Despite the challenges it presents, a diagnosis of Duchenne muscular dystrophy (DMD) doesn’t mean your child can’t live a fulfilling and productive life. In this section, learn how certain lifestyle adjustments can help your child participate at home and in school as fully as possible, allowing them to enjoy the same education and ambitions as any other child.
Tips for living with Duchenne muscular dystrophy
Browse the tips below for practical advice and creative suggestions to make everyday living with DMD simpler and more enjoyable for your child.
Eating and drinking
Muscle weakness caused by DMD can make chewing and swallowing difficult. Try mincing tougher meats, fruits and vegetables in a blender or food processer before mealtimes.
Make sure smoothies (or any thick drink) are thin enough so straws don’t get clogged.
Weakness in the fingers and hands can make gripping cutlery difficult. Adapted cutlery is available that can make eating easier.
Smooth hummus and yoghurt are convenient, healthy snack ideas for your child that do not require any chewing.
Around the house
Grab bars can make getting around the home safer — particularly in the bathroom.
This eliminates the need for climbing stairs, which can be difficult as your child’s 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 for your child to find a comfortable sleeping position. A pressure-relief mattress may provide greater support and comfort.
Muscle weakness can make using a computer or tablet more difficult. To help, a variety of specially adapted keyboard, mouse and pointer options are available.
Limited grip strength can make activities like painting challenging. Try punching paintbrushes or pens through a 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 your child says.
In the bathroom
A shampoo tray sits on a child’s shoulders and supports their neck, allowing hair to be comfortably washed in the kitchen or bathroom sink.
While they are one of the more expensive home modifications, walk-in baths make getting in and out of the bath much simpler.
Shower chairs or benches can make bathing a lot safer for your child.
Adjustable, removable bars that fit right around the toilet can make going to the bathroom more straightforward.
It’s important to talk to someone if you feel you aren’t able to cope. Ask family and friends for their help or see what local support groups are available in your area.
Keep a list of activities that make you feel good on those days you need a pick-me-up. Examples could be having a bath, exercising or going outside.
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 doctor's
Keep a list of any questions you have about your child’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.
That way you can pay extra attention to what the doctor is saying instead of worrying about remembering medical conditions or test results.
Transitioning from paediatric to adult care
As your child transitions into adulthood, it is normal to feel a lot of different emotions. While you may be happy for your child, you may also struggle to let them go after so many years in your care. Here is some advice to make the process as smooth as possible.14
Helping them plan14
As they will soon be making more decisions and taking on more responsibilities, help your teenager to plan, prepare and access the support they need as they transition from childhood to adulthood.
Finding a care worker14
Your child may decide to have a personal assistant or care worker, rather than rely on you for their care. Your local authority will be able to provide advice on finding a suitable carer.
If your child decides they want to leave home, either to live on their own or in shared accommodation, you can explore different housing options with them. It’s important to remember that it may be difficult to get the sort of accommodation your child wants.
Your personal wellbeing14
Take time for your own feelings and make sure you seek out support if you feel you need to talk to someone.
A changing relationship14
As they become more independent, you will most likely develop a new relationship with your child. This could mean you can focus more on just being ‘Mum’ or ‘Dad’ and enjoy doing fun things together, rather than being a carer.
As children get older and 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 possible3,4
- Mobility devices such as braces, walkers, motorised scooters or wheelchairs, to go places without having to rely on others15
- Educational support to accommodate any learning or behavioural difficulties faced at school16
Duchenne muscular dystrophy at school
Why education is so important
School teaches children independence, provides them with opportunities to learn and helps them meet friends — skills that will help shape their lives.17
How can life at school be improved?
Adjustments at school17,18
Most children with DMD can attend pre-school and primary school without any problems. However, as the condition progresses, some adjustments may need to be made.
It is important that you contact the school and provide them with as much information as you can about DMD. That way the teachers can:
- Provide special equipment
- Arrange transport to and from school
- Adapt the curriculum to the individual
- Monitor any needs throughout the school year
- Offer extra support for any learning or behavioural problems
- Provide additional time for schoolwork
- Be flexible with attendance
- Educate other students about DMD (with your permission)
What does the school need to know?17,18
The needs of a student with DMD may be very different from those of other children. Be sure to tell the teacher if your child:
- Needs classroom accommodations, e.g. space for a wheelchair
- Requires tutoring or special education
- Needs assistance getting around, eating or going to the toilet
- Has any emotional or behavioural problems
- Needs to bring adaptive equipment to school
- Needs to take medications during the school day
- May need special considerations about lateness and missed classes and/or homework
- Is open about discussing DMD with classmates, other parents and other teachers
To help teachers understand DMD and meet your child’s needs in the classroom, refer them to Parent Project Muscular Dystrophy’s ‘Education Matters’ Classroom Resources for more information.
Talking to teachers — where to start17,18
- Request a kick-off meeting with the members of staff who will be involved in your child or young person’s education
- Openly discuss any concerns, special needs or ideas you may have
- Provide information about DMD and the treatments/therapies your child or young person is receiving
For more advice about how to talk to teachers and school staff about your child, have a look at the Parent Project Muscular Dystrophy’s ‘Education Matters’ Classroom Resources.
