Motor neurone disease

What is Motor Neurone Disease?

Nerve cells (neurones) control the muscles that enable us to move around, speak, breathe and swallow. Motor neurone disease (MND) is the name given to a group of diseases in which these neurones fail to work normally. Muscles then gradually weaken and waste. The initial symptoms, rate and pattern of progression, and survival time after diagnosis, vary significantly. While some people can live a long time with MND, the average life expectancy is 2 to 3 years from diagnosis.

MND is a non-contagious disease that affects approximately 1,400 people in Australia. MND most commonly appears in people aged between 40 – 60 years old but it can affect adults of any age. It is also known as amyotrophic lateral sclerosis (ALS) or Lou Gehrig's disease in America.

What are the symptoms of motor neurone disease?

Early symptoms are often mild. They may include stumbling due to weakness of the leg muscles, difficulty holding objects due to weakness of the hand muscles, and slurring of speech or swallowing difficulties due to weakness of the tongue and throat muscles. Often it's characterised by a decline in motor skills noticed in the hands or feet.

How is MND diagnosed?

Many other conditions can mimic motor neurone disease early in the disease. Diagnosis requires an expert neurological opinion and often a series of detailed investigations. Diagnosis may take some time to be established, although diagnosis may be confirmed rapidly by a neurologist.

The diagnosis can be assisted through a range of tests, including some which eliminate other conditions. Often an electromyograph (EMG) is used, in which a needle is inserted into various muscles to measure their electrical activity. This can assist with both diagnosis and prognosis.

What remains unaffected by MND?

Until recently it was thought that the memory and intellect remained unaffected by motor neurone disease. However, in the past few years, fronto-temporal cognitive change (a type of dementia) has been associated with motor neurone disease and it is now thought that one in five people with motor neurone disease may experience these changes. Researchers have also found that about one in three people with motor neurone disease may have very mild changes in cognitive skills and processes.

The bowels and bladder are not affected by the disease, although nutrition should be carefully monitored. Sight, hearing,taste, smell and touch are usually not affected by motor neurone disease.

Is there a cure for MND?

Although there is no cure for motor neurone disease yet, research has shown some interventions can help people living with motor neurone disease to live better for longer. Sometimes, costly therapies for motor neurone disease are recommended by well-meaning people or promoted on the television or internet.

People with motor neurone disease are encouraged to discuss any therapies they hear about with their neurologist, general practitioner or care team. This is because these therapies can be harmful or may already have been shown to have no effect on the progression of motor neurone disease.

Living better for longer with MND

There is one medication approved for treatment of motor neurone disease in Australia - riluzole (Rilutek). Riluzole prolongs median survival by two to three months. Riluzole also keeps people with motor neurone disease in the milder stages of the disease for longer, if they start taking it early in the disease progression.

Other interventions such as getting multidisciplinary care, good nutrition and using non-invasive ventilation have all been shown to help people living with motor neurone disease to live better for longer.

Also, the way that people manage their earlier symptoms of motor neurone disease can affect how later symptoms can be managed. Early discussion about symptom management helps people with motor neurone disease to plan ahead.

What is multidisciplinary care?

A multidisciplinary care team for people with motor neurone disease usually includes a doctor, allied health professionals (such as a dietitian, occupational therapist, physiotherapist, social worker and speech pathologist) and local palliative and community care workers.

Other team members who have particular expertise are involved as needed, such as a respiratory specialist. In many areas of Australia, the regional/care advisor from the MND Association liaises with the team, providing information and education.

MND resources

Information courtesy of MND Australia. The MND Association assists people living with motor neurone disease to get information, support and referral to other services when needs change. Join the MND Australia facebook page or follow them on twitter @mndaustralia

You can also visit MND and Me a not-for-profit organisation that was formed to raise awareness of Motor Neurone Disease (MND) and its impact in the community.