Duchenne muscular dystrophy (DMD) is a neuromuscular disease that weakens muscles over time. As the condition progresses, using a wheelchair becomes necessary. Other assistive devices can also help make daily life easier.

While this transition can be hard — especially for parents and caregivers — a wheelchair helps people with DMD stay independent and keep up with their peers for much longer. It can improve their well-being and overall quality of life.

If you or your child is adjusting to a wheelchair, or if you’re having problems using one you already have, this article has information and tips to help. Your wheelchair should be comfortable, keep your body properly aligned, and help you access all the places you want to be.

Why Choose a Wheelchair To Help With DMD Mobility Issues?

Duchenne muscular dystrophy is caused by genetic differences that affect a protein called dystrophin. This protein works to keep muscle cells healthy and whole. People with DMD experience muscle weakness and other muscle problems due to the dysfunction of the dystrophin protein.

DMD is a progressive disease, meaning muscles get weaker over time. The exact way that DMD progresses is different for each person. Most children with DMD first show signs of muscle weakness and other problems early in life. Over time, they experience more problems in their muscles. Later on, DMD can affect other muscles, such as the heart and lungs.

As muscle weakness increases, people with Duchenne muscular dystrophy will eventually need a wheelchair and other adaptive technologies for their safety and independence. Once walking becomes difficult with DMD, you’ll have to explore mobility aids — like a wheelchair — that best fit your or your child’s needs.

When Do People With DMD Start to Use Wheelchairs?

The age at which a person with DMD needs a wheelchair varies. Most people will start using one between the ages of 10 and 12. Before that, a child with DMD may only need a wheelchair for long distances, and use other mobility devices the rest of the time.

Over time, they’ll likely need to use a wheelchair and other assistive devices more often. Eventually, they’ll use a powered chair all of the time. By age 13, most people with DMD use a wheelchair consistently.

By age 13, most people with DMD use a wheelchair consistently.

Finding the Right Wheelchair

If you’re looking for a wheelchair for yourself or your child living with DMD, start by talking to your healthcare provider or physical therapist. They can help you find the best chair for your current needs and help you adjust as those needs change.

Here are some things to consider when looking for a wheelchair.

Manual vs. Powered Wheelchairs

Manual wheelchairs require pushing, either by the person in the chair or someone else. Powered wheelchairs have a motor and move on their own.

Many people with DMD use a manual chair as their first wheelchair. While many people can propel their own chair at first, this independent use is usually short-lived. A study found that after 5 years, less than 3 percent of people with DMD were able to move a manual chair on their own. Even when people with DMD can move themselves in a manual wheelchair, they can usually do it for less than 10 minutes at a time.

Many people with DMD use a manual chair as their first wheelchair.

On the other hand, people with DMD who have powered chairs report using their chairs more. Powered chairs also provide greater independence, since people who use them don’t have to rely on others to move them. For these reasons, a powered wheelchair may be a better long-term solution for people with DMD. Remember that if you start with a manual wheelchair, you’ll likely need a powered chair later as DMD progresses.

Note that there are also power-assist options, which can add motorized support to an otherwise manual wheelchair. These may be a good choice if you need help sometimes but not always, or if you’re aiming to get a powered chair but don’t have one yet.

Posture Support Options

Any wheelchair used by a person with Duchenne muscular dystrophy will need to support their body properly. Scientists recommend a chair that supports the pelvis, hips, knees, back, trunk, chest, head, and arms. Your physical therapist can help you adjust these supports for comfort and proper positioning. Since bodies change over time, it’s important to have a wheelchair that can grow and adapt too.

Scientists recommend a wheelchair that supports the pelvis, hips, knees, back, trunk, chest, head, and arms for people with DMD.

Accessibility Considerations

You’ll need to choose a wheelchair that can go where you need to go. Some wheelchairs are easier to turn in tight spaces, while others handle rough or bumpy ground well. Each chair moves differently, so it’s important to find one that fits your needs.

Your physical therapist can help you decide which features are most important for your daily life. Occupational therapists are another type of healthcare provider who may be able to teach you wheelchair skills and suggest ways to access places and activities more easily.

How To Get a Wheelchair With Duchenne Muscular Dystrophy

There are many wheelchair options available for people living with DMD. Ask your healthcare provider or physical therapist for recommendations. You may then want to contact wheelchair companies directly.

Don’t forget to check with your health insurance company. They may cover some or all of the cost of a wheelchair, but this can be an involved process. You’ll likely need to prove that you or your child needs a wheelchair. Your healthcare team can help you gather the right paperwork for insurance approval.

Enhancing the Wheelchair Experience

There are some other steps you can take to improve your child’s experience in a wheelchair.

As muscle weakness grows and mobility declines, you may need to adjust the controls of your child’s chair so they can keep using it easily. Options include a variety of joystick or pad controls, as well as controls you can operate with your mouth or your chin. New assistive technology even allows for breath-controlled systems that work by blowing into a tube.

Because sitting puts a lot of pressure on different parts of the body, you’ll want to reduce that pressure. Helpful options include chairs that recline or adjust to different angles, along with special cushions that relieve pressure.

You may also need to make changes to your home to adapt it for wheelchair use. These adjustments may include widening doorways, installing ramps, and putting items within arm’s reach of a seated person. The more home modifications you make, the easier it will be for you or your child to maintain independence in your daily life by making activities easier to do from a wheelchair.

Find Your Team

On myMDteam, the site for people with muscular dystrophy and their loved ones, members come together to gain a new understanding of MD and share their stories with others who understand life with MD.

Do you or your child use a wheelchair due to Duchenne muscular dystrophy? What tips would you pass on to others? Share your experiences in the comments below or by posting to your Activities page.