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- 8 June 2006
Motor Neurone Disease
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The Hon. KAYEE GRIFFIN [4.39 p.m.]: Motor neurone disease is a painful and debilitating disease that causes the nerve cells that control our ability to speak, walk, breathe, move and swallow to degenerate and eventually die. Motor neurone disease is the name given to a group of diseases that attack these nerve cells. Initially, a person may become aware of very mild symptoms which can include problems with walking, swallowing, slurred speech and holding things due to a weakness with the hand muscles. In some cases people may experience muscle twitching or cramps.
Unfortunately, because of the nature of the disease, it is often difficult to diagnose, and in most cases a patient has to undergo a number of tests before he or she is diagnosed with motor neurone disease. Researchers are not entirely aware of what causes motor neurone disease. However, there are many theories that include exposure to environmental toxins and chemicals, immune system damage, and premature ageing of motor neurones. Some cases of motor neurone disease are believed to be hereditary, but researchers around the world are still working hard to fully understand this disease and why it occurs. Back in 1992 the Sydney Morning Herald ran a story on the disease that stated motor neurone disease was:
... a rapidly progressing and fatal illness that can strike at any time, but occurs mainly between the ages of 40 and 70. The cause is unknown, although in 10 per cent of cases it is genetic. It affects the nerve cells, or motor neurones, in the brain and spinal cord, causing their gradual death and resulting in immobility and eventual respiratory failure. The intellect and senses remain unaffected.
The Motor Neurone Disease Association of New South Wales was established in 1981 by a group of volunteers. These volunteers were responsible for the day-to-day running of the association until 1983, when an executive officer was employed. Today the organisation has a staff of 14 that comprises volunteers and part-time workers. These people are the backbone of the association. The volunteers work tirelessly to promote the organisation throughout New South Wales. They are responsible for organising fundraising events and establishing support groups, and they also assist people who have been diagnosed with the disease by providing emotional and physical support.
The motor neurone disease support groups are aimed at providing people with an outlet that enables them to meet with others to discuss their changing needs. The groups also ensure that people receive the right level of care and, in a lot of cases, give them the opportunity to reach out for support in dealing with and understanding their disease. Volunteers are often people who have an intimate knowledge of motor neurone disease. They are able to listen to and show that they care about the wellbeing of the person affected by the disease. In some cases they also assist with basic daily tasks that a person can no longer do, such as brushing hair, preparing meals, reading or writing, and they can accompany the person to social outings or to appointments.
Their important work ensures that proper assistance is given to people affected by motor neurone disease so that they can manage and understand their changing needs. During Motor Neurone Disease Week this year volunteers were out and about in the mornings to sell the association's symbolic cornflowers and wristbands. All money raised through these sales helps to continue to provide the association's valuable service to many people touched by this debilitating disease. The Motor Neurone Disease Research Institute of Australia also plays a pivotal role in attempting to combat this deadly disease.
The aim of the institute is to promote medical and scientific research into motor neurone disease, to determine the relative merits of research proposals for the study of motor neurone disease for the receipt of research grants, to administer research grants for the study of motor neurone disease, to facilitate the exchange of information about motor neurone disease, to affiliate with other bodies, either national or international, as will advance the cause of research into motor neurone disease, to raise funds to support research into motor neurone disease, and to be an Approved Research Institute by meeting the conditions of section 73A of the Income Tax Assessment Act.
Carol Hickson faced this illness with courage and determination. She recently passed away at the age of 60. Once again I extend my deepest sympathy to the Hickson family. Carol's family requested that donations be sent to the Motor Neurone Disease Association in her memory. I quote the words of the family:
The unknowns of an illness can be frightening. The support of friends and loved ones is something very special to us and will never be forgotten.
The valuable work of both the Motor Neurone Disease Association of New South Wales and the Motor Neurone Disease Research Institute of Australia enables people to live in the hope that one day there will be a cure and until that day they will be well supported by the work of the association and the institute.
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