Living With Duchenne – Welcome to Duchenne and You

Living with Duchenne Muscular Dystrophy (DMD)

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Overview

A DMD diagnosis is devastating—but it doesn’t have to defeat you or your child.

People live productive, creative, and fulfilling lives with DMD.
More and more young adults with DMD are attending university, pursuing rewarding careers and even having families of their own.

To help your child make the most of their future, start by finding out what adaptations can be made to enable them to participate in school as fully as possible. They deserve the same access to learning as any other child.

Then, connect with other people who are going through DMD. Talking to others about having DMD can be daunting, in this section we also provide you with some tips on deciding who to tell, where to start, how to explain what it is like to live with DMD, answering questions, and importantly, responding to people’s reactions.

Read more below—we hope it helps you build a better life with DMD.

What to expect from DMD

The symptoms of DMD are different for each child and the rate at which symptoms worsen varies. And, as time goes on, the symptoms of DMD will change:

As the muscles get weaker, the ability to walk is slowly lost
As the back muscles become weaker, the spine may begin to curve (called scoliosis)
In late childhood to early adulthood, the upper body and arm muscles also weaken
The heart and respiratory (or breathing) muscles also weaken over time, which can lead to complications

As DMD is a progressive disease, meaning the symptoms become more apparent over time, it is important to get your child the right treatments and management as soon as possible. This gives your child the best chance of maintaining their independence and quality of life for as long as possible.

Getting the Right Support

_

A DMD diagnosis can turn your world upside down, but you do not have to go through it alone. Family, friends, doctors, nurse, therapists and online communities can all serve as great pillars of support and comfort to fall back on in difficult times.

Types of support

You can divide support networks into both formal and informal types—and you should make use of both:

Formal support networks

People whose job or organization dedicates the to helping care for you and your child—like healthcare professionals, patient groups and professional organizations.

Informal support networks

People who help out in a practical way and are there for you when you need them, like friends and family members.

Having a strong network of supportive people that you can rely on means that you can:

Get help with the practical aspects of life (for example, medications, child care, schools, home adjustments, transportation and finances)
Have access to expert knowledge (as from doctors, nurses and therapists
Join an online community so you can talk, get advice and share stories with families who are experiencing similar things to you
Get reassurance and support at times when you might feel hopeless or alone. For more support on DMD please visit the following websites

Cure Duchenne

Cure Duchenne partners with biotech and pharmaceutical companies, academic institutions, and other organizations to help find a cure for Duchenne muscular dystrophy.

https://cureduchenne.org/

Muscular Dystrophy Association (MDA)

PPMD is the largest, most comprehensive nonprofit organization in the United States focused on ending Duchenne muscular dystrophy through research, advocacy, care, and education.

https://www.parentprojectmd.org/

How to build and strengthen your support network

Taking time to maintain your support network may be difficult, but it is critical.

It can be easy to start spending less time to loved ones and friends after a DMD diagnosis. You may find yourself busy taking care of your family, your priorities may change, or you may feel too emotionally drained to see other people. But maintaining contact with your current network and reaching out to other DMD families will:

Help you feel less isolated
Give you people to talk to
Give you access to experience and insight

Try following these 5 steps to help strengthen your relationships with the people who matter:

Touch base often

Make an effort to catch up with family and friends on a regular basis. This does not always have to be face-to-face – a simple phone call or email will suffice.

Tip: If you are short on time, try writing out a ‘template’ email that contains all your family news. Later, you can personalize the content depending on who you are writing to.

Make time

Meeting with family and friends is a great way of taking a break and clearing your head. That is why it is important to make it a priority and not just an afterthought when you have free time.

Tip: Try using your phone or calendar to make social event planning part of your schedule. This way, your phone will automatically send you reminders, which will encourage you to make plans.

Allow people to help

It can be hard to ask for or accept support, but loved ones, friends, co-workers, and neighbors often want to help. Let them know what you need, as well as how and when they can help.

Tip: Make a list of things that need doing. If someone asks to help, show them the list and let them choose what they can take off your hands.

Show appreciation

It is important to remind your loved ones how important they are to you and how much you value their support. Make sure to express how you feel and do things that show how well you know and care for them.

Tip: When showing your gratitude, make sure to focus on the other person. Do something that they would perceive as caring. This could be treating them to lunch or a quick cup of coffee, writing a thank-you note, giving them an inspirational book or simply asking how they are.

Share what is on your mind

Try to be open and honest about the way you are feeling and what you are going through. While it can be scary to say what is on your mind, it is also a pathway to a deeper connection with others.

