Our Organisation

The Motor Neurone Disease Association of Tasmania was founded in 1986, to assist people living with Motor Neurone Disease (MND) and their carers by providing useful and informative information, assisting with equipment needs, raising the profile of MND in the community and raising funds for research into MND. Our Objectives are to:

• provide the best possible assistance and information for people living with motor neurone disease, those whose diagnosis is not confirmed, and those who care for them;
• gather and share advice on coping with Motor Neurone Disease;
• create and nurture a caring link between people living with Motor Neurone Disease, by providing opportunities for interaction;
• raise awareness of Motor Neurone Disease and to maximise public contribution for care and research;
• foster and maintain links with Motor Neurone Disease Associations in other States, the National Association and other healthcare organisations and self-care groups; and
• encourage and support relevant research initiatives and to disseminate knowledge of research progress.

The Association works closely with a range of health and medical professionals, including GPs, neurologists, palliative care specialists, palliative care nurses, occupational therapists, physiotherapists and speech pathologists, to seek to equitably optimise the quality of life for motor neurone disease patients and their carers.

History

The Motor Neurone Disease Association of Tasmania was formed in 1986 by a small group of volunteers interested in helping people with motor neurone disease and their families. A few key individuals realised that the services for motor neurone disease patients and carers were not what they should be. This realisation was due to a number of factors, including the often slow response of a bureaucratic health system to the often complex and changing needs of many motor neurone disease patients. A series of meetings were held with the wonderful assistance of various LIONS Clubs, and steadily a pool of equipment was gathered and lent, depending on priority and availability, and the assistance of various health professionals.

Professional Affiliations

The Association is a member of the MND Australia the peak motor neurone disease care body in Australia and the Motor Neurone Disease Institute of Australia (MNDRIA). Motor Neurone Disease Tasmania is also a member of the Neuro Muscular Alliance of Tasmania (NMAT).

Key People

There are no paid staff however our President, Vice President, Treasurer, Secretary, Public Officer and ordinary members of the committee, are elected each year at the Annual General Meeting (AGM) usually around March. All members are welcome to attend and nominate people for committee positions.

About MND

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.

MND Tas Membership

As a member of  the Motor Neurone Disease Association of Tasmania you will receive our regular newsletter included with the MND Victoria newsletter.

Members living with MND also gain access to the Regional Advisor service.

To apply for membership please complete the membership application form.

Click here to download the membership form

Fact Sheets

MND Week 2011 Background Sheet

EB1 - MND evidence-based interventions - an overview

EB2 - Multidisciplinary care

EB3 - Multidisciplinary care teams

EB4 - Riluzole

EB5 - Breathing and MND - an introduction

EB6 - Breathing and MND - what you can do

EB7 - Breathing and MND - medications and NIV

EB8 - Considering gastrostomy