Like many of us, I was saddened to hear of the death of Stephen Hawking last month. Despite suffering from a debilitating physical disease since the age of twenty-one, he went on to become one of the greatest scientists of all time, often referred to as a ‘genius’.

Hawking suffered from Motor Neurone Disease for almost his entire adult life. The condition was largely unheard of when he was diagnosed in 1963, although some were aware of its other titles, Amyotrophic Lateral Sclerosis and Lou Gehrig’s disease.

Those fortunate enough to see Eddie Redmayne’s award winning portrayal of Stephen Hawking in the 2014 movie, The Theory of Everything, will have some understanding of the challenges he faced following his diagnosis as a young student at Oxford. Despite his physical decline, his hunger for knowledge continued and his determination to learn and discover never faltered. Even as communication became difficult, his academic brain fought on, not only educating himself, but sharing his knowledge and findings with others.

Hawking was probably best known for his research and theories regarding ‘black holes’. These theories are now referred to as ‘Hawking radiation’ and were among many scientific works studied by him during his lifetime. The list of honors and awards accumulated by Hawking is endless – certainly too long to list here – and a reflection of his dedication, determination and brilliance. One has to wonder what else he would have achieved without the physical restrictions forced upon him by MND.

Having watched my own father-in-law die from Motor Neurone Disease in 2004, it was particularly sad for me to learn that the disease had claimed yet another life. My father-in-law died just five months after being diagnosed. His decline was rapid, shocking and, from his point of view, degrading. One by one, his muscles began to fail. He couldn’t walk or talk; his tear ducts shut down; and he was unable to eat or drink. Watching someone suffer in this way is heartbreaking and it’s not surprising to learn that 7-10 people diagnosed with MND, die within the first 3-5 years. So, how was Stephen Hawking able to survive for so long?

When he was diagnosed in 1963, he was given a life expectancy of just two years. It’s hard to comprehend that he went on to live with the disease for over fifty years. His personal story is both traumatic and empowering and there’s no denying that many MND sufferers (and those living with other physical or mental disabilities) have benefited from Hawking’s own distressing experiences. He was, without doubt, the most high profile individual to be diagnosed with the disease and, despite his numerous academic achievements, will always be remembered as such. Thankfully, though, it’s not all doom and gloom. Hawking will also be remembered for his sharp sense of humour, something Eddie Redmayne captured brilliantly in The Theory of Everything. When he first trialed a speech-generating device after losing the ability to communicate, he was disturbed to learn that it came with an American accent. When presented with the opportunity to change it at a later date, he declined on the grounds that he actually rather liked it. He also became notorious for the somewhat erratic use of his wheelchair.

Despite the life sentence imposed by MND, Hawking married twice and fathered three children. The affect of the disease on every one of his family members should not be underestimated. Living with MND is not only traumatic for the sufferer, it’s also deeply distressing for the family; something the MND Association is keen to highlight.

Stephen Hawking died peacefully on 14th March 2018 after battling with a slow-progressing from of MND for fifty-fives years. He once said that he wished to be regarded as ‘a scientist first, popular science writer second, and, in all the ways that matter, a normal human being with the same desires, drives, dreams, and ambitions as the next person.’

MND didn’t define Stephen Hawking, it merely disguised the genius that never refused to give up.

Motor Neurone Disease (MND) affects the nerves (motor neurones) in the brain and spinal cord that tell your muscles what to do. With MND, messages from these nerves gradually stop reaching the muscles, leading them to weaken, stiffen and waste.

MND can affect how you walk, talk, eat, drink and breathe. It can also affect a person’s thinking and behaviour.

MND is life-shortening and there is no cure. It can affect adults of any age, but is more likely to affect those over 50.

There are four main types of the disease, each having different symptoms and prognosis:

Amyotrophic lateral sclerosis (ALS). This is the most common strain of the disease. Symptoms are first noticed in the hands and feet with muscles becoming stiff and weak.
Progressive bulbar palsy (PBP). The muscles used for talking, chewing and swallowing are those first affected by this strain.
Progressive muscular atrophy (PMA). This is a less common form of MND. Small muscles in the hands and feet are the first to be affected becoming weak but not stiff.
Primary lateral sclerosis (PLS). This is rare and mainly affects the leg muscles. Clumsiness in the hands or speech problems could also be a sign of PLS.

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