Getting the support you need

Unsure about where to start? Ask your family doctor to refer you to a social worker or counselor and review the DMD support groups available here.

Finding a like-minded community

You are not alone facing the challenges of DMD. There will be a number of patient organizations and groups that you can go to for more information and support.

Why Education Is So Important

_

School teaches children independence, provides them with opportunities to learn and helps them meet friends – skills that will enrich their entire lives.

Adjustments at school

You can divide support networks into both formal and informal types—and you should make use of both:

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 behavioral problems
Provide additional time for schoolwork
Be flexible with attendance
Educate other students about DMD (with your permission)

Talking to teachers – where to start

Request a kick-off meeting

with the members of staff who will be involved in your child’s education.

Openly discuss

any concerns, special needs or ideas you may have.

Provide information

about DMD and the treatments/therapies your child is receiving.

What does the school need to know?

The needs of a student with DMD may be very different from those of other children. Be sure to tell the teacher whether your child:

Needs classroom accommodations, like space for a wheelchair
Requires tutoring or special education
Needs assistance getting around, eating, or going to the toilet
Has any emotional or behavioral 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

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 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.

Assumption

Because my child has DMD, they will be better off in special education

Reality

While you may think that a DMD diagnosis means attending a special education program, if possible, children with DMD should attend mainstream schools. This is so that children with the condition can experience and learn from the ‘real world’.

However, keep in mind that things can change. As the disease progresses, an alternative or specialized school that can support the needs of your child may be your best option.

Assumption

Because my child has DMD, they should not participate in school activities or trips

Reality

Having DMD does not mean that your child cannot participate in school activities.

Openly discuss your child capabilities and limitations with the school. Together, you can decide whether any modifications or special adjustments need to be made. (For example, building ramps for wheelchairs, providing more time for exams, or finding games that do not require physical strength.)

Assumption

My child will be teased or bullied about DMD

Reality

Talk to the school about how to raise the topic of DMD with other students. Research has shown that children are less likely to tease and more likely to defend a student with DMD when they understand the condition.

To help teachers discuss DMD in the classroom, refer them to Parent Project Muscular Dystrophy’s resources for teachers here.

Assumption

The teacher will know exactly what to do

Reality

This may or may not be the first time your child’s teacher has had a student with DMD in their classroom. Be prepared to openly discuss your child’s condition and provide teachers with guidance and information about DMD.

To help inform teachers about DMD, refer them to Parent Project Muscular Dystrophy’s resources for teachers here.

Assumption

My child will not be able to keep up with their classmates

Reality

While it is true that children 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 the disability and what the student cannot do, focus on what the student can do. Work with your child’s teacher to set realistic goals and focus on the student’s strengths. You could also talk to the school about developing an individualized educational program (IEP).

More resources

To help teachers understand DMD and meet child’s needs in the classroom, refer them to Parent Project Muscular Dystrophy’s resources for teachers here.

To learn more about how to talk to teachers and school staff, look at Parent Project Muscular Dystrophy’s ‘Education Matters’ guides, here.

Telling Others About DMD: How To Make It Easier

_

Telling your friends and family about DMD can be daunting, but it is a vital part of the coping process. Once people close to you know, they can serve as strong pillars of support.

While there is no right or wrong way to break the news, taking these five steps may help make it a little easier:

Decide who to tell

While it is entirely up to you who you tell – or do not tell – it is usually a good idea to be open with your loved ones about DMD.

Start with the basics

Both adults and children deal with a situation better if they feel they understand it. A good rule of thumb is to start by telling people what you feel they will be able to comprehend.

When talking to adults, go into as much detail as you feel is appropriate. You might want to have some information on hand – this can help you if you get stuck for what to say
When talking to children, it is best to provide simple, age-appropriate explanations to help them grasp what is happening

Download our age-appropriate books to help children learn about DMD. It is important to:
– Stress that DMD is nobody’s fault
– Reassure your loved ones that nothing anyone did or did not do could have caused DMD
– Explain that DMD is a disease that people are born with

Explain what it is like to live with DMD

Explain how DMD affects your child’s everyday life. Review things like physical challenges, emotional reactions and medical treatments.

Answer questions openly and honestly

Try to create an environment where people feel safe asking questions and sharing feelings. This is particularly important for children, as questions enable you to correct misunderstandings and help them express feelings.

Let people deal with the news in their own way

You will probably find that different people react to the DMD diagnosis in different ways. Some may want lots of information while others will not want to hear about the ‘medical’ side of DMD. Some may find it difficult to discuss feelings while others may not be able to stop. Some may want to surround themselves with people while others may wish to be alone.

