Back to the future

Spinal injuries can turn active people's lives upside down overnight. But new research, together with specialised support, is giving them hope again, reports Maureen Isaacson

One year after Julie Hill's spine was severed in 1990 in a car accident caused by a burst tyre, she rode the waves at Heron Lake, Middlesex in a "sit-spritz", a modified waterski.

This was no small feat for Hill, who was 28 at the time of the accident, and the mother of two children aged six and four. An outgoing and super-confident rep for a drinks company, she now found herself paralysed from the waist down. "I was a shell of myself and I thought my life had come to an end," she says. It took a year of "self-pity" and despair before the Back-Up trust succeeded in persuading her to take to the water. She recalls that it was exhilarating. Once lifted out of her wheelchair, her legs strapped into the adapted water-ski, she propelled herself with her arms.

Although doctors pronounced that she would be unable to walk, Hill is now able to stand up and take faltering steps using a walker. She is also able to cycle. Her leg muscles receive impulses from an "implant", a microchip that delivers the messages her nervous system is no longer able to receive from her brain. The genesis of Hill's remarkable progress was first revealed to BBC audiences in 1994, four years after her accident, when she agreed to be a "bionic guinea pig" for researchers at University College, London. Over time, researchers were able to coax Hill's body into a posture that would allow her to mimic walking movements.

Hill is now the chairperson of Back-Up, one of the five small charities that joined forces at the launch last week of Spinal Injuries Together (SIT). Lending her support at the launch was Lady Tebbit, who was paralysed in the IRA bomb attack on the Grand Hotel in Brighton in 1984. The reality of being confined to a wheelchair, Lady Tebbit said, is almost impossible to imagine "until one is forced by life to do so".

Spinal injuries can be devastating, reducing active lives to severely restricted ones at a stroke. Spinal-cord injury can affect sensation, the body's control systems (including bladder and bowel control), sexual function and breathing. SIT brings together charities involved in advancing medical research with those, like Back-Up, who are concerned with improving the quality of lives and helping people cope with the profound changes disability brings.

Like so many young people who are slowly disabused of the notion that spinal-cord injury is the end of the road, Hill now drives an adapted car, does the shopping for her husband and children and steers others in her position to psychological recovery. No longer sensitive to the lack of empathy and compassion she once experienced from able-bodied people incapable of grasping the reality of wheelchair life, Hill insists that the Back-Up trust "can pick people up and lead them to a fuller life".

Although Hill has not yet taken the leap, another opportunity offered by the trust to paraplegics and tetraplegics is a 13,000ft jump from an aeroplane. However, with the Back-Up trust she has also skied on snow, abseiled, sailed and paraglided. Hill's focus is clear. It is on ability rather than disability. In this she resembles Paula Craig, a detective sergeant in the intelligence unit attached to murder squads who has for two years been confined to her wheelchair, and has participated in two London marathons since her accident and five triathlons, which involve swimming, hand cycling and a "run section" (competitors propel themselves in a race chair).

Similarly, scientists are focusing on possible advances - although a miracle cure for nervous-system regeneration and repair is still a long way off. The harsh facts persist: neurons in the damaged central nervous system are incapable of regeneration. Yet research has shown that they retain the capacity to do so if provided with "favourable" conditions. If research continues at its current rate, partial repair of the damaged spinal cord could be feasible in the not-so-distant future.

John Cavanagh, head of research at Spinal Research, another of SIT's member charities says that the aim is to develop treatments that would enable patients with high-level injuries to regain movement in their arms and hands and to breathe unaided. However, Cavanagh will not predict a date for this in light of the actor Christopher Reeve's sadly inaccurate predictions about his own ability to walk. Reeve, who was injured in a riding accident in 1995, brought a much-needed "human face" to spinal-cord injury. He also emphasised the urgent need for international neuroscientists to find ways to repair the damaged central nervous system.

Earlier this month in the US, Reeve announced the Christopher Reeve Paralysis Act of 2003. If enacted, this legislation, the first of its kind, will fund research, rehabilitation and quality-of-life programmes for persons living with paralysis, their carers and families. This is the culmination of years of work by several US and Australian states and Canadian provinces towards directing local taxes into neurotrauma research, bringing millions of dollars to the field. Although Maria Eagle, the UK's Minister for Disabled People, lent an encouraging presence to the launch of SIT, the profile of spinal-cord injury in the UK has a distance to travel in order to replicate the US example.

In addition to the devastating psychological damage caused by traumatic spinal-cord injury, it catalyses a series of events within the spinal cord, which are now well tabled. First comes the formation of scar tissue, which inhibits cell growth, then the fatty myelin coating surrounding functional nerves is destroyed. This is followed by the secondary degeneration of the neurons that were not damaged in the initial injury. If the damage is caught at an early stage, it is possible in some cases to minimise the injury by reducing swelling and the risk of further damage with the aid of new-generation anti-inflammatory drugs. Care has also improved in recent years and further complications of this type of injury, such as pressure sores, can be dealt with.

A major breakthrough was the discovery that an enzyme called chondroitinase ABC is able to reduce the growth-inhibitory effects of scar tissue. When introduced to the damaged spinal cord, this enzyme allows nerve fibres to grow across the injured region and restore some voluntary movement and sensation. This knowledge comes to us humans courtesy of our rodent friends. Rats are anaesthetised then injured in a discreet area of the nervous system. An introduction of chondroitinase ABC into the spinal cord allows the neurons in the rodent's brain to regenerate and grow again across the injured region. Researchers plan to transfer the results of successful laboratory experiments to paralysed volunteers in the clinic as soon as it is considered safe to do so.

A route to another potential breakthrough in spinal-cord healing is the transplantation of the continually regenerating cells of the olfactory system into the non-regenerative cells of the nervous system. These cells provide a "bridge" for regrowing nerve fibres to cross the lesion and connect with undamaged neurons on the other side. Scientists have thus far achieved four centimetres of spinal-cord regeneration. Duplicate this laboratory success in human spinal injury and the results promise to be startling. It could restore, for instance, the use of fingers for a tetraplegic, or the return of bladder control.

The hope is thatSIT, which also incorporates the Spinal Injuries Association, Spinal Injuries Scotland and Aspire , will increase awareness of the need for spinal injury care.

Paula Craig, whose spine was severed in a road accident two years ago when she was training for a triathlon, was swimming seven weeks after the injury. Having lost sensation in her legs, she had to learn how to balance again. Six months later, she decided to train for the London Marathon. "Of course I would think about how unfair it was. Then I realised that there was no point dwelling on it," she says.

Craig wants to see more integrated swimming pools and gyms for people with spinal injuries. "I was fortunate enough to be moved soon after my accident to the Royal National Orthopaedic Hospital in Stanmore, Middlesex, which has facilities specifically developed for people with spinal-cord injuries. It has the only swimming pool in the country with a ramp for wheelchairs to go down into the water."

Craig, like Hill, drives an adapted car and her fierce independence forces the issue of her disability to the foreground. "If you are in a wheelchair, people tend to ignore you and speak instead to the able-bodied person accompanying you. Because I am alone so much, this does not happen."

Paula Craig's, Julie Hill's and Lady Tebbit's storiesdraw attention to the fact that their life after spinal-cord injury continues apace.