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a1000shadesofhurt

a1000shadesofhurt

Category Archives: Neuroscience/Neuropsychology/Neurology

Sleepy brains neglect half the world

07 Saturday Jun 2014

Posted by a1000shadesofhurt in Neuroscience/Neuropsychology/Neurology

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alertness, attentional deficits, bodily sensations, damage, drowsiness, frontal lobes, hemispatial neglect, parietal lobes, right hemisphere, sights, sleep, sounds, space, spatial awareness, stroke, visual field, visual neglect

Sleepy brains neglect half the world

Damage to certain parts of the brain can lead to a bizarre syndrome called hemispatial neglect, in which one loses awareness of one side of their body and the space around it. In extreme cases, a patient with hemispatial neglect might eat food from only one side of their plate, dress on only one side of their body, or shave or apply make-up to half of their face, apparently because they cannot pay attention to anything on that the other side.

Research published last week now suggests that something like this happens to all of us when we drift off to sleep each night. The work could help researchers to understand the causes of hemispatial neglect, and why it affects one side far more often than the other. It also begins to reveal the profound changes in conscious experience that take place while we fall asleep, and the brain changes that accompany them.

Hemispatial neglect is a debilitating condition that occurs often in people who suffer a stroke, where damage to the left hemisphere of the brain results in neglect of the right half of space, and vice versa. It can occur as a result of damage to certain parts of the frontal lobes, which are involved in alertness and attention, and the parietal lobes, which process information about the body and its surrounding space.

In clinical tests, patients with hemispatial neglect are typically unaware of all kinds of stimuli in one half of space – they fail to acknowledge objects placed in the affected half of their visual field, for example and cannot state the location of touch sensations on the affected side of their body. Some may stop using the limbs on the affected side, or even deny that the limbs belong to them. Patients with neglect can usually see perfectly well, but information from the affected side just does not reach their conscious awareness.

In 2005, researchers at the MRC Cognition and Brain Sciences Unit in Cambridge reported that reduced alertness dramatically alters spatial awareness in healthy people by shifting attention to the right so that they neglect visual stimuli to the left. To investigate further, they recruited 26 more healthy participants and tested their spatial awareness while they fell asleep.

To do so, they took the participants one by one into a dark room and told them to sit back in a comfortable reclining chair and relax. They recorded the participants’ brain wave patterns using electrodes attached to the scalp, and measured their reaction times, to determine exactly when they started getting drowsy, then played sounds to either their left or right, and asked them to indicate which side each one came from by pressing one of two buttons.

Again, the researchers saw that reduced alertness caused a rightward shift in spatial attention. During the few moments of drowsiness just before falling asleep, the participants consistently mislocated sounds played to their left, and said that they had been played to the right.

“This is an exciting development,” says Masud Husain, a clinical neurologist at the University of Oxford who studies neglect in stroke patients. “It suggests that while falling asleep the healthy brain behaves in a similar way to stroke patients who have difficulty keeping alert.”

The findings further suggest that the attentional deficits associated with hemispatial neglect apply to sounds as well as to sights and bodily sensations, and also provide clues about why, in the vast majority of cases, neglect only persists after damage to the right hemisphere of the brain. “Both groups appear to have particular difficulty attending to information to their left, consistent with the view that frontal and parietal regions of the right hemisphere play a key role in maintaining alertness.”

The study also provides clues about the brain mechanisms underlying neglect. “People don’t necessarily miss items on the left as they become more drowsy, but instead respond as if they had come from the right,” says Husain, “as if their perception of space becomes skewed to the right as their alertness declines.”

“The implication is that right hemisphere brain mechanisms that are crucial to representing space around our bodies also interact with processes that keep us vigilant and alert,” he adds. “The results are intriguing but need to be confirmed, perhaps with a more precise method than pressing buttons.”

Reference: Bareham, C. A., et al. (2014). Losing the left side of the world: Rightward shift in human spatial attention with sleep onset.Scientific Reports 4, doi: 10.1038/srep05092

Night terrors: In my wildest dreams

29 Tuesday Apr 2014

Posted by a1000shadesofhurt in Neuroscience/Neuropsychology/Neurology

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adults, Children, night terror, nightmares, panic, reassurance, scream, shout, sleep, stress, terror

Night terrors: In my wildest dreams

The walls are closing in on me. The air is sucked out of my lungs and everything turns black. One thought pulses through my mind – to get out of the room, no matter how. I push open my window and start climbing out. Only when the fresh air hits me do I realise something’s not right. I fall backwards and crawl back into bed, confused and disorientated by my surroundings.

This was the most dangerous night terror I suffered during my final year at university. I initially forgot what had happened, until I saw the chaos the next morning – my desk and chair were overturned, my books had been knocked off my bedside table and my laptop’s screen had smashed. The window was still wide open.

Deep bruises came up a day after, with the right-hand side of my body turning black and blue. My GP practically laughed me out of the surgery when I went in for a consultation. “There’s nothing I can do about it, it happens in your sleep,” he said, smiling. It was only once I had moved to London and suffered a similar attack that left me bleeding that I decided I’d had enough. After a three-month wait, I finally managed to get a space in one of the UK’s busiest sleep clinics for an overnight study.

The technicians wired me up at the clinic at London Bridge. There were 10 sensors attached to my head alone, with countless cables running down my body. Lying on the bed, monitored by two cameras, I knew that I wouldn’t be having a night terror that night. But I was hopeful that the results might shed some light on my condition.

When someone suffers from a night terror, they can scream, shout and thrash around in extreme panic, sometimes jumping out of bed. It’s an unnerving experience for anyone to watch – the sufferer’s eyes will be open, but they’re not fully awake or aware of what they’re doing. Once the panic subsides, the person will fall back asleep, oblivious to the chaos.

Most people experience nightmares or night terrors growing up. Figures show that between 20 and 30 per cent of children between the ages of five and 12 have frequent nightmares, while night terrors affect 17 per cent of children. Once children reach adulthood, incidence rates are much lower, with only one in 20 of that 17 per cent still reporting night terrors in later life. But recent research has linked recurring night-time problems to more ominous long-term consequences. A study conducted by the University of Warwick followed nearly 6,800 children up to the age of 12. The results suggest that long-term sufferers of nightmares and night terrors have a higher risk of mental health problems as they enter adolescence. Those having nightmares aged 12 were three-and-a-half times more likely to have problems and the risk was nearly doubled by regular night terrors.

Psychology professor Dieter Wolke led the research at Warwick. He says that while children often experience night-time problems, in adults, it’s only around 1 to 2 per cent who still have night terrors. When they persist into adulthood, the physical risks also increase. “Night terrors become more dangerous, as you’re larger and more mobile. People are known to have fallen off balconies or thrown themselves out of windows,” says Professor Wolke.

From a young age, I have been a restless sleeper, but the night terrors only started happening when I entered my teens. It wasn’t until university that they became more severe. The more extreme ones saw me running around the house or frantically trying to open my bedroom window.

So why do night terrors occur? According to Dr Nicholas Oscroft, a respiratory physician at Papworth Hospital, genetics and not getting enough sleep could be to blame. “It does seem to run in families… From previous research it has become clear that night terrors happen more often if people don’t get enough sleep on a regular basis. Work or family-related stress also increases the risk.”