Communicate what feels right for you and/or your loved one and listen to what others tell you works for them.

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.

Living with Duchenne Muscular Dystrophy (DMD)

_

Overview

A DMD diagnosis is devastating—but it doesn’t have to defeat you or your child.

People live productive, creative, and fulfilling lives with DMD.
More and more young adults with DMD are attending university, pursuing rewarding careers and even having families of their own.

Read more below—we hope it helps you build a better life with DMD.

What to expect from DMD

The symptoms of DMD are different for each child and the rate at which symptoms worsen varies. And, as time goes on, the symptoms of DMD will change:

As the muscles get weaker, the ability to walk is slowly lost
As the back muscles become weaker, the spine may begin to curve (called scoliosis)
In late childhood to early adulthood, the upper body and arm muscles also weaken
The heart and respiratory (or breathing) muscles also weaken over time, which can lead to complications

Getting the Right Support

_

Types of support

You can divide support networks into both formal and informal types—and you should make use of both:

Formal support networks

People whose job or organization dedicates the to helping care for you and your child—like healthcare professionals, patient groups and professional organizations.

Informal support networks

People who help out in a practical way and are there for you when you need them, like friends and family members.

Having a strong network of supportive people that you can rely on means that you can:

Get help with the practical aspects of life (for example, medications, child care, schools, home adjustments, transportation and finances)
Have access to expert knowledge (as from doctors, nurses and therapists
Join an online community so you can talk, get advice and share stories with families who are experiencing similar things to you
Get reassurance and support at times when you might feel hopeless or alone. For more support on DMD please visit the following websites

Cure Duchenne

Cure Duchenne partners with biotech and pharmaceutical companies, academic institutions, and other organizations to help find a cure for Duchenne muscular dystrophy.

https://cureduchenne.org/

Muscular Dystrophy Association (MDA)

PPMD is the largest, most comprehensive nonprofit organization in the United States focused on ending Duchenne muscular dystrophy through research, advocacy, care, and education.

https://www.parentprojectmd.org/

How to build and strengthen your support network

Taking time to maintain your support network may be difficult, but it is critical.

Help you feel less isolated
Give you people to talk to
Give you access to experience and insight

Try following these 5 steps to help strengthen your relationships with the people who matter:

Touch base often

Make an effort to catch up with family and friends on a regular basis. This does not always have to be face-to-face – a simple phone call or email will suffice.

Tip: If you are short on time, try writing out a ‘template’ email that contains all your family news. Later, you can personalize the content depending on who you are writing to.

Make time

Allow people to help

It can be hard to ask for or accept support, but loved ones, friends, co-workers, and neighbors often want to help. Let them know what you need, as well as how and when they can help.

Tip: Make a list of things that need doing. If someone asks to help, show them the list and let them choose what they can take off your hands.

Show appreciation

Share what is on your mind

Try to be open and honest about the way you are feeling and what you are going through. While it can be scary to say what is on your mind, it is also a pathway to a deeper connection with others.

Getting the support you need

Unsure about where to start? Ask your family doctor to refer you to a social worker or counselor and review the DMD support groups available here.

Finding a like-minded community

You are not alone facing the challenges of DMD. There will be a number of patient organizations and groups that you can go to for more information and support.

Why Education Is So Important

_

School teaches children independence, provides them with opportunities to learn and helps them meet friends – skills that will enrich their entire lives.

Adjustments at school

You can divide support networks into both formal and informal types—and you should make use of both:

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 behavioral problems
Provide additional time for schoolwork
Be flexible with attendance
Educate other students about DMD (with your permission)

Talking to teachers – where to start

Request a kick-off meeting

with the members of staff who will be involved in your child’s education.

Openly discuss

any concerns, special needs or ideas you may have.

Provide information

about DMD and the treatments/therapies your child is receiving.

What does the school need to know?

The needs of a student with DMD may be very different from those of other children. Be sure to tell the teacher whether your child:

Needs classroom accommodations, like space for a wheelchair
Requires tutoring or special education
Needs assistance getting around, eating, or going to the toilet
Has any emotional or behavioral 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

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 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.

Assumption

Because my child has DMD, they will be better off in special education

Reality

However, keep in mind that things can change. As the disease progresses, an alternative or specialized school that can support the needs of your child may be your best option.

Assumption

Because my child has DMD, they should not participate in school activities or trips

Reality

Having DMD does not mean that your child cannot participate in school activities.

