Adaptive Equipment for Duchenne Muscular Dystrophy

Adaptive equipment and assistive devices help people living with Duchenne Muscular Dystrophy (DMD) live more comfortably and independently without missing out on activities they enjoy. Since DMD is a disease that gets worse over time, it is helpful to know about technology and equipment to help affected individuals adapt to living with various stages of disease progression.

Adaptive equipment or devices fall under the assistive technology umbrella but the terms adaptive and assistive are often used interchangeably. Assistive technology broadly includes products, equipment, and systems that help people with disabilities learn, work, and perform tasks of daily living. Adaptive equipment is a subset of assistive technology that includes devices specifically designed to help people with disabilities increase or maintain capabilities. Adaptive equipment is not generally used by non-disabled individuals. Here you will find examples of assistive technology for muscular dystrophy including adaptive equipment for mobility, computer use and activities of daily living.

Body support and orthotic devices

Body support devices, also called braces, splints, or orthotic devices (orthoses), enable people with DMD to use their less affected or stronger muscles to perform tasks more efficiently when other muscles or joints have become weak. An ankle brace, also called ankle-foot orthosis, is a plastic splint worn under pants. When DMD patients develop muscle weakness at the ankles they have difficulty lifting their feet when they walk. Ankle-foot orthosis helps with this problem and allows people with Duchenne to walk more easily, fall less often, and extend the amount of time they can walk independently.

In addition to providing support, ankle bracing may also be used to prevent or treat severe tightness of ankles, called contractures, which develop in people with DMD. Contractures are caused by the replacement of the normally stretchy muscle fibers with less flexible tissue. Stretching exercises and braces can help people with Duchenne preserve their range of motion. People with ankle contractures are sometimes recommended to wear braces at night. Wearing braces can affect sleep if it makes it too difficult for the wearer to get themselves into a comfortable position in bed. The potential benefits of using an adaptive device need to be weighed against any pain, distress or loss of sleep quality that may be caused.

Hand and wrist braces or splints can support finger movements such as typing and writing and grasping items such as toothbrushes. Slings may be used to support the neck and shoulders to enable people with DMD to lift objects more easily. For weakened neck muscles, a cervical collar helps to support the head.

Mobility devices

Canes and walkers are devices that can improve mobility and reduce fatigue in patients with DMD. Understandably, parents are not in a hurry to reach the stage where their child needs to use an electric scooter or wheelchair to get around. Parents may want to consider that these devices could increase their child’s freedom to participate in activities because they can avoid fatigue and fall less often. For some children affected by Duchenne, using a scooter on the way to the park may help them save their energy for playing with their friends when they arrive. Almost any activity that a family enjoys doing together, from nature walking, bicycling, basketball, or even downhill skiing, can be adapted to accommodate a scooter or wheelchair.

Wheelchairs and scooters

Standing wheelchairs and wheelchairs with seat elevators allow the user to be eye-to-eye with their peers. People who use standing wheelchairs get the added benefit of a stretch in their hips, knees, and ankles throughout the day which may prevent contractures. However, standing wheelchairs are more expensive compared with seated wheelchairs and might not be fully covered by health insurance. Seat elevators are another option for seated wheelchairs. The seat height can be adjusted for various activities such as preparing meals on a countertop.

Power scooters may be a good option provided that the user has good upper body strength. Scooters can be disassembled and packed into a car. A manual wheelchair is another option for DMD patients with good upper body stability, which is light and collapses to fit into a car. Power wheelchairs, controlled by a joystick or other device, are more suitable for individuals with less upper body strength. Almost any body part can be used to control power wheelchairs. Power wheelchairs can offer more independence for people with DMD, but they are more expensive and require a special car ramp because they are not collapsible.

Sip-and-Puff devices

For individuals who have muscle weakness in their hands, Sip-and-Puff (SNP) devices allow control of technology such as a computer with their mouth. SNP devices resemble straws, and the user can take a sip or blow a puff of air to create air pressure that serves as a signal to a computer keyboard or mouse.

Modifications for daily living

Modifications to the home can make it easier for people with Duchenne to perform daily activities. Some examples include doorknob adapters for ease of opening doors, handlebars and lifts in bathrooms, zippers instead of buttons for easier dressing as well as eating and writing utensils with better grips.

If you or someone you know is interested in using adaptive equipment, it is important to be assessed by an occupational therapist or physical therapist. These experts assess the specific needs of an individual and recommend the most appropriate adaptive equipment or assistive devices. If you are not sure how to access these items, charities and communities that support and advocate for people with muscular dystrophy are a good place to look for help.

myTomorrows offers a free service to help families find Duchenne Muscular Dystrophy clinical trials.