Being diagnosed with MND can be devastating and makes managing your emotions hard.
Living with a life limiting illness like MND brings constant challenges and changes. This can cause emotional distress and other concerns. Feeling unsupported by the care system can also add to feelings of distress.
Connections with family and others might get difficult, too. Your emotions and moods, general state of mind and relationships with others may also be impacted. A diagnosis of MND is emotional for everyone involved.
There are, however, positive ways to deal with emotions and your overall wellbeing.
Doing things each day to look after yourself can make a positive difference to your mental health. Looking after your mental health can have a big impact on your physical health and how you feel. Managing MND symptoms as they arise, and drawing on the support of your family, friends and health professionals can also make a difference.
Try to get plenty of rest, and keep doing things you enjoy. These and other strategies can help make you feel more relaxed and able to deal with MND. Talking with mental health professionals may be a useful source of support as well.
Looking after your mental health can help to lift your mood and feel a greater sense of hope and control. You’re also more likely to enjoy time with family and friends, your interests, hobbies and other things important to you.
People living with MND and those close to them can go through a range of strong emotions. Sharing your diagnosis with the people you love and care for can be hard. You may feel you have to manage the reactions of those you talk to. Dealing with this on top of your own feelings about your diagnosis can be a challenge.
It is normal to experience a range of emotions as you try to cope with MND. Feelings may affect people at different times in their illness in different ways, but can include:
Difficult emotions can be very uncomfortable. They can impact your ability to function day-to-day. Try to find the courage to talk to someone about how you are feeling. Talking can help you find support you need as you work through what is happening to you.
With MND some people may experience emotional lability, or pseudo-bulbar effect. Emotional lability causes emotional responses that may not match how you really feel. You may find yourself laughing or crying at the wrong time. This can be hard to control.
Emotional lability can be distressing for you and your family and friends. Knowing this is a symptom of MND makes it easier to manage. Talk with your healthcare team about techniques or medications that can help if emotional lability is causing you stress.
Some people with MND experience changes to their thinking and behaviour known as cognitive change. Cognitive changes in MND due to changes in the frontal and temporal lobes of the brain. If cognitive change is a factor you may need some extra support for you and your family.
There is no ‘right’ or ‘wrong’ way of dealing with MND. Not everybody wants to talk about what they are going through. Each person living with MND has a different experience of the disease.
There are a number of signs that could mean you would benefit from extra support. These can include:
These responses are understandable. They can be a common reaction to what you are experiencing. However, the behaviours can have a negative impact on you and those around you. You may find it helps to talk to people who you know and trust about how you feel. It is not always easy but seeking support is a great first step to feeling better.
If you find it hard to talk to people close to you, it may help for you to talk to other people about what’s going on, such as:
People with MND have individual support needs rather than ‘a one size fits all’. Your MND clinic, MND Association Advisor or Support Coordinator will be able to guide you towards the support you need.
When you change how you look after your mental health, it can help to do one thing at a time.
You might want to try:
Living with MND can be a challenge. But you can find ways to adapt and live with the disease. You might even be doing some of these already. Here’s a few suggestions that can make a difference:
Doing things you enjoy and find relaxing can lift your mood. You may find learning more about the activities below helpful.
With music therapy, music is used to support people to improve functioning and wellbeing.
Learn more about music therapy
Art therapists use visual arts (e.g. painting, drawing and sculpture) to help reduce stress and promote wellbeing.
Beyond Blue says “Being mindful means awareness of your own moment-to-moment internal and external experiences, with gentleness and acceptance and without judgment.” To learn more about mindfulness visit the Beyond Blue Mindfulness page
Watch a short video by Associate Professor Dr Craig Hassed from Monash University to learn how to start practising mindfulness.
Sleeping well helps with managing emotions and wellbeing. A good night’s sleep can make you feel restored, improve concentration and memory, and balance moods.
However, sleeping with MND can get harder because of immobility, excessive saliva, breathing issues and other problems.
Your healthcare team can help you find ways to support good sleeping habits. This may mean talking with an OT about the best bed for you, or a doctor about the best way to support your breathing overnight
Find out more about Sleeping and MND
Staying connected with your family, friends and others in your social circle matter has a positive affect on your mental health. Good relationships can help with a sense of belonging and understanding and reduce feelings of isolation.
You can turn to those close to you when you need to talk, and for emotional support when times are tough with MND.
It’s important to try to keep enjoying and maintaining your relationships with others. Some people will avoid talking to loved ones as they don’t want to worry them. Not only can sharing your worries and concerns help you organise your thoughts, it can help everyone to understand how you’re feeling, and in some situations help to find way of doing things that works best for everyone.
How MND will impact intimacy and your sexual relationship with your partner may be a worry for you. Talking with your partner and maintaining honest and open communication is important as MND progresses and things change.
You can help to maintain your relationships by doing things like:
Learn more about sexuality and intimacy with MND
When you are living with MND, it becomes harder to physically move. However, you can still find ways to be active. Research shows that being as physically active as you can supports better mental health.
Using mobility aids can help maintain your mobility for as long as possible. This might include using walking frames or ankle foot orthotics (a brace that holds your foot and ankle in the right position). If you are still able to walk but get tired, using a wheelchair can help. It will mean you can maintain your usual activities such as shopping and meeting friends and family for coffee or meals.
Don’t forget to speak with your OT or physio if you need some assistance with being active.
Being active with MND can include:
Find out more about physical activity and MND
Evidence shows that learning new skills can improve and maintain our mental health.
Learning new things can help you gain confidence and increase feelings of satisfaction and achievement. Learning how to do usual activities another way can have a similar effect. Learning may also give you greater sense of purpose. It can improve your ability to get the most out of life.
Learning can also involve building relationships with other people. You may want to try:
Many symptoms and practical problems of MND can be eased with the right support. This can reduce worry and help you manage challenging emotions when they arise. Do seek professional help for any concerns about symptoms or practical difficulties as soon as you can.
Talking therapies describe a range of psychotherapies and counselling techniques. These therapies use discussion such as Cognitive Behavioural Therapy and Acceptance and Commitment Therapy (ACT). An overview of these therapies can be found at Healthtalk Australia.
Your GP may be able to prescribe medications to help with difficult emotions, anxiety and/or depression. Many therapies can also help emotional and mental health. Ask your GP for guidance on how to access psychological services in your state or territory.
You GP may be able to do a mental health treatment plan for you. A mental health plan will help offset any out-of-pocket expenses that come with your visits to a mental health professional.
If you have an NDIS or Aged Care package you may be able to get help with these expenses as well. Private health insurance may also cover psychologist costs. You can also use the Australia-wide ‘Find a Psychologist’ TM directory or call 1800 333 497.
There are a range of tools that help with your mental health, including:
For more information, check out these additional resources about mental health and MND: