Six years ago Elke Haenisch, now 70, was diagnosed with amyotrophic lateral sclerosis (ALS), a rapidly progressive incurable disease which attacks the body’s motor neurons which control movement until the patient becomes totally paralyzed. In 2012, doctors diagnosed Haenisch as being completely locked-in. Haenisch may appear to be comatose but she is fully conscious. She cannot open or close her eyes without assistance, but she can hear and understand conversations. She can feel discomfort from lying in the same place for so long without being able to move a single muscle. She can be too hot or too cold, but while her family and doctors speak to her, she has been unable to alert anyone to how she really thinks and feels. Until now...

Niels Birbaumer is a 72-year-old neuroscientist at the University of Tübingen who has devoted his life to the search for a way of communicating with patients in Haenisch’s condition. The eye muscles are the last to be affected by ALS and technological advances have allowed many patients in the latter stages of the disease, to operate assisted communication devices using eye movement. But even these muscles eventually fail, and for the patients who are completely locked-in, such devices are useless.

But Birbaumer had a solution. Instead of measuring brainwaves, he would measure brain metabolic changes, monitoring the blood flow in the frontal part of the brain using a technique called near-infrared spectroscopy. Instead of trying to match changes in brain activity to letters, he would ask questions which required a simple yes/no answer.

My theory is that if you are completely locked in for a long period of time, you lose volition or voluntary intention,” he says. “All the intentions, thoughts and wishes that you had, they all have no consequence anymore because nobody knows what you’re thinking. It’s like if you fall in love with a lady, but the lady never responds to you. What do you do? You give up. Without volition these BCIs cannot work because you need intention in order to select a letter.”

Read the full article by David Cox about assisted communication from the University of Cambridge