Motor neurone disease (MND)
Key facts
- Motor neurone disease (MND) is the name for a group of diseases that affect your motor nerves — a type of nerve that allows you to move, swallow, talk and breathe.
- MND symptoms usually begin as mild weakness in your lower body; they gradually worsen and spread to your upper body, causing paralysis and breathing difficulties.
- In rare cases a genetic mutation can cause MND, but usually there is no known cause.
- Treatment for MND focuses on managing your symptoms and improving your quality of life, as there is no cure.
What is MND?
Motor neurone disease (MND) is the name for a group of diseases that affect nerves known as motor nerves, or motor neurons. Your motor nerves carry messages from your brain to your muscles via your spinal cord. These messages allow you to move, swallow, talk and breathe.
In MND, these motor neurons become damaged and die. Messages can no longer travel between your brain and muscles. This causes your muscles to become weaker and weaker. This eventually causes paralysis.
The MND disease group includes the following diseases:
- amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease
- progressive muscular atrophy (PMA)
- progressive bulbar palsy (PBP)
- primary lateral sclerosis (PLS)
- Kennedy's disease, also known as spinal and bulbar muscular atrophy (SBMA)
These different types of MND are characterised by which body parts they affect. Read more about the types of MND.
MND is an uncommon disease. MND is more common in people over 50 years old. However, you can get MND at a younger age too.
What are the symptoms of MND?
Your first symptoms of MND that you notice can be mild, such as:
- stumbling because of weakness in your leg muscles
- difficulty holding and gripping objects because of weakness in your hand muscles
- slurred speech and swallowing difficulties because of weakness of your tongue and throat muscles
- cramps and muscle twitching
These symptoms usually start on one side of your body before spreading around your body and getting worse.
As your disease progresses you may develop:
- difficulty breathing because your breathing muscles are getting weaker
- fatigue caused by muscle tiredness, reduced lung capacity, weight loss, reduced food intake and changes to your metabolism
- insomnia caused by discomfort and pain
- mild changes in your cognitive skills and changes to your typical behaviour and mood
- some pain and discomfort
You may eventually become very weak and unable to move or breathe on your own.
A few people with MND may also develop a type of dementia.
MND will not affect your senses and your ability to:
- see
- hear
- smell
- taste
- touch
The rate that symptoms progress is different from person to person.
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What causes MND?
Most of the time the exact cause of MND is not known.
You cannot catch MND from somebody.
There are theories that MND can develop because of a combination of environmental, lifestyle and genetic factors. More research is needed to investigate these theories.
Around 1 in 10 cases are 'familial', meaning the condition is inherited. This is because of a genetic mutation, which is an error in a gene. Inherited MND is also known as ‘familial MND’.
If you have an MND-related genetic mutation, your children have a 1 in 2 chance of inheriting that MND-related genetic mutation.
It is important to remember that not all people with the genetic mutation will develop MND.
If someone in your family has MND, you may want to do genetic testing to check if you have the genetic mutation. You will have to first meet with a genetic counsellor. You will receive support and counselling about possible test results. Testing usually involves a blood test.
When should I see a doctor?
If you notice any of the symptoms of early MND, you should see your doctor. You will be given a referral for a neurologist. If anyone in your family has MND, you can be tested by your doctor for the genetic mutation.
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How is MND diagnosed?
Your doctor can diagnose you with MND by examining you and observing your symptoms. There is no specific test that diagnoses MND.
To confirm your diagnosis and to eliminate other conditions, your doctor may do some of these tests:
- electromyography (EMG) and nerve conduction studies
- MRI of your brain and spinal cord
- blood tests
- muscle biopsy
- lumbar puncture
When you first start having symptoms, MND can be hard to diagnose. This is because your symptoms may be mild and non-specific. They could be related to other conditions. It is important to see a doctor if your symptoms do not get better.
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How is MND treated?
If you have MND, your treatment will focus on managing your symptoms and any complications you have. There is no cure for MND.
A medicine called riluzole has been approved for use in Australia to treat ALS. Riluzole is available on the Pharmaceutical Benefits Scheme (PBS) if you are eligible. Riluzole can slow down the progression of your disease and improve your quality of life. It can extend your survival by 6 – 19 months.
A medicine called edaravone can help slow the progression of MND, however it is not yet approved in Australia for the treatment of MND. There are other new treatments being developed to help people with MND. You can ask your neurologist for more information.
You will have a multidisciplinary team looking after you, including:
- specialist doctors — general practitioners, neurologists and gastroenterologists
- home care nurses
- allied health professionals — occupational therapists. physiotherapists, speech pathologists, social workers, dietitians and psychologists
Your healthcare team will work together to help relieve your symptoms, maintain your quality of life and provide palliative care as needed.
You may be recommended to make some changes to your home and use some devices, such as:
- mobility aids — including wheelchairs
- communication devices
- feeding tube
- non-invasive ventilation
Most people with MND die within 2 to 3 years of developing the condition. However, some people can live a long time.
See MND Australia's guide about end of life care for people living with MND.
Can MND be prevented?
There is currently nothing you can do to prevent MND. However, recent discovery of genes associated with MND has raised the possibility of future gene therapy.
What are the complications of MND?
The complications of MND relate to late-stage disease. This can involve respiratory failure and paralysis.
Resources and support
- The MND Association in your state or territory provides individualised support with an MND advisor who can help you navigate any questions or concerns. To find the MND Association in your state, visit MND Australia. The website also has a range of resources for people with MND and their family and friends.
- There are MND clinics or services available across Australia offering multidisciplinary care for people living with MND.
- If you or someone you are close with are struggling with a new diagnosis or progression of symptoms, call Head to Health on 1800 595 212 for emotional support.
Looking for information for Aboriginal and/or Torres Strait Islander people?
- MND Australia has a guide explaining MND for Aboriginal and Torres Strait Islander people.
- Gwandalan offers palliative care for Aboriginal and Torres Strait Islander people.
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Last reviewed: June 2024