Another sufferer is 24-year-old Kevin Stone. He started having night terrors from the age of seven. He believes it’s because of having lived in South Africa, where his family experienced regular break-ins. His night terrors follow a repeated theme – someone is always trying to chase or kill him. “I once dreamt that people had broken into the house and were in my room. They made me get out of bed and kneel on the floor while I tried to convince them not to kill me. When I have a night terror, I act out everything. I can hear their voices, I can see them, I can even feel the gun against my head.”

Stone’s night terrors took a gruesome turn when he was 18. One night, he woke up and was convinced someone had broken into the house. As a result, he jumped out of his bedroom window and fractured his spine and broke both his ankles. “I realised what I was doing just before I hit the ground.” Terrified by what his sleeping mind was capable of, he sought treatment to stop his night terrors from happening. But he believes that his problems can’t be solved, because it’s all in his mind. “Doctors have said to keep a bedtime journal to clear my mind, but that hasn’t worked.” He also wasn’t happy with the option of being prescribed antidepressants.

So can night terrors be solved? Dr Oscroft seems unsure. “Adult patients who suffer from them need to try and reduce how often it happens. The best way to achieve this is by getting enough sleep. People should also optimise their sleeping environment, so that they won’t be woken up during the first two hours of sleep, which is when night terrors are most likely to occur.”

Night terrors can put a strain on relationships. Dr Oscroft says the best thing to do when someone is suffering from a night terror is to reassure them. “People who are having a night terror will be agitated, so the best thing to do is to calmly talk to them until they wake up. Don’t try to restrain them unless they are in danger of hurting themselves.”

My results from the sleep clinic proved surprising. I had woken up four times during the night – flustered and disorientated. Even though there was no physical cause, I do suffer from slow wave arousal disorder, which is usually associated with sleepwalking and other sleeping disorders. Aside from the advice to sleep more or to take sleeping pills, my diagnosis remains unchanged. I suspect that it will be something I’ll have to deal with on a regular basis throughout my life. Until they stop completely, I’ll be keeping my bedroom window firmly locked.

A group of neuroscientists believes it can communicate with “locked-in” coma patients

21 Monday Apr 2014

Posted by a1000shadesofhurt in Neuroscience/Neuropsychology/Neurology

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'vegetative state'; 'trapped'; coma, awakefulness, awareness, Brain activity, brain imaging, brain injury, brain scans, cognitive processing, communication, conscious, diagnosis, families, fMRI, Locked-In Syndrome, misdiagnosis, powerlessness, recovery, reflex, relatives

A group of neuroscientists believes it can communicate with “locked-in” coma patients

“Imagine you wake up, locked inside a box,” says Adrian Owen.”It’s a perfect fit, down to every last one of your fingers and toes. It’s a strange box because you can listen to absolutely everything going on around you, yet your voice cannot be heard. In fact, the box fits so tightly around your face and lips that you can’t speak, or make a noise. At first, this feels like a game. Then reality sets in. You see and hear your family lamenting your fate. You’re too cold. Then too hot. You’re always thirsty. The visits of your friends and family dwindle. Your partner moves on. And there’s nothing you can do about it.”

Owen and I are talking on Skype. I’m sitting in London while he’s at the University of Western Ontario in Canada. Owen’s reddish hair and close-cropped beard loom large on my screen as he becomes animated describing the torment of those with no voice: his patients.

People in a “vegetative state” are awake yet unaware. Their eyes can open and sometimes wander. They can smile, grasp another’s hand, cry, groan or grunt. But they are indifferent to a hand clap, unable to see or understand speech. Their motions are not purposeful but reflexive. Their minds remain firmly shut. Still, when their eyelids flutter open, you are always left wondering if there’s a glimmer of consciousness.

A decade ago, the answer would have been a bleak and emphatic no. Not any longer. Using brain scanners, Owen has found that some may be trapped inside their bodies yet able to think and feel to varying extents. The number of these cases has soared in recent decades, ironically, because doctors have steadily become better at saving patients with catastrophic injuries.

Today, trapped, damaged and diminished minds inhabit clinics and nursing homes worldwide – in Europe alone, the number of new coma cases is estimated to be 230,000 annually, of whom 30,000 will languish in a persistent vegetative state. They are some of the most tragic and expensive artefacts of modern intensive care.

Owen knows this only too well. In 1997, a close friend set off on her usual cycle to work. Anne had a weak spot on a blood vessel in her head, known as a brain aneurysm. Five minutes into her trip, the aneurysm burst and she crashed into a tree. She never regained consciousness.

The tragedy of Anne’s accident would shape Owen’s life. He began to wonder if there was a way to determine which of these patients were in an unconscious coma, which were conscious and which were somewhere in between?

That year, he had moved to the Medical Research Council’s Cognition and Brain Sciences Unit in Cambridge, where researchers used various scanning techniques. One, positron emission tomography (PET), highlights different metabolic processes in the brain, such as oxygen and sugar use. Another, known as functional magnetic resonance imaging (fMRI), can reveal active centres in the brain by detecting the tiny surges in blood flow that take place as a mind whirrs. Owen wondered whether he could use these technologies to reach out to patients, like his friend, stuck between sensibility and oblivion.

Today, being alive is no longer linked to having a beating heart, explains Owen. If you are on a life-support machine, are you dead? Is a failure to sustain independent life a reasonable definition of death? No, otherwise we would all be “dead” in the nine months before birth.

The issue becomes murkier when we consider those trapped in the twilight worlds between normal life and death – from those who slip in and out of awareness, who are trapped in a “minimally conscious state”, to those who are severely impaired in a vegetative state or a coma.

In the wake of the development of the artificial respirator during the 1950s in Denmark, pioneering work to categorise disorders of consciousness was carried out in the 1960s by the neurologist Fred Plum in New York and the neurosurgeon Bryan Jennett in Glasgow.

Plum coined the term “locked-in syndrome”, in which a patient is aware and awake but cannot move or talk. With Plum, Jennett devised the Glasgow Coma Scale to rate the depth of coma, and Jennett followed up with the Glasgow Outcome Scale to weigh up the extent of recovery, from death to mild disability. Together they adopted the term “persistent vegetative state” for patients who, they wrote, “have periods of wakefulness when their eyes are open and move; their responsiveness is limited to primitive postural and reflex movements of the limbs, and they never speak”. In 2002, Jennett was among a group of neurologists who chose the phrase “minimally conscious” to describe those who are sometimes awake and partly aware, who show erratic signs of consciousness so that at one time they might be able to follow a simple instruction and at another they might not.

Kate Bainbridge, a 26-year-old schoolteacher, lapsed into a coma three days after she came down with a flu-like illness. A few weeks after her infection had cleared, Kate awoke from the coma but was diagnosed as being in a vegetative state. Luckily, the intensive-care doctor responsible for her, David Menon, was also a principal investigator at the newly opened Wolfson Brain Imaging Centre in Cambridge, where Adrian Owen then worked.

Menon wondered whether elements of cognitive processing might be retained in patients in a vegetative state, and discussed with Owen how to use a brain scanner to detect them. In 1997, four months after she had been diagnosed as vegetative, Kate became the first patient in such a state to be studied by the Cambridge group. The results, published in 1998, were extraordinary. Her brain responses were indistinguishable from those of healthy volunteers; her scans revealed brain activity at the back of her brain, in a part which helps recognise faces. Kate became the first such patient in whom sophisticated brain imaging (in this case PET) revealed “covert cognition”. Of course, whether that response was a reflex or a signal of consciousness was, at the time, a matter of debate.

