Locked-In Syndrome Patient Tweets the World
A man suffering from locked-in syndrome has taken to Twitter to greet the social media world for the first time. This comes just before his right-to-die case is set to be taken up at the UK’s High Court.
Seven years ago Tony Nicklinson, previously a very active sports enthusiast just coming into his 50s, had a massive stroke that resulted in the left side of his body being completely paralyzed. The stroke left him unable to communicate with the outside world without the help of a special computer set-up that tracks the movement of his eyes to match them to letters, turning those groups of letters into words.
It was through this set-up that Nicklinson was able to amplify his voice and write his first ever tweet, and if the rate of increase in his number of followers is anything to go by, Mr Nicklinson is proving quite popular.
He wrote the message: “Hello world. I am tony nicklinson, I have locked-in syndrome and this is my first ever tweet. #tony.”
After being on the website for less than 24 hours, he had almost 2,500 followers.
Channel 4′s Dispatches captured the moment ahead of a programme about Mr Nicklinson’s life which airs on Monday at 8pm.
This Monday, Mr Nicklinson and family will go before the UK’s High Court to argue that it should be lawful for a doctor to help Mr Nicklinson end his life. The previously active 57-year-old has said that his life has become “undignified” and “intolerable,” and described his quality of life saying:
“I cannot scratch if I itch, I cannot pick my nose if it is blocked and I can only eat if I am fed like a baby – only I won’t grow out of it, unlike the baby.”
Mr Nicklinson is making a claim that the High Court should grant narrow declarations that a doctor should, with Mr Nicklinson’s full consent and made with full mental capacity, have what is known as a “common law defense of necessity” against any murder charge.
Mr Nicklinson’s case comes as several individuals, all with very different circumstances, have sort to challenge the UK’s laws against assisted dying.
The British Medical Journal recently published a call for MPs to stop opposing assisted dying, something that groups like the British Humanist Association and Dignity in Dying have welcomed.
However, religious conservative groups, many with the support of more mainstream Anglicans and Roman Catholics, have come out against any law reform and any high court judgement granting narrow exemptions, believing that such concessions could lead to abuses further down the line.
The British Medical Association is set to debate the issue later this month, though as of writing the BMA’s current stance is against assisted dying.
Locked-In Syndrome is an aggregate term for when a patient, due to a variety of causes, is aware and awake but cannot move or communicate verbally due to paralysis of nearly all voluntary muscles in the body, except for movement of the eyes. This is distinguished from Total Locked-In Syndrome where the muscles that control movement of the eyes are also paralyzed.
It is extremely rare for any significant motor function to be recovered in cases of locked-in syndrome, and a complete cure remains beyond current science.