5

Hope for People Suffering from Epilepsy or Stroke

our brain’s enormous powers of self-healing

Peer Augustinski was a popular television personality in Germany, best loved for his role alongside 1970s sex symbol Ingrid Steeger in the cult sketch-comedy show Klimbim. He was also famous as the actor who spoke the words of Robin Williams in German-dubbed versions of his films. Few Germans are aware, however, that he was also a multitalented musician, proficient on six instruments, including the cello, piano, and drums. But the events of 8 November 2005 put an end to his musical and theatrical career. That was the day Augustinski suffered a stroke.

An artery ruptured in the right hemisphere of his brain. Blood flooded out, destroying a large number of brain cells. Sixty-six years old at the time, the entertainer was now paralysed on his left side, meaning he was no longer able to establish a functioning connection between planning and executing an action on the left side of his body. Although he was still able to imagine clenching his left fist, for example, his muscles would not obey the corresponding order from his brain because they no longer received those orders via his nerves.

Neighbourhood help inside the skull

A third of stroke patients recover alone within a year, which is evidence enough of the enormous capacity of the brain to heal itself. Its usual ‘strategy’ is for the nerve cells in the immediate vicinity of those destroyed by the stroke to take over their function. However, they only do so if they are forced, so to speak.

Thus, if a stroke leaves someone only able to limp, the best thing is for the person to try to walk despite the reduced functionality, because that forces the cell structures surrounding the damaged area to jump into the breach for their destroyed colleagues. For activities such as walking, this often happens automatically because people will try to stand and walk despite their limp and other limitations and the difficulties these cause. At first, their attempts will be stilted and hesitant, but with time their walking becomes increasingly confident and wide-ranging until they may eventually almost regain the level of mobility they enjoyed before their stroke.

However, this is often not the case when patients’ hands and arms are affected. If the left side no longer works, patients still have their right hand and arm. This results in patients leaving their paralysed limb dangling uselessly while they concentrate on using their functional side. This means the cells surrounding the damaged area do not receive any training stimuli and the left hand remains permanently paralysed.

This effect can be countered if, soon after their stroke, patients are prevented from using their healthy hand. For example, by tying it up. Patients are then usually able to use their originally paralysed hand in daily life again within a month. This is contingent, however, on the training beginning while the extremity is still receiving sufficient residual signals from the brain. If that is no longer the case, such training is impossible, and, without training, there can be no change — and that was precisely what happened in the case of Peer Augustinski.

Neurone gaps are not forever

When the actor came to us in 2007 — he had heard of our research with stroke patients from his doctor — his left hand was completely paralysed, and he had difficulty walking. His strength of will, by contrast, had not suffered. On the contrary, he was highly motivated and ready to take part in any experiments.

We trained him to use our magnetoencephalography machine, the MEG. This is a helium-cooled tank that sits on the subject’s head like an old-fashioned hood-hairdryer. More than 200 sensors on the inside of the MEG helmet pick up the magnetic signals emitted by the brain as it works. A superconducting circuit transforms these signals into electric impulses that can be visualised on a computer screen.

Augustinski sat beneath this encephalographic hairdryer. We were most interested in the signals from the part of his brain that had controlled his left hand before his stroke, so we asked him to move the fingers of that hand. However, we did not want him to just think about moving it, but rather to really send out a command to move it. Just as he had done so many times every day before his stroke. We wanted him to avoid thinking about the gap between the command centre in his brain and his left hand, which we provisionally bridged.

What that means is that we received the command signals from his brain via the MEG, we converted them into electronic signals, and if he activated the correct brain areas, we moved plastic clips that we had fastened to the fingers of his left hand. Augustinski had jokingly dubbed these clips ‘thumbscrews’, but, in fact, they were precisely the opposite: they made his fingers move just as they would if his brain had decided to move them — albeit with a time delay. So when he thought, ‘I’ll move my left index finger’, his finger would be moved. Not as quickly as was the case before his stroke, but enough to convince his brain that the command it was sending out was having an effect. And when the brain sees that it can affect something, it eagerly deploys its enormous potential for learning.

