Receiving a diagnosis of Motor Neurone Disease (MND), supporting someone living with MND, or caring for a loved one can raise many questions. Here are five of the most frequently asked questions from the MND NSW Info Line, along with practical evidence-based answers, and helpful next steps.
Question 1: I am living with MND, how can exercise help?
For some people living with MND, exercise is an important part of their health care and overall well-being. However, exercise can look a little different after diagnosis. It needs to be individualised and supervised by a health care professional who knows about MND. Exercise will not strengthen muscles that have been weakened by MND, but it may help to slow down the decline.
Research suggests that moderate exercise under the supervision may help to:
- Keep you doing daily activities for longer
- Have a positive impact on quality of life
- Make healthy muscles stronger
- Maintain mobility
- Reduce stiffness
It is important to talk to your healthcare team to find the right solutions for you.
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Question 2: What is the prevalence of MND in Australia?
MND is considered an uncommon neurological condition, however it affects thousands of Australians each year.
In 2025, MND Australia reported there were approximately 2,752 Australians living with MND. Which means it affects approximately 1 in every 10,030 people. There are slightly more men than women living with MND. The median age range for people living with MND is 50-to-60 years, but it can affect adults of any age.
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Question 3: I have started to notice symptoms that are consistent with MND, what do I do next?
It is important to remember that many conditions can cause symptoms similar to MND so early assessment is key.
Next steps may include:
- Talking to your GP to discuss your symptoms and provide appropriate referrals
- Referral to a neurologist who can assess your neurological symptoms
- Undergoing further testing as required. For example, nerve conduction tests, imaging, and blood tests.
If you are waiting for appointments or results, this period can feel particularly stressful. Seeking emotional support from a health professional can be helpful.
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Question 4: What is emotional lability and how can I manage this?
Emotional lability (also known as the pseudo-bulbar affect) is a symptom of MND that some people will experience over the course of the disease. It involves emotional responses that may not match how the person is actually feeling. For example, sudden or uncontrollable laughter at something you would not usually find funny.
Emotional lability can feel distressing, embarrassing, or lead to withdrawal from usual social activities.
Top tips to manage emotional lability:
- Take slow breaths through your nose
- Let others know that the emotional response is symptom of MND and not a reflection of how you feel
- Distract yourself by focusing on something else
- Talk to your healthcare team about available supports such as psychological support or medications.
Learn more:
- MND Factsheet: Cognitive & Behaviour Change | MND Australia
- MND Aware Living with MND - Aspects of care - Page 44-45
Question 5: How can I plan for emergency care?
As MND progress, people living with MND may need urgent or emergency care. Creating an emergency plan can provide reassurance, reduce stress, and ensure that you get the care you need quickly.
Top tips for planning for an emergency:
- Pack a bag with essentials and medicines and keep it in a place that is easy to access
- Keep your essential personal and medical information, including copies of all documents such as Advance Care Plan, in a safe, easy to access place
- Keep a list of important things you might need in an emergency in a visible place, such as on the fridge door
- Find out your options for out-of-hours care or urgent help in an emergency by speaking with your healthcare team
- Record your specific MND care needs so it can be given to paramedics or emergency department staff.
Learn more:
Do you have a question about MND?
Whether you’re newly diagnosed, caring for a loved one, or navigating the MND space as a health professional, we’re here to help.
Call us on 1800 777 175
Or submit and online inquiry at Contact MND NSW
“We can't do this alone. But together, we're unstoppable.”
- MND Community Member