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Parkinson's Patients Get Loud In Texas

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Lauren Silverman
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KERA News
Samantha Elandary is the founder of the Parkinson Voice Project.

Hundreds of people with Parkinson’s have brought their voices back to life through a unique program in North Texas.

Walk through the halls of The Parkinson Voice Project in Richardson, and you’re likely to hear yelling, counting, or singing.

These are the sounds of people with Parkinson’s reclaiming their voices.

 

Along the beige walls, silver letters spell out inspiring quotations from graduates – “I’m back in charge,” and “My grand-kids can understand me.”

“People don’t realize that when you lose the ability to speak, you can’t laugh,” says founder and speech-language pathologist Samantha Elandary. “You try but no sound will come out.”

Parkinson’s disease makes it difficult to coordinate routine muscle movements, like walking, blinking and talking. And while medication can reduce some symptoms, physical and speech therapy are important parts of treatment.

Getting Vocal 

Elandary started the non-profit Parkinson Voice Project from her home in the 90s. Today, it’s an international destination.

“If people with Parkinson’s go through intensive voice therapy and they keep up with it, then the can keep their voices strong for many, many years,” she says.

"The challenge is that Medicare and insurance doesn’t cover maintenance therapy. That’s why across the country people are going through therapy but the results aren’t lasting.”

Which is why the Parkinson Voice Project started a follow up voice group for patients after they complete the four weeks of intensive coaching.

The Loud Crowd

There are more than 400 members in the Loud Crowd. Jason Arwine, 35, is one of them.

“I was diagnosed with early onset Parkinson’s October 31st of 2012, I like to say, and I got a trick instead of a treat that day,” he says.

Arwine was 33-when he got the news. Parkinson’s often associated with older people, but about 10 percent diagnoses are under the age of age 50.

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Credit Lauren Silverman / KERA News
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KERA News
Jason Arwine, a former Marine, was diagnosed with Parkinson’s at 35. He’s now a member of the “Loud Crowd” at the Parkinson Voice Project.

The disease makes it difficult to coordinate routine muscle movements, like talking, blinking and walking.

There’s no cure, but if you can keep your muscles strong through dedication diligence and practice.

Arwine, a Marine, took on the challenge.

“If I’m going to go for something I’m going to go 100 gusto,” Arwine says. “So I gave it my all and it’s done nothing but benefit me.”

Arwine practices speaking with intent – that’s the non-profit’s mantra – with his wife Heather, reading sports blogs out loud, even with their French bulldog. Before, Arwine says his speech was very monotone, and his wife had trouble hearing him.

“Now, I’m back to what I call my military voice,” he says, ” Clear, concise, recognizable.”

Spreading The Word

The Parkinson Voice Project now trains speech pathologists across the country and will have an online version early next year.

Therapy is provided at no charge, through a pay-it-forward system. This helps patients like Jason Arwine, who have to pay hundreds of dollars every month for Parkinson’s medications.

Lauren Silverman was the Health, Science & Technology reporter/blogger at KERA News. She was also the primary backup host for KERA’s Think and the statewide newsmagazine  Texas Standard. In 2016, Lauren was recognized as Texas Health Journalist of the Year by the Texas Medical Association. She was part of the Peabody Award-winning team that covered Ebola for NPR in 2014. She also hosted "Surviving Ebola," a special that won Best Long Documentary honors from the Public Radio News Directors Inc. (PRNDI). And she's won a number of regional awards, including an honorable mention for Edward R. Murrow award (for her project “The Broken Hip”), as well as the Texas Veterans Commission’s Excellence in Media Awards in the radio category.