The results were of huge significance not only for science but also for Kate and her parents. “The existence of preserved cognitive processing removed the nihilism that pervaded the management of such patients in general, and supported a decision to continue to treat Kate aggressively,” recalls Menon.

Kate eventually surfaced from her ordeal, six months after the initial diagnosis. She described how she was indeed sometimes aware of herself and her surroundings. “They said I could not feel pain,” she says. “They were so wrong.”

Sometimes she’d cry out, but nurses thought it was nothing more than a reflex. Hospital staff had no idea how much she suffered in their care. Physiotherapy nurses never explained what they were doing to her. She was terrified when they removed mucus from her lungs. “I can’t tell you how frightening it was, especially suction through the mouth,” she has written. Her pain and despair became such that she tried to snuff out her life by holding her breath. “I could not stop my nose from breathing, so it did not work. My body did not seem to want to die.”

Kate says her recovery was not so much like turning on a light but a gradual awakening. By then she had lost her job, her sense of smell and taste, and much of what might have been a normal future. Now back with her parents, Kate is still very disabled and needs a wheelchair. Yet, 12 years after her illness, she started to talk again and, though still angry about the way she was treated when she was at her most vulnerable, she remains grateful to those who helped her mind to escape.

She sent Owen a note:

“Dear Adrian, please use my case to show people how important the scans are. I want more people to know about them. I am a big fan of them now. I was unresponsive and looked hopeless, but the scan showed people I was in there. It was like magic, it found me.” k

Nicholas Schiff is a neurologist at Weill Cornell Medical College in New York. His working life is a balancing act between putting the interests of his patients and their families first and keeping true to the science as he wrestles with disorders of consciousness. “There’s a lot we don’t know,” he admits. “Frankly, I am wrong a lot of the time.”

In 2005, Schiff applied his emerging understanding of the circuits of consciousness to Jim, a 38-year-old man who had been beaten and robbed and was left minimally conscious. Jim’s eyes had mostly remained shut. He was unable to speak and could communicate only by a nod, or tiny eye or finger movements. His plight seemed hopeless. Eventually, Jim’s mother gave a “do not resuscitate order” to doctors. Schiff thought differently.

Schiff had earlier scanned Jim with fMRI in 2001. His team had played subjects, including Jim, an audiotape in which a relative or loved one reminisced. In detailed fMRI scans, Jim had shown that, despite having a very underactive brain, he had preserved large-scale language networks. When he heard a story that meant something to him, his brain lit up. What, thought Schiff, if Jim’s thalamus could be activated by deep brain stimulation?

A brain pacemaker was implanted into Jim. After its two electrodes delivered pulses of electricity to his thalamus, he was able to use words and gestures, respond reliably to requests, eat normally, drink from a cup, and carry out simple tasks such as brushing his hair. Schiff believes that once a brain re-engages with the world, it accelerates processes of repair. For the next six years, before Jim died of unrelated causes, he kept his mind above the minimally conscious state. “He could converse in short sentences reliably and consistently and make his wishes known,” says Schiff. “He could chew and swallow and eat ice-cream and hang out. His family told us that they had him back.” The case made the front page of the New York Times. “I prayed for a miracle,” his mother told me at the time he was brought back. “The most important part is that he can say ‘Mummy and Pop, I love you.’ God bless those wonderful doctors. I still cry every time I see my son, but it is tears of joy.”

In a forested campus south of Liège, Steven Laureys studies vegetative patients in research that dates back decades. Working there as part of the Cyclotron Research Centre in the 1990s, he was surprised when PET brain scans revealed that the patients could respond to a mention of their own name. Meanwhile, on the other side of the Atlantic, Nicholas Schiff was finding that partially working regions lay within catastrophically injured brains. What did it all mean?

At that time, doctors thought they already knew the answers: no patient in a persistent vegetative state was conscious. Medical practitioners, with the best intentions, thought it was perfectly acceptable to end the life of a vegetative patient by starvation and the withdrawal of water. This was the age of what Laureys calls “therapeutic nihilism”.

What Owen, Laureys and Schiff were proposing was a rethink of some of the patients who were considered vegetative. A few of them could even be classed as being fully conscious and locked-in. The establishment was doggedly opposed. “The hostility we encountered [in the late 1990s] went well beyond simple scepticism,” says Schiff. Looking back, Laureys pauses and smiles thinly: “Medical doctors do not like to be told they are wrong.”

Then came 2006. Owen and Laureys were trying to find a reliable way to communicate with patients in a vegetative state, including Gillian. In July 2005, this 23-year-old had been crossing a road, chatting on her mobile phone. She was struck by two cars and diagnosed as vegetative.

Five months later, a strange piece of serendipity allowed Gillian to unlock her box. “I just had a hunch,” says Owen. “I asked a healthy control [subject] to imagine playing tennis. Then I asked her to imagine walking through the rooms of her house.” Imagining tennis activates part of the cortex called the supplementary motor area, involved in the mental simulation of movements. But imagining walking around the house activates the parahippocampal gyrus in the core of the brain, the posterior parietal lobe, and the lateral premotor cortex. So, if people were asked to imagine tennis for “yes” and walking around the house for “no”, they could answer questions via fMRI.

Gazing into Gillian’s “vegetative” brain with the brain scanner, he asked her to imagine the same things – and saw strikingly similar activation patterns to the healthy volunteers. It was an electric moment. Owen could read her mind.

Gillian’s case, published in the journal Science in 2006, made front-page headlines around the world. The result provoked wonder and, of course, disbelief. “Broadly speaking, I received two types of email from my peers,” says Owen. “‘This is amazing – well done!’ and ‘How could you possibly say this woman is conscious?'”

As the old saw goes, extraordinary claims require extraordinary evidence. The sceptics suggested that it was wrong to make these “radical inferences” when there could be a more straightforward interpretation. Daniel Greenberg, a psychologist at the University of California, Los Angeles, suggested that, “the brain activity was unconsciously triggered by the last word of the instructions, which always referred to the item to be imagined”.

Parashkev Nachev, a neurologist now at University College London, says he objected to Owen’s 2006 paper not on grounds of implausibility or a flawed statistical analysis but because of “errors of inference”. Although a conscious brain, when imagining tennis, triggers a certain pattern of activation, it does not necessarily mean the same pattern of activation signifies consciousness. The same brain area can be activated in many circumstances, Nachev says, with or without any conscious correlate. Moreover, he argues that Gillian was not offered a true choice to think about playing tennis. Just as a lack of response could be because of an inability to respond or a decision not to co- operate, a direct response to a simple instruction could be a conscious decision or a reflex.

What is needed is less philosophising and more data, says Owen. A follow-up study published in 2010 by Owen, Laureys and colleagues tested 54 patients with a clinical diagnosis of being in a vegetative state or a minimally conscious state; five responded in the same way as Gillian. Four were supposedly in a vegetative state at admission.

Owen, Schiff and Laureys have explored alternative explanations of what they observed and, for example, acknowledge that the brain areas they study when they interrogate patients can be activated in other ways. But the 2010 paper ruled out such automatic behaviours as an explanation, they say: the activations persist too long to signify anything other than intent. “You cannot communicate unconsciously – it is just not possible,” says Owen. “We have won that argument”.