Augustinski attended 20 training sessions with us. He was far from being cured, but, after this training, he was able to move the fingers of his left hand to some extent without the aid of the machine. The exact processes going on in his brain remained a mystery. We examined it with MRI and discovered a tract of nerve fibres that passed through the destroyed area of his brain. We were unable to ascertain whether it was a new development or had been there before and simply become thicker and therefore visible due to the training. It was also possible that it was completely unconnected to Augustinski’s progress towards recovery. But it seemed as though his brain had managed to build a kind of neurological bypass.

Whatever the truth of it, his brain had learned that it could still achieve an effect, creating the necessary conditions for further training, which Augustinski completed with characteristic discipline and the aid of our highly committed physiotherapist, Doris Brötz. He regained the ability to use his left hand when driving a car, climbing stairs, or lifting a glass of water to his mouth. He also returned to the stage in September 2011, in the hospital-based farce It Runs in the Family.

Training, not fading, aiming not flooding — what really benefits the brain

Strokes are among the great challenges faced by medicine. Some 15 million people are afflicted by them every year, and they are the second-most common cause of disability (after dementia). Despite this, progress in therapy for stroke victims has been limited because too much focus has been placed on pharmaceutical treatment.

Brain–machine interface (BMI) with magnetoencephalography device (MEG) for chronic stroke injuries

The paralysed hand of the patient is attached to a neuroprosthetic (orthotic). When he thinks of moving his hand and suppresses the MEG’s so-called sensorimotor rhythm in the brain, the orthotic device opens or closes his fist. This re-establishes the association in the brain between the command signal and the actual movement (the effect of the command signal). An electroencephalogram (EEG) BMI works in the same way, but with a less precise resolution. It is, however, more easily portable and cheaper.

In recent times, many victims have been treated with antidepressants, not only with the aim of helping them to come to terms better with their sudden disability, but also because such drugs are thought to improve the brain’s capacity for recovery. However, research-based evidence for this is inconsistent. For instance, antidepressants often caused rather alarming side effects in studies with stroke patients. These included unsteadiness, disorientation, listlessness, and trembling, all of which sound more like an increase than a decrease in the symptoms of stroke survivors. Furthermore, an American study from the year 2009 even showed that post-menopausal women who were treated with antidepressant selective serotonin-reabsorption inhibitors (SSRIs) had a 45 per cent higher risk of suffering a stroke. Which begs the question of how a drug that increases the risk of developing a certain condition can then later be used to treat that very condition.

However, the pharmaceutical industry has other tricks up its sleeve. For example, there are currently great hopes for success with drugs that aim to use hormonal nerve-growth factors to promote the regeneration of damaged brain tissue. This may work in principle, but the problem remains that although new connections are certainly created in the brain, they are not necessarily the connections that would be helpful. And completely rewiring the brain in this way may lead to results as catastrophic as those achieved when it was believed that implanting dopamine cells was the answer to treating Parkinson’s disease — those cells grew so rampantly that they caused tics so extreme that patients were almost unable to live with them. Flooding the brain with a drug is far more likely to result in a wholesale assault with various collateral damage than to strike the real enemy in a targeted way.

It makes much more sense to take advantage of the brain’s enormous plasticity to help it heal itself. All this requires is to make sure the necessary impulses hit the right parts of the brain. When that is achieved, the brain is able to pull itself out of the swamp of its limited functionality by its own bootstraps, so to speak.

Thus, Peer Augustinski’s progress was quite typical. We examined and treated 32 stroke patients, who had absolutely no residual movement in their arms and fingers, and who showed no positive response to therapy. We selected them from among 700 patients according to the following criteria: their hand had to be completely immobilised, they had to be neither depressed nor completely apathetic, they needed to have a person available to support and care for them during the treatment, and they had to live close by so that they could also practice at home. The majority were elderly patients. Training was successful for almost everyone, but of course more so for patients who still had an intact residual connection between their brain’s command centre and their hands. After training, all patients were once again able to move their hands, and in many cases they were even able to use their hand in real-life situations (e.g. to clean their teeth, eat with a spoon, etc.).10

In future, we will feed the brainwaves from the cells of the brain’s command centre through implanted electrodes directly to the prosthesis and the muscles so that each individual finger can be moved at will. A further advantage of BMI prosthetics is that they are portable and can be used by patients at home. This extends training times and makes it easier to apply the successes gained in training to the domestic environment.

