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,” Shearn told Ivanhoe.
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,” Jocelyn Odlum, Speech Pathologist at the University Of Miami Miller School of Medicine, told Ivanhoe.
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.