Duchenne muscular dystrophy (DMD) is a neuromuscular condition that causes muscles to weaken over time. As the disease progresses, many people eventually need a wheelchair to get around. Other assistive devices can also make everyday tasks easier and help maintain independence.

Adjusting to life with a wheelchair can be difficult — especially for parents and caregivers — but it’s an important step that often leads to greater comfort, confidence, and quality of life. A wheelchair can help people with DMD stay active, engaged, and connected with others.

If you or your child is adjusting to a wheelchair or 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.

🗳️ Have you noticed signs of DMD progression in your child?

Yes, mostly mobility changes

Yes, mostly breathing or heart changes

Yes, other progression signs

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Why Choose a Wheelchair To Help With DMD Mobility Issues?

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

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

A physical therapist can help you or your child adjust your wheelchair for comfort and proper positioning.

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 ages 10 and 12. Before that, a child with DMD may need a wheelchair only for long distances and use other mobility devices the rest of the time.

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

How Can You Find the Right Wheelchair?

If you’re looking for a wheelchair for yourself or your child living with DMD, start by talking with 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 factors 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 start with a manual wheelchair and can propel it themselves, but this independent use is usually short-lived. A study found that after five years, less than 3 percent of people with DMD were able to move a manual chair on their own. Even those who could move themselves usually do so for less than 10 minutes at a time.

Check with your health insurance company before purchasing a wheelchair.

People with DMD who have powered chairs report using their chairs more. Powered chairs also provide greater independence since their use doesn’t rely on others. 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 one later as DMD progresses.

Power-assist options can add motorized support to an otherwise manual wheelchair. These options may be a good choice if you need only occasional help or aim 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.

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.

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

Getting a Wheelchair With Duchenne Muscular Dystrophy

People living with DMD have many wheelchair options. 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 before making a purchase. They may cover some or all of the cost, 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

You can take additional steps to improve your child’s experience in a wheelchair.

As your child’s muscle weakness increases and mobility declines, you may need to adjust the chair’s controls 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 chin. New assistive technology even allows for breath-controlled systems that work by blowing into a tube.

To reduce pressure on the body while sitting, consider 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 make it more accessible. Adjustments may include widening doorways, installing ramps, and putting items within arm’s reach of someone using a wheelchair. The more home modifications you make, the easier it will be for you or your child to maintain independence in daily life by making activities easier to do from a wheelchair.

Join the Conversation

On myMDteam, people share their experiences with muscular dystrophy, get advice, and find support from others who understand.

Do you or your child use a wheelchair due to Duchenne muscular dystrophy? Do you have tips to share? Let others know in the comments below.