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LIFE DOES NOT STOP WITH A DUCHENNE DIAGNOSIS
Despite the challenges of living with Duchenne, it is possible to have a productive, creative and fulfilling life. In fact, more and more young adults with Duchenne are attending university, pursuing rewarding careers and even having families of their own.
There are plenty of ways to make living with Duchenne that little bit easier for the whole family. Keep reading to find out how.
Achieving Independence as an Adult with Duchenne
Max's Story
Max Fernandez, a senior at Fordham University, has Duchenne muscular dystrophy, but it hasn’t stopped him from traveling the world and enjoying college life with the help of friends and family. In this video, Max shares his story, as well as challenges, common misconceptions about Duchenne, and advice for kids and parents.
How to Communicate with your Healthcare Providers
Once someone with Duchenne is in their teenage years, they will need to transition from a pediatric to an adult clinic. Knowing what to say to a doctor, and how, can be difficult, but this video has some useful tips. Sarah Tencer, MSW, talks about what to expect in your appointment, how to prepare for it, and what to do afterwards
KEEPING INDEPENDENT
As Duchenne 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
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EXPLAINING DUCHENNE TO OTHERS: HOW TO MAKE IT EASIER
Telling your friends and family about Duchenne can be daunting, but it is a vital part of the coping process. Once people close to you know, they can serve as great pillars of support.
While there is no right or wrong way to break the news, taking these 5 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 and honest with your loved ones about Duchenne.
In general, both adults and children can better deal with a situation if they feel they understand it. That is why it is important to provide the right amount of information about Duchenne and be willing to explain what it all means.
Start with the basics
A good rule of thumb is to start by telling people what you feel they will be able to understand and accept.
- When talking to adults, go into as much detail as you feel is appropriate. You might like 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
It is important to stress that Duchenne is nobody’s fault. Explain that Duchenne is a disease that people are born with. Reassure your loved ones that nothing anyone did or didn't do could have caused Duchenne.
Explain what it is like to live with Duchenne
Explain how Duchenne affects your child or loved one’s everyday life. This could include physical challenges, medical treatments and changes to expect for the future.
Most likely, your friends and family will want to know what they can do to help. Be specific in ways that they can help you. If you do not know what to say, simply tell them that you are grateful for their support.
Answer questions openly and honestly
People may ask questions about Duchenne – it shows that they are interested and concerned about your child or loved one. Questions are an opportunity to deal with any worries the person has together – with information and support.
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 news in different ways. Some may want lots of information while others will not want to hear about the ‘medical’ side of Duchenne. 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.
DUCHENNE AND SCHOOL – WHAT YOU NEED TO KNOW
Most children with Duchenne 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 Duchenne. 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 Duchenne (with your permission)
Why education is so important
School teaches children independence, provides opportunities to learn and helps them meet friends – skills that will help shape their lives. There is no reason why children with Duchenne should not have aspirations for the future. In fact, many young adults with Duchenne attend university, have careers, get married and have children.
TALKING TO TEACHERS – WHERE TO START
Request a kick-off meeting
with the members of staff who will be involved in your loved one’s education
Openly discuss
any concerns, special needs or ideas you may have
Provide information
about Duchenne and the treatments/therapies your loved one is receiving
WHAT DOES THE SCHOOL NEED TO KNOW?
The needs of a student with Duchenne may be very different from those of other children. Be sure to tell the teacher whether your child or loved one:
- 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 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 Duchenne with classmates, other parents and other teachers
COMMON ASSUMPTIONS TO RETHINK ABOUT DUCHENNE AT SCHOOL
If your child or loved one has Duchenne, 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 Duchenne 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 or loved one get the best educational experience possible.
Assumption
Because my child or loved one has Duchenne, they will be better off in a special education school
Reality
While you may think that a Duchenne diagnosis means attending special education, experts say otherwise. It is actually recommended that children with Duchenne attend mainstream schools. This is so children with the condition can experience and learn from the ‘real world’.
However, keep in mind that as the disease progresses, an alternative or specialized school that can support the needs of your child or loved one may be your best bet.
Assumption
Because my child or loved one has Duchenne, they should not participate in school activities or trips
Reality
Having Duchenne does not mean that your child or loved one should be excluded from participating in school activities.
Openly discuss your child or loved one'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 finding games that do not require physical strength.
Assumption
My child or loved one will be teased or bullied about Duchenne
Reality
Studies have shown that children are less likely to tease and more likely to defend a student with Duchenne when they understand the condition. Talk to the school about how to raise the topic of Duchenne with other students.
Assumption
The teacher will know exactly what to do
Reality
This may or may not be the first time your child or loved one's teacher has had a student with Duchenne in their class. Be prepared to openly discuss your child or loved one's condition and provide teachers with guidance and information about Duchenne.
