Computer opens door to communication for woman with ALS
By Jane Lerner
The Journal News • August 5, 2008


Valentyna Chernyayeva, right, a home health aide, puts a new device on Catherine Wolf's head that will send signals to her computer, enabling the former IBM scientist to communicate. Wolf, a resident of Katonah, has amyotrophic lateral sclerosis, also known as ALS or Lou Gehrig's disease, a neuromuscular disease. (Frank Becerra Jr./The

KATONAH — Catherine Wolf sits in her wheelchair, motionless, her silence punctuated only by the soft whooshing sound of the ventilator that forces air in and out of her lungs.

Amyotrophic lateral sclerosis, also known as ALS or Lou Gehrig's disease, a fatal neuromuscular disease characterized by progressive muscle weakness, long ago robbed her of her ability to speak or move just about any part of her body.

But when an aide puts a device on her head that looks like a Spandex bathing cap with wires attached, Wolf is able to communicate her needs, hold a conversation and even write poetry - all without moving a muscle.
The experimental device is a brain-computer interface, or BCI -a tangle of electrodes attached to a user's head. The electrodes record signals from the brain that are sent to an amplifier and processed by a computer.

The device doesn't read minds; rather, it allows people to use the brain's electrical signals to control the movements of a cursor on a computer screen.

By pointing the cursor at a symbol, letter or word, people like Wolf who cannot move any part of their bodies can communicate with the world.

Wolf is one of three patients at the Center for Rehabilitation Technology at Helen Hayes Hospital who are testing the device as part of a research study conducted by the Wadsworth Center, a state-run public health laboratory in Albany.

For researchers such as Theresa Vaughan, one of a group of scientists at Wadsworth who have been experimenting with brain-computer interface for years, having a severely disabled person use the device in a home setting is a chance to find out if it can be used successfully in the home.

"We know it works in the laboratory," Vaughan said as she watched Valentyna Chernyayeva, a home health aide, set up the BCI system in Wolf's living room. "Now we need to know if it can be used in the home by people who have no special training."

But for Wolf, a former IBM scientist who did research in the area of human-computer interaction before illness forced her to retire, the bulky-looking cap with its tangle of wires provides hope that she will be able to communicate even after the disease robs her of the little movement she has left.

A salt solution is rubbed into Wolf's scalp to enable the machine to read the electrical signals sent by her brain before the cap is put on her head. Letters appear on a computer screen and a light flashes on each letter. To use the device, Wolf must concentrate her thoughts on the letter she wants to select.

To make sure that the machine is reading her brain signals accurately, a test word appears in the screen in front of Wolf for her to replicate: "river."

Wolf looks at the screen and first an R, then an I, followed by VER appears on the screen.

The 63-year-old Katonah resident then engages in a favorite pastime: poetry.

"The cracks in my father's hands come out in winter. Rivulets of blood stream across his hands."

The words appear on the computer screen, even though Wolf does not move at all.

She fixes her attention on the screen again and watches as the letters flash before her.

"I am a quadriplegic, but I can type, thanks to the Wadsworth Center and Helen Hayes Hospital," Wolf said, using the BCI to identify letters on a keyboard that were then translated into sound.

The BCI system is still a work in progress. Wolf knows that her experiences will help researchers make it easier for others to use.

"Now the Wadsworth team is working to improve the basic technology, which ... is slow but accurate," she said via e-mail.

She hopes that the next step for researchers is to integrate it with the Windows operating system and add features that will let it operate with programs, including e-mail and a Web browser.

Wolf is still able to move her eyes and one facial muscle. That one muscle near her eyebrow enables her to use an infrared switch that controls a computer keyboard -allowing her to type on a computer screen and access e-mail.

But she knows that as her disease advances, she might lose control of her eye movement and her one functioning facial muscle.

"My goal for her is to use assistive technology to maintain her level of independence and keep her ability to communicate and access a computer as long as possible," said Debra Zeitlin, director of the Center for Rehabilitation Technology at Helen Hayes, a state-run rehabilitation hospital.

Technology has enabled Wolf to maintain a connection to the world since her condition was first diagnosed in 1997.

But Zeitlin knows that at some point all the technology currently available will no longer be of use to Wolf and others in the last stages of ALS.

"We are always trying to find a solution for our patients," she said. "We never like to give up."

Zeitlin had heard about the brain-computer interface work at Wadsworth and contacted the center to see if it could be made available to Wolf and other patients.

She and two other people in the advanced stages of ALS were fitted with the BCI device in March.

Researchers want to do a larger study. In addition to helping ALS patients, they hope the BCI can be used by people who have "locked in" syndrome - a condition caused by a brain-stem stroke -as well as by people paralyzed from spinal cord injuries.

Experimental devices such as BCI systems give hope to people with illnesses that severely limit the ability to communicate, said Sharon Matland, vice president of patient services for the ALS Association, a national advocacy group.

The group has been following the progress of different researchers who are developing BCI systems.

"The goal is to bring BCI to people when they no longer have any movement," she said. "That's one of the biggest fears of people with ALS - that they will lose all ability to communicate."

Wolf is counting on the BCI system to give her a voice.

"I think the brain-computer interface is useful now as a research prototype to people who have no other means of communication," she said via e-mail. "What is more human than the ability to communicate?"

Reach Jane Lerner at jlerner@lohud.com or 845-578-2458.

http://www.lohud.com:80/apps/pbcs.dl...=2008808050362