ERICA Eye-tracking computer empowers ALS patient to continue making music

“We emphasize quality of life, making understand how to make every momen Freddie is making music again, becausGuitaristsilenced by ALS ismakingmusicagain

BY DENNY ANGELLE

The video ends and the sound stops. That was Freddie Everett four years ago, before amyotrophic lateral sclerosis (ALS) unplugged his guitar. What ALS could not stop was the music — it continued to play in his head.

Today, Everett is a different picture. He is wheelchair bound and it is difficult for him to speak and at times, breathe. But he has found a way to create and play his music once again.

While undergoing treatment and evaluation at the Methodist Neurological Institute, speech pathologists suggested Everett try a new system called ERICA — Eyegaze Response Interface Computer Aid — a camera-aided device that allows him to operate a computer merely by moving his eye.

Using this technology, Everett has created enough music for a new album.

“(The ERICA system) has been a godsend,” says Everett, 49. “My music is the most important thing in the world to me, and I can make my music again.”

Wearing a Jimi Hendrix T-shirt, he demonstrates how the ERICA system allows him to maneuver around a computer screen, playing tic-tac-toe or pressing buttons that in turn control other devices. If needed, the system can even talk for him in its own electronic voice.

As ALS closed in around him, Everett felt helpless and depressed.

His fingers fly over the guitar strings, pouring out notes in a torrential melody. The right hand shoots into the air, but the music still tumbles out, all tuneful, all picked by lightning fingers along the fret. The crowd explodes with applause. All hail Freddie Everett, guitar god.

Freddie Everett was well known in Houston and Texas for his fluid and super-fast guitar skills.

His wife, Annette, says he would sit for hours and stare helplessly at his silent guitars. She would help by writing down the music and lyrics he composed, then even that faded away. Getting the ERICA device a few months ago enables Everett to compose and synthesize his music on a computer. He also can use the system to control his environment — turning the lights on and off, changing channels on the TV. “He was watching a basketball game the other day and I left the room,” recalls Annette, who was Everett’s manager. “Hours later, he was still watching basketball and I realized … it was a different game, he had changed the channels.”

PHOTO BY ANGELA WALLING

ng our patients and their families nt count” Appel explains. “It is great that se it is so important to him.”

Treatment and Hope

Dr. Stanley Appel, chairman of Neurology at The Methodist Hospital, is treating Everett. Over his career, Appel has cared for more than 3,000 ALS patients — more than any other physician in the country — and he knows that keeping the mind active and strong is vital, even while this disease slowly consumes the body.

“We emphasize quality of life, making our patients and their families understand how to make every moment count,” Appel explains. “It is great that Freddie is making music again because it is so important to him.”

According to the ALS Association, about 5,600 people in the United States are diagnosed with ALS each year, averaging about 15 new cases a day. Because ALS patients are living longer, as many as 30,000 Americans can have the disease at any given time.

The disease can strike anyone, mostly between the ages of 40 and 70, but it also can affect people in their 20s and 30s. About 20 percent of those affected will live at least five or more years after diagnosis; about 10 percent will live more than 10 years after diagnosis. Generally the disease occurs in higher percentages as people grow older.

Appel created the MDA (Muscular Dystrophy Association)/ALS Research and Clinical Center at Methodist, and it has become one of the world’s top centers for the treatment of these neurological disorders. The first multidisciplinary clinic in the United States dedicated to patient care and research for ALS patients and one of the country’s largest, Appel’s clinic is the standard by which all other MDA/ALS clinics are modeled.

“We have been doing this for about 25 years, and our team has been together almost that long,” Appel says. “The thing about ALS patients is that they are all warm, courageous, nice people. … they want us to make a breakthrough, find a cure, not just for themselves but to help others.”

There is no cure for ALS, but researchers including Appel are working to identify risk factors that can help with early diagnosis and possible causes.

Appel believes the breakthrough that could give a clue to a cure or a cause could be around the corner. He recently participated in a research project that revealed genetic changes in a brain with ALS, and the paper Appel co-authored appeared in the New England Journal of Medicine.

Gathering research knowledge over decades, Appel persists in his belief that the immune system can play a significant role in the development of ALS. Many who at first criticized this approach are now coming around, as separate independent studies are beginning to reinforce Appel’s theories.

“From the very start, we involve the family of a patient in their care because they are very important to the patient as he or she progresses through ALS,”

Appel explains. “Families caring for an ALS patient can’t afford to burn out, even though they’re going 24 hours a day. We work hard to provide them a sense of hope that we can find some way to treat this condition.”

Freddie Everett continues to make music with the use of the ERICA system. The device tracks eye movement with an infrared camera and sends the information to a computer.

Quality Of Life

When Appel first met Everett, the musician wanted to know why he was having trouble playing a guitar. Everett was legendary in Houston and Texas music circles for his fluid and super-fast guitar skills. He and his band opened for Ted Nugent, Alice Cooper and Sammy Hagar. He recorded with Double Trouble, formerly Stevie Ray Vaughan’s band.

Beside his prodigious musical skills, Everett was also renowned for his onstage showmanship, influenced by 1960s guitar legend Jimi Hendrix. In 2004, Everett was forced to stop playing his guitar after 25 years because his fingers refused to move where he wished. Two years later, Appel diagnosed him with ALS.

“All of us have a different definition of quality of life,” says Appel, “and for Freddie his quality of life is all about music. He made a lot of people happy with his music, and we wanted to find a way to help him preserve that as long as we could.”

Both of the Everetts were excited to first hear about, then test the ERICA system. It has made a real difference in his attitude toward his illness, Annette says.

“He has his music back. He has something to look forward to once again,” she says. In June, he received a tracheotomy to help his breathing.

“Our social worker told us, ‘you have to take control of this disease and not let it control you,’” she says. “I tell Freddie everything’s in God’s hands. … I think it’s a gift from God that Freddie is able to make music again.”

Freddie agrees. “My music has always given me happiness. … I want to share my music with others and give them happiness, joy and peace.”

When Everett’s ALS symptoms first appeared, his son Jesse, 22, who is also a guitarist, played with the Freddie Everett Band to fulfill their commitments. Then he went back to his own music and his own heavy metal band.

But lately, Annette says, Jesse has come back to his father’s music. “Jesse is playing Freddie’s music more and more,” she says. “He is kind of a mini-Freddie. … he has his father’s mannerisms and style, and many people who see him play remark on the resemblance. Jesse is going to keep his father’s music alive.”

Eye Response Interface Computer Aid (ERICA) allows people who can’t move or talk to communicate. The device tracks eye movement with an infrared camera.

How ERICA Works

Step 2. The distance and direction of the glint from the center of the pupil determines where you are looking. Step 1. Infrared light from the camera shines into the eye, making the pupil glow and creating a bright spot, known as the glint. The camera then takes a picture of the eye and sends it to the computer.

Glint

Step 3. You click by staring at what you wish to select. With an on screen keyboard, you may type and speak the letters you focus on.

W E R S D X

Fast Facts ■ Medicare approved ■ Less than 10 lbs. ■ Mounts to wheelchairs ■ Runs for six hours off its battery ■ Communication and Computer

Access – Speaks what you type – Controls any software in Windows – Allows voice banking – Provides integrated e-mail and

Web browsing

IllustrationbySheshe Giddens, The Methodist HospitalSystem