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Facts
What is Motor Neurone Disease?
What are the symptoms?
How is it diagnosed?
What remains unaffected?
Is there a cure for MND?
Alternative therapies
What can be done?
RealTime Health provides information about MND in an accessible video format.
People who receive a diagnosis of any serious illness, and those close to them, are very likely to have feelings of shock, anger and despair. This is especially true when people who are fit, well and active, develop very early signs of Motor Neurone Disease such as a weakness in one hand.
The shock experienced when hearing the diagnosis frequently means that people do not remember very much of what their Neurologist has explained to them at the time of diagnosis.
The questions they most frequently ask, and the answers commonly given are:
What is Motor Neurone Disease?
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.
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What are the Symptoms?
Early symptoms are mild, and include stumbling due to weakness of the leg muscles, difficulty of holding objects due to weakness of hand muscles, slurring of speech or swallowing difficulties due to weakness of the tongue and throat muscles. The effect of MND varies enormously in respect of initial symptoms, rate and pattern of progression, and survival time after diagnosis.
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How is it Diagnosed?
The diagnosis of MND is often clinically difficult, and it sometimes is necessary to review patients for some time before the diagnosis becomes relatively certain. The family doctor may suspect the neurological problem, and confirmation of the diagnosis by a Neurologist is desirable.
The diagnosis can be assisted through a range of tests, including some which eliminate other conditions. Often an Electromyograph (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.
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What remains unaffected?
In the majority of cases the intellect and memory are not affected, nor are the senses of sight, hearing, taste, smell and sensation.
The bowels and bladder are not affected by the disease, although diet and exercise should be carefully monitored.
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Is there a cure for MND?
As present there is no cure, but co-ordinated research is being carried out across the world and encouraging progress is being made. 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 or other media of new advances. You should always check with your own Doctor or caring team before you try these.
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Alternative therapies
When diagnosed with a terminal disease, patients and their families often become proactive in the search for alternative medicines that claim to offer improvements of symptoms and/ or a delay in the progression of MND. Such treatments may involve the use of snake venom, goat serum, Olfactory Ensheathing Glia (OEG) transplantation, or herbal treatments.
The International Alliance released a policy on alternative treatments to provide guidance to help patients and their families make better informed decisions about their health.
MNDAWA endorses this policy, and suggest, asking yourself the following questions when looking at alternative treatments:
- What claims are being made for the treatment?
- Who is making these claims and what evidence is there to support these claims?
- How are people finding out about the treatment?
- Who is offering the treatment?
- What are the risks and other possible side effects?
- What follow-up monitoring is carried out after the treatment?
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Further information and resources may be obtained from the International Alliance of ALS/MND Association website. http://www.alsmndalliance.org/resources.html
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What can be done?Support people include the family, friends, GP's, Neurologists, Occupation Therapists, Speech Pathologists, Home Care Nurses and Social Workers.
Information about the support group available in your State can be obtained from the Motor Neurone Disease Association or our other Australian Associations Page.
Some Associations, as well as the National Association (MNDAA), employ professionals to provide advice about resources and equipment as well as psychological support, all of which can maximise the quality of life for people living with MND and for their families and other carers.
These professionals work together with those who have personal experience of living with MND and their carers, including those who have cared for their loved ones in the past, to provide support and advice based on a wide understanding of the nature of the issues associated with each stage of the disease.
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"Speaking from Experience" was based on the concept of recording individuals talking about themselves and their disease, and the various stages of the disease they experienced. The MND video focuses on 8 stages - Diagnosis, Reaction, Concerns, Physical Symptoms, Coping, Relationships, Lifestyle Issues and Closing Thoughts. Click Here to visit RealTimeHealth .
Acknowledgements
This information is thankfully provided by the following:
Motor Neurone Disease Association of Victoria
What is Motor Neurone Disease?
Living with Motor Neurone Disease
Maintenance of Independence
The Diagnosis & Treatment of Amyotrophic Sclerosis
Tucson, Arizona, 1979
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