I chose this article as there is currently a lack of research and availability of good AAC devices for patients with Parkinsons disease and this device is quite promising for patients with severe speech disorders.
Terri Weymouth remembers the day her boss told her she was talking too slowly when answering the office phone. For several years Weymouth had noticed some unusual physical changes.
“My left hand was not doing what it should be doing. My speech was getting slower and slower,” said Weymouth, of Carmel. Finally in 2009, she was told by doctors what was wrong. She had Parkinson’s disease, a degenerative neurological disorder that affects 1.5 million people in the United States. About nine in 10 people with Parkinson’s have changes in their speech, including talking in a near-whisper, talking too fast or, less commonly, too slow, and mumbling their words.
Increasingly, Weymouth found people would finish her sentences. She dreaded when someone asked the Cincinnati native where she grew up because she had difficulty saying the word. She eventually started just saying Ohio. The speech problems were embarrassing. “I would talk less. As a buffer, I took to email.”
Then a year ago, Weymouth enrolled in a Purdue University research study of a new communication device called SpeechVive, designed specifically for people with Parkinson’s to help increase speech volume and normalize pace. Weymouth’s life was transformed.
The technology, developed by Purdue professor Jessica Huber, is now available to the public, thanks, in part, to nearly $700,000 in capital investment from Fort Wayne private equity investment company Ambassador Enterprises.
To understand how SpeechVive works, one has to understand the Lombard effect, said Huber, who teaches and conducts research in the Speech, Language and Hearing Sciences department at Purdue. The Lombard effect refers to the involuntary tendency of someone to increase speech volume and effort when talking in a noisy environment.
The device, worn in one ear, is programmed to produce a babbling sound as soon as the person begins to speak. For the person without Parkinson’s, hearing the noise can be distracting, even irritating. But when individuals with Parkinson’s begin to speak while wearing the device, “They talk louder immediately. It’s a reflex,” Huber explained, noting for those who speak in a rapid pace, “It takes using the device for several weeks before they talk slower.” In all her research with the device, not one person with Parkinson’s has ever complained about the babbling noise in the ear.
The current device is not the first one Huber developed and Purdue biomedical engineers built. The prototype was much larger. Huber said the final device is the result of a decade of research and tweaking. The technology is licensed through the Purdue Office of Technology Commercialization.
SpeechVive, formed in 2011, is providing free demos of the device and training for speech pathologists at National Parkinson’s Disease Foundation’s Centers of Excellence and to VA Medical Centers, said SpeechVive CEO Steve Mogensen, the lone employee of the Lafayette-based company. A Franklin company manufactures the devices.
The rechargeable devices are programmed to each individual, Mogensen said, noting “It collects data. The data is downloaded, and the speech pathologist can see if the device is providing benefit and how much.”
In a National Institutes of Health-funded clinical trial of the device, 90 percent of subjects with Parkinson’s spoke louder and more clearly when using the device. Results of the study were published early this year in the Journal of Communication Disorders.
It usually takes eight to 12 weeks to achieve maximum benefit. Results show some people may have semi-sustained benefit even if they quit wearing it for a time. Weymouth stopped wearing hers for a time. After several months, she noticed her speech was slowing again, and people were having more difficulty understanding her, so she’s taken to wearing it again.
It’s larger than most hearing aids, but Weymouth said people think it’s a blue tooth. Her only wish: “I want it in a zebra print,” she said.
The device costs $2,495 and is currently not covered by Medicare or other insurance, though the VA is covering it, Huber said.
“I’m hoping it will get covered eventually. It’s essential for communication and is less expensive than 20 to 30 speech therapy sessions,” Huber said. Speech therapy is the only other option to try to improve Parkinson’s patients’ speech issues. The problem is patients may improve when verbally cued by the therapist. But when they leave the session and no one is cueing them, they often revert to their soft, fast- or slow-paced, mumbled pattern. SpeechVive provides a ready, voice-activated cue.
SpeechVive is not yet available in Fort Wayne, but Brad Miller(cq), senior operations manager for Ambassador Enterprises, said he hopes speech pathologists in the area will get training in the near future so they can offer it to their patients with Parkinson’s.
“This was a great project, a great idea that seemed to meet a real need and is offered by a great team,” Miller said. “We have made investments in early stage technologies before, but the main interest from our side is the device itself and what it is designed to do.”
Weymouth, a cosmetic sales rep, has had people ask her if she would pay for the device out of pocket if insurance didn’t cover it or if she had not received one through participating in the clinical trial. She tells them, “In a heartbeat!”