Since Owen’s 2006 Science paper, studies in Belgium, the UK, the US and Canada suggest that a significant proportion of patients who were classified as vegetative in recent years have been misdiagnosed – Owen estimates perhaps as many as 20 per cent. Schiff, who weighs up the extent of misdiagnosis a different way, goes further. Based on recent studies, he says around 40 per cent of patients thought to be vegetative are, when examined more closely, partly aware. Among this group of supposedly vegetative patients are those who are revealed by scanners to be able to communicate and should be diagnosed as locked-in, if they are fully conscious, or minimally conscious, if their abilities wax and wane.

There is anecdotal evidence that when contact is re-established with the occupant of a living box they are understandably morose, even suicidal. They have been ground down by frustration at their powerlessness, over the months, even years, it can take to recognise their plight. Yet the human spirit is resilient, so much so that they can become accustomed to life in this twilight state. In a survey of patients with locked-in syndrome, Laureys has found that when a line of communication is set up, the majority become acclimatised to their situation, even content (again, these insights took time to be accepted by the medical and scientific establishment – and even to be published in a scientific journal – reflecting the prevailing unease about the implications for hospitals and care homes).

The important question is detecting the extent to which such patients are conscious. Studies of large numbers of patients with brain injuries, and how they fare over the years, show that it makes a huge difference to the chance of recovery if a patient is minimally conscious rather than vegetative. The former have fragmentary understanding and awareness and may recover enough to return to work within a year or two.

Yet there are still surprises, such as the case of New York fireman Don Herbert, who awoke after a decade from a minimally conscious state caused by a severe brain injury suffered while fighting a fire in 1995. Schiff has used a technique called diffusion tensor imaging to show how a brain can rewire itself even decades after an injury – yet in the past year, even he has recommended withdrawing care from a man who had lain in a coma for eight weeks after a cardiac arrest. “I was wrong,” he says. “This man is now back at work.”

Parashkev Nachev has not changed his view since he first criticised Owen’s work, and spelt out the basis of his unease in a more detailed paper published in 2010. “For every relative of a living PVS [persistent vegetative state] patient given (probably false) hope, another is burdened with the guilt of having acquiesced in the withdrawal of treatment from someone who – he has been led to believe – may have been more alive than it seemed,” he says. “There are moral costs to false positives as well as to false negatives.

“I find the whole media circus surrounding the issue rather distasteful. The relatives of these patients are distressed enough as it is.”

Laureys, Owen and Schiff spend a great deal of time with the families and understand these sensitivities only too well. Owen counters that, from his years of experience dealing with the families, they are grateful that doctors and scientists take an interest and are doing everything they can. “These patients have been short-changed over the years,” he insists.

Owen is adamant that doctors have a moral duty to provide a correct diagnosis, even if the results cause guilt, unease or distress. “We must give every patient the best chance of an accurate diagnosis, so we can give them the appropriate care that goes along with that diagnosis.”

Under the umbrella classification of “vegetative” lies a vast array of brain injuries and, as a result, even some of the most vocal critics accept that some vegetative patients are not as diminished as traditional measures suggest. Professor Lynne Turner-Stokes chairs a group for the Royal College of Physicians that is revising UK guidelines on “Prolonged Disorders of Consciousness”. She remains unconvinced that the exceptional cases identified by Owen, Laureys and Schiff are particularly common or that enough has been done to establish brain scanners as a standard tool for routine diagnosis, particularly when the cost and convenience of these methods are taken into account. When it comes to extending these tests to all patients in a vegetative states as standard practice, “The evidence is just not there yet,” she says.

But she stresses that she is simply being cautious, not sceptical, describing the work of Owen, Laureys and Schiff as “important and exciting”. “We are only just beginning to scratch the surface,” she says. “But I have no doubt [these techniques] will have a place, eventually, in the evaluation of patients.”

Back on Skype, Owen smiles, considering whether to tell me what he is planning next. His partner, Jessica Grahn, also a neuroscientist, became pregnant at the start of 2013. What happens when consciousness winks on in the developing brain? He emails me a video of their unborn child, a montage of fMRI slices through their baby’s head, as it twists and turns in Jessica’s womb. “My colleagues have been doing fMRI on my wife’s tummy every week for a few weeks now to see if we can activate the foetus’s brain,” he writes. “It is amazing.”

Some names have been changed to protect identities. Adrian Owen’s friend Anne remains in a vegetative state. Adrian Owen and Jessica Grahn’s baby boy was born on 9 October 2013.

Britons show Victorian attitudes to epilepsy as children who suffer from the condition are accused of being ‘possessed’

21 Tuesday May 2013

Posted by a1000shadesofhurt in Neuroscience/Neuropsychology/Neurology, Young People

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Bullying, Children, discrimination, epilepsy, friends, possession, prejudice, seizure, teachers

Britons show Victorian attitudes to epilepsy as children who suffer from the condition are accused of being ‘possessed’

One in five children who suffer with epilepsy has been accused of being “possessed” after having a seizure, according to shocking new research.

Britons’ Victorian attitudes to the condition are exposed in a report published by the charity Young Epilepsy.

It finds that over three quarters of people of all ages have experienced discrimination as a result of their epilepsy. More than 40 per cent of children have experienced discrimination or exclusion from their peers, and almost a third have faced discrimination from teachers.

In addition, two fifths have faced discrimination from strangers, and 8 per cent by doctors and medical professionals, according to polling for Young Epilepsy by Opinion Matters.

Negative reactions from others after a child suffers a seizure include being told being told that epilepsy is contagious, which happened to a third of affected children, and being asked if they could speak to spirits, which occurred to 18 per cent.

David Ford, chief executive of Young Epilepsy, said: “It’s a level of prejudice more akin to 1913 than 2013. We knew there was some discrimination but we had no idea it was on this scale.”

Conservative MP Laura Sandys said: “I’m epileptic and I know from personal experience that this is what people think.

“There’s been a sea-change in people’s perceptions of most disabilities, but epilepsy still seems to be seen as something you keep quiet about; it still hasn’t shaken off that perception that you’re somehow possessed by the devil or demonised.”

Ms Sandys, who is chair of the All-Party-Parliamentary Group on Epilepsy, said: “There have only been two MPs who have declared their epilepsy, but statistically there should be another four.”

Experts are concerned that this prejudice means that children with epilepsy are less inclined to be open and discuss their condition, something which could have serious health implications.

This guardedness continues into later life, with 55 per cent of those adults who were questioned in the survey saying that they never disclose their epilepsy to new people because they fear a negative reaction from them.

Professor Helen Cross, Prince of Wales chair of childhood epilepsy at University College London and Great Ormond Street Hospital, said: “These high levels of prejudice have a huge impact on how children can manage their condition. If you’re worried about being bullied then you don’t want to talk to people about it, which means you don’t have buddies who know what to do if you have a seizure.”

She added: “Epilepsy is as common as diabetes, and in childhood it’s more common, but while I bet every schoolchild can name someone they know with diabetes, I’m sure that’s not the case with epilepsy.”

Case study: Elliot Harden, 11

Julie Harden from Oxted, Surrey, is mother of Elliot, 11, who suffers from a life threatening form of complex epilepsy

“Some people are really quite nasty about epilepsy. In conversations Elliot has been called ‘a retard’, ‘mad’, ‘not right’ and ‘that scary boy’. Even coming into my house people jump back from him as if they’re worried they’re going to be attacked.

