Duchenne | and you

Keeping Independence


Despite the challenges of living with DMD, it is possible to have a productive, creative, and fulfilling life. In fact, more and more young adults with DMD are attending university, pursuing rewarding careers and having families of their own.

As DMD progresses, a variety of lifestyle adjustments and adaptive technologies can help with everyday tasks:

Home adjustments

such as ramps, wider doorways and stairlifts, to help make moving around the house as easy as possible.

Mobility devices

such as braces, walkers, motorized scooters, or wheelchairs, to go places without having to rely on others.

Alternative schools

include either more accessible and accommodating mainstream schools or special education schools.

Life hacks for DMD

Browse the life hacks below for practical tips, tricks, and creative ways to make everyday life with DMD simpler and more enjoyable!

Eating and drinking

Break down hard-to-chew food in a blender for easy swallowing

Muscle weakness can make chewing and swallowing difficult. Try running meat, salads and hard fruit through food processor or blender to achieve a pâté-like consistency.

Use straws to make drinking out of cups easier

People with DMD may find it hard to raise a glass to their lips—use straws so they can move their head to the drink.

Use adapted cutlery to make mealtimes easier

Weakness in the fingers and hands can make gripping cutlery difficult. Strap-on or contoured grip cutlery can make eating easier.

Make healthy, soft food dips for easier swallowing

For instance, homemade hummus and guacamole are some great-tasting, simple to make, healthy snack ideas that do not require any chewing.

Around the house

Install grab bars to make getting around easier

Grab bars are an inexpensive way to make getting around the home easier. Whether that is getting into and out of a wheelchair, getting into the shower, going up the stairs or getting out of bed.

Convert a ground-floor room into an accessible bedroom

This eliminates the need for climbing stairs, which can be difficult as muscles weaken.

Put corner protectors on sharp- edged furniture

Corner protectors help prevent cuts and bruises from falls, which may become more common as DMD progresses.

Get a pressure-relief mattress for sounder sleep

Muscle weakness can make it more difficult to find a comfortable sleeping position. A pressure-relief mattress may provide greater support and comfort.

At school

Use a gripping aid for tablets and keyboards

Muscle weakness can make using a smartphone, tablet or computer more difficult. Mouldable gripping aid shapes can aid touchscreen use and typing.

Put paintbrushes through a tennis ball for better grip

Limited grip strength can make activities like painting challenging, but there is no need to miss out on art class! Try poking paintbrushes through an old tennis ball for an easier grip.

Speech-to-text apps or programs can document what you say

As writing and typing become more challenging, you might want to download a speech-to-text app, which ‘types’ what you say.

In the bathroom

Get a hair-washing tray for easier and more comfortable hair washing in the sink

Quicker, less messy and more comfortable, hair-washing trays are an inexpensive way to modify your bathroom.

Install a walk-in bathtub for easier bathing

While they are one of the more expensive home modifications, walk-in bathtubs make getting in and out of the bath a whole lot simpler.

Get a shower chair or stool to stay safe in the bathroom

Shower chairs or stools can make getting cleaned up a lot safer and easier.

Toilet safety rails provide extra stability at a low cost

Adjustable, removable bars that fit right around the toilet can add that bit more of convenience.

For caregivers

Prepare for difficult conversations

Be clear on what is important to you by making notes before difficult or serious conversations – whether it is with family members, friends or healthcare professionals.

Make a ‘self-care’ list

Keep a list of activities that make you feel good on those days you need a pick-me-up. Examples could be having a massage, listening to music, going outside or seeing a friend.

Schedule regular time off each week

Caring for someone with a disability can be tiring – both physically and emotionally. Taking breaks is an important way for you to stay healthy – both for yourself and your loved one.

Get a pressure-relief mattress for sounder sleep

Muscle weakness can make it more difficult to find a comfortable sleeping position. A pressure-relief mattress may provide greater support and comfort.

At the doctors

Make the most of doctor’s appointments by coming prepared with a list of questions

Keep a list of any questions you may have about your child or young person’s care so that you can voice any concerns when the time comes.

Keep a ‘medical folder’ of important information

Keeping all forms and medical information together makes it easier to find the information you need, when you need it.

Ask for copies of doctor’s notes so you can look up information at home

That way you can pay extra attention to what the doctor is saying instead of worrying about remembering medical conditions or test results.


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Date of preparation: September 2022

Important Terms and Concepts

Basic terms and key definitions

Neuromuscular disorders

Neuromuscular disorders affect the muscles and nerves, and most of the causes are genetic. This means they are either passed down through the family or caused by changes in an individual person’s genes.

Most neuromuscular disorders cause muscle weakness that worsens over time. Signs and symptoms of neuromuscular diseases can vary and may be mild, moderate, or severe.

Most often, when a child has a neuromuscular disease, they don’t grow and develop as fast as other children their age. They are often slow to start lifting their head, sitting, walking, and talking.

Treatment and supportive care may improve the symptoms of a neuromuscular disorder, increasing mobility and even life expectancy.

Muscular dystrophy

Muscular dystrophy is the term for a group of neuromuscular disorders that cause muscle weakness and muscle loss.

Duchenne muscular dystrophy (DMD) is a type of muscular dystrophy that causes muscle weakness that worsens over time. The progression and symptoms can vary from person to person.