Speaking out

Parkinson's disease

People diagnosed with Parkinson’s disease or similar ailments are robbed of many daily functions. Normal speech is one of them, says Jenna Massey, a speech language pathologist at OSF HealthCare.

“Usually it starts with a hoarse voice. Then they start to get quieter and quieter,” Massey says. “Sometimes they mumble or have unintelligible speech. Occasionally people will have a stutter out of nowhere. Some people will talk too fast or too slow.”

That leads to everyday difficulties, some simply irritating but others life changing. Massey says people who have to talk on the phone at work suddenly find themselves unable to do the job, possibly resulting in a loss of work. Ordering dinner at a loud restaurant or talking to a spouse one room over is now tough because the person can only speak softly. This can put a strain on relationships and the person’s mental health.

Luckily, there are tailored therapy programs to help people regain normal speech. Massey received special training to administer the SPEAK OUT!® program from the Parkinson Voice Project. She says a person typically comes to see a speech language pathologist 12 times.

“We start out with very specific exercises like a sustained ‘ahh’ sound. Then we do some fluctuating sounds,” Massey explains. “Toward the end of the session, we do more conversation-based exercises. I’m monitoring their loudness and telling them if they’re doing a good job or if they need to get louder.

“In the conversation, I try to lean toward whatever they’re interested in,” Massey adds. “If they talk about gardening every day, that’s what we’ll talk about in a session.”

The second piece is called LOUD Crowd®. It’s referred to as a maintenance program, or something to help people keep up the skills they learned during office visits.

“It’s once a week. We do exercises as a group. We target some community activities, like ordering food. It depends on what people are having difficulty with,” Massey says.

And as with any therapy, people are expected to work on things at home. In this case, the ask is at least twice a day, Massey says. Homework could include voice exercises or watching a webinar from the Parkinson Voice Project. Massey says the person must make a lifelong commitment to maintaining their speech.

“Parkinson’s and related disorders are progressive,” Massey points out. “It’s never ‘oh I’m good again’. They are always fighting against Parkinson’s. So they always have to keep up on those exercises.”

Though it’s a daunting task, the success stories are fulfilling for Massey and her colleagues.

“In the beginning, they’re noticing their issues. So it can come with depression,” Massey says. “Usually, when they’re ending the program, they’re feeling successful. Their mood is improved. Their personality comes out even more.”

 Learn more

Check with your primary care provider or neurologist if a speech therapy program for people with Parkinson’s disease or similar ailments is available near you. Visit the OSF HealthCare website to read more about care for neurological disorders.