I’ve got friends who won’t come round to our house with their children because they’re scared of what they might see. One time my other son Cameron, who is 8, was playing with other children upstairs. Elliot came up to see them and the other children ran away downstairs.

One of my neighbours even bangs on the wall saying ‘f-ing this and that’ when Elliot is having a seizure and fighting for his life. Another neighbour ran out of the house when he had a seizure.

Mindscapes: The woman who can’t recognise her face

18 Saturday May 2013

Posted by a1000shadesofhurt in Neuroscience/Neuropsychology/Neurology

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prosopagnosia

Mindscapes: The woman who can’t recognise her face

Heather Sellers has prosopagnosia, more commonly known as face blindness. “I can’t remember any image of the human face. It’s simply not special to me,” she says. “I don’t process them like I do a car or a dog. It’s not a visual problem, it’s a perception problem.”

Heather knew from a young age that something was different about the way she navigated her world, but her condition wasn’t diagnosed until she was in her 30s. “I always knew something was wrong – it was impossible for me to trust my perceptions of the world. I was diagnosed as anxious. My parents thought I was crazy.”

The condition is estimated to affect around 2.5 per cent of the population, and it’s common for those who have it not to realise that anything is wrong. “In many ways it’s a subtle disorder,” says Heather. “It’s easy for your brain to compensate because there are so many other things you can use to identify a person: hair colour, gait or certain clothes. But meet that person out of context and it’s socially devastating.”

As a child, she was once separated from her mum at a grocery store. Store staff reunited the pair, but it was confusing for Heather, since she didn’t initially recognise her mother. “But I didn’t know that I wasn’t recognising her.”

Chaos explained

Heather was 36 when she stumbled across the phrase face blindness in a psychology textbook. “When I saw those two words I knew instantly that was exactly what I had – that explained all the chaos.”

She found her way to Harvard neuroscientist Brad Duchaine who diagnosed her as having one of the three worst cases of the disorder that he had ever seen.

So what’s it like to not recognise anyone you know? Heather says the biggest difficulty with the disorder is recognising people who she is close to – the people that are most important to recognise. In the school where she teaches English she is fine, because she recognises people by their clothes or hair and asks her students to wear name badges.

But it can be harder in social settings. Once she went up to the wrong person at a party and put her arm around him thinking he was her partner. And at college men would phone her angry that she had walked straight past them after they had had a date. “At the time I was thinking ‘I didn’t see you, why is everyone making my life so difficult?'”

It’s not just other people Heather doesn’t recognise – she can’t identify her own face either. “A few times I have been in a crowded elevator with mirrors all around and a woman will move, and I will go to get out the way and then realise ‘oh that woman is me’.” She also finds it unsettling to see photos and not recognise herself in them.

Face processing

To try and understand the condition, Duchaine and his colleagues recorded brain activity while 12 people with prosopagnosia looked at famous and non-famous faces. The team found that part of the brain responsible for stored visual memory was activated in six people when they saw the famous faces.

But another component of brain activity thought to represent a later stage of face processing wasn’t triggered. “Some part of their brain was recognising the face,” says Duchaine, but the brain was failing to pass this information into higher-level consciousness (Brain, doi.org/fzmqgz).

“There may be training where we give people feedback and say ‘look you recognise that face even though you’re not aware of it’,” says Duchaine.

Now Zaira Cattaneo at the University of Milano-Bicocca in Italy and colleagues have identified the specific brain areas that allow us to recognise our friends. The team used transcranial magnetic stimulation to block two vital aspects of face processing in people without prosopagnosia. Targeting the left prefrontal cortex blocked the ability to distinguish individual features like the nose and eyes, and blocking the right prefrontal cortex impaired the ability to distinguish the location of those features from one another (NeuroImage, doi.org/mff).

“We made performance worse,” says Cattaneo. “We want to make it better.” Now the team are trying to activate these areas of the brain. “The aim is to enhance face recognition abilities by directly modulating excitability in the prefrontal cortices,” says Cattaneo.

Would Heather want a cure, should one be found? “I can’t imagine what you see when you see a face, and it’s scary,” she says. “I go back and forth on what I’d do. I’ve done so much work in figuring out how to chart my world, I’d need to do a whole new rewrite. But it would be fascinating.”

Stroke survivors and their families left to deal with the emotional impact alone, says report

01 Wednesday May 2013

Posted by a1000shadesofhurt in Neuroscience/Neuropsychology/Neurology

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anxiety, carers, confidence, Depression, family, relationships, stress, stroke, support

Stroke survivors and their families left to deal with the emotional impact alone, says report

Stroke survivors and their families feel abandoned by health and social services after being left to deal with the emotional impact of stroke alone, a report reveals today.

The report, ‘Feeling Overwhelmed’, published by the Stroke Association, marks the beginning of Stroke Month and details the emotional strain of strokes on survivors and families after they have left the hospital.

More than half of survivors experienced depression and two thirds anxiety, in addition to lack of confidence and fear of recurrent stroke, the association says.

A high percentage of stroke carers are also reported to have experienced depression, stress, anxiety and frustration. Relationships are proven to suffer, with almost three in ten couples separating or considering it following stroke.

Of more than 2,700 people surveyed at the end of last year, 79 per cent claimed to have received no information or advice on how to cope with the emotional consequences of strokes.

Claire Whitehouse, 23, from Bournemouth, suffered a stroke when she was 19. Following her release from hospital, Claire suffered from depression and anxiety which also led to anorexia. She said:  “I wish someone, when I was in hospital, gave me a big leaflet with everyone I’d need to contact and said This is what you’re going to experience and this is the group you need to go to’. We need some information to tell us what’s going on.

“I can push myself to become physically able, but emotionally it’s much harder.”

In response to the findings, the Stroke Association is calling for psychological and emotional support to be as integral to recovery as the physical rehabilitation. It wants information and support to be accessible to everyone, survivors and carers, who have been affected by the illness.

Parkinson’s sufferers ‘face abuse’ because of symptoms

15 Monday Apr 2013

Posted by a1000shadesofhurt in Neuroscience/Neuropsychology/Neurology

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abuse, discrimination, drunkenness, Parkinson's disease, prejudice, symptoms

Parkinson’s sufferers ‘face abuse’ because of symptoms

Parkinson’s disease sufferers are being subjected to “intolerable levels of prejudice”, a charity has warned, after it was found that two in five of those afflicted with the disease have experienced discrimination because of their symptoms.

Parkinson’s UK said that 41 per cent of sufferers say they have been discriminated against because they suffer from the disease.

And 8 per cent said they have experienced hostility or have been verbally abused in public because of symptoms of the neurological condition , according to a new poll conducted by Parkinson’s UK on 2,900 sufferers.

The degenerative disease affects 127,000 people across the UK, and symptoms can include shaking, slowness of movement and rigidity.

The research, undertaken to highlight Parkinson’s Awareness Week, also found that one in five Parkinson’s sufferers have had their symptoms mistaken for drunkenness.

And almost a quarter of sufferers admitted they avoid going out at busy times of the day because they are wary of people’s reactions to them.

Steve Ford, chief executive at Parkinson’s UK, said: “Our research confirms that far too many people with Parkinson’s are having to battle against intolerable levels of prejudice.

“Life with Parkinson’s can be challenging enough, but when that is coupled with feeling scared to even go out in public for fear of freezing in a busy queue and being tutted or stared at – as over half the people we spoke to do – life can feel incredibly cruel.