Common assumptions to rethink about DMD at school
If your child has DMD, the thought of sending them to school can be daunting. You may worry about them falling, being bullied or going through the unnecessary stress of exams and other assignments.
While it is perfectly normal for parents, caregivers, teachers and even the child living with DMD to have fears around school, it is important to understand that they are not always based on reality.
Separating fact from fiction can make a huge difference in helping your child get the best educational experience possible.
“Because my child has DMD, they will be better off in a special education school.”
While you may think that a DMD diagnosis means your child should attend a special education school, children with DMD should generally attend mainstream schools if possible. This is so that they can experience and learn from the ‘real world’.
However, keep in mind that as the disease progresses, an alternative or specialised school that can support the needs of your child or young person may be your best option.
“Because my child has DMD, they will not be able to participate in school activities or trips.”
Having DMD does not mean that your child should be excluded from participating in school activities.
Openly discuss your child’s capabilities and limitations with the school. Together, you can decide whether any modifications or special adjustments can be made. For example, building ramps for wheelchairs, providing more time for exams, or choosing games that do not require physical strength.
“My child will be teased or bullied about having DMD.”
Research has shown that children are less likely to tease and more likely to defend a student with DMD when they understand the condition. Talk to the school about how to raise the topic of DMD with other students.
“The teacher will know the best thing to do.”
This may or may not be the first time your child’s teacher has had a student with DMD in their class. Be prepared to openly discuss your child’s condition and provide teachers with guidance and information about DMD.
“My child will not be able to keep up with their classmates.”
While it is true that children living with DMD may need assistance with physical activities and help to address learning disabilities, they can still follow the classroom curriculum and participate in class activities.
Rather than focusing on what a student living with DMD cannot do, focus on what they can do. Work with your child’s teacher to set realistic goals and concentrate on their strengths. You could also talk to the school about developing an individualised education programme (IEP).
Caring for someone with DMD can be hard. Visit the carer support space to find out more about what help is available to you.Carer support space
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 October 2022].
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 October 2022].
3. Muscular Dystrophy UK. Adaptations manual: for children and adults with muscle-wasting conditions. Available at https://www.musculardystrophyuk.org/static/s3fs-public/2021-06/Adaptions-manual.pdf [last accessed October 2022].
4. Muscular Dystrophy Association. Accessible living: the comforts of home. Available at https://www.mda.org/quest/article/accessible-living-comforts-home [last accessed October 2022].
5. Muscular Dystrophy Association. Guide for caregivers. Available at https://www.mda.org/sites/default/files/Guide-For-Caregivers-2018.pdf [last accessed October 2022].
6. Muscular Dystrophy Association. One good turn. Available at https://www.mda.org/quest/article/one-good-turn [last accessed October 2022].
7. Dad in a Shed. Mouldable Strap Stylus. Available at https://dadinashed.com/?product=mouldable-strap-stylus [last accessed October 2022].
8. Neil Squire Society. LipSync Update: Open-Source Assistive Technologies. Available at https://www.neilsquire.ca/lipsync-update-opensource-assistive-technologies/ [last accessed October 2022].
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 October 2022].
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 October 2022].
11. Age Co. The Age Co walk-in baths and showers range. Available at https://www.ageukmobility.co.uk/product-category/baths-and-showers [last accessed October 2022].
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 October 2022].
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 October 2022].
14. Duchenne UK. DMD Family Folder: Guide to Adolescence and Adulthood. Available at https://res.cloudinary.com/studio-republic/images/v1631030520/DMD-Family-Folder-Adolescence-and-Adulthood-complete-reduced-size/DMD-Family-Folder-Adolescence-and-Adulthood-complete-reduced-size-pdf [last accessed October 2022].
15. NYU Langone Health. Mobility aids & orthotic devices for muscular dystrophy. Available at https://nyulangone.org/conditions/muscular-dystrophy/treatments/mobility-aids-orthotic-devices-for-muscular-dystrophy [last accessed October 2022].
16. Duchenne UK. Educational Support. Available at https://www.duchenneuk.org/support-with-education/ [last accessed October 2022].
17. Parent Project Muscular Dystrophy. An introduction to education matters for parents. Available at https://www.parentprojectmd.org/wp-content/uploads/2018/04/EdMatters_Parents.pdf [last accessed October 2022].
18. Parent Project Muscular Dystrophy. Education matters: a teacher’s guide to Duchenne muscular dystrophy. Available at https://www.parentprojectmd.org/wp-content/uploads/2018/04/EdMatters_Teachers.pdf [last accessed October 2022].
19. Muscular Dystrophy UK. Inclusive education for children with muscle-wasting conditions: a guide for schools and parents. Available at https://www.musculardystrophyuk.org/static/s3fs-public/2021-05/Education-Guidelines-factsheet.pdf [last accessed October 2022].
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GL-DMD-0662 | October 2022