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, breathe and swallow, fail to work normally. With no nerves to activate them, muscles gradually weaken and waste. The patterns of weakness vary from person to person. More information can be found in the ABC Health Fact File on MND.
What are the symptoms of Motor Neurone Disease?
Early symptoms are mild, and may include stumbling due to weakness of the leg muscle, difficulty 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 effects of Motor Neurone Disease ‑ initial symptoms, rate and pattern of progression, and survival time after diagnosis – vary enormously.
How is Motor Neurone Disease diagnosed?
Many other conditions can mimic motor neurone disease early in the disease and requires an expert neurological opinion and often a series of detailed investigations. In some cases it may take some time for the diagnosis to be established, while in other cases 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 Electromyography (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?
In the majority of cases the intellect and memory are not affected, nor are senses of sight, hearing, taste, smell and touch. The bowls and bladder are not affected by the disease, although diet and exercise should be carefully monitored.
Is there a cure or treatment for Motor Neurone Disease?
At present there is no cure, but co-ordinated research is being carried out across the world and encouraging progress is being made. Rilutek has been demonstrated in clinical trials to show a modest extension of life expectancy of people diagnosed with Motor Neurone Disease. Rilutek was registered for prescription in Australia in May 2002. It is only available on a private script and is expensive. It is now available on the PBS subject to various criteria being met. For further information about Rilutek contact you neurologist or diagnosing specialist. Costly and unproven therapies are sometimes recommended by well meaning people. Patients should seek professional advice before embarking on unproven therapies. You may hear through TV and other media of new advances. You should always check with your neurologist, GP or care team before trying these.
What can be done?
Support people can include the family, friends, GPs, Neurologists, Occupational Therapists, Physiotherapists, Speech Pathologists, Psychologists, Home Care Nurses and Social Workers. More detailed information about the support available in Tasmania can be obtained from the Motor Neurone Disease Association.
Some Associations employ professionals to provide advice about resources, equipment and psychological support. These can all maximise the quality of life for people with Motor Neurone Disease, and for their families and other carers. These professionals work with those who have personal experience of living with Motor Neurone Disease and their carers, and former carers, to provide support and advice based on a wide understanding of the issues associated with each stage of the disease.