Assumption
My child or loved one will not be able to keep up with their classmates
Reality
While it is true that children with Duchenne 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 or loved one teacher to set realistic goals and focus on the student’s strengths. You could also talk to the school about developing an individualized education programme (IEP).
DUCHENNE LIFE TIPS
Browse the life tips below for practical tips, tricks and creative ways to make everyday life with Duchenne simpler and more enjoyable!
EATING AND DRINKING
| Mince hard-to-chew food in a blender for easy swallowing | Use straws to make drinking out of cups easier | Use adapted cutlery to make mealtimes easier | Make healthy, soft food dips for easier swallowing |
| Muscle weakness can make chewing and swallowing difficult. Try mincing meat, salads and hard fruit in a food processor to a pâté-like consistency. | There is no need to lift up cups and bottles if you add a straw! | Weakness in the fingers and hands can make griping cutlery difficult. Strap-on or contoured grip cutlery can make eating easier. | Homemade hummus and guacamole are some great-tasting, simple to make, healthy snack ideas that do not require any chewing. |
| Mince hard-to-chew food in a blender for easy swallowing |
| 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 easier |
| There’s no need to lift up cups and bottles if you add a straw! |
| Use adapted cutlery to make mealtimes easier |
| Weakness in the fingers and hands can make griping cutlery difficult. Strap-on or contoured grip cutlery can make eating easier. |
| Make healthy, soft food dips for easier swallowing |
| Homemade hummus and guacamole are some great-tasting, simple to make, healthy snack ideas that don’t require any chewing. |
AROUND THE HOUSE
| Install grab bars to make getting around easier | Convert a ground floor room into an accessible bedroom | Put corner protectors on sharp-edged furniture | Get a pressure-relief mattress for sounder sleep |
| 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 Duchenne progresses. | Muscle weakness can make it more difficult to find a comfortable sleeping position. A pressure-relief mattress may provide greater support and comfort. |
| 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 Duchenne progresses. |
| Get a pressure-relief mattress for sounder sleep |
| A pressure-relief mattress may provide greater support and comfort. Muscle weakness can make it more difficult to find a comfortable sleeping position. |
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Ask your Duchenne team about sources of helpful equipment
AT SCHOOL
| Use a gripping aid for tablets and keyboards | Put paintbrushes through a tennis ball for better grip | Speech-to-text apps or programs can document what you say |
| Muscle weakness can make using a smartphone, tablet or computer more difficult. Moldable 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 becomes more challenging, you might want to download a speech-to-text app, which ‘types’ what you say. |
| Use a gripping aid for tablets and keyboards |
| Muscle weakness can make using a smartphone, tablet or computer more difficult. Moldable 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’s 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 becomes 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 | Install a walk-in bathtub for easier bathing | Get a shower chair or stool to stay safe in the bathroom | Toilet safety rails provide extra stability at a low cost |
| 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 make going to the toilet that bit more convenient. |
| 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 bathro |
| 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 make going to the toilet that bit more convenient. |
FOR CAREGIVERS
| Prepare for difficult conversations | Make a ‘self-care’ list | Schedule regular time off each week |
| Get clear on what is important to you before difficult or serious conversations by taking notes – 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. |
| Prepare for difficult conversations |
| Get clear on what’s important to you before difficult or serious conversations by taking notes – whether it's 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 DOCTOR'S
| Make the most of doctor’s appointments by coming prepared with a list of questions | Keep a ‘medical folder’ of important information | Ask for copies of doctor’s notes so you can look up information at home |
| Keep a list of any questions you may have about your child or loved one’s care so 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. |
| 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 loved one’s care so 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. |
GETTING THE RIGHT SUPPORT IS IMPORTANT FOR YOUR MENTAL WELLBEING
A Duchenne diagnosis can turn your world upside down, but you do not have to go through it alone. Family, friends, professionals and online communities can all serve as great pillars of support and comfort to fall back on in difficult times.
THERE ARE TWO TYPES OF PERSONAL SUPPORT NETWORKS AND YOU SHOULD MAKE USE OF BOTH
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
Formal support networks
Support from healthcare professionals, patient groups and professional organizations
Having a strong network of supportive people that you can trust and fall back on means 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 from healthcare professionals
- Join an online community so you can talk, get advice and share stories with families who are going through the same as you
- Get reassurance and support at times when you might feel hopeless or alone
HOW TO BUILD AND STRENGTHEN YOUR SUPPORT NETWORK
It can be easy – albeit unintentionally – to give less time to your friends and other loved ones after a Duchenne 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.
However, making time to maintain your support network is critical. 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.
Life 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.
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.
Life tip: make a tick 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.
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.
Life 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.
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 deeper connection with others.
Show appreciation
It's 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.
Life 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.
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Get the support you need
Unsure about where to start? Ask your family doctor to refer you to a social worker or counselor, and take a look at the Duchenne support groups available to you here.
Unsure about where to start? Ask your family doctor to refer you to a social worker or counselor, and take a look at the Duchenne support groups available to you here.