Life with locked-in syndrome – two more good news stories

The media has a tendency to focus on the negatives of profound disability by giving a hugely disproportionate level of coverage to disabled people who wish to end their lives and very little to the majority who actually value their lives.

I try to highlight these good news stories on my blog and have previously drawn attention to the fact that most people with ‘locked-in syndrome’ do not wish to die.

Locked-in syndrome hit the headlines after the experience of Tony Nicklinson. He went to court unsuccessfully to argue that his life had become so intolerable he should have the right to euthanasia and has since died from complications of his condition.

I was therefore encouraged to see two more positive stories about locked-in syndrome published over the last month.

Richard Marsh recounts his ordeal in the Guardian, explaining that doctors wanted to switch off his life-support after a stroke. He could hear every word but could not tell them he was alive. He is now 95% recovered.

The BBC has also posted a video featuring the story of Mike and Wendy Cubiss.

Mike had a massive stroke a couple of days after a holiday which left him paralysed and unable to talk.

He is able to communicate using his eyes by looking at letters on a board. Wendy has become expert at interpreting her husband’s thoughts. Given a little more time, he can also use a computerised voice system.

I cannot find the dialogue from the video reproduced anywhere on the internet so have pasted some of it here.

Wendy described how it all began:

‘Mike was forty… incredibly young. It was very bleak really but I had to carry on and the boys kept me going. They were only aged 12, 10 and 8 and I think the eldest one found it very difficult to cope with.’

When asked by the reporter if he had ever got to the point where he wanted to end his own life Mike answered, ‘No, I never thought of any other way but to live.’

Mike and Wendy have had enormous support from friends, family and carers who come every day but the key to Mike’s determination to live is his keen sense of humour, which is beautifully evident on the video itself (see above).

Says Wendy, ‘He’s still the same man and that was part of what I liked about him was his sense of humour and his sense of the ridiculous. He’s not a vain guy.’

When asked ‘Do you think Mike is happy?’ she replies as follows:

‘I think he is actually, yes. We can hear him laughing now as we say this but actually Mike is amazingly happy and I sometimes even am quite astounded how happy he is but he feels that this is better than being six feet under or better than being dead. He feels really good to be alive. He’s seen the boys grow up and is continuing to see how life shapes really.’

Mike and Wendy want to send a message of hope that life with locked-in syndrome can be fulfilling.

You have read this article locked in syndrome / Nicklinson with the title Nicklinson. You can bookmark this page URL https://celebrityunitedking.blogspot.com/2012/09/life-with-locked-in-syndrome-two-more.html. Thanks!

Most people with locked-in syndrome do not wish to die

Tony Nicklinson is 58 and paralysed from the neck down after suffering a stroke in 2005. He is seeking legal permission for a doctor actively to end his life.

A Channel 4 Dispatches programme tonight,'Let our dad die', put Tony’s case with powerful emotion but it did not tell us that most people with locked-in syndrome do not actually think like this man.

No one can help but be sympathetic to Tony Nicklinson but cases like his are extremely rare and hard cases make bad law.

The overwhelming majority of people with severe disability - even with ‘locked-in syndrome’ - do not wish to die but rather want support to live and the longer people have locked-in syndrome then generally the better they learn to cope with it and find meaning, purpose and contentment within the confines of the condition.

‘Locked in, but still lost in music: UK's bravest DJ’ tells the story of Bram Harrison, 34, who suffered brain damage two weeks before his 21st birthday after falling head-first off his bicycle. He was left with locked-in syndrome and can move only his eyes and eye lids.

So he communicates with his eyes: looking up means yes, down means no, cross-eyed means don't know. He chooses letters and words by blinking at them on a screen, which his computer translates into the written and spoken word.

This allows him to easily respond to questions from his small army of committed carers about what he wants and how he feels and also to work as a DJ.

Not surprisingly the playlist for his Eye Life radio show takes weeks to put together but he still does it!

Martin Pistorius is a South African man who ended up paralysed and comatose following a throat infection at the age of 12. His awareness began to improve four years later and by the age of 19 had fully returned.

However it was a further five years before a therapist noticed that he was trying to communicate. The penny eventually dropped that he had been aware of everything going on around him for almost ten years whilst everybody had assumed he was unconscious.

Now, ten years later aged 36, he is married and runs a computer business despite being still in a wheel chair with limited limb movement and using computerised speech.

His autobiography,‘Ghost Boy’ tells the story.

Nikki Kenward was left disabled after a partial recovery from paralysis caused by Gullain Barre syndrome. Her own inspiring personal story is well worth a read. Now she campaigns telling people about the dangers that changing the law to allow assisted suicide or euthanasia would pose to those with serious disability.

Then there is Graham Miles, the pensioner who told how he beat ‘locked in syndrome’ after suffering a massive stroke.

But perhaps the most famous of all is Jean-Dominique Bauby, the French editor of Elle magazine, who suffered a severe stroke, from which he never recovered, and yet wrote, the autobiographical ‘Diving Bell and the Butterfly’ which was ‘dictated’ letter by letter and has been made into a major feature film.