I am hopeful that such BMI therapy will soon form a routine part of treatment regimes in rehabilitation centres and other institutions. However, psychologists currently show little inclination to include this method in their treatment repertoire. There is a great aversion to technology and biology in their profession, despite the fact their particular training means they should be the best practitioners to promote the effective learning processes that BMI therapy depends upon. This is not the place to discuss the reasons for that attitude. My hopes for the BMI rest rather with physiotherapists, sports therapists, and other non-academic professions working in rehabilitation.

Even epilepsy is not an inescapable fate

Skull fractures, strokes, poisoning, encephalitis, tumours — the potential causes of epilepsy read like a litany of medical catastrophes, and that is why it is more common than we think: some 50 million people suffer from epilepsy worldwide. Sufferers face great psychological strain and anxieties. This is not only because they are literally thrown off course by their repeated seizures and must live with the constant fear of the next attack and the possible injuries it could result in; it is also because the people around them do not know how to react. Fyodor Dostoevsky was an epilepsy sufferer. He wrote, ‘many cannot behold an epileptic fit without a feeling of mysterious terror and dread’. The same is just as true today as it was then.

And it is still true that any epileptic fit pulls the plug on the sufferer’s brain. This is because the brain cannot metabolise the energy fast enough to cover the huge amount used during an epileptic episode, leading to the death of many cells by energy starvation. This can lead to long-term damage: the cognitive development of children with epilepsy is often delayed, and adults with epilepsy often suffer from cognitive decline. It was no coincidence that Dostoevsky called his intensely autobiographical novel about Prince Myshkin simply The Idiot.

All this is reason enough, therefore, to seek therapies to treat epilepsy. The truth is, however, that little progress is being made, just as there is little progress in changing public attitudes to the condition. The medical profession stubbornly persists in trusting in operations and medication, which turn out to be completely useless in one-third of patients.

Yet there are other, more effective procedures available for this condition, which also have fewer side effects. These procedures take advantage of the fact that neuronal activity registers most clearly as electrical signals during an epileptic seizure — which opens up huge possibilities based on the brain’s powers of self-control.

One of my best friends and closest colleagues, the Italian neuroanatomist Valentino Braitenberg, described epilepsy as a ‘short way from thought to fit’, by which he meant that there is a continuum extending from normal excitability to the electronic salvos of an epileptic seizure. Dostoevsky described how, in the excitation phase, his brain, or that of his hero Prince Myshkin, ‘suddenly amid the sadness, spiritual darkness and depression … seemed to catch fire at brief moments … I would feel the most complete harmony in myself and in the whole world and this feeling was so strong and sweet that for a few seconds of such bliss I would give ten or more years of my life, even my whole life perhaps.’ The sense of awareness experienced by the otherwise rather melancholic author ‘increased tenfold at such moments’.

Today, doctors describe this phase of a seizure as the ‘aura’. During it, people with epilepsy like Dostoevsky can develop an almost euphoric burst of creativity. This explains why it really is just a short step from an innovative thought to a fit, which then however sweeps everything away with its destructive power. ‘The face, especially the eyes, become terribly disfigured, convulsions seize the limbs,’ Dostoevsky describes in his novel, ‘a terrible cry breaks from the sufferer, a wail from which everything human seems to be blotted out.’

