Beyond The Ice Bucket: Banking The Voice Of ALS Patients
There are approximately 5,600 new cases of amyotrophic lateral sclerosis or Lou Gehrig’s Disease each year in the United States. There is no cure. Those afflicted face the deterioration of their nervous system and loss of control over much of their bodies, including the ability to speak. But that doesn’t mean ALS patients need to lose their voice.
Remember the Ice Bucket Challenge? It was the rage in the fall of 2014. The ritualized dumping of frigid water on the heads of the willing raised awareness about ALS. And more importantly raised over a hundred million research dollars for the American ALS Association.
This Ice Bucket Challenge was at San Antonio’s Our Lady of the Lake University. On this day 12 members of the university community stood in a line and in domino fashion and dumped five gallons of ice water on each other.
While part of a national craze, this challenge had an extra special meaning because one of their own, English Professor David Sanor, had been recently diagnosed with ALS.
You can hear Sanor’s voice in his instructional online videos that he made for his students. Sanor’s specialty is linguistics, covering the power of language, examinations of language form, language meaning, and language in context. That seemed to make it all the more tragic when the ALS quickly progressed and the 65-year old Sanor soon lost his ability to speak as well as his ability to move.
But recently when we went to visit Sanor he was able to greet us in his own voice. It came from a computerized speech augmentation system.
While in the early stages of ALS, Sanor recorded his voice for the computer, a process called “voice banking.”
Karen Blaesing is a professor of communications disorders at Our Lady of the Lake University.
“We’ve had for many years computerized devices for people who do have diseases like ALS so that when they lose the ability to talk they can access the device and through typing out the words the device will speak the words. Previously the voice was a computerized voice. In the process of voice banking we are able to capture or save the person’s voice before that voice can deteriorate through the disease,” she said.
Think about your voice, what it means to speak with your own unique sounds. How that is connected to your identity and your sense of self. Blaesing said being able to keep that for those who have lost so much has incredible meaning.
“When an individual loses the ability to speak it’s really a devastating thing. And to be able to have their own voice in one of these devices, it’s a very profound and powerful moment for the individual as well as their family to have that part of them still available. ”
“It’s beautiful. I love hearing his voice. Makes me a little emotional.”
Nancy Sanor is David’s wife and is at his bed side. She explains the he’s still getting the hang of the technology and working out the bugs.
“I miss being able to talk with him. I think once he gets better at this, it won’t just be utilitarian things like move my left leg. We’ll be able to have real adult conversations again,” she said.
Since Sanor has lost the ability to move, a computer tracks his eye movements and allows him to build words by picking out the letters.
The speech reproduction isn’t perfect. There’s that mechanical pacing. Nevertheless, that’s still David’s voice. And the technology also gives him access to the internet.
“He can go on Facebook, play chess, go on the internet. It really opens up the world to him.”
David Sanor put it best when he said.
“My voice and body don’t work but my mind is fine”
His voice and body don’t work but his mind is fine, and saying it with his own voice gives it that extra meaning.