I look at pretty much the same data and see a tremendous way to go yet. Vast problems in stroke needing to be solved. But if you listen to the 'happy talk' from our stroke associations everything is going swimmingly. Prevention and F.A.S.T. are working. Of course only 10% get to almost full recovery. That is complete failure by any measure. But that is a minor quibbling detail to the 10 million yearly stroke survivors.
I (Robert McCrum, now an Observer journalist,) survived a ‘brain attack’ 20 years ago. Now a revolution in care is under way
For about 20 years, my sleep was dreamless. I’m inclined to attribute this to the things that happened inside my head in 1995, but I can’t be certain. The brain remains a mystery. It’s certainly the scene of more crimes against wellbeing than any other part of the body.Everyone knows about heart attacks, but a brain attack, or stroke, can wreak as much havoc. The heart stops in only one way, but the brain has many ways to remind us of human frailty. I know this, because I had one kind of brain attack 20 years ago. Since then, I have grappled every day with the aftermath of that assault on my central nervous system. Recently, as part of a rearguard action against some tenacious pockets of resistance, I went back to the National Hospital for Neurology and Neurosurgery in London to engage with what neurologists describe, in quasi-military jargon, as my “deficits”. In plain English, the long-term disabilities attributable to that brain attack.
Among the ways a brain can fail – tumour, aneurysm, haemorrhage, Alzheimer’s, Parkinson’s and so on – stroke is one of the most common. It’s a soft, inoffensive word – you stroke a baby or a lover – but a lethal affliction.
In Britain, every year, 150,000 people of all ages will suffer what the medical textbooks call “a severe insult to the brain”. Euphemisms and “stroke” seem to go hand in hand. Increasingly, in Britain and North America, the term “stroke” is slowly being replaced by “brain attack” in the hope that new language will sponsor a new attitude towards the illness, and help modify our behaviour, making us less complacent and perhaps improving survival rates. Whatever the terminology, it’s a chilling statistic that this kind of “brain attack” will occur somewhere in the UK every three and a half minutes. Of these unfortunate souls, one third will die; one third will be seriously disabled; and 50,000, the lucky third, will go on to lead fairly normal lives.
But what does it mean to have a stroke and what are the routes to recovery? And what does a stroke tell us about the way our brains work? In the last 20 years, in a dynamic interplay between research and ill-health, developments in our understanding of the brain have transformed stroke treatment.
In the process, neurology has become the coolest frontline posting in modern medicine, the place where the puzzle of mind and body meets the latest technology. But first, before we come to the treatment, there’s the perennial fascination of the thing that the OED describes as the “organ of soft nervous tissue contained in the skull of vertebrates”. You would have to be made of marble not to become intrigued by the human brain.
According to an old medical joke, the brain is the only organ in the body to have named itself. It’s a fact: our brains are us. Each one weighs about 1.4kg (3lb). You could hold it in the palm of your hand. But it’s more than just an organ. It’s you, in every sense of the word: your intelligence, demeanour, personality, and consciousness. Oscar Wilde wrote: “It is in the brain that everything takes place. It is in the brain that the poppy is red, that the apple is odorous, that the skylark sings.”
In short, it’s your command centre, your HQ; and one thing is certain. A brain attack is like having an earthquake at the centre of your fragile self. When the brain fails, for whatever reason, the human animal will find itself in extremis. Insults to the brain usually come out of the blue. I was 42 when, overnight, I experienced a right-hemisphere haemorrhagic infarct. Today, memories of my weeks on the front line of ill-health – the aqueous blue blink-blink-blink of the ambulance, the muffled sounds of the intensive care unit and the cement-mixer roar of the MRI chamber – have faded to the texture of an old nightmare. I will, however, never cease to be a veteran of that conflict. Scan my cerebral cortex and you will see a fuzzy grey scar, the size of a thumbnail, indicating where the wound in my brain used to be. This “cerebral lesion” has now become part of that infinitely complex organ in which the neurologists of the National Hospital specialise. Professor Andrew Lees, one of Britain’s leading Parkinson’s specialists, says that below the surface of the brain there are the “100bn tiny nerve cells that make up the grey matter”. Another renowned brain surgeon, Henry Marsh, from St George’s Hospital, London, comes to the brain from a different perspective.
In Do No Harm, an award-winning account of his work, Marsh writes that, as he begins to operate, “mind” and “brain” intersect. He says the idea that his instruments are “moving through thought itself, through emotion and reason, and that memories, dreams and reflections should consist of jelly, is simply too strange to understand. All I can see in front of me is matter.”
