It was only in 2012 that long-term locked-in syndrome sufferer Tony Nicklinson died aged 58 after suffering with the condition for 7 years, denying treatment from the start. After facing many High Court battles to be given the right to end his own life were denied, he soon after became diagnosed with pneumonia and died as a result, followed by refusing to eat for several days.
The 58-year-old was said to be ‘heartbroken’ making the decision to put his life to an end and that his defeat with the High Court left him the only ‘horrific’ decision to starve himself to death.
Locked-in syndrome is a physical medical condition usually caused as a result of a stroke which damages part of the brainstem. The body and facial muscles are left paralysed but the person remains conscious and the ability for certain eye movements is preserved.
It’s important to know what causes a stroke to happen and this can be largely dependent on lifestyle or genetic factors. In the case of a stroke a blood clot blocks the blood flow and oxygen to the brain. Blood clots typically form in areas where the arteries have become narrowed over some time by plaques and fatty deposits.
Throughout life arteries can narrow naturally, but certain things can harmfully accelerate the process of having a blood clot. This may include obesity, diabetes, smoking, high blood pressure, excessive alcohol in-take and also high cholesterol levels.
There has also been long-term skepticism centered around blood clot scares amongst women as a result of taking the combined contraceptive pill.
It has been recommended by doctors that if you have a family history of blood clots you should not use this contraceptive method and seek an alternative as this could heighten your own risk of experiencing a clot.
It has been recommended by doctors that if you have a family history of blood clots you should not use this contraceptive method and seek an alternative as this could heighten your own risk of experiencing a clot.
Peter Moore, Regional Director at the Stroke Association in the North East, said: “Locked-in syndrome is an extremely rare consequence of stroke. The condition causes paralysis in all parts of a patient’s body, apart from the muscles that control eye movement.
“For many people with locked-in syndrome, the severe effects of their stroke will remain with them. However therapy can help to improve someone’s quality of life and may even enable them to return home to live with their family. Complete recovery from locked-in syndrome is rare, but people can – and do – make improvements throughout their rehabilitation.”
Christine Waddell, 44, from Chester-le-Street, has been a sufferer of locked-in syndrome for eighteen years, making her Britain’s longest survivor of the condition to date.
She describes what it’s like to live with the syndrome: “In the early days it was terrifying to an extent that no one could comprehend, so much that I used to dread each day incase the doctors thought I was dead. It isn’t scary now, just disheartening, which I use to boost my determination levels.
“When I initially had the stroke, I expected the physical loss to be the hardest, but this wasn’t the case. The inability to do things, especially making myself heard, drives me crazy. The way people view my disability as well is so frustrating.”
Kate Allatt, 44, mother-of-three from Sheffield used to have the syndrome but recovered successfully in 2010 and has since been awarded the titles ‘Extraordinary Woman 2011’ and “Extraordinary Person Endeavour 2011’.
She has also written and published a book in 2011 about her locked-in syndrome journey entitled ‘Running Free – Breaking out of locked in syndrome’ and is now also a respected spokesperson and actively involved with stroke recovery research.
She describes the condition: “Locked-in syndrome is like waking up inside your own coffin. Imagine being able to think, feel and hear everything normally, whilst being unable to move at all.
"It’s essentially being trapped inside a physically paralysed shell; a scary and often painful experience where you are unable to stop overthinking about everything.”
"It’s essentially being trapped inside a physically paralysed shell; a scary and often painful experience where you are unable to stop overthinking about everything.”
Both of these inspirational survivors prove that there is a life after locked-in syndrome and their enthusiasm to continue the fight is completely contagious.
Despite the tragic situation that follows the condition quality of life can be improved and it is possible to work towards stable survival.
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