With CU help, people with Parkinson’s disease reclaim their voice
By Clint Talbott
Bob Travis opens his mouth and says “aaaaaaaaah.” His voice sounds normal to him, the same one he used in professional life. But his voice as heard on a video recording is soft, slightly more than audible.
Bob has Parkinson’s disease, and, like about 90 percent of those struggling with the condition, he has trouble being heard. Literally.
So he has come to the Department of Speech, Language and Hearing Science at the University of Colorado for speech therapy. In jest, he said he’d come because his wife needed a hearing aid. In truth, though, he had noticed his vocal power fading.
In a video recording made at the onset of his treatment, therapist Jennifer Lewon asks Bob why he is there. “To improve my voice,” he says. He’d noticed his voice getting softer about a year prior, but he thought it might be a cold. Later, he realized he was wrong.
A month after the initial therapy session, Bob appeared in a post-treatment video. Again asked to say “aaaaaah,” his voice veritably booms, loud and robust. He recognizes this himself. Of his wife, he says, “She no longer needs a hearing aid.”
Bob has just finished speech therapy developed by Lorraine Ramig, CU professor of speech, language and hearing science. He has passed with “flying colors,” therapist Lewon says.
Like many clients who undergo the four-week program, he feels less isolated, more visible, better able to participate in everyday activities, like answering the telephone or joining a dinner conversation.
As many as 1 million people in the United States have Parkinson’s, the Parkinson’s Disease Foundation estimates. In addition to the problems they experience with movement and stiffness, about 90 percent have voice problems, Ramig says. But only a very few receive vocal therapy that has been proved to be effective.
“As a faculty member, it’s wonderful, thrilling and all of that to do the science, but what’s also exciting is seeing the application of discovery in real patients,” Ramig observes. “It’s so satisfying to work with a patient and see the effect, the confidence they gain.”
Ramig recalls one client who returned home after treatment, using the voice he’d learned how to reclaim. His wife said, “That’s the voice I fell in love with.”
As Ramig explains it, people with Parkinson’s have a diminished sense of how loudly they speak. If they think they are attaining a normal volume, they may be hard to hear. But if they think they are shouting, they are probably speaking in conversational tones.
In a post-treatment interview, Bob is asked if it feels that he is shouting. “I’m yelling, but to you it should sound normal.”
Lewon, the clinician, adds: “It’s my very favorite program to work on with speech pathology because of the significant changes.”
The roots of the treatment, called Lee Silverman Voice Treatment, date to 1983, when a colleague asked Ramig for help with speech therapy for Parkinson’s patients. She was introduced to the family of Silverman, who was living in Arizona. Their wish: “if we could only hear and understand her.”
Ramig and a student from CU-Boulder set out to develop a treatment protocol, but the prevailing opinion was not on their side. “When we began, neurologists said speech therapy doesn’t work, and it didn’t.”
But Ramig and her collaborator focused on a high-effort vocal-exercise program—an hour a day in treatment sessions plus homework—that proved to be effective. Multiple studies since then have confirmed LSVT® LOUD (now a registered trademark of LSVT Global Inc.) to be effective. Today LSVT LOUD is being delivered by LSVT certified clinicians in more than 40 countries.
The essence of the treatment is to get patients to use that “loud” voice as their own voice, and to cue them to know that the voice they think is loud is the right voice, Ramig says.
She notes that the development of LSVT LOUD is unusual. “Usually, you have basic research that portends changes in treatment. This works in the opposite direction.” Ramig and her colleagues have highly effective treatments and are now working to understand why they are so effective.
Meanwhile, one-on-one treatment is time- and labor-intensive. Ramig notes that there are not enough speech clinicians to help all those who need it. “It would take 90,000 years of available speech therapists just to treat the existing patients,” she notes.
Together with two other speech and hearing scientists (including Cynthia Fox, a CU-Boulder graduate), Ramig founded LSVT Global Inc., a company that aims to bring LSVT LOUD to a broader range of patients via technology.
With funding from the National Institutes of Health and the Michael J. Fox Foundation for Parkinson’s Research, LSVT Global is developing software that could be used in conjunction with clinicians.
“Our vision is 24/7 global access,” Ramig notes.
Ramig, who is also a senior scientist at the National Center for Voice and Speech and an adjunct professor at New York City’s Columbia University Teacher’s College, and her colleagues have also collaborated in the development LSVT BIG physical/occupational treatment as well as an LSVT HYBRID, combined speech/physical therapy for people with Parkinson disease.
“It has been a thrilling adventure, and at the heart of it all is helping patients communicate. There is nothing better! I just wish I had 90 more years to make it happen! A few million dollars’ investment would shrink that goal to only a few years to accomplish the goal!”
Ramig has been notified that she will receive the American Speech-Language-Hearing Association’s Honors of the Association award at the group’s November meeting. As the association notes, the awards recognize “distinguished contributions to the discipline of communication sciences and disorders and are the highest honors the association can bestow.”
Gail Ramsberger, chair and associate professor of CU’s Department of Speech, Language and Hearing Sciences, describes the honor as “an amazing tribute to Lori’s work.”
For more information on LSVT, see www.lsvtglobal.com.