A new breakthrough suggests that a pair of brain chips could one day allow those in pseudocomas to communicate.
A patient without the most subtle of muscle twitches has used technology to share a few precious words with his family, using little more than an intent to move his eyes.
Similar devices have previously given patients with the fast-progressing condition with the means to send simple messages with extremely limited movements, but researchers say the severity of the man's condition here represents a significant advancement for the technology.
The first study to achieve communication by someone who has no remaining voluntary movement is what ours is about.
A pseudocoma is a condition in which patients cannot walk or talk, but they are still capable of seeing, hearing, tasting, smelling, thinking and feeling.
Communication is severely limited without the ability to move the mouth or tongue. If the eyes can still move, patients can sometimes blink or point with their pupils to make themselves understood, but in some advanced cases, even that basic form of communication is out of reach.
The man in this case was a patient. He had lost the ability to walk and talk after being diagnosed with the condition. A year later, the patient was placed on a breathing machine. He lost the ability to fix his gaze a year after that.
The patient and his family agreed to a cutting-edge experiment because of the extreme isolation.
Before the patient lost the ability to move his eyes, he consented to a surgical procedure that would implant two microchips into the part of his brain that controls muscle movement.
Each chip had 64 needles that could pick up on his conscious attempts to move. The brain activity was translated into a signal by the computer.
Some patients with amyotrophic lateral sclerosis have been able to communicate via a computer typing program with the help of similar brain implants. This is the first time that a patient without the ability to use their eyes has been able to do something similar.
Mariska Vansteensel, a brain-computer interface researcher who was not involved in the study, told Science that people have really doubted whether this was even feasible.
Chaudhary et al. are from Nature Communications.
The setup of the brain implants and the spelling program are included.
The technique took months of training, but once the patient learned how to control the firing rates of his brain signals, he was able to respond to a spelling program and select specific letters, spoken out loud by the program, to form words and even sentences.
For the first time in a long time, the device allowed this man to express himself, despite the fact that it took about a minute for the patient to respond to each letter.
The technology is not perfect. The patient could only say "yes" or "no" about 80 percent of the time. He could only generate words.
The authors of the study say that these poor performances are due to the completely auditory nature of these systems, which are slower than a system based on visual feedback.
The first phrase the patient spelled out was "Thank you" to the lead neurobiologist on his case.
There were many requests for his care, like a mom head massage and I would like to listen to a loud band.
The patient gave his verdict on the device after 243 days after the procedure.
He sent a message to his son on day 251. He asked his child to watch a movie with him.
The patient said his biggest wish was a new bed and that he could go with his family to a barbecue the next day.
I would say it's positive if someone is forming sentences like this. The first author of the study told The Guardian that it is not negative even if it is not positive.
He thanked his sister, who helps care for him, one time when I was there. It was an emotional moment.
The ability to communicate in a pseudocoma comes with a lot of ethical considerations.
Who condones the initial insert? Can a person speak for themselves once they have learned to communicate again? How accurate do these systems need to be before we can fully understand what patients are telling us?
We don't have rules or outlines for this type of technology yet, but if the device is useful for other patients, we will need to start confronting these quandaries.
Giving advancedALS patients their voices back could be a huge medical breakthrough and a great relief for individuals and their families. We have the power to respond to those voices.
Nature Communications published the study.