“Time and again people with Parkinson’s have to fight against the old stereotype that the condition is just a tremor. This basic misunderstanding has sentenced people with Parkinson’s to a life of hurtful comments, being refused service in shops and even being shouted at in the street all because people have mistaken their speech or movement problems – a common symptom of the condition – for drunkenness.”

Sufferer Ruth Martin, a mother of two from Holmfirth, west Yorkshire, said that since her diagnosis in 2008 she has struggled to deal with how people react to her condition.

The 41-year-old said: “I’ve experienced all sorts of discrimination since I’ve had Parkinson’s, but one incident really stands out. I was having a bad day and was waiting in a queue in a pharmacy. The man standing behind me with his wife said really loudly to her “just stand back a bit love, the woman in front has been drinking”.

“I felt like crying but even so I told him that I had Parkinson’s. The whole shop was listening and there was part of me that wanted to scream out – I felt like I couldn’t go anywhere.

“People have been very confrontational towards me, and I have even been followed round a supermarket by a security guard who obviously thought I was acting suspiciously. I just wish that if people saw others staggering or struggling that it would cross their minds to wonder if they’ve got Parkinson’s.”

My Life: Who Are You?

01 Monday Apr 2013

Posted by a1000shadesofhurt in Neuroscience/Neuropsychology/Neurology

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'face blindness'

CBBC is currently showing My Life: Who Are You? on bbc iplayer.

From the blurb:

Documentary telling the incredible story of 14-year-old Hannah, who has one of the worst cases of face blindness in the UK. Everyone is a stranger to Hannah and she doesn’t know who her mum, dad, sisters and friends are when she sees them. Hannah can’t even recognize her own face and being face blind has cut her off from the world around her.

Hannah embarks on a course of ground-breaking treatment at Bournemouth University where face blindness expert Dr Sarah Bate is trying to understand how the condition works and help people like Hannah finally know who the people around her are. During the course of her treatment Hannah meets another young girl with face blindness for the very first time. Twelve-year-old Laura, who has been face blind since birth. The girls exchange experiences, and even meet one of the country’s top businessmen, Duncan Bannatyne who is face blind too. The girls both vow to be even braver from now on in their interaction with the world.

 

The narcolepsy family’s house of sleep

03 Sunday Feb 2013

Posted by a1000shadesofhurt in Neuroscience/Neuropsychology/Neurology

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asleep, awakefulness, cataplexy, diagnosis, dreams, emotions, family, laughter, narcolepsy, sleep disorder, sleep paralysis, symptoms, treatment

The narcolepsy family’s house of sleep

Fixing appointments with the López family can be tricky. “Come round at midday,” says David López, when I speak to him on the telephone. “If you are lucky we will all be awake.”

They are not. David’s brother Miguel Angel, aged 36, has to be roused from the prone position. Their father Julián is here, as is their cousin Nuria, who keeps house, and admits that she is also finding it hard to stay awake. “This place is getting to be like a hospital ward,” says David as he squeezes his considerable bulk into a chair in their spacious but drab sitting room.

The family’s long, narrow Madrid apartment is a tunnel of doziness. Even at midday only a dribble of daylight enters, adding to the sensation of semi-wakefulness. Our conversation is accompanied by a symphony of yawning, eye-rubbing, occasional drifts into semi-slumber and sudden jolts upright as David, Miguel Angel and Julián snap back – or simply panic that they may have missed something. They do not want to seem impolite.

This gloomy apartment, on a street off Madrid’s small red-light district, is a house of sleep. It is a place of yawning, snoozing and snoring, of eye-rolling, swooning bouts of momentary cataplexy and of wildly vivid, violent dreams. It is also a laboratory for the future where the mysteries of narcolepsy and cataplexy, the twin demons of hundreds of thousands of people, may be revealed.

The López clan is the first-known example of an extended family of sufferers in the world. Rosa Peraita-Adrados, the Madrid doctor whose dogged detective work tracked down the disconnected branches of a unique family that was fractured by Spain’s bloody civil war, believes they could help to find a cure for one of the most puzzling of conditions. Their genes have already provided some of the strongest clues yet about what might be causing this strange and incapacitating sleep disorder.

Doctors once thought of narcolepsy and cataplexy as separate illnesses. The former provokes irresistible bouts of sleep; the latter is a momentary muscular collapse provoked by sudden emotions or laughter. Now it is clear the two things usually go together. David admits to often nodding off halfway through a task. He is so afraid of dropping dishes that he hugs them closely to his chest and walks very slowly to the dinner table. “It is just the fear,” his brother says. “I sometimes want to point this out, or make a joke or something, but that might be worse.” Laughter, he points out, is one of their worst enemies, as it provokes bouts of cataplexy.

Narcolepsy and cataplexy were both first described in the 1880s – and even then the first case of the latter, discovered by German doctor Carl Westphal, was a family problem, shared by a mother and son. About one in 5,000 people are thought to suffer from a condition whose prevalence varies across the globe, with some 12,000 in Britain alone.

Living with the illness can be tough. Sufferers struggle to stay either awake or asleep for a sustained period of time. Luckily for me, the Lópezes are enjoying our chat. “The worst thing is boredom,” explains David, who is 30 and, like his brother, is out of work. “If I am doing something I really like, or a project I am working at, then I can keep going for hours. The blood reaches your brain and keeps you going. But the moment you relax, the blood doesn’t get there and off you go.”

“Often you don’t realise yourself what is happening,” explains Miguel Angel. “Someone says: ‘Hey, you are falling asleep.’ And you say: ‘No. No I am not.’ But you are.” “And then,” adds their father, “it is goodbye and you are out.”

Miguel Angel says that he has to tell any new friends about his condition immediately. “But if you want a girlfriend then you have to find someone who is not only going to listen to you but can also understand what you are talking about.” One symptom, the violent dream, is a relationship-wrecker; Miguel Angel’s are terrifyingly vivid. “I’ve seen him hurl the bedside table across the room,” says David. “Or he is asleep shouting ‘Fire! Fire!'” Once, Miguel Angel grabbed his girlfriend – now ex – by the throat in the middle of the night. “I was upset with her about something and, rather than have it out with an argument, I took it to bed with me,” he says. “It must have been frightening.”

David, meanwhile, suffers persecution dreams. “Above all what you feel is fear, panic and sometimes you even experience your own death. It is like starring in your own horror film.” Julián’s cousin Jesús – another of Peraita-Adrados’s patients – battles with everything from monsters to gypsy gangs, thrashing his limbs around in action-packed fights. But not all the dreaming in the house is bad. Sometimes euphoria strikes instead. “I have found my father chuckling loudly to himself in his sleep,” says David. “Sometimes I too have woken up laughing myself silly. It all depends on your mood.”

Dreams are so lifelike that they play tricks on the memory and sensations of déjà vu – associated with extreme tiredness in non-narcoleptics – are common and intense. “You are convinced you have lived it before,” says David. “In fact, you don’t know what is real and what is not.” Reality can be further scrambled by short episodes of microsleeps and automatic behaviour, when sufferers continue doing routine tasks even though they have actually fallen asleep for a few seconds. “I can walk along the street asleep,” explains Julián. “You hear what is going on, but can’t see because your eyes are closed. It lasts a few seconds and suddenly, bang! You wake up. Perhaps someone touches you, or your head starts falling and you wake up to recover your balance.”

