Mind-Reading Technology Could Offer Locked-In Patients a Way to Communicate
A new neurological study may offer individuals affected by locked-in syndrome a chance to communicate with the outside world.
Researchers set about teaching three women and one man suffering from complete locked-in syndrome how to use a system that uses maps the brain’s oxygen supply.
Whenever one area of the brain is more active than another, that region receives more oxygen. By using a special cap to detect blood flow and oxygenation, imaging software can highlight in broad strokes which areas of the brain are in use at any one time. In this case, such an approach could allow researchers to interpret answers to very targeted questions.
Employing this technique, researchers succeeded in communicating with locked-in syndrome patients. But what exactly is locked-in syndrome — and why this technology being hailed as a potential milestone?
What is locked-in syndrome?
Locked-in syndrome, or LIS, is a rare neurological disorder sometimes referred to as cerebromedullospinal disconnection or pseudocoma. According to the National Organization for Rare Disorders, locked-in syndrome is characterized by a “complete paralysis of all voluntary muscles except for the ones that control eye movements of the eyes.” People with this rare condition are conscious and awake — and usually possess normal cognitive capacities –but they completely lose the ability to move or speak.
The syndrome’s origin can be traced to brainstem damage, usually in an area known as the pons. This part of the brainstem contains important pathways that allow the brain to communicate with other key areas of our body. People with locked-in syndrome usually have suffered from damage or trauma to the pons, interrupting all of the brain’s pathways that signal for limb movement, facial expression and speech.
Most commonly, locked-in syndrome results from blood clots and strokes, but the it can also be caused by infections and nerve inflammation. The syndrome can also signal the final stages of a condition known as ALS, which readers might remember from the infamous Ice Bucket Challenge.
Locked-in syndrome sufferers become bedridden and completely reliant on caregivers for their most basic needs. In rare cases, certain sufferers have recovered some of their capabilities, but most do not. Generally, the condition is an impairment that remains with individuals for the rest of their lives.
Through standard therapies, however, locked-in syndrome sufferers can maintain a good quality of life. Innovations like coded speech through eye movement can also offer some communication with the outside world.
However, this kind of communication hinges on voluntary eye movement, an ability that is not guaranteed among ALS sufferers or others with complete locked-in syndrome. Thus, scientists have aimed to bypass eye movement as a communicative tool and instead concentrate on brain scans for more accurate and adaptable ways to interact with CLIS sufferers.
And now, for the first time, researchers believe they have obtained concrete results from this approach.
Researchers take steps to unlock the condition
Over the course of a year, researchers worked with patients until they were confident with the imaging technology adapted for this trial. Then, they began asking patients both personal and general knowledge questions that had a “yes” or “no” response. The brain-computer interface was able to capture the respondents’ answers correctly about 70 percent of the time — a high enough threshold for the researchers to conclude that it demonstrated a meaningful ability to communicate.
One finding had a particularly deep emotional resonance: All four respondents, when asked whether they felt happy overall, repeatedly answered “yes.” This fact demonstrates that although locked-in syndrome can be distressing and overwhelmingly limiting, with the proper care, sufferers can maintain a decent quality of life.
Lead researcher Niels Birbaumer put the study into perspective, explaining: “It’s the first sign that completely locked-in syndrome may be abolished forever, because with all of these patients, we can now ask them the most critical questions in life.”
This is the first time we’ve been able to establish reliable communication with these patients and I think that is important for them and their families. I can say that after 30 years of trying to achieve this, it was one of the most satisfying moments of my life when it worked.
It’s crucial to stress that there are still many steps to take before this kind of approach can be truly viable for wider release. Researchers must improve the confidence level of the interface so that they can be sure they receive accurate answers from the patients they communicate with. That said, this study offers a vital opportunity to understand LIS patients’ wishes and engage in meaningful communication.
In the future, Birbaumer and his team aim to create a system that allows patients to be more proactive in their communication. They will also work on ways to make this technology portable, all in an effort to increase each patient’s quality of life.
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