Motor neurone disease (MND)

Motor neurone disease (MND) is the name for a group of diseases that affect nerves known as motor neurons. These nerves carry messages from your brain to your muscles via your spinal cord. These messages allow you to move, swallow, talk, breathe and more.

MND is a condition that gradually weakens these muscles. It can also affect thinking and behaviour and can be emotionally and physically hard on those with MND and their families. There is no cure for MND.

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 known by the body parts they affect. Read more about the types of MND (Opens in new tab).

MND is a rare disease. MND is more common in males and is usually diagnosed in people over 50 years of age.

MND is a life-limiting condition. Most people live around 2 to 3 years after diagnosis, but a small number may live much longer — some over 10 years. 

MND causes weakness in your arm and leg muscles that gets worse with time.

Symptoms of MND caused by muscle weakness include:

• falls and difficulty with movement
• slurred speech
• swallowing difficulties
• difficulty breathing

You may eventually become very weak and unable to move or breathe on your own.

Other symptoms include:

• fatigue
• muscle pain, cramps and discomfort
• insomnia 
• drooling and thick saliva
• changes in your thinking, behaviour and mood

A few people with MND may also develop a type of dementia.

The exact cause of MND is usually not known. It is thought to develop because of a combination of environmental, lifestyle and genetic factors. 

You cannot catch MND from someone else.

Around 1 in 10 cases are 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 the same 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 a genetic mutation. Your doctor can refer you for genetic counselling (Opens in new tab). 

If you notice any of the symptoms of early MND, you should see your doctor. They will refer you to a neurologist. If anyone in your family has MND, you can ask your doctor about testing for the genetic mutation.

Your doctor can diagnose you with MND by examining you and observing your symptoms. There is no specific test that can diagnose MND.

To confirm your diagnosis and to rule out other conditions, your doctor may arrange tests such as:

• muscle and nerve tests — electromyography and nerve conduction studies
• magnetic resonance imaging (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.

If you have MND, your treatment will focus on managing your symptoms and any complications. There is no cure for MND.

Medicines

Medicines are approved for specific types of MND. Your doctor can advise if a medicine is suitable for your situation.

For example, riluzole is approved for ALS. Riluzole can slow down the progression of your disease and improve your quality of life. It can help people live several months longer and delay breathing problems. 

Another medicine, called edaravone, is also now available and can be prescribed for some adults with ALS. It can help slow the progression of MND. Your doctor may consider prescribing this if you are independent in your daily activities, have normal breathing and are able to start treatment within 2 years of symptoms beginning.

A new gene therapy called tofersen may help some people who have a genetic mutation causing their MND. It is not currently available on the PBS. Your doctor can advise if it is suitable and how it may be accessed.

Your neurologist can also provide more information about specific treatments that may suit your type of MND and your situation.

Multidisciplinary care

You will have a multidisciplinary team looking after you, including:

• specialist doctors — general practitioners, neurologists, rehabilitation physicians, palliative care doctors and gastroenterologists
• home care nurses
• allied health professionals — occupational therapists. physiotherapists, speech pathologists, social workers, dietitians, palliative care nurses and psychologists

Your healthcare team will work together to help relieve your symptoms, maintain your quality of life and provide palliative care as needed.

Living with MND can be challenging for both the person with the condition and their family. As the disease progresses, people need increasing support with daily activities.

Your healthcare team may recommend you make some changes to your home and use devices such as:

• mobility aids — including wheelchairs
• communication devices
• feeding tube
• a mask for breathing support 

There are support services and community organisations that can help you manage symptoms and improve quality of life.

See MND Australia's guide about end of life care for people living with MND (Opens in new tab).

The complications of MND occur with advanced disease. This can involve breathing problems, paralysis and death.

There is currently no way to prevent MND. Recent discovery of genes associated with MND has raised the possibility of future gene therapy.

Visit MND Australia (Opens in new tab) or call 1800 777 175 to access resources and support for people with MND and their family and friends.

Find the MND Association for your state or territory (Opens in new tab).

Read more on ALS (Lou Gehrig’s disease) at The Brain Foundation (Opens in new tab).

For advice and to get connected to local mental health services, call Medicare Mental Health on 1800 595 212. Check the operating times.

Information for Aboriginal and/or Torres Strait Islander peoples

MND Australia has a guide explaining MND (Opens in new tab) for Aboriginal and Torres Strait Islander peoples.