David and Miguel ANGEL’S mother knew she was marrying into a sleepy family. In the working-class Madrid barrio of Lavapiés, their great-aunt Teodora was known as la dormida – the sleeping one. On the other side of Madrid, Julián’s twin brother, Andrés, recalls other members of the family who were famous for their doziness. “Our own mother, Rosa, could walk down the street asleep,” he says. “I don’t know how she avoided being run over.”

Their grandfather Domingo had similar symptoms. Like many narcoleptics, however, Rosa and Teodora worked around their illness, keeping down jobs as cleaners. Andrés, now aged 63, has also held down jobs most of his life – though Peraita-Adrados thinks the night shifts he worked at one stage may have been the trigger for the symptoms of his illness to appear.

Teodora’s daughter Josefina, another sufferer who Peraita-Adrados tracked down in the modest Madrid barrio of Entrevias, says her mother and aunts developed their own mechanisms for controlling the disease. “My mother would fall deeply asleep on the bus or the metro, but somehow always woke up just before her stop,” she recalls. Teodora, Rosa and their sister Patro were known together as las bellas durmientes– the sleeping beauties – and, in their later years, the latter two could often be spotted snoozing together in the sunshine on a bench outside the barrio’s church. “We would all be eating together and suddenly both would be sitting there dozing. I remember Aunt Patro falling into her food,” Andrés tells me. “Yes,” says his cousin Jesús. “Patro was the real number!”

“Our mother was always on the lookout for the illness in us when we were children,” says Miguel Angel. But symptoms often do not appear, or become striking, until the late teens or early adulthood. The brothers first noticed theirs in their mid-20s, though David recalls suffering an intense version of a common schoolchild’s problem – staying awake in class. “I swear I slept through half of them,” he said.

Peraita-Adrados first became aware of the family history when Andrés was referred to the sleep disorder and epilepsy unit she runs at Madrid’sGregorio Marañón University Hospital. “The first time I saw Andrés,” she says, “he told me he had a twin brother, Julián, who had been diagnosed in another hospital. And Julián’s children had also been diagnosed, but no one had put them all together. That was when I realised this might be interesting. There had been very little studying of families, so I got into contact with Professor Mehdi Tafti at the Centre for Integrative Genomics at the University of Lausanne, and said, ‘This is important, why don’t we study it?'”

It took Peraita-Adrados years of trawling through records at various Madrid hospitals to trace the members of the clan and find their clinical histories. Different branches of the family went their own ways during the Spanish civil war in the 1930s, after they emerged from that conflict – like much of the militantly left-wing working class in Lavapiés – on the losing side. Rosa and her husband were both jailed after General Franco’s right-wing nationalists took Madrid in 1939 and rounded up many of those who had defended the city or joined the communist, socialist or anarchist groups that had helped run the Spanish capital over the previous three years. The twins and their four other children were distributed around the family and spent periods of their childhood apart. Their father was a candidate for the firing squad, but ended up with a long prison sentence; Rosa got out of jail earlier and later had children with another man. Death and prison fractured the clan, leaving a plethora of half-siblings and a split Spanish family. “It is true there are a lot of us, but we hardly ever see them. Not aunties or cousins or anyone,” explains David. “Not that I’ve ever felt the need. It has just always been like that.”

Now a family tree starting with great-grandfather Domingo covers 48 people over four generations, with 14 members of the third and fourth generations showing symptoms of narcolepsy-catoplexy. Fewer than 10% of narcolepsy-cataplexy sufferers have relatives with the illness, and only 1 or 2% share it with more than one other person in their family. Certainly no family as extended as this has been available to study before, offering a unique opportunity to reveal some of the genetic secrets of the disease.

“There is evidence that the origin of the illness is autoimmune in the 95% cases which do not have an obvious genetic cause,” explains Peraita-Adrados. Sufferers seem to produce antibodies that attack the hypocretin neurons, stopping or slowing production. Doctors can now extract spinal fluid and test for hypocretin to make a diagnosis. “If the levels are very low, or zero, you know that this individual will eventually have cataplexy,” she explains. The few cases with a genetic origin that have been tested so far, like the López family, also show no hypocretin. “We found Andrés and Julían, the twins, had zero.”

The discovery of the hypocretin deficiency a decade ago was key to understanding the mechanism behind the symptoms. Produced in the brain’s hypothalamus, hypocretin (also known as orexin) plays an important role in a person’s alertness. It also affects feelings of fullness, which explains why narcoleptics often develop strange eating patterns and may become obese.

Now the tests on the López clan provide clues about what may be going wrong at a genetic level. The most important discovery is a mutation on a gene known as MOG, which is shared by all sufferers in the family, but none who do not have the illness. This gene codes for a protein called myelin oligodendrocyte glycoprotein, which plays a key role in maintaining the central nervous system via an insulating material called myelin. The MOG gene has been linked to everything from schizophrenia and bipolar disorder to multiple sclerosis. Researchers are understandably excited by the discovery of a mutation in a family of people suffering narcolepsy with cataplexy. The task now is to try to find a link between myelin in the central nervous system and hypocretin deficiency. “What we are trying to do is complete the chain of the mechanism to work out how this mutation, which provokes a change in the myelin, connects to the part that we know about the symptoms and their mechanisms,” says Peraita-Adrados.

Cataplexy generally, but not always, appears several years after the symptoms of narcolepsy are clear. It comes on suddenly, usually caused by a sudden surge of emotion. Sufferers lose muscle tone from their head downwards – jaw or neck muscles slacken, eyes begin to roll and finally legs start feeling weak and may buckle. “It starts with my mouth being blocked, and then I see that I am beginning to lose strength. I can’t walk. Either I stay still or I sit down,” explains Andrés, who was a first division football linesman and still holds down a weekend job as a referee. “It is as if I had gone out drinking and got totally plastered. Once it happened to me in the Puerta del Sol square and I remember people looking at me as if I was a stumbling drunk.”

Jokes, his cousin Jesús explains, are another problem. Laughter, excitement, intense sadness or strong emotions of almost any kind can set him off. “Your neck feels weak and then your head just tips over.” Even watching soccer matches can be tricky. “I can’t celebrate Real Madrid’s goals,” he says. “Everyone else is jumping up and down and shouting, but I try to limit myself to just clenching my fists in celebration. If I screamed, I’d just fall over.” Miguel Angel asks friends not to rag him. “They don’t always remember. The other day we were helping a friend shift boxes of fire extinguishers and everyone started mucking around and having a laugh. Suddenly the cataplexy came on, so I had to stop.”

Another common symptom is sleep paralysis, when they wake up, but cannot move or speak for up to two minutes. “Obviously your breathing muscles don’t seize up, but the rest of your musculature is completely paralysed,” explains Peraita-Adrados. “It produces huge anxiety.”

Treatment is currently restricted to lifestyle changes or trying to block sleep and cataplexy attacks. “You don’t cure the illness, you fight the symptoms,” says Peraita-Adrados. American patients get amphetamines, while European doctors prescribe other stimulants. The new generation of Prozac-style anti-depressants help control cataplexy, though no one is sure why. Sodium oxybate, used in Europe for anaesthesia in the 1960s, is the only drug that improves nocturnal sleep and daytime symptoms. German investigators have begun to produce hypocretin – a key peptide that narcoleptics lack – and this holds out one hope for a cure, but it is still early days.

