When WAFB news anchor Donna Britt announced in late July that she had amyotrophic lateral sclerosis, or Lou Gehrig's disease, it reverberated through her audience. For one Belle River man, a detail of Britt’s story got his attention.
Jerry Fabre, 74, was diagnosed this summer with progressive muscular atrophy, a neuromuscular illness similar to ALS. As with Britt, the ailment could rob him of his motor skills and ability to speak.
Fabre’s wife, Linda, noticed when Britt told her Facebook followers that LSU has a voice banking service that records the voices of ALS patients for use when they become unable to talk. Patients can have high-quality voice recordings digitized for use in communication devices they will be able to control with their eyes. Instead of a robot-like, computerized sound, their voice will be close to what their family and friends know.
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Last week, as Fabre started the recording process, he had Linda on his mind.
“He said, ‘All I want to do is tell her that I love her,’” said Sara Green Mele, speech language pathologist in LSU’s Speech Language Hearing Clinic. “Imagine that coming from a computerized (voice) versus your own voice. ... I think it’s a game-changer.”
Although other medical conditions can affect speech, voice banking works especially well for those with ALS or related diseases, Mele said. Conditions like Parkinson’s can disrupt the cognitive abilities necessary to operate eye-controlled communication devices, she said.
Once diagnosed, patients have a limited amount of time to have their voices recorded, said Yunjung Kim, associate professor. ALS symptoms don’t begin in the same parts of each patient’s body, and the disease progresses faster in some than others, Kim said.
So, Mele said, patients should follow Fabre’s example and act quickly. That may be difficult because of the shock of the diagnosis.
“That’s where we sometimes get into a conundrum, because patients wait, and sometimes you don’t have that latitude to emotionally adjust before you lose some of the time,” Mele said. “It does take a period of time to record your voice.”
It takes six to eight hours to record 1,600 specific sentences to capture the various inflections a person makes with each vowel and consonant sound. That time window, however, doesn’t mean the recording can be knocked out in a day.
“They decline with fatigue over that time, and you have to have consistency with your voice,” Mele said.
Voice banking typically is done in one- to two-hour segments. Because the clinic's Speech Acoustics and Movement Lab has limited staffing and a waiting list, recording can take several weeks to complete.
“We try to get it done the minute you start as quickly as we can,” Mele said. “We’ve had more than one or two patients come in, and by the time they end, they are leaving a completely different person (physically), and that’s over a period of two to three months.”
LSU does the recording in soundproof booths to maximize the consistency and clarity of the voice, Mele said. The result is natural, though not as perfect as depicted by Hollywood, she said. The service costs patients $200.
If ALS patients have already lost their voice, the clinic can record a family member — preferably one with a similar voice.
Located on the bottom floor of Hatcher Hall on campus, the clinic is part of the Department of Communication Sciences and Disorders. It works with all manner of voice issues, from babies having trouble with feeding and swallowing to elderly stroke patients.
“I’ve heard a lot of our patients say this is the best-hidden secret in Baton Rouge, what our clinic offers to a multitude of patients,” said Wendy Jumonville, coordinator of clinical services. "People typically think of children, kids in school, and it’s so much more diverse than that.”