Background Information:

Motor Neuron Disease (MND - the issues)
Although relatively rare, Motor Neuron Disease is a distressing terminal disease which often makes the headlines because people want help to die before the disease takes its natural course. Some forms of cancer, and full blown AIDS, place people in a similar position. Coping with such conditions, and requesting the help to die, can be very stressful for carers and others.

The Law
Currently in England and Wales any assistance in a suicide carries a prison sentence in years. In Scotland prosecution comes under 'recklessly endangering life' or 'culpable homicide'.

Young carers and MND
Relatively little is known about MND and although rare, the fact that a small percentage of cases are familial may cause further anxiety for young people coping with a parent with the disease. While risks may be small statistically, most people are frequently unclear about how to interpret statistical risk, and may make emotional and personal interpretations which can be detrimental to their mental and physical health. To try and keep anxieties to a minimum, at what is already an anxious and frightening time, it is important to try to have some kind of perspective on the relative rarity of the disease, the average age at onset (55) and possible developments in science and medicine in the future.

The nature of the disease
Motor Neuron Disease (MND) is neurodegenerative disease which occurs in adults. The exact cause is unknown. At present there is no treatment that substantially slows the progression of the disease and the average time of survival from the start of symptoms is only about three years. It can begin in either the lower limbs or upper body but eventually spreads to the entire body. People with MND eventually die from asphyxiation as the motor neurons controlling breathing become affected by the disease and gradually cease to function. Those with the disease remain mentally alert throughout the entire course of the disease.

Incidence
The incidence of the disease in the UK is currently one or two per hundred thousand of the population. A GP practice with 10,000 patients on their list is likely to encounter a case every two to three years. MND predominantly affects middle aged and elderly people with mean age of onset being 55 years, although younger adults are occasionally affected. The disease is sporadic in about 90% of cases, but about 10% are familial.

How's it diagnosed?
There is no specific test for MND at present. Tests are usually carried out to confirm the diagnosis by eliminating other possible conditions. Diagnosis may be difficult because the pattern of symptoms varies between individuals and may be similar to those seen in other conditions.

The future
New understanding of the development of the disease is suggesting the way towards more effective treatment to try and slow or stop injury to motor neurons. As scientific developments prolong survival, attention will become increasingly focused on quality of life.