Research that truly serves people with Parkinson’s disease doesn’t begin in a laboratory. It begins in the community — with the patients, care partners, and clinicians who live and work with the daily realities of the disease. This is the foundation of Community Based Participatory Research (CBPR), an approach that creates equitable partnerships between patients, physicians, and communities, ensuring that the questions being asked — and the solutions being developed — are grounded in lived experience.
SpeakEasy4PD was designed with this model in mind. Rather than a top-down clinical intervention, it is a structured, community-based speech program that meets people where they are — within their Parkinson’s organizations, support networks, and daily routines. By integrating education, evidence-based vocal exercise, peer support, and real-time feedback technology, SpeakEasy4PD addresses the communication difficulties that are so prevalent and so often undertreated in Parkinson’s disease.
The outcomes reported here reflect what is possible when community engagement is treated not as a supplement to clinical care, but as a core component of it.
Communication in Parkinson’s: More Than a Soft Voice
Most people with Parkinson’s, or a related diagnosis, know that speech and swallowing problems are common non-motor symptoms that may appear early or late in the disease. And while several speech therapy programs have been developed to address motor speech changes, there is a growing understanding that communication changes go well beyond a soft voice. They include dysprosody (loss of inflection and emotional expression), cognitive-linguistic impairment, and significant changes to social interaction and pragmatics. Any or all of these can affect mood and social participation. Interventions that ignore the full breadth of these changes will always remain incomplete.
Why Do Some Patients Not Retain Speech Therapy Improvement?
Referral to speech therapy continues to be inconsistent among providers, and for some patients, barriers such as lack of transportation, limited insurance coverage, high co-payments, or the belief that “nothing is wrong” with their speech can prevent participation altogether.
Even following intensive speech therapy, some individuals are unable to retain benefit due to cognitive impairments that interfere with self-monitoring or the ability to internalize a cue. Extreme motor fluctuations, inability to carry out home practice independently, forgetfulness, and limited social supports are all additional factors that can undermine long-term outcomes from speech therapy.
How Can Community-Based Programs Help?
Data suggest that once people with PD are enrolled in an exercise program, social factors — such as exercising alongside others who share the same diagnosis — are a stronger predictor of continued participation than individual motivation to improve physical strength. These findings likely apply to group communication practice as well. Studies of individuals with chronic disease consistently identify social support as a strong predictor of exercise adherence.
When offered as a weekly class, SpeakEasy4PD gives participants the opportunity to learn more about managing their speech and swallowing symptoms, while also providing a forum for practice, feedback, and peer support. The class format uses a hybrid approach that incorporates education, direct instruction in vocal function exercises, cognitive-communication activities, swallowing safety education, and behavioral strategies to support safer oral intake. Each participant receives a Hi-VOLT® voice-activated calibrated feedback device for home use during daily speech practice. This feedback can help individuals practice at a high enough level of effort to achieve a strength effect. Written home practice instructions are provided following each session.
Because SpeakEasy4PD is open to anyone with a diagnosis of Parkinson’s or a related condition such as PSP, it can serve as an after-therapy program for some, while for others, participation may serve as a gateway to enrolling in formal speech therapy and may also improve self-efficacy.
SpeakEasy4PD at Hope Parkinson’s: What the Data Showed
SpeakEasy4PD was first offered as an in-person class at Hope Parkinson’s Program in Cape Coral, Florida in 2016 with documented positive outcome changes both in acoustic measures but also in participant feedback. In the fall of 2021 and the spring of 2022, with generous funding from the Parkinson’s Foundation, the class was provided at no cost to Hope Parkinson’s community members. The class ran for eight consecutive weeks, 75 minutes per session, using a virtual web-based platform. Pre- and post-class online surveys were completed by participants to capture individual characteristics, communication goals, and perceived outcomes.
The average age of participants was 75 years; 7 women and 8 men completed the class. Duration of Parkinson’s diagnosis ranged from 1 year to over 10 years for four participants. Six individuals had never participated in speech therapy prior to the class. Of the nine who had received prior speech therapy (LSVT® LOUD or Speak OUT!), only two reported retaining benefit.
When asked to rank their goals for the 8 weeks in order of importance, participants identified: “to communicate better with spouse and family” as their top priority, followed by “to speak loud and clear.”
Five of 15 participants met with the instructor prior to the first class session for pre-class acoustic measures using the LSVT® Companion Software, including maximum phonation time (MPT), oral reading of the Rainbow Passage, and brief conversational speech. The MPT task was then repeated using the Hi-VOLT® with a single cue: “Vocalize an ‘ah’ loud enough to activate the light.” A swallowing screen using the Yale Swallow Protocol was also administered.
In response to the Hi-VOLT® cue, all in-person participants showed a documented increase in vocal intensity, with an average increase of 9 dBSPL — consistent with data from the fall 2021 class (9.8 dB). Duration of sustained phonation improved for all participants at the end of the 8 weeks, with the greatest change from 7.5 seconds to 23 seconds for one female participant, who noted: “Exercise really works.”
Eight post-class surveys were returned anonymously. Two questions addressed the primary goals of participants:
Q1: “My voice is louder/stronger since completing SpeakEasy4PD.” — 100% of respondents indicated Agree or Strongly Agree.
Q3: “I can communicate better with my spouse, family, or friends since completing SpeakEasy4PD.” — All participants indicated Agree or Strongly Agree; one indicated Neither Agree nor Disagree.
Class 5 focused specifically on care-partner communication, and spouses and other interested care partners were invited to join. While some intervention research has explored communication partner training in aphasia following stroke, no equivalent training exists for communication partners of people with Parkinson’s disease. Feedback from spouses reinforced that this component should remain a core element of SpeakEasy4PD.
A Template for Other Parkinson’s Organizations
The positive outcomes reported here, and the viability of an online delivery format, suggest that SpeakEasy4PD can serve as a replicable model for Parkinson’s organizations interested in offering community-based speech programming. The benefit to participants may be best captured in the words of one class member:
“This has helped me to communicate with my husband who is VERY hard of hearing. Even with his new hearing aids, I struggled. Often he doesn’t hear me clearly and I needed to repeat myself. The class has helped me to slow down, speak more clearly, project my voice and breathe so I don’t rush — this makes my voice louder and more clear. Our communication has improved a great deal, but I am going to keep practicing. I’m so glad I took the class. Mary brought up numerous points that I had not thought about when speaking. Thank you for offering it.”
Could this model work in your community? Share your thoughts or comments below.
References
Cook, D., McRae, C., & Kumar, R. (2016). Impact of self-efficacy education on physical and psychosocial functioning in newly diagnosed Parkinson patients [Abstract]. Movement Disorders, 31(suppl 2).
Miller, N., Noble, E., Jones, D., & Burn, D. (2006). Life with communication changes in Parkinson’s disease. Age and Ageing, 35(3), 235–239. https://doi.org/10.1093/ageing/afj053
Community-based rehabilitation for Parkinson’s disease: From neurons to neighborhoods. (2009). Parkinsonism and Related Disorders, 15S3, S114–S117.
My Mission: To enlist individuals in their treatment, and help them express their personality & spirit through voice. To educate and empower. Mary Spremulli, MA, CCC-SLP * FiTOUR® Group Exercise Instructor * Certified End of Life Specialist (CEOLS) * Voice Aerobics® A Whole Body Approach to Voice Practice