Lou Gehrig’s disease, or ALS, is a rapidly progressive, fatal neurological disease that affects up to 30,000 Americans. Eventually every muscle will be affected, including those used for speech. Now, there is a way to bank a patient’s voice for the future.
70-year-old Carole Shearn was diagnosed with ALS nine months ago. In the coming months Shearn will likely lose her ability to speak permanently. However, Shearn is not taking her diagnoses quietly.
“When I lose my voice I will be totally dependent on technology,” she said.
Shearn will use a machine called the Tobii ATI to record, or “bank,” her own voice.
“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,” explained Jocelyn Odlum, Speech Pathologist at the University Of Miami Miller School of Medicine.
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.
“I love using my Tobii,” Shearn said.
The Tobii ATI computer voice system is about 80 percent covered by Medicare and most health insurance policies. If you have ALS and can still speak, contact your local ALS clinic and ask for the speech pathologist on staff for help.
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: ninds.nih.gov)
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: ninds.nih.gov)
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:tobii.com)