When Medicare at the Dallas hospital where she was working in the late ’90s cut reimbursement for speech language pathologists, Samantha Elandary predicted a new void for the therapy among her patients. That’s when she came up with the idea for Parkinson Voice Project, a Dallas-based, nationwide program that offers free speech language therapy to patients diagnosed with Parkinson’s disease, which causes muscle loss and, thus, speech difficulty.
Since the project began out of Elandary’s home in 1998, about 220 speech language pathologists across have received training and 16 clinics execute its custom speech training program across the United States. This summer, the program is launching a 10-hour online training workshop for speech language pathologists who want to launch the program in their own communities— currently, those therapists must travel to Dallas for the training. Registration, which includes a custom set of speech therapy materials, is $415.
“A lot of speech pathologists in graduate school were not trained to treat Parkinson’s, but we have figured it out,” Elandary, founder and CEO of Parkinson Voice Project, told FoxNews.com. “We know that people with Parkinson’s can get the help they need with intensive training followed by maintenance.”
Parkinson Voice Project takes a two-pronged approach: SPEAK OUT!® and The LOUD Crowd®. The former phase involves one-on-one therapy to help patients re-strengthen their muscles for speech and swallowing, and the latter phase aims to help them maintain those skills. According to the National Institutes of Health, difficulty swallowing is the primary cause of aspiration pneumonia, the leading cause of death for Parkinson’s patients.
“No other clinic is offering this two-part therapy,” said Elandary, who added that two annual fundraisers and a pay-it-forward system help fund operational costs.
Dorreen Nicholas, clinic director at Eastern Washington University, uses Parkinson Voice Project’s model to help train her graduate speech language pathology students to treat patients with Parkinson’s and ALS, another incurable, degenerative disease that affects muscle function.
“We certainly talk to them in their classes about Parkinson’s and about ALS, and [give them] the general treatment approaches,” Nicholas told FoxNews.com, “but to actually teach specific programs that require a little bit higher training— that’s not typical in a graduate program.”
“We’re thankful for the opportunity to be able to train our students with this patient population,” she added.
Jason Arwine, 37, of Plano, Tex., was diagnosed with early-onset Parkinson’s on Oct. 31, 2012.
“I got a trick instead of a treat that day,” Arwine, who served in the U.S. Marines from 1997 to 2005, told FoxNews.com.
Arwine didn’t have a family history of Parkinson’s when he was diagnosed, and he wasn’t aware of the speech problems that would arise until his girlfriend, who’s now his wife, researched and alerted him.
“She found out that Parkinson’s patients can die if they don’t practice their speech,” he recalled, “and said, ‘We’re not doing that.’”
Arwine, who works for a local custom audio and video installation company, graduated from the SPEAK OUT!® program in February 2014, but he tries to take refresher courses with Parkinson Voice Project every six months. The courses call for focusing on clarity, enunciation and volume. Parkinson Voice Project graduates like Arwine receive a free 200-page, 25-lesson workbook to help them stay on par with their progress.
“You could easily force yourself to be loud, but it takes more concentration to keep a certain level for a certain period of time,” Arwine said. “You know you’re not having to think about your volume or why you’re speaking … [but] with Parkinson’s, it’s obstructed.”
For Arwine, the speech therapy he received through the program has helped make him feel prepared for the future. Parkinson’s is a degenerative condition that currently has no cure. According to the Parkinson’s Disease Foundation, about 1 million Americans are living with the disease, and about 60,000 new cases are diagnosed each year. Disease risk increases with aging, but an estimated 4 percent of patients are diagnosed with Parkinson’s before age 50, according to the foundation.
“[The therapy] puts you light years ahead of the game, and it helped me preserve my future and my well-being,” he said.