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Motor Neurone Disease

Posted on: Tuesday, 14 March 2006, 06:01 CST

By Lyndsay Moss

AROUND 5,000 people in the UK, including 250 in Scotland, are living with the devastating consequences of motor neurone disease (MND). The cause of MND is unknown and there is currently no cure, meaning patients see the disease progress rapidly, robbing them of their ability to walk, talk or feed themselves.

But their intellect and senses remain unaffected - a fact which many say makes the condition even more cruel. They can still think and feel, but have difficulty communicating because their muscles refuse to work.

MND is the name given to a group of related diseases that affect the nerve cells in the brain and spinal cord. The cells gradually die and the muscles stop working. There is currently only one proven treatment for MND: a drug called Rilutek, which can give patients an extra three to six months of life.

Life expectancy for most patients is two to five years after diagnosis, with around half dying within 14 months. But there are exceptional cases, such as the globally renowned scientist Professor Stephen Hawking, who has survived with MND for more than 35 years.

Many are hoping that new drugs, or even experimental treatments involving stem cells, could offer new hope. Early symptoms of the disease can be slight, meaning some patients wait up to 18 months to be diagnosed, simply because there is no easy test. The early signs include clumsiness, mild weakness and slurred speech. But the disease affects each sufferer in different ways, varying enormously from person to person.

One sufferer who came to international attention was Diane Pretty. She fought a long-running legal battle for the right to be helped to die by her husband without fear of his being prosecuted. She lost her case and died from the disease in 2002.

Famous people who have died with MND include the actor David Niven and the footballers Don Revie and Willie Maddren.

Kirstine Knox, the chief executive of the MND Association, says: "MND is a cruel and devastating condition, and kills three people every day in the UK."

Source: Scotsman, The

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