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Neuroscience: Giving a Voice to the Voiceless

Are we communicating effectively? In an age of the smart phone’s omnipresence, ‘unlimited calls & texts’, Skype and FaceTime, it’s an unusual question to pose, yet we all still ponder it. George Bernard Shaw claimed that “the single biggest problem in communication is the illusion that it has taken place”; in 1969, Robert Plant of Led Zeppelin sang that a “communication breakdown” was “driving him insane’” whilst Epictetus, an Ancient Greek philosopher from the 1st Century AD, sagely advised that “we have two ears and one mouth so that we can listen twice as much as we speak”.

What if all you could do was listen, able to perceive and yet unable to move, speak or respond to your surroundings? This is the reality of those with a rare neurological condition known as ‘locked-in syndrome’, wherein the sufferer is rendered entirely paralysed but retains their normal cognitive abilities; consciousness trapped in an inert body. Since the condition was first defined in 1966 by Drs Jerome Posner and Fred Plum, neurologists have not been idle in seeking ways for science to return a degree of normality to sufferers’ lives and grant them the gift of communication.

At the frontier of this new, pioneering research have been the staff and students at the University of Tübingen, Germany. In 2006, a study by Dr B. Wilhelm et al. necessitated a relatively invasive procedure on a ‘locked-in’ patient in order to test the effectiveness of brain-computer interface (BCI) communication, wherein the brain is directly wired to a computer system. The female patient was fully conscious, so the scientists would legally need her consent before they could proceed, yet how were they to know if she agreed when every muscle in her body was completely gripped with paralysis? Utilizing a pH measuring device that was altered to fit within the oral cavity of the patient’s mouth, they asked her to separately imagine the flavours of lemon and milk, then assigned simple but contrasting variables to each: ‘yes/no’ or ‘true/false’. Whenever the patient imagined the sour flavour of lemon, her saliva’s pH became more acidic; when she imagined the blander flavour of milk, her saliva became less acidic. After proving that she could reliably use either response as a substitute for ‘yes’ or ‘no’, the team were finally able to propose the study they had in mind. The patient readily agreed.

Fast-forward just over ten years later, and the team at Tübingen are still hard at work. In early 2017 they announced the trialling of a cap that uses infrared light to detect minute variations of blood flow in different hemispheres and regions of the brain. With the data linked to specially-developed software, the doctors are able to distinguish patterns in response to ‘yes/no’ questions and calibrate the cap in order to grant the wearer a degree of communication. Although the responses available haven’t grown in sophisticated yet, the cap represents a far less invasive solution, and with progress in the field developing at a seemingly exponential rate, who knows what the team might achieve in another ten years?

This isn’t to say that the ingenuity of the scientist’s themselves is the sole method by which those with ‘locked-in syndrome’ can overcome their condition’s restrictions. It is a test, more than anything, of an individual’s will-power and determination in the face of something most of us would consider nightmarish. Perhaps the most famous instance of the condition in popular culture comes from French author Jean-Dominique Bauby, whose best-selling memoir The Diving Bell and the Butterfly (1997) was made into a major motion picture in 2007 (to great acclaim by critics and viewers alike). In 1995, Bauby suffered a massive stroke that placed him into a coma and resulted in the total paralysis of his body, save for some minute movement he retained in his left eyelid. A writer by trade, Bauby was unwilling to let his condition compromise his talents and he set about composing a memoir to lucidly describe exactly what living with the condition was like. How, you may ask? A scribe would recite the French alphabet to him – Bauby would think of a word and then blink for whichever letter he needed next in order to spell it. Each word could reportedly take up to two minutes to spell using this method, and it has been calculated that it must have taken approximately 200,000 separate blinks over a period of ten-months to write the resulting manuscript. Though he died from pneumonia shortly thereafter, it is clear that Jean-Dominique did not let his condition destroy his resolve to carry on with his life.

It is remarkable what human determination, combined with scientific ingenuity, can achieve, leveling even the most insurmountable of problems to a challenge instead of an impossibility. Open communication is something we all desire within our everyday lives: with friends, family, colleagues, and strangers. It is from an understanding of this need that neurologists are determined to commit ‘locked-in syndrome’ to the dusty pages of an antique medical encyclopedia, and we will most likely see its end within our lifetime.

About the author

Alice Instone-Brewer

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