Motor neurone disease (MND) is the name given to a group of diseases in which the nerve cells (neurones) controlling the muscles that enable us to move, speak, breathe and swallow undergo degeneration and die. Motor function is controlled by upper motor neurones in the brain that descend to the spinal cord; these neurones activate anterior horn cells (lower motor neurones). The lower motor neurones exit the spinal cord and directly activate muscles. With no nerves to activate them, muscles will gradually weaken and waste.

The patterns of weakness vary from person to person.

Early symptoms are mild, and include problems with walking, holding objects due to weakness of the hand muscles, slurring of speech or swallowing difficulties due to weakness of the tongue and throat muscles.

The diagnosis of MND is often clinically difficult, and sometimes it is necessary to review patients for some time before the diagnosis becomes relatively certain. 

The causes of MND are not yet known, but ongoing research throughout the world is looking for causes.

Most cases of MND occur spontaneously. They are said to be sporadic - meaning occurring in scattered or isolated instances without clearly identifiable causes.

There is no evidence that MND is transmissible from person to person.

MND takes several forms. In some cases the symptoms are widespread from the onset, but usually MND begins in a localised fashion, affecting a single limb or aspect of motor function, becoming more generalised as the disease progresses. 

It is an uncommon, but by no means rare, disorder. It occurs at similar rates in most countries of the world. It is estimated that there are presently about 1,200 people diagnosed in Australia and approximately 400 new diagnoses each year.

In the majority of cases the intellect and memory are not affected, nor are the senses of sight, hearing, taste, smell and sensation.

The neurons carrying sensory messages of pain, touch, heat, cold and pressure from the skin and deeper tissues back to the spinal cord and brain are unaffected.  However, while most people experience little or no pain at any stage of the illness, others may experience some pain or discomfort.

Alternatives to medication are available. For example, relaxation therapy and acupuncture.

There is no cure for Motor Neurone Disease (MND), but a medication has been approved in Australia for the treatment of amyotrophic lateral sclerosis (ALS) - the most common form of MND.  This drug is Rilutek (riluzole), which is available at a subsidised price on the Pharmaceutical Benefits Scheme.  

Associated with support from family and friends, other people who may help include GPs, Neurologists, Occupational Therapists, Physiotherapists, Speech Pathologists, Psychologists, Home Care Nurses and Social Workers. This list is not exhaustive.

Most people with MND do develop problems related to mobility, to a greater or lesser extent.

It is unlikely that people living with MND will stay in bed for long periods, but they may need help moving around.Some people have a tendency to fall, sometimes without warning.

Fatigue is common with MND.   By recognising the factors that worsen symptoms and by learning how to conserve energy, people can greatly improve their quality of life.

You may experience difficulty sleeping because of the emotional distress of receiving a diagnosis of MND, or the stress of living with MND.   In these circumstances you are encouraged to speak with your treating Neurologist.

Many people with MND have decreased lung capacity because of muscle weakness.  Any activity that requires increased respiratory effort will therefore be harder for a person with MND.  Some people find their cough is less forceful than before, making it more difficult to clear their throat. 

In some cases people experience swallowing difficulties which require adaptation of the process of eating and drinking. In conjunction with the advice of a speech pathologist the following strategies have been found to be helpful:

The aim of the MND Victoria Equipment Library is to deliver a responsive service which provides suitable and timely aids and equipment to people living with MND. All the items are available free of charge to members, including no cost delivery and retrieval of goods.

Centrelink provides information about pensions and other Government benefits.  Benefits include:

As most people with MND remain at home, the needs of the whole family, and particularly of the primary care-giver, must be taken into account.

Click here to download the More Facts Booklet.

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