Patients with spinal cord injuries are challenging mainstream treatments in their bid to recover use of their paralysed limbs. Quadriplegic Matthew Pierri reports.
IN THE early morning of June 17, 2007, I had a nightmare. I was strapped to a bed in a dark room, paralysed below my chest. I struggled in silence until a lady appeared. She sighed and told me to relax, asking me if I knew where I was; if I knew what had happened. I didn’t answer, I just tried to wake up.
You never forget the moment you realise you’re already awake.
People in wheelchairs used to scare me. I would always keep clear, secretly afraid that I might catch their illness. I knew nothing about spinal cord injuries or the people who suffered them. Until I had one.
A football accident left me stranded in a world I didn’t understand, or even know existed. A world I want to get out of. Even if I’m told I never will.
As far as catastrophic injuries go, there are few worse than those affecting the spinal cord. You lose more than the ability to walk; there’s also the loss of feeling, bladder and bowel control. Losing your independence is the most devastating thing. But perhaps the cruellest part of this injury is that many still consider it to be permanent. Even when it’s not.
The spinal cord is about as thick as your little finger, and runs from the base of your brain to the top of your tailbone. It’s protected by the bones of your spine – 33 vertebrae that form a protective cage around the web of nerves and tissue inside.
It is like a freeway. Your brain sends messages, in the form of electrical impulses, down the cord to the appropriate muscles. In a healthy spinal cord, there are never any traffic jams. Messages flow up and down like lightning; many occur unconsciously, such as breathing and sweating.
A broken neck does not always result in a spinal cord injury, which involves a compression of the cord. In Australia such injuries are categorised by both the level and the completeness of the injury.
The level of injury depends at which of the 33 vertebrae the damage begins. The spine is divided into five main regions: cervical (neck, C1 being closest to the head and descending to C7), thoracic (upper back, T1-T12), lumbar (lower back, L1-L5), sacral (pelvis, five fused) and coccygeal (tailbone, four fused). The higher the level of injury, the more damage. Quadriplegics (all four limbs affected) have higher-level injuries than paraplegics (just the legs affected).
The level of completeness refers to how damaged the spinal cord is. People with even the slightest sensation or movement below their level of injury are considered incomplete. The more incomplete an injury, the better the chance of recovery.
All spinal patients follow a similar treatment pattern. Often surgery is required to rectify the structural damage, with a plate or pins used to reinforce the spine. There is limited physiotherapy in hospital as the primary focus is on healing. When you are healthy enough to move, or rather to be moved, you start rehabilitation.
FOR AS long as he can remember, Jason Ellery has been building things by hand. For the 26-year-old carpenter from Melbourne his hands are his livelihood. Now they’re paralysed.
Last year, Ellery spent six months living at the Royal Talbot Rehabilitation Centre in Kew after he broke his neck in a snowboarding accident in Canada in April. It was his first overseas trip. He suffered a level C7 spinal cord injury and the outlook was initially bleak. “They said I wouldn’t be able to walk. I remember that pretty distinctly,” he grimaces. “Well, they said I had minimal chance,” he corrects himself.
Walking is now Ellery’s goal. He has been able to move his toes on occasion and has seen his quadriceps flicker. It’s not much, but it’s a start. A start he was never expected to have. He still can’t move his fingers properly, but they are improving each day.
Ellery knows the rehabilitation he received at the Royal Talbot was beneficial, but he thinks it was short-sighted. “There’s good aspects; they do teach you things you need to know when you first get [there],” he says. These include vital skills, such as how to use a wheelchair safely and how to transfer from it to other objects.
But in terms of promoting recovery, Ellery says he was frustrated. “They teach you how to live in your chair basically, how to get by … they don’t really teach you to try and get out of the chair,” he says.
This perception frustrates not only patients such as Ellery, but also Mel Gregory, the senior physiotherapist for the spinal rehabilitation team at the Royal Talbot.
Gregory says the goal of rehabilitation is “to help people develop the skills they need to reintegrate into … their life, into their social and work roles, and get on with living”. Helping patients to understand their injury and adapt to life in a wheelchair is a necessity, she says.
Gregory guarantees the spinal unit does seek to maximise the available function of patients wherever possible, “but unfortunately for a lot of people the damage is permanent to their cord, so in that situation the focus has to be on learning new skills and adapting to the situation rather than recovering”.
Having worked in the field for more than 10 years, Gregory understands how patients can get the perception that physiotherapists “aren’t that interested in recovery”.
She says that although each spinal cord injury is unique, there are patterns of injury and recovery that give physiotherapists a good sense of a patient’s likely outcome. Since patients and their families are typically experiencing such an injury for the first time, they have no references to base their expectations on, and can struggle to accept negative outlooks.
Gregory sees the difficulty of her job as having to “negotiate being consistent and realistic without sounding like we’re dismissive or not interested in people recovering”.
On average, more than 300 Australians suffer a traumatic spinal cord injury each year, with roughly 80 of them occurring in Victoria, Tasmania and south-western New South Wales. If you suffer a spinal cord injury in any of these areas, you will most likely end up at the Austin Hospital and then the Royal Talbot.
Gregory says young men aged 18 to 25 who are injured in high velocity traumas, usually on the roads, form the biggest group of spinal cord injury patients. Increasingly, however, they are being joined by older men aged 50 to 65 who are being injured during serious falls.
Then there are freak accidents. When I was in rehab there was a patient who had fallen while working on his roof. His power drill fell too and landed bit-first in his spine. Another patient had been stabbed in the back.
I broke my neck playing schoolboy AFL in June 2007. Running head over the ball, I copped a stray hip-and-shoulder to the head. Snap, crackle, pop; welcome to hell.
