'Locked-in' people happy with lives

IT MAY seem like a living hell, but a French study has shown most victims of locked-in syndrome – where they cannot move or speak – are happy in their lives.

The study, carried out in France and Belgium, found that only a few sufferers were
unhappy, and that the source of their unhappiness could easily be changed.

There are about 600 victims in France and, with proper care, they can expect to live for decades.

The study contacted 168 of them in conjunction with the non-profit French Association for Locked-in Syndrome (ALIS) and asked about their family and social life, their health (whether they had pain or mobility problems) and also their morale.

Although unable to talk, the patients communicate through various methods, most commonly by eye movements, or by hand, head or finger movements.

This can allow them, with the help of an adapted computer keyboard, to “speak” to their family or send emails.

They were able to reveal to the researchers that, for the most part, they are contented.

Only 65 responses were full enough to be used in the study but, of these, only 18 said they did not have a “good life” and 72 per cent said they were happy. Four sufferers said they no longer wanted to live.

This finding astonished study author Dr Steven Laureys, of Liege University. It challenged the view that locked-in patients had no quality of life or would prefer euthanasia. He was impressed by how much they had managed to adapt themselves into their family lives and to live a “full life”.

However, Dr Laureys cautioned against reading too much into the responses, because quality of life was a very subjective measure and there was always the risk of patients giving answers that their carers wanted to hear.

In addition, the people who did not respond may have been the ones with the worst quality of life.

One major result was they discovered there was more need for specialised care “directed at mobility and recreational activities and the importance of therapy against depression”.

Longer-term patients were the more likely to report happiness, the report said.

Patients had been LIS victims for periods of between one and 28 years, and 64 per cent lived at home. The same percentage had a spouse or partner.

In all, 82 per cent said their personal relationships were sound, although 40 per cent were dissatisfied with social activities.

Seventy-nine per cent found they were not involved in what they considered important daily activities.

As for changes in their condition, 70 per cent had recovered some limb mobility and slightly more than half had recovered some speech.