It can be very challenging to learn that you or someone close to you has motor neurone disease (MND) and it may take some time to adjust and make sense of the diagnosis. But with the right help and information, you can gain an understanding about care options and support available to help you live as well as possible with MND.
Being diagnosed with MND often leads to many confusing and confronting emotions. Working through the emotions that come with a diagnosis may not be easy – but there are ways to help reduce any worries you may have, and manage what’s going on.
We’ve developed this information sheet and the rest of our website to provide access to quality MND information to help you learn more about how the condition may affect you and to help you plan ahead. You will be able find information on who to talk with, what to read and other forms of support and services available.
One of the best things you can do is talk with someone who knows about MND and ways to deal with it following diagnosis.
Talking with someone helps because it can be hard to know where to start. You can talk with someone who knows about MND by calling the MND Info Line on 1800 777 175 (Monday to Friday 9am to 4.30pm). MND Info Line staff are there to help you in any way they can, including:
When you call the 1800 number you will be automatically directed to the MND association in your state or territory. MND associations are there to help you and those close to you with advice, finding services and support, accessing equipment and linking with education sessions and support groups.
MND Info Line staff will provide you with information, guidance and links to services based on your location, and what you want and need. There is no charge for calling the MND Info Line. All calls are confidential.
GPs, health professionals and service providers can also call the MND Info Line for information, advice and support.
Reading basic facts about MND is a good place to begin. When you are ready, you can browse this website for more information about living day to day with MND.
It is important to remember when reading about MND that although symptoms will progress, the speed at which this happens can be different for each person.
Don’t forget more information about living with MND and support is only a phone call away via the MND Info Line on 1800 777 175 (Monday to Friday 9am to 4.30pm).
Some MND associations host information sessions for people recently diagnosed with MND, and their family and friends. Information sessions are held online and/or in person. Sessions may cover topics like MND symptom management and how to access support. They are also a chance to learn from, and link with, others just diagnosed with MND.
MND associations run support groups and host a range of information and education events throughout the year - to find out more
call the MND Info Line on 1800 777 175.
MND associations can also help to put you in touch with people and organisations who will help you manage MND and live as independently as possible, such as: