Summary

  • MND is still incurable, but not untreatable, many symptoms can be managed
  • People with MND live better and longer under the care of a multidisciplinary team 
  • There is no evidence to suggest that motor neurone disease is contagious. 
  • The senses of eyesight, hearing, taste, smell and touch are not affected.
  • The Motor Neurone Disease Association of Victoria can provide advice about pensions and other benefits.
Motor neurone disease (MND) is also called amyotrophic lateral sclerosis (ALS) and Lou Gehrig's disease. MND is a rapidly progressing, neurological disease. MND often begins with weakness of the muscles in the hands, feet or voice. People with MND become increasingly disabled. Life expectancy after diagnosis is one to five years, with 10 per cent of people living 10 years or more.

MND may start in different areas of the body, and consequently, progresses in different patterns and at different rates. The needs of people with MND are complex and vary from person to person.

Symptoms of motor neurone disease (MND)

The physical effects of motor neurone disease can include:

  • muscle aches, cramps, twitching
  • clumsiness, stumbling
  • weakness or changes in hands, arms, legs and voice
  • slurred speech, swallowing or chewing difficulty
  • fatigue
  • muscle wasting, weight loss
  • emotional lability 
  • cognitive change
  • respiratory changes.

It was thought that MND only affected the nerve cells controlling the muscles that enable people to move, speak, breathe and swallow. However, it is now known that up to 50 per cent of people with MND can experience changes in cognition, language, behaviour and personality. Most people experience relatively mild changes.

Causes of MND

The causes of MND are unknown, but worldwide research includes studies on:

  • viruses, toxins, chemicals by which nerve cells are controlled and communicate
  • genetic factors
  • immune mediated damage
  • nerve growth factors 
  • growth, repair and ageing of motor neurons.

Familial (hereditary) MND accounts for about five to 10 percent of cases. Several gene mutations have been identified since 1993, and current research aims to identify further genes linked to MND.

Effects of MND

People who have MND may:

  • develop generalised paralysis (paralysis of both sides of the body)
  • lose speech and have difficulty swallowing
  • experience mild cognitive and behavioural change
  • become increasingly dependent on others for all aspects of day-to-day activity.

Impact of MND on carers

As MND progresses, there will be:

  • rapidly changing physical ability of the person with MND, and consequently, increasing assistance required of the carer
  • increasing levels of support required for the carer and the person living with MND
  • emotional demands of caring and being cared for.

Treatment for MND

MND is still incurable, but it is not untreatable, many symptoms can be managed. The drug riluzole – available on the Pharmaceutical Benefits Scheme – has been demonstrated in clinical trials to prolong survival by several months and may help people to remain in the milder phase of the disease for longer. 

Research has shown that people live better and longer under the care of a multidisciplinary team. Interventions such as assistance with nutritional intake and breathing improve quality of life.

Costly and unproven therapies are sometimes recommended by well-meaning people. Seek professional advice before trying unproven therapies.

Coping with the effects of MND

The Motor Neurone Disease Association of Victoria can help people to cope with the physical and emotional effects of the diagnosis by providing:

  • information about MND and support services via telephone, email, in person, printed and via the MND Victoria website
  • regional advisor service
  • home visits, and assessment of the needs of people living with MND 
  • help to connect to services that people need, such as speech pathology, occupational therapy, physiotherapy, attendant care and nursing
  • equipment loan service or referral to other agencies for equipment
  • volunteer programs.

Where to get help

  • Your doctor
  • Specialist neurologist
  • Motor Neurone Disease Association of Victoria Tel. (03) 9830 2122 or 1800 806 632
  • Department of Human Services, Disability Tel. 1800 783 783 or TTY  13 36 77 and ask for 1300 650 172
  • Disability, Sickness and Carers line, Centrelink Tel. 13 27 17 

Things to remember

  • MND is still incurable, but not untreatable, many symptoms can be managed
  • People with MND live better and longer under the care of a multidisciplinary team 
  • There is no evidence to suggest that motor neurone disease is contagious. 
  • The senses of eyesight, hearing, taste, smell and touch are not affected.
  • The Motor Neurone Disease Association of Victoria can provide advice about pensions and other benefits.
 
What is MND?, 2014, MND Australia [More information here.]

More information

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Content Partner

This page has been produced in consultation with and approved by: Motor Neurone Disease Association of Victoria

Last updated: June 2014

Content on this website is provided for education and information purposes only. Information about a therapy, service, product or treatment does not imply endorsement and is not intended to replace advice from your doctor or other registered health professional. Content has been prepared for Victorian residents and wider Australian audiences, and was accurate at the time of publication. Readers should note that, over time, currency and completeness of the information may change. All users are urged to always seek advice from a registered health care professional for diagnosis and answers to their medical questions.