ALS patients communicate for first time in years with new device based on blood-oxygen levels

The 68-year-old woman hadn't been able to talk for a decade. She'd been on a ventilator and a feeding tube since 2007 and hadn't been able to so much as blink an eye to communicate since 2010.

For all anyone knew, she was a human shell, made completely immobile by amyotrophic lateral sclerosis, also known as ALS or Lou Gehrig's disease.

The NIRS/EEG brain-computer interface system is worn by a model in Switzerland on Tuesday. Laurent Bouvier/Wyss Centre/Reuters

Then her family heard about experiments being done at the University of Tübingen in Germany, where researchers were using brainwaves to communicate with paralyzed patients.

They begged Niels Birbaumer and colleagues for help.

Now Birbaumer's team reports they've been able to communicate with four ALS patients, including the woman known as "F," who had been completely locked in by their disease, unable to let anyone know whether their minds were sound and working.

It's not much — just "yes" and "no," deciphered using electroencephalograms (EEGs) and near-infrared light to see where the blood flow was going in their brains. But the patients were able to communicate and, perhaps more important, to tell their families they were happy.

And it doesn't require brain surgery. It works using a cap and a spectroscope.

"Family members of all four patients experienced substantial relief and continue to use the system," the team reports in the Public Library of Science journal PLoS Biology.

"We were initially surprised at the positive responses when we questioned the four completely locked-in patients about their quality of life," Birbaumer said in a statement.

“The striking results overturn my own theory that people with completely locked-in syndrome are not capable of communication."

"All four had accepted artificial ventilation in order to sustain their life, when breathing became impossible; thus, in a sense, they had already chosen to live. What we observed was that as long as they received satisfactory care at home, they found their quality of life acceptable," he added.

"It is for this reason, if we could make this technique widely clinically available, it could have a huge impact on the day-to-day life of people with completely locked-in syndrome."

The team first set the equipment by asking the patients questions whose answers were known, such as "Is Berlin the capital of Germany?"

Then they could fine-tune the computer interface for each patient's pattern of oxygen use when he or she was thinking the word "yes" or "no."

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