The neurons of this “grey matter”, according to Lees, “form part of a kaleidoscopic internet. On its own, a nerve cell is no more effective than an isolated termite worker, but through a sophisticated lattice of nerve stations it creates unique trails that together produce a cosmic highway. No single nerve cell is separated from any other by more than six neurons.” Brains, however, nurture an awful lot of neurons. In an ordinary brain, for instance, there are about 20bn neurons and each one makes on average 10,000 connections. The extraordinary computational power of a healthy brain holds the key to our lives as human beings.
To put this another way, if you could somehow connect all the laptop computers of London or New York, you would only just begin to equal the capacity of a single brain. This analogy comes from Dr Richard Frackowiak, formerly of the Wellcome Institute, which faces the National Hospital from the opposite side of Queen Square. Frackowiak also describes the brain as “an organ in a box (the skull) with a hole at the bottom where the brain stem is situated”. Such an oversimplification is a provocative response to a profound mystery. The working of the brain is so complex that even the experts still resort to metaphor to convey its functions, a response that’s as old as Aristotle. For the Greeks, the brain’s function was to cool the blood. For Descartes, in the 17th century, the brain was comparable to the latest, dazzling artistic technology, the hydrostatic fountains of Versailles.
After the industrial revolution, doctors revised this metaphor still further, establishing an orthodoxy that persisted to the end of the last century. To the Victorians, therefore, cerebral activity was analagous to the latest technology. The pathways of the brain were seen as fixed and rigid, like a railway network, and later as a telephone exchange. We, in the computer age, have found other ways to describe the working of the brain, derived from computer science, the phenomenon known as “plasticity”.
Neuroplasticity occurs on a variety of levels and has been shown to involve dramatic cerebral responses to brain injury, especially in the field of “cortical remapping”. In neurology today, the role of neuroplasticity is widely recognised in healthy development, learning, memory and in recovery from brain damage.
Lees continues: “Plasticity recognises some adaptability in nerve cells and the circuits of the brain. The younger you are, the more adaptable your brain is. We know this from ‘brain mapping’. In a damaged brain you find some areas taking on the functions of other areas. Compare the liver, for instance. You can lose almost all your liver and it will regenerate. In the brain, the nerve cells are not the same. It does not regenerate in the same way. But there’s now more understanding of the ways the brain can respond to injury.”
To explore “plasticity” for myself, I enrolled in an experimental NHS programme in Queen Square. Perhaps it was inevitable that I should make my way back to the National Hospital where I had first been treated in 1995. There, as part of my coming to terms with what had happened to me, I wrote a kind of war memoir, My Year Off: Rediscovering Life After A Stroke, and have been associated with the hospital ever since.
Still, it was strange and unsettling to return to the world of neuro-rehabilitation. This used to be a depressing and primitive environment. However, a new approach to “brain attack”, combined with new attitudes to the doctor-patient contract, has transformed the relationship between neurologists and stroke survivors. Once, it was dour and fatalistic, today it’s dynamic. Where doctors used to speak about a patient’s likely recovery from brain injury with the greatest caution, and in the most guarded terms, now there’s an air of optimism.
This comes from a renewed sense of wonder at the working of the brain. Lees says that this last great mystery of the human body “is why so many young people are getting interested in neurology. Neuroscience has almost replaced philosophy and become virtually a surrogate name for philosophy. Young people are going into ‘neuro-science’ to understand the mind.” There are still acres of uncharted cerebral terrain to explore here, from the research labs to the patient, backed by new resources of time and money. At a pioneering neurological hospital like the National, this new mood is symbolised by refurbished wards, shiny new equipment and a reinvigorated attitude to physiotherapy.
Where stroke patients used to be wheeled down gloomy linoleum corridors into dark Victorian wards equipped with little more than rows of adjustable exercise beds, now there’s an air of hope and determination From the pine floors, and coffee dispensers, to the cheerful decor, television, and shelves overflowing with paperbacks, magazines, and picture books, the atmosphere is upbeat and positive.
After the acute phase, there’s the long-haul business of physiotherapy, that heart-sinking word. Here, too, the techniques of neuro-rehab have become more brain-aware. Lees says: “We now have much better ways of rehabilitating patients with [physical] deficits. If you survive the first few dangerous weeks, it then becomes a question of time and of exactly how much recovery you eventually make.”
