Guitarist silenced by ALS is making music again

His fingers fly over the guitar strings, pouring out notes in a torrent of 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.

The video ends and the sound stops. That was Freddie Everett four years ago, before Lou Gehrig’s disease unplugged his guitar. What ALS could not stop was the music – it continued to play in Freddie’s 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 Neurological Institute at The Methodist Hospital in Houston, speech pathologists suggested Freddie try a new system called ERICA –Eye-gaze Response Interface Computer Aid – a camera-aided device that allows him to operate a computer merely by moving his eyeball.

Using this technology, Everett has created enough music for a new album. The CD, titled The Fire of Faith, will go on sale soon in the Houston area.
“(The ERICA system) has been a godsend,” says Everett, 48. “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 Freddie in its own electronic voice.

As ALS closed in around him, Everett felt helpless and depressed. His wife, Annette, says Freddie would sit for hours and stare helplessly at his silent guitars. She would help by writing down the music and lyrics Freddie composed, then even that faded away.

Getting the ERICA device a few months ago enabled Freddie to compose and synthesize his music on a computer. He can also 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, Freddie’s wife and manager. “Hours later, he was still watching basketball and I realized … it was a different game, he had changed the channels.”

Dr. Stanley Appel, chairman of Neurology at The Methodist Hospital, is treating Freddie 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,” explains Appel. “It is great that Freddie is making music again, because it is so important to him.”

More than 5,600 people in the United States are diagnosed with ALS each year, averaging about 15 new cases a day. 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 can affect people in their 20s and 30s. About half of those affected will live at least three or more years after diagnosis; about 10 percent will live more than 10 years after diagnosis.

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

When Appel first met Freddie, 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. Everett 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.

“Our social worker told us, ‘you have to take control of this disease and not let it control you,’” says Annette Everett. “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.”