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You may have heard a few stories about people who are paralyzed from the waist down or even the neck down. You may even know someone who this injury has affected and been able to understand their difficulties firsthand. Now, try to imagine that the only thing you can move is your eyes… if that.

By no means are we comparing injuries or diseases and saying one is less significant than the other. Although this is the terrifying reality for some individuals,  modern advancements in technology may allow people who don’t even have eye movement to still communicate — an impressive and crucial feat for those who suffer from any form of paralysis.

Locked-In Syndrome (LIS)

LIS is a rare neurological disorder present in people who are paralyzed from the neck down and can neither speak nor produce facial movements. It affects males and females alike but tends to occur more in adults than children. Although, we don’t have an exact number of who LIS affects because it tends to go unrecognized or misdiagnosed.[1]

There are two classifications of LIS:[2]

  1. Having Locked-In Syndrome: individuals can move their eyes up and down and blink.
  2. Complete Locked-In Syndrome (CLIS): individuals possess no eye movement.

Fortunately, despite having no physical capabilities, people with LIS are aware of their surroundings. They also have their intellect and reasoning ability, as well as the ability to see and hear.[3]

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What Causes LIS?

  • Brainstem hemorrhage
  • Infarct (i.e., areas of dead tissue because of no blood supply)
  • Trauma*
  • Tumors*
  • Infections*

*Rarer causes of LIS [3]

Potential Life-Altering Technology

To date, researchers have had limited success in communicating with people who have been paralyzed with locked-in syndrome. However, on the more extreme spectrum, it has been impossible to communicate with people suffering from complete locked-in syndrome. But it seems that is about to change!

New Development: A Brain-Computer Interface (BCI)

Before you get put off by some tech-heavy language, let us emphasize what this means: People who cannot speak or move any body part – not even their eyes – in order to communicate with anyone may now be able to with a BCI.

How Does a Brain-Computer-Inference (BCI) Work?

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The BCI that scientists have developed measures electrical activity and oxygen levels in the brain and its blood. To help gauge the individuals’ responses, scientists ask questions the only require ‘yes’ or ‘no’ answers.

“The machine records the blood flow…and calculates how [it] changes during ‘yes’ and during ‘no,’” explained neuroscientists Niels Birbaumer. “And the computer develops an idea, a pattern.”

Ideally, says Birbaumer, “after a while, we know what the patient is thinking, when he thinks ‘yes,’ or when he thinks ‘no,’ and from that, we calculate the answer.”[4]

The Brain-Computer-Inference (BCI) Trial

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On January 31, 2017, PLOS published a study called “Brain-Computer Interface-Based Communication in the Completely Locked-In State.” It involved four people suffering from advanced amyotrophic lateral sclerosis, more commonly referred to as ALS. Two of them already had CLIS and the others were developing CLIS.

Scientists sought to see whether a BCI could help overcome the patients’ non-communicative barrier. To establish an idea or pattern, scientists asked known questions (e.g., your husband’s name is Joachim?) and open questions (e.g., Are you happy?).[5]

Over the course of several weeks and repeated questioning, scientists were happy to find that the patients answered “known” questions correctly seventy percent of the time. For the question “Are you happy,” all four patients consistently answered “yes.”[5]

Based on these results, John Donoghue, the director of Switzerland’s Wyss Center where the study took place said this is a “crucial first step in the challenge regain movement” for people with CLIS. Moving forward, the scientists will continue to develop the BCI technology in hopes of making it accessible to people suffering from strokes, ALS, or spinal cord injuries.[2]

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