By JACKIE HAUSLER
Published December 1, 2023
Each year, nearly 90,000 people in the U.S. are diagnosed with Parkinson’s disease, a condition that can present a variety of symptoms and life-altering setbacks — including losing the ability to speak and swallowing complications.
Now, thanks to funding from the Parkinson Voice Project, UB is one of 17 universities across the country that have named sites for the “SPEAK OUT!” program to help patients regain and retain their communication skills throughout the progression of Parkinson’s.
UB is New York State’s only SPEAK OUT! therapy and research center, which is housed in the Audiology and Speech-Language Pathology Clinic in the Department of Communicative Disorders and Sciences (CDS), College of Arts and Sciences.
The $280,000 grant from the Parkinson’s Voice Project will support training, services, supplies and equipment over five years.
“We selected the UB Audiology and Speech-Language Pathology Clinic because of their compassion and their commitment to serving their Parkinson’s community,” says Samantha Elandary, founder and CEO of Parkinson Voice Project. “These new SPEAK OUT! therapy and research centers will eliminate the barriers currently preventing thousands of people with Parkinson’s from receiving speech treatment.”
The program’s treatment for participants focuses on helping them regain and retain their voices, minimizing swallowing problems, while providing essential tools to help them stay connected with their families and friends. According to the Parkinson Voice Project, the program “provides a research-based medical therapy through engaging activities.” It emphasizes speaking with intent to convert speech from an automatic function to a more intentional act. Participants use a mixture of daily at-home practice and regular evaluations to regain and retain their communication skills.
“The SPEAK OUT! therapy program has improved my life,” says Mark Patterson, a participant in the program and now a Parkinson Voice Project volunteer. “Prior to starting the program, my speech was noticeably slurred, and I was often asked to repeat myself to be understood. But, after just two one-on-one sessions of therapy, I already had people who knew me commenting about how much clearer my voice was.
“I enjoy the group sessions now,” he adds. “It has been good to get to know others who face the same challenges I do, and we encourage one another to practice every day.”
The UB project, led by Laura Roberts, clinical assistant professor, and Kalia Stipancic, assistant professor, both in CDS, is already growing significantly. “We currently have 34 individuals established in our SPEAK OUT! program and had 24 new individuals start this semester for a total of 58,” says Roberts. “We get phone calls every day from all over the state to either start the program with us for an initial evaluation or from people who have received the individual therapy with another speech-language pathologist and are now looking to join a group for the second part of the therapy program.”
Participants can take part in the program through in-person or Zoom therapy sessions. There is no cost to New York State residents diagnosed with Parkinson’s or a related movement disorder.
In addition to UB, the Parkinson Voice Project has awarded more than $4.5 million in grants to Andrews University in Berrien Springs, Michigan; Arizona State University; Arkansas State University; Eastern Washington University; Georgia Southern University; Marshall University; Metropolitan State University of Denver; Northeastern University; Pennsylvania State University; Sacred Heart University; Saint Louis University; University of Mary, Bismarck, North Dakota; University of Nebraska – Omaha; University of South Florida; and University of Utah.
The universities will also conduct efficacy research on SPEAK OUT! therapy. Clinical and research faculty members will travel to the Parkinson Voice Project’s headquarters in Richardson, Texas, for specialized instruction in SPEAK OUT! therapy and research, as well as efficient business practices and outreach. They will take part in master classes with individuals with Parkinson’s and receive hands-on training.
“Our goal is to provide access to SPEAK OUT! services to people who may not otherwise have access in their geographical area or due to disability accessibility issues and financial constraints,” Roberts adds.
To learn more and enroll in the program, visit the CDS website.
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