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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:
such as ramps, wider doorways and stairlifts, to help make moving around the house as easy as possible.
such as braces, walkers, motorized scooters, or wheelchairs, to go places without having to rely on others.
include either more accessible and accommodating mainstream schools or special education schools.
Browse the life hacks below for practical tips, tricks, and creative ways to make everyday life with DMD simpler and more enjoyable!
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.
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.
Weakness in the fingers and hands can make gripping cutlery difficult. Strap-on or contoured grip cutlery can make eating easier.
For instance, homemade hummus and guacamole are some great-tasting, simple to make, healthy snack ideas that do not require any chewing.
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.
This eliminates the need for climbing stairs, which can be difficult as muscles weaken.
Corner protectors help prevent cuts and bruises from falls, which may become more common as DMD progresses.
Muscle weakness can make it more difficult to find a comfortable sleeping position. A pressure-relief mattress may provide greater support and comfort.
Muscle weakness can make using a smartphone, tablet or computer more difficult. Mouldable gripping aid shapes can aid touchscreen use and typing.
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.
As writing and typing become more challenging, you might want to download a speech-to-text app, which ‘types’ what you say.
Quicker, less messy and more comfortable, hair-washing trays are an inexpensive way to modify your bathroom.
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.
Shower chairs or stools can make getting cleaned up a lot safer and easier.
Adjustable, removable bars that fit right around the toilet can add that bit more of convenience.
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.
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.
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.
Muscle weakness can make it more difficult to find a comfortable sleeping position. A pressure-relief mattress may provide greater support and comfort.
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.
Keeping all forms and medical information together makes it easier to find the information you need, when you need it.
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
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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 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.
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