Most people with locked-in syndrome are happy, according to the biggest survey of people with the condition.

The desire to die is not primarily about physical symptoms but about the particular person and their ability to adapt to living with a profound disability.

Much as we sympathise with Tony Nicklinson, we should not, as RCGP President Iona Heath argued recently, be seeking technical solutions like euthanasia to what is in reality an existential problem.

That would be a very dangerous precedent indeed.

You have read this article Euthanasia / locked in syndrome / Nicklinson with the title Nicklinson. You can bookmark this page URL https://celebrityunitedking.blogspot.com/2012/06/most-people-with-locked-in-syndrome-do.html. Thanks!

Tony Nicklinson's case is tragic but there are limits to choice in a free society

Tony Nicklinson is 58 and paralysed from the neck down after suffering a stroke in 2005.

He is seeking legal permission for a doctor actively to end his life.

The Ministry of Justice had previously argued that the case should be struck out on the grounds that it is a matter for parliament, rather than the courts, to decide.

However the case has been allowed to go forward to a High Court hearing (A second case (that of ‘AM’ or ‘Martin’) is to be heard at the same time but has attracted less publicity).

The key point to grasp about this case is that Nicklinson, because he is not capable of killing himself even with assistance, is not seeking assisted suicide but euthanasia. So this is an assault on the law of murder and not the Suicide Act 1961.

Nicklinson is pushing for an even greater change in the law than either the controversial Falconer Commission on ‘Assisted Dying’ or the lobby group Dignity in Dying (formerly the Voluntary Euthanasia Society). They campaign for assisted suicide for people who are terminally ill – but euthanasia is one step further than assisted suicide and Nicklinson is not terminally ill.

Such a change would have far reaching implications by potentially removing legal protection from large numbers of sick and disabled people.

No one can help but be sympathetic to Tony Nicklinson but cases like his are extremely rare and hard cases make bad law. The overwhelming majority of people with severe disability - even with ‘locked-in syndrome’ - do not wish to die but rather want support to live and the longer people have locked-in syndrome then generally the better they learn to cope with it and find meaning, purpose and contentment within the confines of the condition (See my previous blogs about Bram Harrison, Nikki Kenward, Jean-Dominique Bauby, Martin Pistorius and Matt Hampson)

The desire to die is not primarily about physical symptoms but about the particular person and their ability to adapt to living with a profound disability. Most people with locked-in syndrome are happy, according to the biggest survey of people with the condition. We should not, as RCGP President Iona Heath argued recently, be seeking technical solutions to what is in reality an existential problem.

Nicklinson's legal team will be arguing two things:

1.'Necessity' can, in these circumstances, be a defence to murder (see my previous blog for what this means)

2. The existing law of murder, insofar as it denies Nicklinson the chance to be actively killed at his request, is incompatible with Article 8 of the ECHR (European Convention of Human Rights) - dealing with 'right to respect for private and family life'.

Nicklinson has the right to refuse treatment under existing law, and could do so, but what he is seeking to do instead is to give doctors the power to kill in specific circumstances on grounds of ‘necessity’. That would be a very dangerous precedent indeed.

The current law is clear and right and does not need fixing or further weakening. On the one hand the penalties it holds in reserve act as a powerful deterrent to exploitation and abuse by those who might have an interest, financial or otherwise, in the deaths of vulnerable people. On the other hand the law gives judges some discretion to temper justice with mercy when sentencing in hard cases. We should not be meddling with it.

Any further removal of legal protection by creating exceptions for bringing prosecutions would encourage unscrupulous people to take liberties and would place more vulnerable people – those who are elderly, disabled, sick or depressed – under pressure to end their lives so as not impose a burden on family, carers or society.

Even in a free democratic society there are limits to choice. Every law limits choice and stops some people doing what they might desperately wish to do but this is necessary in order to maintain protection for others. No man is an island and this case is about much more than Tony Nicklinson.

You have read this article Assisted Suicide / Euthanasia / Nicklinson with the title Nicklinson. You can bookmark this page URL https://celebrityunitedking.blogspot.com/2012/06/tony-nicklinson-case-is-tragic-but.html. Thanks!

Case of locked-in syndrome seeks to establish dangerous precedent

Legal action brought by a locked-in syndrome sufferer, who wants a doctor to be able to end his ‘intolerable’ life lawfully, can go ahead following a judge's ruling today.

The Ministry of Justice had previously argued that the case should be struck out on the grounds that it is a matter for parliament, rather than the courts, to decide.

But the judge's ruling today means that Mr Nicklinson's case will go to a full hearing, where medical evidence can be heard.

Tony Nicklinson is 57 and paralysed from the neck down after suffering a stroke. I have blogged on this case in some detail previously so will not review the background again here except to say that Nicklinson himself believes that assisted suicide should be available to anybody over 18 who wants it and not just the terminally ill.

