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Locked-In Syndrome Patient Tweets the World

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.

Reports the AP:

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.

 

Related Reading:

B.C. Supreme Court Legalizes Assisted Suicide

Physician-Assisted Suicide Ballot Push in Massachusetts

B.C. Woman Asks for Right to Assisted Suicide

Dignity and Compassion in Assisted Suicide

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Image used under the Creative Commons Attributions License with thanks to Rosaura Ochoa.

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59 comments

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5:55PM PST on Feb 9, 2013

When I had my stent put in, I woke and could hear, understand and feel but I couldn't talk. I wouldn't want to be this way for the rest of my life either.

6:16AM PDT on Jun 24, 2012

Given that this man is of sound mind and can give consent free of coercion despite his condition, I don't see why he shouldn't be allowed to have a doctor help him to die.

After all, people who have the privilege of movement exercise their right to bodily autonomy every day - and end their lives. That same right to bodily autonomy should apply to those with conditions that mean they need someone to act as a proxy when it comes to ending their lives.

10:30AM PDT on Jun 19, 2012

Like others ,I too am fed up with the influence religious groups have on matters like this. I do hope he wins his case. How sad.

6:16AM PDT on Jun 19, 2012

Sad situation. My old headteacher's daughter has the same condition. Mad how a normal person can change to this in an instant, so upsetting for them and the family. I can't even imagine.

1:36AM PDT on Jun 19, 2012

Care2 needs to get rid of this ridiculous limitation on sending green stars to the same person more than once a week; if someone is making worthwhile comments and I want to tell them so,
I should be able to do it any time I want. You would never tell your family members, friends, or business associates that they get only one compliment per week, even if you are thinking they deserve more.

12:19AM PDT on Jun 19, 2012

I love apes are using iPads and technology is helping people who are suffering greatly from a lack of communication abilities

9:47PM PDT on Jun 18, 2012

How can religious groups be allowed to impose their will in this situation. Gods only exist in the minds of their believers. I do not believe in God fore it's like believing in ghosts fine if you want to do it just don't expect me to. So why are they allowed to interfere in this instance. Why can assisted death not be done on a case by case basis? If somebody is well and able mentally to make that decision why do we deny them in such tragic cases. I would never ever want to live with locked in syndrome or similar and it infuriates me that people are allowed to interfere on the basis of unproven god beliefs and fear of getting involved in the facts.

8:40PM PDT on Jun 18, 2012

After reading some of the posts more than once I think I finally understand the real reason some people object to allowing people to die with dignity and with the help of a doctor. You people are not worried about this man or anyone else in his situation, you are worried about yourself. You are so afraid that if we allow doctors to help someone out of their pain that it might be forced on YOU some day. You don’t trust the doctors and you don’t trust the people in government offices and you think by denying these people the help they need YOU will be safer, how sad and SOOO FALSE. They cover up their crimes NOW and making this legal with the proper regulations will NOT make matter worse. NO one should have the power of life over death except the person living the life in question. Don’t let YOUR fear and doubt cause others to suffer.

6:06PM PDT on Jun 18, 2012

While I would not want to live this way I could not be the person that helped him die either.

5:34PM PDT on Jun 18, 2012

we have no problem putting our pets down when they no longer have quality of life. Why can we not grant the same to ourselves?

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