Broken but unbowed

Eileen Fursland finds there is new hope for victims of spinal injuries, many of whom - like Christopher Reeve - were once the most fit and active of people

"He looked just the way you think Superman should look, didn't he? Those muscles, that neck - and he seems a nice guy, too. What a way to end up," said my hairdresser as we heard on the radio that the actor Christopher Reeve had broken his neck.

No one can be sure at this stage what the outcome will be, but he is lucky to have survived at all, according to Dr Fred Middleton, director of the Spinal Injuries Unit at the Royal National Orthopaedic Hospital in Stanmore, Middlesex.

Reeve has fractured the first and second cervical verebrae in his neck. "With damage to the spinal cord at this level, most people would die at the scene because the nerves that supply the diaphragm would be affected, and breathing would stop. But once someone is in hospital and on a ventilator, things can be stabilised. However, it's a very disabling condition - he would have no feeling or movement at all from just above his shoulders," Dr Middleton said. "His doctors are no doubt at the stage of trying to predict if there is any potential for improvement.

"Communication is one of the big problems, of course. People want to talk, but during the early stages on a ventilator they can't."

A thousand people every year in the UK suffer the catastrophe of spinal injury - in car accidents, on the rugby pitch, diving into shallow water or, as in Reeve's case, falling from a horse. Often the most fit, active and adventurous among us, their average age is just 19.

"For a fit and active person like Reeve it will be a serious psychological blow," said Simon Barnes, a man who can imagine more easily than most the anguish the actor must be suffering. Mr Barnes was 21 and a trainee commodity broker when he broke his back on a Territorial Army assault course, which he was attempting to negotiate without a safety net. He fell 30 feet, landing on his shoulders, and was paralysed from the waist. He has used a wheelchair for the last 10 years. He now works as promotions manager for the International Spinal Research Trust (ISRT), a small, energetic charity that exists solely to sponsor research into a cure for paralysis.

"I couldn't understand why there was no way to repair the small amount of damage I had sustained - it was all down to a piece of my body the same size as my little finger," he said.

When peripheral nerves are severed or damaged, they can grow back and heal themselves - people who have their hand or arm sewn back on can regain around 70 per cent of its function. However, central nervous system cells - those in the spinal cord and brain - do not do this, and for a long time no one could see any prospect of making it happen.

However, last year there was a breakthrough in spinal injury research. Swiss scientists, funded by ISRT, managed to get central nervous system cells to regenerate in the laboratory. Their findings were reported in the science journal Nature. Using various techniques to create a more favourable environment for the cells to grow in, they persuaded severed central nervous system fibres to regenerate over quite long distances. They achieved growth rates of a millimetre a day, which means that the nerve fibres could cross even a large lesion in a human spinal cord in a few weeks. The fibres also seemed to be able to make the right connections to transmit impulses.

So far, this has happened only in the test tube equivalent of the spinal cord, but the ISRT, which has raised about pounds 1m over the past two years, is now planning a formal research strategy aimed at developing systems that will make it possible to go to clinical trials on spinal injury patients by 2000.

"We are getting close to a cure. I'm sure we are going to crack it. I have had people from all over the world phoning me up, pleading to be part of the clinical trials. Now it is not a question of if, but when," Simon Barnes said.

Curing paralysis will not be easy or quick. In a damaged spinal cord there is a telephone exchange of "wires", with no way of identifying which is which and how they should match up.

Dr Middleton remains cautiously optimistic: "Ten years ago when I talked to a patient whose spinal cord had been damaged in a major way, I would have to tell him he was paralysed for life. Nowadays, if I am talking to a lad of 18, say, I can tell him it's likely that while he is still a young man of 28 or so, we may be able to achieve some degree of restoration, hopefully providing some movement and some types of sensation."

At present, most spinal injury patients can go home after three or four months in hospital. "Sorting out the social consequences - such as finding suitable accommodation and arranging who will look after them - often takes some time. And emotional adjustment can take years. If you are only in hospital three or four months, you have hardly begun that process. That's why it is so important to be in a specialist spinal unit, with an extended support system, continuing education and a lot of attention to emotional problems," Dr Middleton said. The Royal National Orthopaedic Hospital, where his unit is based, is threatened with closure.

Most people immediately think how awful it would be not to be able to walk. But, Simon Barnes said, you can use a wheelchair or a car to get around, and it's the less visible signs of paralysis that can matter more, such as lack of bladder and bowel control, the loss of sexual feeling and responses, and the pressure sores and breakdown of skin tissue that result from lack of sensation.

"Then there is the sheer length of time it takes to do even the simplest things, like showering and dressing," he added.

"There are, of course, major emotional traumas to deal with, too. You have to rearrange your whole feelings. You are constantly thinking about the effects of it and assessing your situation.

"You don't live a single day without having to compromise - your dignity, your character, whatever," Mr Barnes said. "A friend of mine who is also paralysed said to me, 'I feel as though there's another body in me that wants to get out but can't' - and that's exactly how I feel.

"You had a perception of yourself that you liked, and all of a sudden this is completely altered by the cruel effects of paralysis. There are ways you want to express yourself, and you can't. Many people go into a spiral of depression."

Mr Barnes said that one of the things that keeps him fighting is his fierce belief that a cure will be found.

In some patients who are permanently unable to breathe without help, an electronic device, called a phrenic nerve stimulator, can be implanted in the body. This stimulates the nerves connected to the diaphragm, making the lungs move up and down. It requires the services of a trained back- up team 24 hours a day. Around 30 people in the UK live at home and rely on the use of a phrenic nerve stimulator or a ventilator, or a combination of the two, at a cost of pounds 80,000 to pounds 90,000 a year.

"I know of a woman who has a phrenic nerve stimulator and has no movement at all, yet she travels round the world with her team and leads a very full life. It is not impossible," Dr Middleton added.

"Your brain is absolutely normal, and if you have the resources and can avail yourself of modern electronic technology, such as a voice- or tongue- controlled computer, you can lead an effective and rewarding life. You need to have a lot of drive, a lot of courage and motivation."

The International Spinal Research Trust, 100 Crossbrook Street, Cheshunt, Hertfordshire EN8 8JJ.