This is a question to which Dr Richard Greenwood, a Queen Square colleague of Lees, has devoted much of his life. For Greenwood, his work in neurophysical rehab is now wholly underpinned by plasticity. “The term began to enter the profession in 1980s, and became popularised through the 1990s,” says Greenwood, widely acknowledged to be one of Britain’s rehab experts. “It’s important to remember that plasticity happens to everyone, whether or not they have a brain injury.” The principle of plasticity is that it underlies relearning. So, if you perform a task (for instance, picking up a fork) that attracts cerebral attention, it will generate “plastic” changes in the part of the brain that no longer fulfils that function. But the task has to be part of our consciousness. According to Greenwood: “You need an ‘enriched environment’ to generate plasticity. It’s not just a matter of 100 hours. The patient has to attend to what he or she is learning. You are teaching the brain – not a muscle.”
Enter the Silver Spring monkeys. These 17 macaques from the Philippines, which were kept in the Institute of Behavioral Research in Silver Spring, in the US state of Maryland, from 1981 until 1991, became famous lab animals as a result of a battle between animal researchers, animal advocates, politicians and the courts. Among scientists, these monkeys are known for their use in experiments into the ability of the adult primate brain to reorganise itself. In simple terms, the researchers severed the tendons in the monkeys’ right arms, achieving the kind of impairment that mimics a stroke, disabling their right side. Conventionally, the adult primate’s response to this disability is to deploy the unaffected, fully-functioning left side (arm, hand, fingers etc).
At Silver Spring, however, the monkeys’ “good” left side was inhibited by the researchers. So now – to feed and function – the monkeys had somehow to recruit mobility in their disabled right side. In theory, this should have been impossible. What the Silver Spring researchers discovered, however, was that, after a while, the monkeys’ brains found new “pathways”. Miraculously, their right arms began to work. At Silver Spring, they called this “plasticity”, a phenomenon described by Greenwood as “underpinned by structural changes at a microscopic level in the brain”. He says: “The frustrating thing is that we can demonstrate and explore this in animals, but we can’t do it in man.” This discovery quickly became one of the most exciting medical breakthroughs of the 20th century.
In neuro-rehab, Greenwood believes that some of the most useful advances in physiotherapy have been inspired by the lessons of plasticity. “When I started, people compared physiotherapy to water divining or herbal remedies. In the last generation, there’s been a complete change. What we do in neuro-rehab is no longer part of the wacky fringe.” The degree to which physiotherapy has become mainstream is demonstrated by the case of broadcaster Andrew Marr, who suffered a stroke in January 2013. Marr has waged a remarkable public battle with his disability, but admits to me that “I’ve now gradually come to terms with the fact that I’ll never be 100%”. A lifelong fitness fanatic, Marr has treated his rehab in very practical terms, undergoing long bouts of extreme physio in the pioneering Arni (Action for Rehabilitation from Neurological Injury) programme.
This speaks directly to one issue that interests Richard Greenwood. “Can you,” he asks, “take thought to get better?” To which he replies: “People who can’t generate effort (because of brain injury) have a serious problem in achieving physiotherapeutic goals. MRI imaging has demonstrated that imagining a task does light up appropriate parts of the brain.” Now, says Greenwood, as the importance of plasticity becomes fully recognised, physiotherapy is being infiltrated by robotics: “Robots can assist physiotherapists and provide more hours of retraining. How we apply robotics in rehab is just beginning to be explored. This cannot be a mindless programme. Having a robot is not just a question of wiggling a lever. There need to be individualised programmes. There may even be a role for robots in gyms. Currently, the problem for the stroke patient is that rehab ends after two or three months.” Greenwood says that the potential of robots underlines the need for a long-term strategy. “There’s been a huge amount of work done in the UK on stroke,” he says. “But people still get less rehab than they need. Patients often get put out to grass, through the association of stroke with old age. Some of the treatment must be psychological. Patients get depressed. The patient’s family must be involved as part of the recovery team.”
Simultaneously, the breakthroughs of plasticity have also inspired an upgrading of neurological language. “Thirty years ago,” Greenwood says, “you could not mention the brain. One used to say ‘head injury’. It was almost pornographic to talk about ‘brains’. When you said ‘stroke’, most people didn’t have a clue what you were talking about. Now everything has changed.” Greenwood agrees with me that, compared with cardiac and cancer treatment, stroke/“brain attack” has suffered from an image problem. “People are more open about stroke now,” he says. “Look at Andrew Marr. In the past, people did not want to confront the consequences of brain damage.” This is partly because, compared with, say, a broken leg, the consequences are difficult to comprehend and grapple with.
