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An educator and a graduate student working with a client during a speech therapy session.

Clinical educator Kimberly Adelman and graduate student Joanna Magana work with client Robert Ballatini during an individual speech therapy session through the SPEAK OUT! program.

Speaking with intent: Parkinson’s patients regain voice quality with help of speech and hearing clinic

“The outlook wasn’t brilliant for the Mudville nine that day; the score stood four to two, with but one inning more to play. And then when Cooney died at first, and Barrows did the same, a sickly silence fell upon the patrons of the game.”

It’s a Friday morning, and the group gathered at the Normal Township building takes turns reading stanzas from “Casey at the Bat,” a poem by Ernest Thayer. While the audience in the poem might have fallen silent, the group reading it certainly does not. Each individual is reading slowly, clearly, and loudly.

Why? Because this is The LOUD Crowd.

The LOUD Crowd is a group speech therapy program for individuals with Parkinson’s disease. They meet weekly to do speech therapy exercises, work through cognitive tasks, and practice the program’s motto, “speak with intent.”

While the primary purpose of the group is speech therapy maintenance, it has become like a Parkinson’s support group as well. Participants often discuss their diagnoses, concerns, and the latest in Parkinson’s treatments and research. The members share laughs and truly enjoy their time together, having built a great comradery over the last year. Along with program director Kimberly Adelman, a clinical educator at Illinois State University, they are even planning to create their own cookbook—Cooking With Intent.

The LOUD Crowd was developed by the Parkinson Voice Project, a national nonprofit organization focusing on speech therapy and support for individuals with Parkinson’s disease. The maintenance program follows the individual speech therapy program, SPEAK OUT! Both programs are offered locally by the Eckelmann-Taylor Speech and Hearing Clinic at Illinois State University.

The programs are relatively new offerings at the clinic. In early 2018, Adelman and Heidi Verticchio, the clinic director, applied for and won a $1,000 grant from the Parkinson’s Voice Project to fund the SPEAK OUT! and The LOUD Crowd programs at the clinic. The grant also included on-site training on the program in Dallas for Adelman, as well as online training for other clinical educators, and a variety of online resources for Illinois State students.

Parkinson’s disease impacts individuals in a variety of ways, including their speech. They often speak quietly, mumble, or trail off at the end of sentences. “A lot of people with Parkinson’s don’t realize they’re talking a lot softer,” Adelman said. “Because of the lack of dopamine—that’s what happens with Parkinson’s, the lack of dopamine—the automatic tasks like walking and talking become more difficult. Most people don’t realize that they have a problem.”

When these individuals are more deliberate and intent in their speech, they use a portion of the brain less dependent on dopamine and can improve their ability to speak. The LOUD Crowd’s motto—speak with intent—reminds the group members to do just that.

“There’s life in spite of Parkinson’s.”

Clients begin treatment with the individual speech therapy program SPEAK OUT! They meet twice a week for therapy with an Illinois State graduate student, in collaboration with Adelman, and work through curriculum developed by the Parkinson Voice Project and based on the work of well-known voice expert Daniel R. Boone. SPEAK OUT! therapy sessions last four weeks. When clients are finished with their second week of SPEAK OUT!, they also start attending The LOUD Crowd to help transition to the maintenance program. After completing their four weeks of SPEAK OUT!, each client officially graduates to The LOUD Crowd and receives a diploma and “Speak with Intent” T-shirt.

Clients are recorded doing speech exercises during their first and last SPEAK OUT! therapy sessions, and their speech progress is often evident in the recordings. The clients themselves also notice other benefits from their participation in both programs, including increased confidence, better cognitive strength, increased breath support, and improved swallowing ability.

They also, of course, enjoy the comradery and encouragement from The LOUD Crowd group. “We’re all in this together,” said participant Kent Sunderland as he looked around the table at the other participants. “We have another family.”

Fellow participant Ernie Hutson echoed Sunderland’s sentiment: “There’s life after Parkinson’s.”

“There’s life in spite of Parkinson’s,” added participant Robin Pearson.