In another sleepy apartment on the other side of Madrid, Josefina struggles to get through stories about her children and grandchildren. The love she feels, and the waves of emotion her stories provoke, send her into brief bouts of cataplexy. Her 32-year-old son, also called David – who first noticed the symptoms while serving a drugs-related jail sentence – suffers from them, too. “If I get angry or argue with someone then my legs start to go,” he says. “The last time was three days ago when I got angry with a guy on the bus and started telling him off.”

Standing by Josefina’s front door, as we say goodbye, we talk about pet dogs. “Mine died just three days ago, in David’s arms,” she says. The thought brings on a wave of sadness. Josefina’s eyes roll over, her head tilts forward and she grabs for the doorframe, crumpling against it. Her cataplexy, explains Peraita-Adrados, is among the most severe – occasionally laying her out on the ground. Accidents happen. “I’ve burned myself a couple of times with cooking oil,” Josefina admits. “I’ve seen her fall when she was doing the ironing, even when eating watermelon,” says David.

Many sufferers manage to lead almost normal lives, holding down jobs, pursuing hobbies and raising children. Medicines, siestas and knowing their own limitations all help. The former head of the Spanish patient’s association, for example, regularly drives 300 miles from Alicante to Madrid on his motorbike. Learning to repress emotions is one of the worst side-effects of the illness, says Peraita-Adrados. “Adults can have terrible lives. I’ve seen failed marriages and lots of people with problems at work. I had one patient who was a long-haul truck driver, doing journeys from Madrid to Amsterdam and, of course, he had an accident. He suffered with head injuries, but fortunately his life was saved.” One member of the López clan had been a taxi driver.

“But the worst thing is the children,” she says. “We are now seeing symptoms appear at a fairly early stage. These kids fall asleep in class and get called dozy-heads. They are fat, so they can’t play. And then cataplexy starts to appear. They have to learn to control their emotions. They realise that when they are watching cartoons, for example, they can fall into cataplexy – and they just don’t understand what is happening. I have a lovely little patient – the youngest I have ever seen – a girl called Natalia who is just six years old. She is an adorable, beautiful child. I asked her to draw me her dreams, so she did a lovely little drawing of her going over a bridge, but there was a monster there. I asked: ‘And what is that?’ And she said: ‘Well, if I laugh I could fall and then the monster could come and attack me.’ Her mother says she laughs less and less.”

The genetic study may come too late to help the generation of Julián, Andrés and Josefina – but sufferers like Natalia will benefit if their extended family helps fill in the gaps in the chain of cause and effect. “If by studying us they can get close to finding a cure, then that would be fantastic,” says Miguel Angel. “It would be great,” agrees David. Their father does not join the chorus. He looks as if he is about to doze off on the sofa.

Take a Glimpse Into My World

01 Friday Feb 2013

Posted by a1000shadesofhurt in Neuroscience/Neuropsychology/Neurology

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Parkinson's disease

Take a Glimpse Into My World

I’d like to share with you a glimpse into the world of living with Parkinson’s from a patient’s perspective. Being diagnosed with any chronic degenerative disease can be a shock to the system. Accepting and digesting such news is very individual, and a process that covers a gamut of emotions.

Some hope the diagnosis is wrong or remain in denial. Many sufferers struggle with depression which is a common symptom of Parkinson’s and to be perfectly honest, who in their right mind wouldn’t feel down? Other patients decide to stand up and fight, refusing to let this disease get the upper hand. I am of the latter, have a strong fighting spirit, and decided to do something pro-active. I was diagnosed at age 44, and since then have been campaigning, my aim: offering support to fellow sufferers and caregivers whilst creating greater awareness to a disease who everyone recognises by name, yet actually know little about.

Talking to a group of young women, I asked if they’d heard of Parkinson’s, to which they all energetically nodded their heads. I then inquired if anyone could tell me what the symptoms are. A hand shot up and a lady said “shaking.” I agreed, and looked around the room for any other comments, but there were none. Needless to say I took this opportunity to enlighten the audience.

One of the first symptoms, which usually goes unnoticed as it is gradual and not disturbing, is losing one’s sense of smell, which I must confess, on the odd occasion is not altogether a bad thing! However, missing out on the smells of freshly brewed coffee, cinnamon buns, flowers or any of the hundreds of wonderful aromas is upsetting, but let’s face it, it’s not the end of the world. The symptoms that start to follow are remarkably more disturbing, such as shaking or tremors. There are several types, each as unpleasant and annoying as the next, and strange as it may sound, not everyone suffers from the same symptoms. A resting tremor, as it plainly suggests, when sitting doing nothing one’s hands or legs shake. There are also internal tremors, although not visible to anyone else, the sensation is highly unpleasant. Dystonia, which is the most disturbing for others to watch, and exhausting for the sufferer, as it’s like doing a Jane Fonda work out 24/7 (great for losing weight I might hasten to add!)

Slowness of movement (bradykinesia) is yet another delightful addition to the Parkinson’s malady. I used to be as quick as a flash, a master of ‘multi-tasking’, and thoroughly enjoyed walking everywhere. To suddenly have great difficulty in walking, a change in my gait, shuffling and dragging my left foot, I find incredibly annoying. Not to mention ‘freezing’ on occasion, where one is abruptly rooted to the spot and unable to move. This is also accompanied by a general stiffness and rigidity, particularly in the upper body and arms which no longer swing when walking. Like so many women, I love pretty shoes (pathetic I know!). Sadly long gone are the days when I would wear high heels, which now would be plainly dangerous, for another symptom is poor posture, hunched shoulders, and lack of balance. Annoyingly I’m constantly told by my ever loving family, to sit or stand up straight. As for falling, I’ve lost count of how many times I have fallen, but thankfully I haven’t caused any serious damage to the furniture, but have resulted in some rather colourful bruises.

As if this isn’t enough; insomnia, difficulty in swallowing, choking on food or one’s own saliva, loss of dexterity in fingers, stinging eyes from lack of blinking and losing one’s facial expressions. There are quite a few more symptoms as the disease progresses, but maybe you’ve heard enough for one day!

Parkinson’s, is an unwanted gate crasher, who arrived at a party without an invitation and refuses to leave. It envelopes every aspect of one’s life, just as a blanket of snow carpets everything in sight. However this blanket gives neither warmth nor comfort, but impedes one’s life every day with its many debilitating symptoms, and side effects of medications. I’m still here hidden somewhere inside this rigid slow body, my emotions not visible from behind a frozen mask that used to be a smiling face with expressive eyes. I have little strength left to keep up the fight, as Gaucher and Parkinson’s disease overpower my body. But I have a stubborn streak in me, and refuse to give in, apart from which, I have to write another article for next week’s Huffington Post, so I guess I’ll have to carry on fighting!

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  • Freedom From Torture Each day, staff and volunteers work with survivors of torture in centres in Birmingham, Glasgow, London, Manchester and Newcastle – and soon a presence in Yorkshire and Humberside – to help them begin to rebuild their lives. Sharing this expertise wit
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  • Glasgow STEPS The STEPS team offer a range of services to people with common mental health problems such as anxiety and depression. We are part of South East Glasgow Community Health and Care Partnership, an NHS service. We offer help to anyone over the age of 16 who n
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  • Young Minds YoungMinds is the UK’s leading charity committed to improving the emotional well being and mental health of children and young people. Driven by their experiences we campaign, research and influence policy and practice.

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