Assumption

My child will be teased or bullied about DMD

Reality

To help teachers discuss DMD in the classroom, refer them to Parent Project Muscular Dystrophy’s resources for teachers here.

Assumption

The teacher will know exactly what to do

Reality

To help inform teachers about DMD, refer them to Parent Project Muscular Dystrophy’s resources for teachers here.

Assumption

My child will not be able to keep up with their classmates

Reality

More resources

To help teachers understand DMD and meet child’s needs in the classroom, refer them to Parent Project Muscular Dystrophy’s resources for teachers here.

To learn more about how to talk to teachers and school staff, look at Parent Project Muscular Dystrophy’s ‘Education Matters’ guides, here.

Telling Others About DMD: How To Make It Easier

_

Telling your friends and family about DMD can be daunting, but it is a vital part of the coping process. Once people close to you know, they can serve as strong pillars of support.

While there is no right or wrong way to break the news, taking these five steps may help make it a little easier:

Decide who to tell

While it is entirely up to you who you tell – or do not tell – it is usually a good idea to be open with your loved ones about DMD.

Start with the basics

Both adults and children deal with a situation better if they feel they understand it. A good rule of thumb is to start by telling people what you feel they will be able to comprehend.

When talking to adults, go into as much detail as you feel is appropriate. You might want to have some information on hand – this can help you if you get stuck for what to say
When talking to children, it is best to provide simple, age-appropriate explanations to help them grasp what is happening

Explain what it is like to live with DMD

Explain how DMD affects your child’s everyday life. Review things like physical challenges, emotional reactions and medical treatments.

Answer questions openly and honestly

Let people deal with the news in their own way

Communicate what feels right for you and/or your loved one and listen to what others tell you works for them.

Keeping Independence

_

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.

References

Amato AA, Brown RH Jr. Muscular dystrophies and other muscle diseases. In: Longo DL, et al., editors. Harrison’s principles of internal medicine. 19th edition.

Birnkrant DJ, et al. Lancet Neurol. 2018;17:251–267 [Part 1].

Birnkrant DJ, et al. Lancet Neurol. 2018;17:445–455 [Part 3].

Sussman M. J Am Acad Orthop Surg. 2002;10:138–151.

van Ruiten HJA, et al. Arch Dis Child. 2014;99:1074–1077.

Carers Trust. Tackling loneliness. Available at https://carers.org/health-and-wellbeing/tackling-loneliness [last accessed March 2021].

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].

Muscular Dystrophy Association. The diagnosis and management of Duchenne muscular dystrophy: a guide for families. Available at https://www.parentprojectmd.org/wp-content/uploads/2018/09/CareGuideForFamilies_2018.pdf [last accessed March 2021]. .

Muscular Dystrophy UK. Inclusive education for children with muscle-wasting conditions: a guide for schools and parents. Available at http://www.musculardystrophyuk.org/wp-content/uploads/2016/09/Education-Guidelines-in-full.pdf [last accessed March 2021].

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 March 2021].

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 March 2021]. .

Parent Project Muscular Dystrophy. Adjusting to the diagnosis. Available at https://www.parentprojectmd.org/care/for-families/for-newly-diagnosed/adjusting-to-the-diagnosis/ [last accessed March 2021].

Parent Project Muscular Dystrophy. Psychology of Duchenne muscular dystrophy. Available at https://www.parentprojectmd.org/wp-content/uploads/2018/04/Psychology_of_Duchenne.pdf [last accessed March 2021].

Poysky J. Talking about neuromuscular disorders. Available at https://www.parentprojectmd.org/wp-content/uploads/2018/04/Talking_About_Duchenne_Poysky.pdf [last accessed March 2021].

Assistive Technology – DTSL. ShapeIt finger stylus. Available at http://assistive.dtsl.co.nz/products/18092-shapeit-finger-stylus.aspx [last accessed March 2021].

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].

Duchenne UK. Decipha – education support. Available at https://www.duchenneuk.org/your-roadmap-for-life [last accessed March 2021].

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].

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].

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].

Muscular Dystrophy Association. Guide for caregivers. Available at https://www.mda.org/sites/default/files/Guide-For-Caregivers-2018.pdf [last accessed March 2021].

Muscular Dystrophy Association. One good turn. Available at https://www.mda.org/quest/article/one-good-turn [last accessed March 2021].

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].

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].

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].

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 March 2021].

Pinterest. Disability gadgets, DIY, tips and tricks. Available at https://pin.it/m7udt2lbedblqw [last accessed March 2021].

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].

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].