New technology helps ALS patient preserve his voice

AKRON, Ohio – An incurable, degenerative disease is slowly robbing David Stuczynski of his ability to walk, talk and breathe.

But the Akron-area husband and father has made sure ALS won't take away his voice.

With the help of the University of Akron's Audiology and Speech Center and a research project in Delaware, Stuczynski can continue to speak with a computerized voice that sounds nearly identical to his own.

If he eventually can't talk as the neurodegenerative disease progresses, Stuczynski can use the ModelTalker custom speech synthesizer software with a device that tracks his eye movements to let him select the words he wants to say.

Stuczynski has three important reasons for preserving his voice: his 15-year-old son, Daniel, and his daughters, Eleanor, 17, and Evie, 11.

"I want my kids to hear my voice," he said.

Stuczynski, 53, is among several hundred patients worldwide who have recorded their speech to create a unique, synthetic voice through ModelTalker, developed at the Nemours Alfred I. duPont Hospital for Children in Wilmington, Del.

Developers found interest in using the speech synthesis software among adults with ALS, throat cancer or other conditions that can affect speech, he said.

Participants in the ModelTalker project record themselves reading 1,600 sentences. The recordings then are shared with the Nemours Speech Research Lab, which creates a personalized database of small sound units used to form any words.

The software can be used with speech-generating devices that are controlled by typing or eye-tracking technology, depending on the patient's needs.

"People write to let us know how happy they are that they're able to preserve a voice for their children or grandchildren or to use in their profession," Bunnell said. "We had at least one minister who was delivering sermons with his voice."

Speech-generating devices, which cost about $15,000, often are covered by health insurance.

Over the course of several weeks last summer, Stuczynski spent hours in a soundproof booth at the University of Akron's audiology and speech center with Boarman recording the required sentences for ModelTalker.

Stuczynski recently returned to the university to try a speech-generating device with his new ModelTalker voice for the first time. He grinned as he heard his first words: "How are you?"

"That sounds really good," he said. "Wow! That's amazing."

Over the past year, Stuczynski has started using a wheelchair to get around and a machine to ease his breathing. He still speaks without assistance.

"Now I have my voice in a bank," he said. "If I type the words, they come out — not like a robot but my voice.