Life hacks for Duchenne muscular dystrophy

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

Eating and drinking

Mince hard-to-chew food in a blender for easy swallowing1,2

Muscle weakness can make chewing and swallowing difficult. Try mincing meat, salads and hard fruit in a food processor to a pâté-like consistency.

Use straws to make drinking out of cups easier1

There is no need to lift up cups and bottles if you add a straw!

Use adapted cutlery to make mealtimes easier3

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 swallowing1,2

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 easier4

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 bedroom3

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

Put corner protectors on sharp-edged furniture8

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

Get a pressure-relief mattress for sounder sleep5

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 keyboards6

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 grip7

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 programmes can document what you say9

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 sink10

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

Install a walk-in bathtub for easier bathing11

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 bathroom10

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

Toilet safety rails provide extra stability at a low cost3

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

For caregivers12

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.

At the doctors

Make the most of doctor’s appointments by coming prepared with a list of questions13

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 information13,14

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 home14

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

Ask your DMD team about sources of helpful equipment

1. Muscular Dystrophy Association. ‘I can eat that!’ cookbook for easy chewing and swallowing. Available at https://www.mda.org/quest/article/i-can-eat-cookbook-easy-chewing-and-swallowing [last accessed March 2021].
2. University Health Network. Minced and moist foods for people with dysphagia. Available at http://www.uhn.ca/PatientsFamilies/Health_Information/Health_Topics/Documents/Minced_Foods_for_people_with_dysphagia.pdf [last accessed March 2021].
3. Muscular Dystrophy UK. Adaptations manual: for children and adults with muscle-wasting conditions. Available at http://www.musculardystrophyuk.org/wp-content/uploads/2017/04/INF23-A-%C2%AD-Adapt-web.pdf [last accessed March 2021].
4. Muscular Dystrophy Association. Accessible living: the comforts of home. Available at https://www.mda.org/quest/article/accessible-living-comforts-home [last accessed March 2021].
5. Muscular Dystrophy Association. One good turn. Available at https://www.mda.org/quest/article/one-good-turn [last accessed March 2021].
6. Assistive Technology – DTSL. ShapeIt finger stylus. Available at http://assistive.dtsl.co.nz/products/18092-shapeit-finger-stylus.aspx [last accessed March 2021].
7. Pinterest. Disability gadgets, DIY, tips and tricks. Available at https://pin.it/m7udt2lbedblqw [last accessed March 2021].
8. Muscular Dystrophy Association. Guide for caregivers. Available at https://www.mda.org/sites/default/files/Guide-For-Caregivers-2018.pdf [last accessed March 2021].
9. Understood. Dictation (speech-to-text) technology: what it is and how it works. Available at https://www.understood.org/en/school-learning/assistive-technology/assistive-technologies-basics/dictation-speech-to-text-technology-what-it-is-and-how-it-works [last accessed March 2021].
10. Muscular Dystrophy Association. Splish splash: easier ways to get clean. Available at https://www.mda.org/quest/article/splish-splash-easier-ways-get-clean [last accessed March 2021].
11. Age UK. The Age UK walk-in baths and showers range. Available at https://www.ageukmobility.co.uk/product-category/baths-and-showers [last accessed March 2021].
12. Mind. How to cope when supporting someone else. Available at https://www.mind.org.uk/media-a/2903/supporting-someone-else-2017.pdf [last accessed March 2021].
13. Muscular Dystrophy News Today. Being organized for doctor’s appointments. Available at https://musculardystrophynews.com/2018/01/09/muscular-dystrophy-tips-being-organized-doctors-appointments [last accessed March 2021].
14. Better Health While Aging. Tools for caregivers: keeping & organizing medical information. Available at https://betterhealthwhileaging.net/tools-for-caregivers-keeping-organizing-medical-information [last accessed March 2021].

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