Shanon Brantley, an Arkansas State University assistant professor of communication disorders, has seen the positive impact on patients of the Parkinson Voice Project's SPEAK OUT! therapy in Jonesboro, and she's thrilled more patients will have access to the treatment virtually as part of a grant from the Parkinson Voice Project.
Brantley, clinical lead for the Arkansas SPEAK OUT! Therapy and Research Center -- the only such center in the state -- got trained in SPEAK OUT! a few years ago because "I definitely saw the value," she said. It's "succinct in delivery and makes sense."
She "saw an immediate effect on the communication skills" of patients and the "improvement of their lives," she said. For example, one patient -- "for the first time in years" -- went out to dinner, ordered his meal himself and was understood by the waitress, while another noticed that his grandchildren actually wanted to play with him when he and his wife looked after them following their school day.
By adding an online element for SPEAK OUT! through a five-year $280,000 grant for training, services, supplies and equipment from the Parkinson Voice Project, access to this therapy will be significantly expanded, which is critical in a "rural state" like Arkansas, she said. Roughly 40% of communities in Arkansas are defined as rural, so many individuals live a great distance from health care providers, which makes telemedicine imperative.
"We appreciate the support from the Parkinson Voice Project," because the grant "will enable our A-State faculty to reach out and provide specialized training to members of our community that suffer from Parkinson's disease," said Todd Shields, ASU's chancellor. "We are excited to be among the first universities in the United States to receive a 'Campaign to Reach America' grant."
ASU is one of 16 universities in 16 states selected for $4.5 million in grants as part of the Parkinson Voice Project's "Campaign to Reach America," which creates SPEAK OUT! research and therapy centers at the 16 universities, said Samantha Elandary, founder and CEO of the Parkinson Voice Project. The goal is to raise $20 million to bring SPEAK OUT! therapy and research centers to every state in the country.
ASU was selected in this initial round of grants for its "compassion and commitment" to serving the Parkinson's community at ASU's Speech and Hearing Center.
"I'm very proud of our faculty in the A-State Speech and Hearing clinic who sought out the grant to bring this impactful speech treatment to the region," Shields said. "It is that kind of community outreach and partnership that we want A-State to be known for in our state."
ASU's Speech and Hearing Center is a clinical laboratory where speech-language pathology students gain practicum experience through the supervised delivery of speech, language and hearing services to individuals with communication disorders, according to the university. It also contracts with schools and agencies to provide services off campus.
The Parkinson Voice Project, a 501(c)(3) nonprofit, focuses on assisting people with Parkinson's disease and related movement disorders to maintain their speech and communication with the goal of minimizing life-threatening swallowing complications, according to the organization, which is based in Richardson, Texas. The Parkinson Voice Project, which announced the grants to 16 universities Tuesday on World Parkinson's Day, treats patients in clinics and trains speech-language pathologists and graduate students worldwide while providing free speech therapy workbooks and other enrichment for patients to enhance treatment they're receiving at hospitals and clinics.
Though Parkinson's is commonly identified by its tremors, slowing and stiffening movements, it impacts many systems in the body, with 90% of patients struggling with eating and swallowing, Elandary said. "What would your day be like if you couldn't speak or swallow?"
These trials are "life-altering" -- and can even be "life-threatening" -- but research-based SPEAK OUT! therapy is "very effective," she said. With these therapy and research centers, "barriers" to SPEAK OUT! therapy will be eliminated because patients can not only access the treatments virtually from anywhere in their state, but can do so free of charge.
The uncle of Nicole Sebastian would need to make a three-hour roundtrip to access this type of treatment in person, so this online therapy is "fabulous" for someone like him, said the University of Mary's Nicole Sebastian, assistant professor of communication and clinical coordinator at Saint Gianna School of Health Sciences in North Dakota. "Telemedicine is amazing," particularly in rural North Dakota, where there are "so many out there who can benefit and will utilize this treatment."
The virtual component is important to patients who are homebound, in nursing homes, can't drive, are too young for Medicare or need more therapy than Medicare covers, Elandary said. During the pandemic, when so many treatments were forced to move online, Elandary noticed that many individuals with Parkinson's -- as well as their caregivers and/or families -- actually preferred virtual sessions because of their convenience.
With virtual therapy like this, practitioners can increase "reach without causing additional stress" to patients, Brantley said. That's the "client-centered approach" Brantley and others strive for, because it's best for patients.
Nearly 1 million people in America are living with Parkinson's disease, a figure expected to rise to 1.2 million by 2030. Parkinson's is the second-most common neurodegenerative disease after Alzheimer's disease, according to the Parkinson's Foundation. The combined direct and indirect cost of Parkinson's, including treatment, Social Security payments and lost income, is estimated to be nearly $52 billion per year in the U.S.
Efficacy research is a major component of the grants announced Tuesday, as is the education of those who will be trained on SPEAK OUT! therapy and learn more about Parkinson's treatment, Brantley said. It "nurtures" students educationally and sharpens their "research skills."
Training for a handful of faculty members and 60 graduate students has already begun at ASU, and once that training is complete -- the Parkinson Voice Project has invited practitioners to Dallas in June for three days of advanced training for the online component -- ASU will roll out its effort for Arkansans, Brantley said. This is "a wonderful opportunity."
The therapy and research centers will be incredible for "community engagement" and provide "the best possible training and education for our students," said Lucia Scheffel, Special Education & Communication Disorders assistant professor at the University of Nebraska Omaha, which received one of the grants announced Tuesday. Ultimately, it "gives hope for" those with Parkinson's.
With this therapy and treatment, these individuals will no longer "feel scared to eat a meal with their family," and it'll improve "their overall quality of life," said St. Louis University's Andrea Vaughan, assistant clinical professor in Speech, Language & Hearing Sciences. It's also paramount to "train our future" licensed speech pathologists, and the research and therapy centers will provide "hands-on experience with Parkinson's patients" they can take with them into their careers.
The Parkinson Voice Project will have a list of research and therapy centers and more details on accessing services later this year, Elandary said. The Parkinson Voice Project is committed to making sure each center thrives, including with marketing and outreach, and each university is also receiving $50,000 to purchase research therapy and equipment.