Participation in The LOUD Crowd is free and open to anyone who has completed or is enrolled in the SPEAK OUT! program, whether at Illinois State University or through another provider. Verticchio noted that some attendees had been traveling to Peoria for services and treatment prior to the programs’ start at Illinois State. Offering them locally provides Bloomington-Normal area residents access to the services without having to travel far.

While the new programs through the Speech and Hearing Clinic are obviously meeting a need in the community, they are also helping the clinic to fulfill its purpose of providing educational experiences for students at Illinois State. According to Verticchio, the clinic is a training ground for students to gain hands-on experience and knowledge.

The Speech and Hearing Clinic operates under the Department of Communication Sciences and Disorders. As part of the department’s accreditation by the American Speech-Language-Hearing Association, students are required to work a specific number of clinical hours in either speech-language pathology or audiology in order to be credentialed and licensed after graduation.

Undergraduate students are required to have a total of 25 hours of observation prior to graduation, and they typically earn those hours by observing graduate students and instructors at the Speech and Hearing Clinic. The graduate students begin their hours in the clinic to gain a foundation before starting their off-campus clinical hours later in their respective degree programs.

Verticchio and Adelman both noted that the clinic often lacks adult speech therapy clients for students to work with and gain experience. “We’re required to teach students the breadth and depth of the profession,” said Verticchio. “Historically we’ve been known as a speech and hearing clinic that serves school-age kids, so a lot of our clientele comes in the after-school hours. We are pushing to try to get more adult patients for speech and more kid patients for audiology.”

The new SPEAK OUT! and The LOUD Crowd programs are helping to fill the former need and increase the number of adult speech therapy patients at the clinic.

“It’s such a good experience for the students to work with these individuals,” said Adelman. “Prior to starting this program, we didn’t have many Parkinson’s patients come here, so the students didn’t have the opportunity to work with someone with Parkinson’s. Now that we’ve started this program—through the grant—we’re giving the students an opportunity that they didn’t have.”

The SPEAK OUT! program takes place twice in the fall and spring semesters and once during the summer. Each session allows two or three students to be paired with new speech therapy clients, depending on the number of students interested in the program and the number of clients available.

The graduate students involved see the value in the experience they are gaining from the programs. “I’ve always been interested in working with adults,” said student Megan Spitzzeri. “Having this opportunity to learn about Parkinson’s disease in a hands-on training and therapy was something that not every school or student gets, so I jumped on it immediately.”

Spitzzeri’s involvement with these programs and clients has increased her patience and understanding while also making her even more passionate about working with adults.

Adelman often speaks at local Parkinson’s disease seminars and support groups, and other organizations in an effort to build awareness about the SPEAK OUT! and The LOUD Crowd programs now being offered through the Speech and Hearing Clinic.

“I’m trying to spread the word to let the community know that we’re here and we’re available to them,” Adelman said. “We’re a resource for people with Parkinson’s.”

Last spring, Adelman and Verticchio received a second grant from the Parkinson Voice Project to continue the programs through the 2019–2020 school year. In addition to the educational and training components, the grant also includes a small amount of money earmarked for marketing the programs to the community.

“Being able to help others regain a loud voice to communicate with their families and friends so that they can be heard and understood is an opportunity I will always be grateful for.”

The LOUD Crowd clients are helping to spread the word about the program themselves. They are actively recruiting acquaintances, inviting their neighbors, talking about the programs with their health care professionals, and even posting in nationwide Facebook groups to encourage individuals to find groups in their own areas. According to the Parkinson Voice Project website, 1,171 providers offer SPEAK OUT! nationwide, and another 51 offer the program internationally.

The LOUD Crowd participants are telling others about the programs because they have seen the impact firsthand. The graduate students working with them admit that they have gained more than just clinical skills, too. “These programs have definitely impacted me personally,” graduate student Megan Stone said. “I value the ability to speak clearly and loudly with the people I encounter so much more now that I have engaged in SPEAK OUT! and The LOUD Crowd. Being able to help others regain a loud voice to communicate with their families and friends so that they can be heard and understood is an opportunity I will always be grateful for.”