Greenwood again: “One’s job as a rehab doctor is to explain what things are, and are not, possible. The patient has to be educated in a timescale of recovery. A lifetime is where you start from. People have to learn to adjust their expectations. Predictions are hard, if not impossible. Most models are ineffective. If one says ‘you will be able to walk 50 yards in three years’ time’, one will almost certainly be wrong. But it can become a shared exploration, a quest for achievable goals.” Marr agrees. “I have absolutely no doubt that the brain can rewire itself with enough training,” he says. “My left hand was useless, now it can grip. Things are coming back.” Does he believe you can think yourself into better health? “I don’t know.”
He reckons his character has probably helped his recovery. “I was always a stubborn bugger. I think that’s why my improvement has been faster than it might otherwise have been.” Marr finds the science of the brain enthralling. “I accept that the brain is totally dynamic. Plasticity is philosophically and medically fascinating.” Marr is excited by the prospect of using stem cells to rebuild the brain. Would he become a guinea-pig? “I won’t rule it out. I mean, why not? It’s like being in England in the 1650s. We know that America is there and we’ve begun to make a few tiny incursions. But there’s still an entire continent to discover and we haven’t really begun to approach it.”
If we accept Marr’s analogy, then what an MRI mainly does is to give you a black-and-white snapshot – as it were, from outer space – which tells us very little about the dynamic reality of the brain. For that, you have to come down to earth and return to the frailty of the human frame. That’s why, at the end of last year, I went back to the National Hospital, joining Dr Nick Ward’s experimental neuro-rehabilitation unit, a programme directly inspired by the discovery of plasticity in the brain. In simple terms, Ward and his team of expert physiotherapists – Kate Kelly, Fran Brander, Caroline O’Neill and Jo Briggs – choose patients with upper- or lower-body deficits – difficulties with arm and hand or leg and foot movements – and subject them to a programme of intensive physiotherapy. This amounts to sequences of repetitive exercise often involving the finely calibrated movement of a shoulder blade, wrist, or thigh. The aim is to stimulate new pathways in the brain to recover lost movement.
The contrast between the hi-tech world of MRI scans and neurosurgery and the mundane reality of a neuro-rehab ward is stark. When the brain is damaged, (through accident, stroke or geriatric deterioration), there’s a corresponding breakdown in physical competence: paralysed arms; legs that don’t move; words that can’t be found; inarticulate tongues; frozen hand gestures; steps that fail. This is the gap that Ward and his team are trying to bridge. Much of what Briggs and O’Neill will do, at first, is traditional physio- and occupational-therapy. It’s often crushingly boring and painfully mundane: repetitive exercises designed to fire up some lost muscle activity.
After my introduction to the work of the unit, we moved into robotics. One of my long-term “deficits” is my inability to make much use of my left side (arm, hand, leg, foot). I have learned to compensate for this by recruiting my right side. O’Neill was having none of it. Persuasively firm, she set new goals. Typing with both hands? I haven’t done this for 20 years, but she insisted it was possible and demonstrated at once that I probably had more flexibility in my left arm than I realised. After the first week, video coverage of my “typing” had begun to show small, but significant, improvements. From there, it was a short step to the unit’s Armeo Spring robot, a state-of-the-art Swiss device designed to isolate specific arm and hand movements and subject them to intensive therapy.
In the 20 years since I had my “brain attack”, stroke treatment in the UK has undergone a revolution. It’s now linked to the best and brightest technology in the world, the most advanced machines medical science can devise. Ever so slowly, the brain is yielding its secrets. We now know more than ever about how and where, in the cortex, the attack occurred. In a minority of those cases that survive, it’s possible to treat the stroke with drugs and diminish its impact.
Beyond that, the mysterious miracle of the brain continues to frustrate efforts to elucidate its hidden pathways. The neurologist remains like a person shining a pocket flashlight into a darkened ballroom, hoping to pick out a single precious stone. Progress is painfully slow with (at best) a series of small victories. Nevertheless, the challenge remains. Individual consciousness inspires the determination to tackle a unique conundrum – the intersection of mind and brain. At this mysterious cross- roads, here’s one inexplicable bit of data. In the weeks since my visit to the National, my sleep has become animated with the most vivid dreams. I cannot begin to determine if this is a strange by-blow of “plasticity”, but it speaks to the ongoing quest for answers to the workings of the cerebral cortex. Who knows when or how that will end?
Waiting one day in the hospital lift, I glimpsed my reflection trapped between two mirrors. It seemed, at that moment, an apt summary of my predicament. As stroke patients, it sometimes feels as if we stand between advanced neurological research, on the one hand, and mundane consciousness on the other, with the image of a cerebral cure regressing infinitely into the future.
Robert McCrum’s two-part programme, Brain Attack, will be broadcast on BBC Radio 4 at 11am on 2 and 9 March
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