Just imagine being locked inside your own body. Your mind is as sharp as ever, and you can feel pain as acutely as when you were well. But your body is unrecognisable as your muscles waste away, and out of your control. You know it's only a matter of time before you can't get to the toilet, or even breathe, on your own. That is motor neurone disease, or MND.
Over the years, there have been high-profile cases in the media about people suffering from MND. But most of the coverage has related to how they end their lives, not how they live until they die. In 2002, Diane Pretty died at the age of 43 from MND, having fought a long, public and unsuccessful legal battle to allow her husband to help her commit suicide. In 2006, the soap opera Holby City took up the cause when Gina, who was suffering from MND, travelled to a Swiss assisted suicide clinic to end her life.
Last year, Paul Chamberlain, a former chartered accountant diagnosed with MND in 2010, wrote about his decision to obtain drugs from abroad to end his own life at a time of his choosing. He decided to go public about his decision partly to stop his wife from being accused of assisting him - still a criminal offence in the UK.
This month is Motor Neurone Disease Awareness Month. It may not be as well-known as multiple sclerosis but a diagnosis of MND is every bit as devastating. It's not curable, although there are specialist teams across the country with healthcare professionals, who can provide a wide range of support and treatments to help with the disability it causes. It affects up to 5,000 people in the UK at any one time. It progresses fast and without mercy - half of people with MND die within 14 months of diagnosis. But perhaps because not as many people are personally touched by MND, charities like the MND association can struggle to get their voices heard.
MND usually strikes people in their 50s and 60s, although, as Diane Pretty proved, it can start much younger. It can strike anyone, with 95% of people diagnosed having no family members affected. It's a progressive degenerative disease affecting the motor nervous system only. That means hearing, taste, feeling touch or pain, vision and (except in one rare kind of MND) memory and mental capacity are not affected. But with time, speech and swallowing, as well as more obvious 'motor' functions like walking, are.
The MND association wants more awareness because it means policymakers and holders of budgets for health and social care will have a better understanding of how important it is to target the best possible services to care for people with MND. They want more awareness because they need more funds. They need more funds to invest in research if they're ever going to reach their ultimate goal of a cure. And they want all of us to spread the word because sufferers tell them it can be a powerful way to keep their voice, when their own might be getting fainter.
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