Living with Duchenne muscular dystrophy (DMD) can bring challenges, especially when it comes to everyday tasks. As symptoms progress, maintaining independence may become more challenging. That’s when occupational therapy can help.

Occupational therapy can help people with DMD learn techniques and find tools for self-care and daily activities, even as mobility or flexibility changes. Your loved one may gain additional benefits from occupational therapy, too. Here’s what you need to know about occupational therapy and how it can improve the quality of life and overall well-being for someone living with DMD.

What Is Occupational Therapy?

Occupational therapy helps people participate in life in meaningful and purposeful ways, even if physical limitations make these activities difficult. Much of the time, this means helping people be as independent as possible at home, at work or school, or in their community.

Occupational therapists help people master specific tasks that they find challenging. These health care professionals might also help individuals learn to work and interact with their peers and friends.

Although occupational therapy and physical therapy are different, they often work hand in hand. Physical therapy typically addresses overall mobility and movement of large muscle groups. Occupational therapy focuses on the ability to perform specific actions, including fine-motor movements (detailed hand or finger movements). Both physical and occupational therapists are often part of the team that helps make everyday life easier and more fulfilling for people with DMD.

How Does Occupational Therapy Fit Into Life With Duchenne Muscular Dystrophy?

The exact role of an occupational therapist may differ for every person with Duchenne muscular dystrophy. You and your child will work together with an occupational therapist to come up with specific goals. Occupational therapy may involve the whole family when making changes to improve life with DMD. Here are some examples of how occupational therapy can help people with DMD.

Help With Self-Care Tasks

Occupational therapists often help people living with DMD figure out how to take care of themselves independently. Self-care tasks may include:

• Getting ready for the day
• Eating
• Brushing teeth
• Combing or brushing hair
• Bathing
• Dressing and undressing
• Going to the bathroom
• Trimming nails

Even if you don’t mind assisting your child, learning to accomplish daily tasks on their own can boost your child’s self-confidence. An occupational therapist can give them the tools and training they need to reach a new level of independence in taking care of themselves.

An occupational therapist can also let you know when your child needs additional aids or interventions to manage self-care. For example, they might recommend a specialized bed, shower chair, or lift for standing or climbing stairs. Occupational therapists can help you access these aids, get them properly installed, and learn how to use them.

Recommendations for Assistive Devices

Assistive devices, like wheelchairs and other mobility tools, can promote independence and reduce the fear of falling. People with DMD will eventually require a wheelchair, and occupational therapists can help you decide when it’s time to make that transition. They can also assess which type of wheelchair — manual, power-assist, or full-power — best fits your child’s needs.

Your child might develop finger or wrist tightness as their DMD progresses. Wrist and hand splints or braces can help maintain hand strength and range of motion. An occupational therapist will make sure that devices such as braces, orthotics, or splints fit properly and work effectively without causing discomfort, such as rubbing against your child’s skin.

Support for School Accommodations

Every child, adolescent, and young adult living with DMD deserves full access to education, and occupational therapists can help make that happen. They can work with you and your child’s school or college to make modifications that will allow your child to learn alongside their peers. Their recommendations will depend on how Duchenne muscular dystrophy affects your child.

Occupational therapists can help your child work on handwriting or typing skills or suggest adaptive technology to replace writing by hand. They may also recommend other types of adjustments, such as making sure classrooms are designed to accommodate mobility aids.

Assistance With Home Modifications Decisions

Modifying your home can help ensure it’s safe and accessible for your child with DMD. An occupational therapist can guide you in identifying the most important changes based on your family’s specific needs. These adjustments can make it easier for your child to move around the house and use essential spaces like the bathroom or kitchen.

Possible home modifications include:

• Widening doorways so a wheelchair will fit through them
• Adding ramps other adaptive equipment to entries
• Installing nonslip flooring that also allows wheelchairs to roll
• Raising the height of chairs and toilets

Changing your home can be expensive, but resources are available. Your occupational therapist may be able to help you explore funding options, such as insurance, Medicare, or state and local government loans or grants.

How To Find Occupational Therapy for Duchenne Muscular Dystrophy

If you’d like to learn more about how an occupational therapist can help your child manage DMD symptoms like muscle weakness and contractures, talk with their health care provider or neuromuscular specialist. They may need to provide a referral for occupational therapy.

Your provider may refer you to a particular occupational therapy clinic or therapist. You can also research options on your own. Be sure to confirm that the provider accepts your insurance, and then schedule an appointment.

The first visit usually involves an evaluation or assessment. You and your child will meet with the occupational therapist to talk about your goals and how occupational therapy can help. The therapist may want to observe your child performing different activities.

Next, the therapist will develop a treatment plan tailored to your child’s needs. This plan will likely include:

• Strategies for self-care
• Recommendations for assistive devices
• Suggestions for accommodations at school
• Ideas for home modifications

The plan may also include training for you as the caregiver and additional pain management for your child.

By following their personalized occupational therapy plan, your child can gain skills and independence, building confidence as they navigate daily life with DMD.

Find Your Team

On myMDteam, the site for people with muscular dystrophy and their loved ones, people come together to ask questions, give advice, and share their stories with others who understand life with muscular dystrophy.

How has occupational therapy helped you or your child with Duchenne muscular dystrophy? Share your experiences on your Activities page.