Taking back self-control

The best way to imagine the aura phase prior to an epileptic seizure is to think of the neurons in the brain becoming increasingly charged with electricity until it all becomes too much and there is a massive discharge that overwhelms the person concerned in the form of a fit. In principle, it must be possible to prevent that final discharge from taking place, or at least to make it less severe by preventing the build-up of charge in the brain in the first place. In the past, many epilepsy patients managed this alone, developing strategies that enabled them to influence their aura, to suppress, dissipate, or neutralise it. This might involve clenching their fists, sniffing a bottle of perfume, pressing a finger against their upper lip, or trying to relax their mind by thinking of something that will return their brain to a calmer state.

It is thought that around 60 per cent of people with epilepsy could work with methods such as these and thus contribute to a mitigation of their seizures. The fact is, however, that only a very few make use of this potential these days. The psychoactive and anticonvulsant drugs that arose in the 1920s imposed a general policy of tranquilising the brain, meaning the aura phase was lost, and with it the chance for patients to prepare themselves for an impending seizure. The aim of this therapy is to stabilise sufferers, and this is indeed successful these days in two-thirds of cases. One-third are even left almost seizure-free. But such medication can also cause difficulty concentrating, slower reactions, and a general dulling of the brain.

This is a dubious strategy, and not only because it fails to achieve the desired therapeutic effect in a third of patients. It is also questionable because it places their fate in the hands of the medical and pharmaceutical industries, thereby exposing patients to a twofold loss of control: first, that caused by the overpowering violence of their seizures; and second, the removal of any opportunity to influence their condition themselves.

Even those patients who welcome such a pharmaceutical-based treatment because it brings relief from their fits must reckon with life-shortening side effects such as kidney and liver damage. For this reason, a learning therapy with no side effects would be a sensible strategy to complement drugs-based treatments, resulting in a reduction of the dosage of anticonvulsants needed by a patient without increasing the frequency of their seizures.

These considerations led us to adopt a ‘back to the roots’ approach. We wanted to give patients their aura back and then provide them with a few powerful techniques for effective preparation for an imminent attack with the aim of reducing its severity or, ideally, preventing it from happening altogether.

For obvious reasons, we selected the test group for our research from among patients who had not responded well to any drugs-based treatment. Some of them already showed unmistakable signs of cognitive impairment due to severe brain damage. We connected them up to the EEG and indicated to them via a computer screen what level of electrical excitability their brain was currently showing. For adult patients, this was represented by a coloured space rocket flying from left to right across the screen. If the rocket was green, everything was okay. If it turned red, this meant the patient’s neurons were firing massively, indicating an imminent epileptic seizure. The subjects were instructed to try to prevent the seizure by controlling their brain activity and consciously switching the rocket’s colour from red back to green. The aim: although seizures seldom occur in the laboratory, epileptics must learn to control the overstimulation of their brain, which is present even when they are not experiencing a seizure. That overstimulation is rendered visually on the screen as the EEG curve, an easily interpreted representational feedback for the patients.

Child test subjects with epilepsy watched a little man on the screen who was stranded on an alien planet and had to try to make his way to a nearby spaceship. The subjects could only make this happen by reducing the excitatory potentials in their brain — using nothing other than the power of their thoughts. And they had to do this as quickly as possible, since an aura can sometimes last only a matter of seconds. We treated mainly children aged eight or above whose parents and doctors has reached the conclusion that the side effects associated with drugs-based treatment were too damaging for the young patients’ development.

Around a third of our patients with intractable seizures learned to calm their own brains. Age, intelligence, and gender had no influence on the results. Rather, the deciding factor was whether the patients had the necessary patience and stamina — that is, discipline — to persevere through the 30 to 50 hours of training required before a palpable effect appeared. One-third of our adult subjects even became totally seizure-free. For a chronic condition with no known cure such as epilepsy, this is a great success. The research involved 50 patients with severe epilepsy.

It was a difficult process for them because they also had to learn how to adjust their brains beyond the confines of our laboratory. To help them with this, we took our equipment into their homes at first. But ultimately, it had to work for them even when we were not there. Everywhere: while they were at work or eating out in a restaurant, while they were watching television or having sex, or, perhaps most importantly, when they were behind the wheel of a car. They had to incorporate the thought strategies and calming techniques they had developed into their everyday lives. Such a transference is not easy, and can soon become overwhelming, especially for a person with epilepsy whose brain is already severely damaged. Results showed, however, that one in three managed to restructure their way of thinking so as to prevent an imminent fit. A deterioration in cognitive abilities does not automatically mean the brain’s self-correcting abilities are lost.