Nicklinson's legal team will be arguing:

1.'Necessity' can, in these circumstances, be a defence to murder (see my previous blog post for details about what this means)
2. The existing law of murder, insofar as it denies Nicklinson the chance to be actively killed at his request, is incompatible with Article 8 of the ECHR (European Convention of Human Rights) - dealing with 'right to respect for private and family life'.

The key point to grasp about this case is that Nicklinson, because he is not capable of killing himself even with assistance, is not seeking assisted suicide but euthanasia. So this is an assault on the Murder Act 1965 and not the Suicide Act 1961.

Nicklinson is pushing for an even greater change in the law than either the controversial Falconer Commission on ‘Assisted Dying’ or the lobby group Dignity in Dying (formerly the Voluntary Euthanasia Society). They claim to be campaigning for assisted suicide for people who are terminally ill – but euthanasia is one step further than assisted suicide and Nicklinson is not terminally ill.

Such a change would have far reaching implications by potentially removing legal protection from large numbers of sick and disabled people.

No one can help but be sympathetic to Tony Nicklinson but cases like his are extremely rare and hard cases make bad law. The overwhelming majority of people with severe disability - even with ‘locked-in syndrome’ - do not wish to die but rather want support to live and the longer people have locked-in syndrome then generally the better they learn to cope with it and find meaning, purpose and contentment within the limits of their condition.

The desire to die is not primarily about physical symptoms but about the particular person and their ability to adapt to living with a profound disability. Most people with locked-in syndrome are happy, according to the biggest survey of people with the condition.

Nicklinson has the right to refuse treatment under existing law, and could do so, but what he is seeking to do instead is to give doctors the power to kill in specific circumstances on grounds of ‘necessity’. That would be a very dangerous precedent indeed.

The current law is clear and right and does not need fixing or further weakening. On the one hand the penalties it holds in reserve act as a powerful deterrent to exploitation and abuse by those who might have an interest, financial or otherwise, in the deaths of vulnerable people. On the other hand the law gives judges some discretion to temper justice with mercy when sentencing in hard cases. We should not be meddling with it.

Any further removal of legal protection by creating exceptions for bringing prosecutions would encourage unscrupulous people to take liberties and would place more vulnerable people – those who are elderly, disabled, sick or depressed – under pressure to end their lives so as not impose a burden on family, carers or society.

Even in a free democratic society there are limits to choice. Every law limits choice and stops some people doing what they might desperately wish to do but this is necessary in order to maintain protection for others. No man is an island and this case is about much more than Tony Nicklinson.

You have read this article Euthanasia / Nicklinson with the title Nicklinson. You can bookmark this page URL https://celebrityunitedking.blogspot.com/2012/03/case-of-locked-in-syndrome-seeks-to.html. Thanks!

Tony Nicklinson – there are limits to choice in a free society

As reported in the Guardian, Telegraph and Huffington Post, Tony Nicklinson, a 57 year old man paralysed from the neck down after suffering a stroke that left him with locked-in syndrome, today began a high court battle to allow doctors to end his life.

Today’s hearing was a ‘pre-trial review’ and a Ministry of Justice lawyer argued that the case should be struck out on the grounds that it is a matter for parliament, rather than the courts, to decide.

I have blogged on this case in some detail previously so will not review the background again here.

But the key point to grasp is that Nicklinson, because he is not capable of killing himself even with assistance, is not seeking assisted suicide but euthanasia. So this is an assault on the Murder Act 1965 and not the Suicide Act 1961.

Nicklinson is pushing for an even greater change in the law than either the controversial Falconer Commission on ‘Assisted Dying’ or the lobby group Dignity in Dying (formerly the Voluntary Euthanasia Society). They claim to be campaigning for assisted suicide for people who are terminally ill – but euthanasia is one step further than assisted suicide and Nicklinson is not terminally ill.

Such a change would have far reaching implications by potentially removing legal protection from large numbers of sick and disabled people.

No one can help but be sympathetic to Tony Nicklinson but cases like his are extremely rare and hard cases make bad law. The overwhelming majority of people with severe disability - even with ‘locked-in syndrome’ - do not wish to die but rather want support to live.

The current law is clear and right and does not need fixing or further weakening. On the one hand the penalties it holds in reserve act as a powerful deterrent to exploitation and abuse by those who might have an interest, financial or otherwise, in the deaths of vulnerable people. On the other hand the law gives judges some discretion to temper justice with mercy when sentencing in hard cases. We should not be meddling with it.

Any further removal of legal protection by creating exceptions for bringing prosecutions would encourage unscrupulous people to take liberties and would place more vulnerable people – those who are elderly, disabled, sick or depressed – under pressure to end their lives so as not impose a burden on family, carers or society.

Even in a free democratic society there are limits to choice. Every law limits choice and stops some people doing what they might desperately wish to do but this is necessary in order to maintain protection for others.

You have read this article Euthanasia / Nicklinson with the title Nicklinson. You can bookmark this page URL https://celebrityunitedking.blogspot.com/2012/01/tony-nicklinson-there-are-limits-to.html. Thanks!