According to Verticchio, these types of community engagement opportunities are very important to students entering the profession—through both clinical experiences and other volunteer work. They are necessary to help students build the interpersonal skills essential in working with clients in the future and to help the students determine their focus.

“A lot of students will say they want to get into this major because they enjoy helping people,” said Verticchio. “Well, that’s pretty generic—not that it’s not valid. If you really want to get into the profession because you want to help people, however, let’s have you start helping people to see what aspects of that you like or what speaks to you.”

The Speech and Hearing Clinic and the Department of Communication Sciences and Disorders offer students a wide variety of opportunities to engage with and serve the community. Conversation Café, for example, is a free weekly program for individuals and families affected by stroke or those who have lost their ability to use language. The program is directed by Rene McClure, a clinical educator in the department. Participants meet once a week in a group setting to practice language skills, and McClure’s students assist with the meetings.

The clinic offers a similar free group language program for clients with Down syndrome. These clients are also invited to participate in the yearly “Choose to Shine” fashion show. The event is coordinated by Illinois State students involved in the National Student Speech Language Hearing Association, with direction from Adelman. Each year the event raises money for the Central Illinois Down Syndrome Organization (CIDSO). The 2019 event included over 40 client models and raised $2,500 for CIDSO.

With direction and supervision from faculty and staff at the clinic and the Department of Communication Sciences and Disorders, Illinois State students are also conducting speech, language, and hearing developmental screenings at local day care centers and elementary schools. Students lead cognitive and language therapy in rehabilitation centers at local hospitals. They conduct hearing screenings at nursing homes and hospitals, and they assist with hearing aid cleaning and maintenance there as well.

While the students, faculty, and staff are serving the community, the clinic itself is another important community resource. “It’s a civic outreach in that it’s not just open to people in the ISU community,” Verticchio said. “It’s not just people in the Bloomington-Normal community. It’s literally anybody who wants to come for an evaluation or therapy for speech language pathology or any type of assessment for hearing, hear aids, anything like that.”

The Speech and Hearing Clinic is also one of the few providers that accepts Medicaid for speech and audiology services. Some clients travel two to three hours just to receive care at the clinic.

While some clinic programs and services are free to clients (e.g., The LOUD Crowd), most are billed through a client’s insurance. However, because the clinic is a training facility at a university, services are offered at largely discounted rates. For that reason, individuals without insurance, or with insurance that will not cover speech therapy or hearing services, are still often able to afford services.

To date, 11 individuals with Parkinson’s disease have graduated from the SPEAK OUT! program at the clinic, and more clients are currently in the program this semester. The LOUD Crowd meetings are growing, too.
“The LOUD CROWD program has provided a community where we all get together and practice speaking with intent, talk about our lives, and share stories,” graduate student Joanna Magana said. “I love meeting with the group every week. We always have fun working through the exercises, playing games, and learning new trivia, all while using intent.”

Of course, The LOUD Crowd participants all plan to continue the program. “There’s no cure. All we can do is try to stay here longer. If these programs help us, then by God, we’d better use them,” Sunderland said.

“Live with intent,” added Adelman.

For more information on SPEAK OUT! and The LOUD Crowd, contact the Eckelmann-Taylor Speech and Hearing Clinic at (309) 438-8641 or speechhearingclinic@IllinoisState.edu.

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Comments

So good to hear you are helping Parkinson patients and teaching many more to do more. We are so proud of all the hard and creative work Samantha Ellender has done to spread the SPEAK OUT! & LOUD CROUD and grateful for her financial supporters to expand help for Parkinson patients nationwide and beyond. Universities are in a unique position to play a significant role in advancing Parkinson Disease treatments. Thanks for your commitment.
Bob DeJean husband of Patsy who has Parkinson and member of Samantha’s LOUD CROUD.

I would love to take part in this program, because my speech definitely needs to be improved,I was diagnosed with Parkinson’s disease about 6 years ago

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