Despite this success for neurofeedback, which was reported in scientific journals specialising in research into epilepsy such as Epilepsia, this method is rarely, if ever, used, even in the treatment of the most severe cases of epilepsy, which would need it most urgently. There are many and varied reasons for this, and they are the same for almost all the learning therapies described in this book. One of the main reasons is a lack of knowledge of related branches of science. Although medicine and the health sciences have been paying lip service to the importance of an interdisciplinary approach for decades, it is still not practised. On the contrary, as the level of general knowledge increases, so does the degree of specialisation.

Doctors and neurologists are taught that physical conditions require physical — that is, medical (mostly pharmacological) — treatments. Psychologists are taught that psychological behavioural disorders require mental, and therefore social and psychological, treatment. This simple logic seems convincing, but it is wrong. Its main purpose is to artificially maintain traditional divisions between academic disciplines and professions. This in spite of the fact that many physical diseases of the nervous system, such as epilepsy, often respond better to psychological interventions, while mental and psychological disorders react better to medical treatment (e.g. medication to treat schizophrenia, or electroconvulsive therapy for depression). The lines separating physical and psychosocial causes are fluid and usually very difficult to draw.

Nevertheless, neurologists simply cannot imagine that such a severe brain disorder as epilepsy can be remedied through learning, just as psychologists are unable to conceive of using methods such as behaviour therapy and biofeedback to make a long-lasting positive impact on organic defects of the brain or body. Health insurers think in a similar way, as well as harbouring the legitimate fear of unnecessarily increasing costs by paying for pseudoscientific psycho-treatments. They therefore adopt the baseline policy of refusing to cover the cost for anything that does not fit with the conventional medical or psychotherapeutic way of thinking — and when drugs are considered to be an option, this inevitably also applies to neurofeedback.

A quarter of the people with epilepsy — those particularly severe cases who do not respond to treatment with drugs — are affected by this ignorance and withholding of treatment. Meanwhile, many extremely sick people, including many children, continue to take medication that is not only ineffective, but also associated with debilitating physical and mental side effects. This need not be the case, if only the individual therapeutic professions would look beyond their own backyard and concern themselves with the most important thing: what is best for their patients.

Even half a brain will work

These days it is presumably common knowledge that we have inside our skull a brain that is divided into two hemispheres. While our left kidney has the same function as its counterpart on the right, and our left lung is responsible for breathing just as our right lung is, we are told that the two hemispheres of our brain are in charge of very different tasks. It is the general belief that language, logic, and rational thinking are located on the left, while creativity and emotions are found more on the right. It is now even possible to complete various tests to find out whether you are more left- or right-dominated — and if you are not satisfied with the result, you can engage in certain training procedures to change your hemispherical dominance. Many people prefer to think of themselves as right-brain dominated, since they see creativity and emotions as more desirable and attractive than logic and rational thinking.

However, this hemisphere model is now considered obsolete among brain researchers. Today, scientists believe rather that while the two hemispheres of the brain do have different ways of processing information along the lines just described, these merely reflect priorities and preferences rather than exclusive areas of responsibility. Non-linguistic functions especially are usually located in both hemispheres, and brain activity can be recorded on the right as well as the left side of the brain for language functions, too. In some cases, one hemisphere can even take over all the tasks of the other.

This was the case of one ten-year-old girl.11 When the girl’s parents took their daughter to the doctor at the age of three-and-a-half because of epileptic seizures, it was discovered that the right hemisphere of her brain was almost completely non-existent. The right side of her skull contained nothing but a space filled with more-or-less-functionless spinal fluid. Clearly, that side of her brain ceased to grow very early during her development in the womb.

