Motor Neurone Disease (MND) is a rare condition that directly affects the brains and nerves. There is currently no cure, with symptoms increasing over time. Symptoms of motor neurone disease include muscle weakness, twitches, slurred speech and difficulty swallowing. The degenerative condition eventually leads to death, but people with MND are living for longer as medical technology and treatments advance.
MND is also called amyotrophic lateral sclerosis (ALS) and Lou Gehrig's disease. The latter is named for the famous New York Yankees baseball player who lived with, and died from, the disease.
The condition does not affect the senses of eyesight, hearing, taste, smell and touch. Although the condition is extremely difficult to live with, it is not painful.
The first symptoms are hands, feet or voice weakness. Symptoms then progress to slurred speech, emotional lability, clumsiness, muscle wasting and weight loss, plus many more. There can often be changes to cognitive thinking as well as personality.
Everyday activities such as gripping items or walking become increasingly more difficult. Eventually, these tasks become impossible.
Later onset effects of MND are losing speech and paralysis of both sides of the body. As MND fully develops, you may become completely dependent on 24/7 care.
While the disease is still incurable, fortunately one form of medication is available to prolong survival. Riluzole has a modest impact on survival. Currently, it is the only drug to be licensed for the treatment of MND in the UK and fully approved for use by the NHS.
Life expectancy rates for a person diagnosed with MND are between 1 to 5 years. Over 10% of people with a diagnosis live to 10 or more years.
The most famous person to receive an MND diagnosis was physicist, cosmologist and author Stephen Hawking. In fact, he was responsible for the condition receiving a lot more coverage and awareness. Most miraculously, he outlived the 1-5 year prognosis by a long way. When he passed away at the age of 76, he had received his MND diagnosis 55 years earlier.
Hawking is also known for his work with the charity MND Association. He started working with them when they formed in 1979. In 2008 he became a patron, a title he held until his death in 2018.
In 2015, he launched The Stephen Hawking Foundation which, along with scientific research, facilitates and supports MND and those living with MND.
Whilst most people are diagnosed over the age of 50, with more men than women, it generally does not discriminate.
Up to 10% of those diagnosed have a family history of MND, but there is no fixed cause.
Six people are diagnosed with MND every day in the UK. There are around 5,000 adults with MND in the UK at any one time. It kills a third of people within a year and more than half within two years of diagnosis.
It is this figure alone that helps to make Stephen Hawking’s life truly unique.