, a physical therapist will give recommendations for mobility devices like walkers or wheelchairs.
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 Project Parent Muscular Dystrophy. By working with a physical therapist, you can watch for changes in your child’s or loved one’s posture and spine.
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 pediatrics, wheelchair mobility, and scoliosis.
After finding a physical therapist you’re interested in, ask them the following questions:
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.
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.
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