Bill Hustrulid is a storyteller.
He also was an engineering professor for many years, and a strong voice has been crucial to his work as a lecturer.
The Spokane resident is retired now – though he keeps himself busy authoring books – but maintaining his speaking abilities is as important as ever.
Hustrulid, 75, was diagnosed with Parkinson’s disease three years ago, and started noticing his voice getting weak – a symptom of Parkinson’s – when his wife began frequently asking him to repeat himself.
“It’s a very complicated disease,” he said. “Some days it’s better than others.”
Parkinson’s disease is a chronic and progressive disorder of the central nervous system involving neuron damage in the brain that causes dopamine levels to drop, impacting a person’s ability to control their movements. The cause is unknown, and while there is no cure, treatment options are available to manage the symptoms.
“It affects me every day,” Hustrulid said, adding, “In terms of having depression or feeling sorry for myself, I don’t.”
Every week, he participates in a therapy program brought to the Spokane area by Doreen Nicholas, a speech-language pathologist at Eastern Washington University, after she underwent training by Parkinson Voice Project, a Texas-based nonprofit dedicated to helping Parkinson’s patients retain their ability to speak.
It consists of two parts: Speak Out, a series of one-on-one sessions that help the patient regain their voice, followed by the Loud Crowd, weekly group therapy that helps them retain it.
Nicholas, director of the university’s Hearing and Speech Clinic, says the training she received from Parkinson Voice Project helps those with the disease regain and maintain their voice, while also offering graduate students there a valuable learning opportunity.
“It ends up being a win-win,” she said.
Since fall 2013, about 50 graduate students have worked with Parkinson’s patients, either in a group or individually. At the same time, it’s making a positive impact on the lives of patients who participate.
People with communication difficulties might avoid social interaction, Nicholas said, “and therefore their quality of life is reduced.”
According to the Parkinson’s Disease Foundation, symptoms can include tremor of the hands, arms, legs, jaw and face; bradykinesia or slowness of movement; rigidity or stiffness of the limbs and trunk; and impaired balance and coordination. About 90 percent of people with Parkinson’s disease will experience changes in their voices or their ability to make speech sounds.
“They think they’re loud, they think they’re talking at a conversational level,” Nicholas said. “They’re just not aware, so we have to recalibrate how they hear themselves.”
Speaking with intent is central to the therapy. At the Hearing and Speech Clinic, patients practice counting and reciting vocalization exercises with intent, and also work on saying phrases and sentences with intonation, because those with Parkinson’s often talk in a monotone manner.
“We know that if they speak with intent, with an increased loudness level, their intelligibility increases, so others understand them more,” she said.
The program consists of 12 individual speech therapy sessions conducted by a speech-language pathologist trained by Parkinson Voice Project. Together, the patient and speech-language pathologist work through a series of speech, voice, and cognitive exercises outlined in a workbook provided by the nonprofit.
The primary goals of Speak Out are to strengthen the muscles used for speaking and swallowing, and to teach patients how to speak with intent and deliberation, according to Parkinson Voice Project.
Upon completing Speak Out, patients enter the maintenance phase of treatment. Because of the disease’s progressive and degenerative nature, maintaining the voice’s strength can be a challenge, but the Loud Crowd group promotes ongoing vocal practice, accountability, support and encouragement.
“You usually know if they’re not practicing, and they know we know,” Nicholas said. “We have sound level meters and we’ll take measurements, so we keep them accountable.”
Ideally, they should go through the workbook twice a day, she said.
“It’s just like exercising your body,” she said. “You’ve got to exercise your voice to keep it strong, especially as the disease progresses.”
Parkinson Voice Project CEO Samantha Elandary said people usually use an automatic system – called the extrapyramidal system – to speak, but because that system depends on dopamine, Speak Out taps into the intentional system – the pyramidal system – because it doesn’t rely on dopamine.
When patients learn about this other system, “their speech becomes louder, clearer, more expressive. It’s really amazing.”
“Speech is a highly automatic behavior,” Elandary said. “People don’t really talk about the intentional system, but it absolutely works.”
She said the two-part therapy is about regaining their voice, then maintaining it over time.
“I think that’s what makes our program so different than any other type of therapy,” she said.
And because many speech-language pathology students in the U.S. are graduating without training specific to Parkinson’s, the program is a boon to them, too.
“The graduate students are getting experience that’s very rare,” she said. “They actually get to see people with Parkinson’s, to treat them, to get the experience of working with them individually and in a group setting.”
The therapy can be empowering because those with Parkinson’s often feel they’re “on this downward spiral, that they have absolutely no control,” she said.
“The truth is, they don’t have control over losing the dopamine. But that’s really the only thing they don’t have control over. With everything else, they can use intent.”
Some of the EWU students have conducted a small study looking at the thereapy’s outcomes. They found evidence for the long-term effects of Speak Out on vocal intensity, intelligibility, and voice-related quality of life, and say more research is warranted.
It’s making a difference for Hustrulid. He said he looks forward to the weekly group session. It helps him stay sharp, connect with others with Parkinson’s, and gives him the joy of being in an academic setting with students again.
He even had Speak Out shirts made for the group.
“That adds a little fun to the course,” he said. “That’s the idea. If we’re going to have this thing, we might as well have a little fun with it, too.”