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Motor neurone disease explained
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Motor neurone disease often begins with weakness of the muscles of the hands or feet. It eventually leads to generalised paralysis. People with motor neurone disease need help with daily activities and have a life expectancy of three to five years after their diagnosis.
A variety of physical effects
The physical effects of motor neurone disease (MND) can include:
- Weakness or muscle wasting – this is often first noticed in the hands or feet
- Difficulty swallowing or slurred speech
- Muscle twitching
- Cramps
- Emotional instability, depression
- Fatigue, pain.
Causes are unknown
The causes of MND are unknown but worldwide research includes studies on:
- Viruses, toxins, genetic factors and immune factors
- Nerve growth factors and chemicals which control nerve cells and allow them to communicate with each other
- Growth, repair and ageing of motor neurones.
Effects of motor neurone disease
People who have MND will have:
- A potential to develop generalised paralysis
- Loss of speech and difficulty swallowing
- A dependence on others for all aspects of day-to-day activity
- An average life expectancy of 3 to 5 years after diagnosis.
Needs arising from motor neurone disease
As MND progresses there will be:
- Increasing pressure on carers as the physical needs of the person with MND change
- Escalating need for assistance for the person with MND and their support network
- Emotional pressures associated with a worsening disability – this includes the stress of being cared for.
There is no cure for motor neurone disease
The drug Rilutek (riluzole) has been demonstrated in clinical trials to show a modest extension of life expectancy, and works best in conjunction with support from a multi-disciplinary team of health professionals. Rilutek is available on the Pharmaceutical Benefits Scheme.
Costly and unproven therapies are sometimes recommended by well-meaning people. People should seek professional advice before embarking on unproven therapies.
Coping with the physical and emotional effects
The Motor Neurone Disease Association can help people to cope with the physical and emotional effects of the diagnosis by providing:
- Information about MND – this includes information about experiences that other people have found helpful
- Home visits – including visits by volunteers
- Referral to service providers like attendant carers, nurses, speech therapists, occupational therapists and physiotherapists
- Equipment loan service or referral to other agencies for equipment
- Regular telephone support.
Where to get help
- Your local doctor
- A specialist neurologist
- Motor Neurone Disease Association Tel. (03) 9830 2122 or 1800 806 632
- A physiotherapist, occupational therapist or speech pathologist at your local hospital or community health centre
- The Community Services Department of your local council
- Department of Human Services Tel. (03) 9096 0000
- Centrelink Tel. 132 717 (Disability, Sickness and Carers)
Things to remember
- There is no evidence to suggest that motor neurone disease is contagious.
- In most cases the person with MND can make their own decisions. Only physical independence is lost.
- In the majority of cases the intellect and memory are not affected, nor are the senses of eyesight, hearing, taste, smell and touch.
- The Motor Neurone Disease Association can provide advice about pensions and other benefits.
You might also be interested in:
Friedreich's ataxia.
Independent living - aids and equipment.
Kennedy's disease.
Motor neurone disease - help with daily activities.
Motor neurone disease - independence at home.
Motor neurone disease - personal care.
Motor neurone disease - recreation and leisure.
Want to know more?
Go to More information for support groups, related links and references.
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This page has been produced in consultation with, and approved by:
Motor Neurone Disease Association of Victoria
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Copyight © 1999/2009 State of Victoria. Reproduced from the Better Health Channel (www.betterhealth.vic.gov.au) at no cost with permission of the Victorian Minister for Health. Unauthorised reproduction and other uses comprised in the copyright are prohibited without permission.
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This Better Health Channel fact sheet has passed through a rigorous approval process. For the latest updates and more information visit www.betterhealth.vic.gov.au.
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Last updated: August 2009
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Motor neurone disease explained - Better Health Channel
Motor neurone disease often begins with weakness of the muscles of the hands or feet. Motor neurones are nerve cells that control the muscles of the trunk, limbs, speech, swallowing and breathing. Damage to these nerves causes muscle weakness and wasting. This leads to gradual paralysis, loss of speech, difficulty swallowing and eventual death from respiratory (breathing) failure...
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Motor neurone disease explained - Better Health ChannelMotor neurone disease often begins with weakness of the muscles of the hands or feet. Motor neurones are nerve cells that control the muscles of the trunk, limbs, speech, swallowing and breathing. Damage to these nerves causes muscle weakness and wasting. This leads to gradual paralysis, loss of speech, difficulty swallowing and eventual death from respiratory (breathing) failure...
© State of Victoria. All rights reserved
The information published here was accurate at the time of publication and is not intended to take the place of medical advice. Please seek advice from a qualified health care professional.
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