'Banking' your voice

Lou Gehrig’s Disease, or ALS, is a rapidly progressive, fatal neurological disease that affects up to 30,000 Americans.

Eventually, the disease affects all muscles and makes speech impossible.

Carole Shearn, 70, was diagnosed with ALS nine months ago.

“When I lose my voice, I will be totally dependent on technology,” she said.
In the next few months, Shearn will likely lose her ability to speak permanently. However, Carole is not taking her diagnoses quietly.

A new piece of technology gives her the opportunity to bank her voice for the future. It’s known as the Tobii ATI.

"I think the sentimental value of (Shearn’s grandson) being able to hear his grandma's voice is something that would really mean a lot to him," said Shearn’s daughter Jennifer Wagner.

But the technology is not perfect.

"Sadly I've probably seen 50 to 80 patients since this clinic started and out of that probably two have been able to bank their voice," said speech pathologist Jocelyn M. Odlum.

Physicist Stephen Hawking did not bank his voice, so he uses a synthesized voice.

Like Hawking, Shearn will eventually lose mobility and will use her eyes to prompt the Tobii to speak for her. It will even call 911.

The Tobii ATI Computer Voice System costs about $3,900, but Medicare and most health insurance policies will cover about 80 percent.

If you have ALS and can still speak, contact your local ALS clinic and ask for the speech pathologist on staff for help.


REPORT: MB# 3668

BACKGROUND: Amyotrophic lateral sclerosis (ALS), sometimes called Lou Gehrig's disease, is a rapidly progressive, invariably fatal neurological disease that attacks the nerve cells (neurons) responsible for controlling voluntary muscles (muscle action we are able to control, such as those in the arms, legs, and face). The disease belongs to a group of disorders known as motor neuron diseases, which are characterized by the gradual degeneration and death of motor neurons. (SOURCE: http://www.ninds.nih.gov/disorders/amyotrophiclateralsclerosis/detail_ALS)

SYMPTOMS: The onset of ALS may be so subtle that the symptoms are overlooked. The earliest symptoms may include fasciculations, cramps, tight and stiff muscles (spasticity), muscle weakness affecting an arm or a leg, slurred and nasal speech, or difficulty chewing or swallowing. These general complaints then develop into more obvious weakness or atrophy that may cause a physician to suspect ALS. (SOURCE: http://www.ninds.nih.gov/disorders/amyotrophiclateralsclerosis/detail_ALS)

TOBII ATI: As the disease progresses, many of the individuals with ALS will eventually lose control over their hands, arms and speech. Tobii's eye tracking technology enables computers to determine precisely where a person is looking. Instead of using a keyboard and mouse to type, a person with ALS can simply use their gaze to type words that are turned into speech, or connect with others through e-mail, Facebook and the Internet, making independence easier than ever before. With the help of eye control they can still express feelings of anxiety, fear, joy and love, like saying "I love you" to family and friends. (SOURCE: http://www.tobii.com)

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Jocelyn M Odlum, M.A., CCC-SLP
Speech Pathologist
Dept. of Otolaryngology
University of Miami
Miller School of Medicine

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