Research gives ALS patients a new voice

Imagine for a moment that you are unable to move any part of your body except your eyes. You cannot walk, speak, eat, or perform any voluntary movement except blinking. That is what it feels like to a person who has ALS, commonly called Lou Gehrig’s disease. Many patients with advanced ALS cannot perform any voluntary movement except to blink their eyes, though all their cognitive faculties remain intact. The condition also has another, more descriptive name: locked-in syndrome.

USF psychologist Dr. Emanuel Donchin has been studying brainwave functions since 1961. Since 2002 Donchin and his colleagues at USF have been working with ALS patients to study and research a particular type of brainwave that, when properly connected to a computer, will allow those who suffer from ALS to communicate and use a robotic arm to perform small tasks.

Donchin and his fellow researchers study the electrical activity the brain produces when stimulated. Within this electrical activity there is a series of brief responses called the P300 response. Using computer analysis, the researchers can detect these responses and study them.

In order to communicate, the patients are plugged into a brain-computer interface (BCI) and sit in front of a monitor. On the monitor is a 6-by-6 matrix of characters for the patient to choose from. The BCI detects the P300 response and chooses whichever character the patient wants. Patients are able to select about ten characters per minute. To someone with ALS, this opens a door to the outside world.

“A lot of this work was done by grad students working with Dr. Donchin,” said Dr. Abdul Rao, the senior associate vice president of research at USF Health.

“It provides a fertile ground for grad students to work with investigators and researchers like Dr. Donchin.”

Yael Arbel is a post-doctoral student working in Donchin’s lab. She is the leading researcher in the BCI project and is studying human information processing. She collaborates with robotics and engineering researchers to develop the robotic arm that ALS patients use. She is working on improving the accuracy of the arm as well as the speed with which it reacts to a patients demand.

The next step for researchers is to develop a way to bring the system into a patient’s home and to make it easy enough to operate that a family member or caretaker can use it.

Rao said that one of the difficulties with researching this system is the lack of a large commercial market that would typically bring funding from pharmaceutical companies or other health-related organizations.

This is because ALS is rare. According to the ALS Association only about 30,000 Americans have the disorder. Rao said that the BCI system would only benefit about 7,000 patients. He said this is why USF has been providing funding and space at the institutional level.

“What brings national and international notoriety to an institution is outstanding innovation and discovery programs,” he said, “That makes an institution unique and stand out amongst its peers.”