Nonetheless, the little girl had developed just as any other child would. She was also able to see normally — which is astounding, because the loss of one hemisphere of the brain should lead to the loss of vision on the opposite side. Patients without a left hemisphere are blind in their right eye, and vice versa. But the brain does not always necessarily stick to those rules.

Magnetic-resonance imaging and various perception tests showed that the girl’s left hemisphere had taken on practically all visual function. This demonstrates clearly that the brain is not made up simply of inflexible wired circuitry; it also contains a mechanism to organise the alignment of nerve cells with each other. This means that the type of work done by various parts of the brain is not static. The brain constantly monitors them against the tasks they have to complete and adjusts them as necessary, allowing areas of the brain to take on functions for which they were not originally intended.

In 2002, researchers reported the case of a seven-year-old Dutch girl whose left hemisphere was missing. For this reason, she had only limited control over the right side of her body and, unlike the little girl in the case described above, her field of vision was also incomplete. But the little girl in the Netherlands had a different skill: bilingualism. She was fluent in both Dutch and Turkish, despite the fact that the language centre of the brain is located in the left hemisphere, and so she shouldn’t have been able to speak even one language properly, let alone two. Once again, it appears that the intact half of the brain completely took over the functions usually centred in the other hemisphere.

It should be noted that such feats of adaptability as these can only work if the structures of the brain allow it. This is of course more likely earlier in life than later; in the case of the little girl born without a right hemisphere, the realignment began in the womb. However, this does not mean that the plasticity of the brain cannot achieve amazing feats of adjustment even in advanced old age.

In 2007, the medical journal The Lancet published a report on a 44-year-old father who was admitted to hospital with mild weakness in his left leg.12 Doctors examined his brain — and discovered a large black hole full of fluid rather than functioning neurones. Overall, the man had only about half as much brain mass as his average age peers. He had been diagnosed with hydrocephalus as a child, and that fluid in his brain had repeatedly pushed his brain matter against the inside of his skull and inhibited its growth in the process. Nonetheless, the man not only held down a job as a civil servant, but also had a wife and two children. After doctors drained the fluid and reinstated normal pressure levels inside his head, the man was able to walk normally again.

A similarly spectacular case, this time from the United States, is that of Terry Wallis. He became comatose after being involved in a car accident in 1984. He remained in a minimally conscious state, only able to give the occasional nod or grunt. Magnetic-resonance imaging of his brain offered no hope that he would ever regain consciousness. Yet after nine years, he began uttering words again. They were not connected up into meaningful phrases, but they were an astonishing development all the same. Doctors re-examined Terry’s brain and found that new nerve fibres had formed in his cerebral cortex to bypass the non-functioning areas. In addition, his precuneus was active once again, and becoming more active all the time. This laterally located area of the cerebral cortex is pivotal in forming consciousness of both self and our surroundings. Its reactivation in Terry’s brain was an indication that he was in the process of returning to waking life. And indeed, in 2003, after spending a total of 19 years in a coma, he was able to speak normally again and move his arms and legs.

From that point on, magnetic-resonance imaging showed even more clearly defined changes in his brain, in particular an apparent explosion of new nerve fibres in the cerebellum. Terry’s motor skills continued to improve, although he has never managed to learn to walk properly again. Apart from that, he is now able to participate in normal life and social interaction just like anyone else. He has come to terms with the fact that he has no memory of the 19 years he spent in a coma, and with the fact that his wife now has three children with another man. It is possible that this mental resilience played a part in his freeing himself from what seemed like a hopeless situation. We do not know. Indeed, to this day, we also do not know what processes cause a patient to wake up after many years in a coma.

However, we are increasingly coming to understand that the brain is able to heal itself, even after suffering severe damage, by ‘re-inventing itself’, as it were, in a process of restructuring and rewiring. Sometimes this is more successful than others, but the fact is that the brain’s potential is far greater than we used to believe. Thus, we have no need to fear that our brain, and with it our sense of self, might suddenly disappear.

And anyway, the brain also has its own solution to the problem of fear.