Being diagnosed with MND can be devastating and managing emotions can become hard.
Living with a life limiting illness and having the daily challenges that come from increasing physical disability can cause stress and other concerns.
Maintaining connections with family and others might get difficult, too. Your emotions and moods, general state of mind and relationships with others are all important.
There are however, positive ways to deal with emotions and your overall wellbeing.
Doing things each day to look after you, can make a positive difference to your mental health and living with motor neurone disease (MND). Being proactive in exploring MND management options and looking after your mental health can have a large impact on your physical health and how you feel each day.
Getting plenty of rest when you can, building on the things you enjoy, 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.
By doing your best to look after yourself you’re likely to feel a greater sense of control, and lift your moods. You’re also more likely to enjoy time with others, your interests and other things important to you.
MND may bring with it a range of strong emotions for people with MND and the people that they love. Sharing your diagnosis with people that you love and care for can be very difficult. You are not only dealing with your own diagnosis, but also the reactions of those who you talk with about it. It is reasonable, in fact normal, to experience a range of emotions as you try to cope with MND.
Feelings may affect people at different times in their illness and in different ways, but can include:
Difficult emotions can be very uncomfortable and impact your ability to function day-to-day. Finding the courage to talk to someone about how you are feeling is an important step. Talking can help you find the support that you need to feel more comfortable as you work through what is happening to you.
Some people with MND experience changes to their thinking and behaviour known as cognitive change. When cognitive changes occur in MND, it is because there have been changes in specific areas of the brain called the frontal and temporal lobes. If cognitive change is a factor you may need some extra support for you and your family.
Not everybody wants to talk about what they are going through. While people living with MND have some things in common, they also have very different experiences of the disease.
There is no ‘right’ way of dealing with MND. Some things you feel and do with MND, however, may be signs that you might benefit from some extra support. These things can include:
These responses are understandable, and can be a common reaction to the situation you are experiencing, but 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 to do this but seeking support is a great first step to feeling better.
If you are finding it hard to talk to people close to you, it may help for you to talk to someone more distant about what’s going on, such as:
People with MND have individual support needs rather than ‘a one size fits all’. Your local MND Association Advisor or Support Coordinator will be able to guide you towards the support you need.
When making changes to how you look after your mental health, it can help to change one thing at a time.
You might want to try:
Living with MND can be a challenge. But you’re likely to be already finding ways to adapt and live with the disease, and there are things you can do to manage new or extra challenges if they arise, by:
Doing things that you enjoy and find relaxing can lift your mood, like listening to music. You may find learning more about the activities below helpful.
Music therapy is a research-based practice in which music is used to actively support people to improve functioning and well-being.
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 talking about the benefits of mindfulness and to learn ways to start practicing mindfulness.
Relaxation can be helpful if you are feeling stressed or down. It is effective and free. There are many forms of relaxation and a guide to get you started is available on Beyond Blue's Relaxation Exercises page
Sleeping well is important for managing emotions and wellbeing. Having a good night of sleep can help with feeling restored, improving concentration and memory and balancing moods.
However, sleeping with MND can become difficult because of immobility, excessive saliva, breathing issues and other problems associated with the disease.
There are useful ways to better manage sleep with MND, so it is important to talk to your health care team so they can support you and work to improve the particular issues that are impacting your sleep.
Your family, friends and others in your social circle matter when it comes to looking after your mental health. Positive relationships can help with a sense of belonging, and understanding.
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 thoughts 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.
You can help to maintain your relationships by doing things like:
With MND, it becomes harder to physically move, but that doesn’t mean you can’t find ways of being active that work for you. Being physically active, as much as you can, is important because evidence suggests that it can support better mental health.
Using appropriate mobility aids, that may include using walking frames or ankle foot orthotics (a brace that holds your foot and ankle in the right position) can help maintain your mobility for as long as possible. If you are still able to walk but find you get fatigued, then using a wheelchair when out and about will help you maintain your usual activities such as shopping and meeting friends and family for coffee or meals out.
Don’t forget to speak with your OT or physio if you need some assistance with being active.
Being active with MND can include:
You can continue to learn new skills and abilities with MND, and evidence shows that this can improve and maintain our mental health.
By learning new things, or learning how to do usual activities another way, can help you gain confidence, and feelings of satisfaction and achievement. Learning may also provide a greater sense of purpose and give you an improved 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 that use discussion, such as Cognitive Behavioural Therapy and Acceptance and Commitment Therapy (ACT).
Your GP may be able to prescribe medications to help with difficult emotions. However, many therapies can help emotional and mental health. Ask your GP for guidance on accessing psychological services in your state or territory.
You GP may be able to develop a mental health treatment plan for you that will help offset any out of pocket expenses associated with your visits to a mental health professional.
If you have a government funded care package or private health insurance it is worth checking to see if it maybe be able to help with these expenses as well. You can also use the Australia-wide ‘Find a Psychologist’ TM directory or call 1800 333 497.
Some examples of innovative approaches to managing your mental health include: