Motor neurone disease (MND)

What is MND?

Motor neurone disease (MND) is the name for a group of diseases. These diseases affect nerves known as motor nerves, or motor neurons. In MND, these neurons degenerate and die. This causes the muscles to become weaker and weaker. This eventually leads to paralysis. The MND disease group includes:

• Lou Gehrig’s disease, also known as amyotrophic lateral sclerosis (ALS)
• progressive muscular atrophy (PMA)
• progressive bulbar palsy (PBP)
• primary lateral sclerosis (PLS)
• Kennedy’s disease, also known as spinal and bulbar muscular atrophy (SBMA)

MND is an uncommon disease. The average age that people are diagnosed with MND is 58 years.

What are the symptoms of MND?

MND is a progressive disease that often starts slowly and gets worse over time. Symptoms usually start on one side of the body before spreading. Usually, the first things people notice are:

• weakness in their hands and grip
• slurred speech
• weakness in their legs, and a tendency to trip
• weakness of their shoulder, making lifting difficult
• cramps and muscles twitching

Later on, people with MND:

• become very weak and have little or no movement
• have trouble talking, breathing and swallowing

A few people with MND develop a type of dementia.

MND will not affect your ability to:

• see
• hear
• smell
• taste
• touch

What causes MND?

The exact cause of MND is not known. You can’t catch MND from somebody.

Generally, MND is believed to be caused because of a combination of environmental, lifestyle and genetic factors. Most cases of MND develop without an obvious cause.

Around 1 in 10 cases are ‘familial’, meaning the condition is inherited. This is due to a genetic mutation, or an error in the gene.

If you have an MND-related genetic mutation, your children have a 50/50 chance of inheriting that MND-related genetic mutation.

If someone in your family has MND, other people in the family can be tested for the genetic mutation. A test is arranged after you have met with a genetic counsellor. You will also receive support and counselling about the possible test results. The test is usually done by a blood sample.

People who inherit the genetic mutation have a high chance of developing MND. But, it is important to remember that not all people with the genetic mutation will develop MND.

When should I see a doctor?

If you notice any of the symptoms of early MND, you should see your doctor. If anyone in your family has MND, you can be tested by your doctor for the genetic mutation.

How is MND diagnosed?

MND can be hard to diagnose when the symptoms first appear. Your symptoms may be mild and non-specific and could be related to other conditions. It is important to see a doctor if your symptoms don’t get better.

There is not one test for diagnosing MND. You may need to have a range of tests done. Some of these will eliminate other conditions.

Your doctor may refer you to a neurologist (a brain and nerve doctor) who will examine you and do various tests. These may include:

• blood tests
• nerve conduction studies to measure how well your nerves and muscles are working
• muscle biopsies

How is MND treated?

A person with MND will usually require assistance from different specialists, such as:

• general practitioners
• neurologists
• occupational therapists
• physiotherapists
• speech pathologists
• psychologists
• home care nurses
• social workers

There is no cure for MND. However, with the help of specialists, a lot can be done to:

• ease your symptoms
• maintain your quality of life
• keep you as mobile as possible for as long as possible

You may require the help of devices and home modifications to assist with movement and function. These might include:

• a wheelchair
• communication technology
• tube feeding
• a ventilator

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?

Because there is no known cause of MND, there is nothing you can to do prevent it.

What are the complications of MND?

The complications of MND relate to late-stage disease. This can involve respiratory failure and paralysis.