Motor Neurone Disease

Motor Neurone Disease (MND) causes a progressive weakness of many of the muscles in the body. The most common type of MND is called 'amyotrophic lateral sclerosis' (ALS) but there are other less common sub-types. There is no cure for MND but treatments can help to ease symptoms and disability.

The Condition
In MND, motor nerves become damaged and cease to work. The muscles that the damaged nerves supply gradually lose their strength. Symptoms tend to start in different ways for everyone affected by MND. However, as the disease progresses, any of the symptoms may be present

The main types of MND are:

Amyotrophic lateral sclerosis (ALS) is the most common type of MND, it affects about two thirds of those diagnosed. It affects both upper and lower motor neurones and leads to stiffness, particularly of the legs and weakness. Average life expectancy is from 2-5 years from start of symptoms

Progressive bulbar palsy affects about a quarter of those diagnosed. The muscles first affected are those of the head and neck including those used for talking, chewing, and swallowing (the bulbar muscles). Average life expectancy is 6 months to 3 years from start of symptoms

Progressive muscular atrophy affects about a tenth of those diagnosed. The small muscles of the hands and feet are usually first affected, but the muscles are not stiff. Average life expectancy is over 5 years.

Primary lateral sclerosis is a rare type of MND. It mainly causes weakness in the leg muscles. Some people with this type may also develop clumsiness in the hands, or speech problems. Life expectancy is similar to normal life span

How common is MND?
In the UK about 2 - 4 per 100,000 develop MND each year, it is rare. There are about 4,000 people in the UK with MND

Who gets MND?
MND can affect anyone but is rare under the age of 40. It usually develops between the ages of 50 and 80. It is more common in men, affecting about three men for every two women

In over 9 in 10 cases, it occurs 'out of the blue' or sporadically. In these cases there is no family history of the disease, it cannot be passed onto children - it is not hereditary
In less than 1 in 10 cases the condition is familial, there is a possibility that it may be passed on to some children

What causes MND?
The cause is not known. It is thought that certain chemicals or structures that only occur in motor nerves are damaged in some way. The reason for this damage is not clear. It is also not clear why sensory nerves, which have a similar structure, are not affected. There may be one or more environmental factors that may trigger the damage in someone who is susceptible to the disease. Research continues to find the underlying cause of the damage to the nerves

About 70% people with MND die within 3-5 years of the onset of symptoms - 20% live for 5 years and about 10% survive 10 years or more

There is no cure for MND but the drug Riluzole, has shown a modest improvement in the survival rate. It is licensed by the National Institute for Health and Clinical Excellence (NICE) for use following the diagnosis of MND

Motor Neurone Disease Association
PO Box 246
Northampton
NN1 2PR

Tel: 08457 626262
Helpline - MND Connect - 08457 626262
Email: enquiries@mndassociation.org
Website: www.mndassociation.org.uk

North East Care Advisor
The North (Northumberland, Newcastle and Durham) - Helen Ward;  0845 375 1820;  helen.ward@mndassociation.org Cleveland, East and North Yorkshire - Colin Pearson;  0845 375 1837;  colin.pearson@mndassociation.org

The MND Association has almost 100 branches and groups across England, Wales and Northern Ireland, all run entirely by volunteers who work together in many different ways to provide support, raise awareness, influence, and fundraise at a local level

North East Motor Neurone Disease Trust
Whickham Villa Health Club
8 Millfield Road
Whickham
Newcastle-Upon-Tyne
NE16 4QA

Tel: 0191 488 7351
Helpline: 0800 285 1001
Website: www.nemndt.co.uk

A Charitable Trust set up in the North East of England to benefit those people diagnosed with MND, their families and carers. The main aim of the trust is to concentrate solely on the North East region. Administered in the North East, all of the trustees live in the North East and all have first hand experience of the needs of people with or who care for MND

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