After my accident, I spent several days in intensive care and three weeks in an acute spinal ward at the Austin, followed by five months in rehabilitation at the Royal Talbot. My C7 vertebra crushed part of my spinal cord.
Technically I am a complete quadriplegic, but the fact I am typing this story would mean that diagnosis is technically wrong. Recovery may be unlikely, but I won’t accept it’s impossible. The reality is that no one knows. Even when they say “no”.
But if you don’t try, you’ve got no chance.
Luckily, where the Australian public health system fails, private programs are stepping in. Eric Harness is the co-founder of Project Walk, a not-for-profit spinal cord injury rehabilitation centre in California. Project Walk specialises in “activity-based recovery” – basically intensive exercise two to three hours a day, four to five days a week.
Its philosophy is based on “getting people out of their wheelchair to exercise, reintroducing gravitational loading [to the body], and focusing solely below the level of injury on recovery of function,” Harness says.
Moving the affected limbs seeks to reconnect the brain to that movement, effectively retraining and reorganising the nerves of the spinal cord. Despite 10-15 per cent of Project Walk clients having walked out after wheeling in, Harness is quick to make clear it is “not a cure for spinal cord injury”.
Harness and Ted Dardzinski, the physical trainer who developed the original treatment, started Project Walk in a warehouse in 1999. Thirteen years and more than 1000 clients later, Project Walk attracts people in wheelchairs from around the world, although Dardzinski has since retired.
Thirty-year-old snowboarder Josh Wood, from Port Melbourne, is among more than 30 Australians who have travelled to the centre in Carlsbad, southern California. After crushing his C6, C7 and T1 vertebrae in a snowboarding accident at Mount Buller in June 2000, Wood was left with less than 5 per cent function of his spinal cord. He was told he would never walk again. Three-and-a-half months later he did.
Despite walking out of the Royal Talbot, Wood is no fan of the system. “I hated it. Not one good word to say about it. Therapy-wise it was all to build you to live in a wheelchair … [it’s a] demotivating place.” That Wood’s recollections echo the frustrations of Jason Ellery, more than 12 years later, is telling.
While Wood acknowledges that walking may not be possible for everyone, his concern is that doctors “play God too easily”. “You take away someone’s hope, they’ve got no chance … it’s not just about walking, it’s about anything. It’s about getting your own independence. That’s the biggest thing,” he says.
Late last year Wood spent six weeks at Project Walk. His goal was to lose his limp and walking stick. Back in Australia, he still has both limp and stick, but he did make progress.
“I ran on my last day at Project Walk. It was the best moment in probably my life, and it was one of the toughest because I had to go home that day.”
Wood says the greatest aspect of Project Walk is the hope it offers. “It’s amazing how much a positive vibe can change someone’s life,” he says.
However, the medical director of the Victorian Spinal Cord Service, Dr Doug Brown, is not convinced that such programs are effective. “People want to believe that the outcome is dependent upon just how hard you try. The harder you try the better it will be. It’s not based on reality … you have to have something naturally there that you’re working with.”
After three decades of treating patients with spinal cord injuries, Brown believes such programs based on “the hope, the wish, the want [of recovery], aren’t necessarily very helpful”. And they are expensive.
Project Walk charges about $100 per hour of therapy, which is on a par with private therapy in Australia. Brown is sceptical because “there’s no real evidence for them being effective at all, of any good scientific quality, and if you ask them they don’t have any statistics to show that people have done better than they [otherwise] would have”.
Harness disagrees, arguing “there’s lots of scientific basis behind what we’re doing”. In 2008 a Project Walk team published a research paper on the effects of intense exercise on chronic spinal cord injury in Spinal Cord, the official peer-reviewed journal of the International Spinal Cord Society. He also points to the “huge research base, of human and rat research, that shows that if you increase activity after injury, you will see recovery in function”.
Yet perhaps the greatest endorsement for activity-based recovery is the fact that countless hospitals and rehabilitation centres worldwide are setting up programs “basically trying to emulate [Project Walk]”, he says.
In the US, Harness proudly points to the Craig Hospital in Denver, Colorado, and the Shepherd Centre in Atlanta, Georgia, both leading spinal cord injury rehabilitation hospitals that now incorporate activity-based recovery programs.
Four years ago, Spinal Cord Injuries Australia started a Project Walk offshoot in Brisbane, called Walk On. Centres in Sydney and Perth followed soon after, and in January this year, Walk On Melbourne began operating out of Whitten Oval, Footscray West.
As for giving people false hope, Harness believes “hospitals give people false pessimism”.
“Basically they’re telling people that they’re not going to recover, when they might be able to,” he says. Many patients thus never try to get better, but “if you don’t try at all, then you never know what could’ve happened”.
Trying is expensive, however, and the initial financial toll of a spinal cord injury can be devastating. The cost of a wheelchair, home modifications, daily medical supplies and perhaps a carer rarely leaves much for further rehabilitation. Government funding is pitiful, but the announcement that a National Disability Insurance Scheme will begin in up to four locations across Australia in July next year has brought renewed hope.
Senator Jan McLucas, the parliamentary secretary for disabilities and carers, admits “in Australia, people with disabilities [currently] do not get the support that they should”. While full details of the scheme remain undetermined, the potential of the new insurance-based scheme to cover the costs of outpatient rehabilitation programs is exciting.
This practice has started to appear in the US and Canada, where some insurance companies are reimbursing patients using “alternative therapy” programs such as Project Walk.
Ultimately the reforms are about moving “away from funding a system, to funding people”, which is good news for people like me.
I know I’ll walk again, I just don’t know when. When that day comes though, I plan to either kick my wheelchair off a cliff, or donate it so it can be put to good use.
Hopefully, as a relic in a museum.