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 around, speak, swallow and breathe fail to work normally. With no nerves to activate them the muscles gradually weaken and waste. The patterns of weakness and rate of progression vary from person to person. While some people can live a long time with MND, the average life expectancy is 2 to 3 years from diagnosis.
MND was first described by Jean-Martin Charcot in 1869 and there is still no known cause or cure for this devastating disease and treatment options are very limited. Effective management of the disease by a variety of specialist health professionals is vital to maintaining quality of life and assisting with symptom control.
Recent data around the incidence of mortality demonstrate an increase in the number of deaths from MND in Australia during the last decade (Australian Institute of Health and Welfare). The ageing population and interventions that improve life expectancy in MND are likely to result in a steady increase in the number of people living with MND in Australia.
In 2000 there were 450 deaths from MND compared with 648 deaths from MND in Australia in 2010. The cause of this increase is mostly unknown. Over the last few years the number of people in Australia for whom the underlying cause of death is MND has remained fairly stable. In 2007 - 595 persons, 2008 - 611 persons and 2009 - 596 persons, 2010 - 648 persons.
|Source: Australian Bureau of Statistics, Causes of Death [data available on request].|
For every person diagnosed with MND it is estimated that a further 14 members of their family and their friends will live with the effect of MND forever. Due to the rapid progression of MND and the spiralling series of losses MND has a significant impact on the physical and emotional well being of the carer.
MND carers are a specific client group with specific needs related to training and support from diagnosis and through bereavement. Health professionals and community care providers, who may have only limited knowledge of MND, also have special needs related to information, education and support.
Until a cure or an effective treatment for MND is discovered care and research must go hand in hand.
Care based on the needs of people living with MND and their families no matter where they live in Australia or their age.
Research, which is adequately funded and supported, to give people living with MND today hope that a cure will one day be found.