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.
Seventy-year old Carole Shearn was diagnosed with ALS nine months ago. She will likely lose her ability to speak; however, Shearn is not taking her diagnoses quietly.
“When I lose my voice, I will be totally dependent on technology,” Shearn 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,” said Jocelyn Odlum, speech pathologist at the University Of Miami Miller School of Medicine.
Physicist Stephen Hawking used 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 costs about $3,900, but Medicare and most health insurance will cover about 80 percent. The closest ALS clinic is at the Neuroscience Institute at Virginia Mason.