Perception of people with Parkinson's disease

Perceptions of People with Parkinson's disease (PD) and Community-based intervention for people with PD

Sabiha Parveen, Ph.D.
Associate Professor, Department of Communication Sciences and Disorders, Oklahoma State University
sabiha.parveen @okstate.edu

Parkinson disease (PD) is the second most common degenerative disorder, currently affecting more than 10 million people throughout the world⁽¹⁾. According to Parkinson’s Foundation, approximately 60,000 Americans are annually newly diagnosed with PD⁽²⁾. The population of PD has been quite fascinating to me as a researcher as each individual with PD has their journey in terms of their perceptions of symptoms as well as the impact of symptoms on their daily life functioning and quality of life (QOL). My research experiences in the field of PD began with my master’s thesis during 2008-2010. I examined articulatory changes among individuals with different severities of PD during sentence reading tasks. The study showed articulatory changes among participants with PD compared to healthy controls, including an overall significant loss of stop bursts and the presence of multiple bursts for stop consonants during structured reading. This was the first mention of multiple stop bursts among individuals with PD at the time, thereby adding to the existing evidence regarding PD-related speech changes⁽³⁾. My doctoral work and subsequent projects have mainly used patient-reported outcomes and perceptual analyses to examine different PD-related speech changes^(4-7). My doctoral dissertation (2012-2013) project examined the self and proxy perception of speech and motor deficits of people with PD^(4-5). The study indicated significant self-perception deficits among individuals with PD and perception deficits among communication partners (mainly spouses) for speech and motor performance tasks by individuals with PD. My research provided evidence for self-perception deficits among people with PD across several domains, which was not investigated in much detail by prior researchers ^(4-6). In addition, participants with PD and their communication partners rated similarly for changes in QOL of participants with PD following the diagnosis. However, the study indicated no correlation between speech and motor-related QOL of individuals with PD, suggesting the need to assess speech and motor functioning separately.

Parkinson disease is associated with several deficits, including changes in a person’s physical mobility, cognitive agility, dietary performance, speech, swallowing, psychological well-being, as well as overall QOL. Therefore, a multidisciplinary approach to systematic intervention is of paramount value. Approximately $25 billion is spent each year on the combined direct and indirect cost of PD within the United States.

With the multidimensional nature of PD in mind, we offered a 3-day education and information-based event for people with PD and their families based in and around Stillwater during 2018. This event was funded by a Community Engagement Grant from Oklahoma State University (OSU). The event included presentations by different healthcare professionals and discussions of available resources for better management of symptoms associated with PD. A total of 50 attendees from Stillwater and nearby cities attended the event and received a tremendously positive response from the attendees and local print media. A manuscript related to the event was published in SIG-2⁽⁸⁾. Following the day-long event's success, I created partnerships with departments of nutritional sciences, arts, and recreational therapy at OSU. We subsequently developed a multidisciplinary community-based program (The Stillwater CANE Project- communication, arts, nutrition, and exercise) for individuals with PD and their families in 2019. It is the only such program within the entire state of Oklahoma⁽⁷⁾. The program has received continuous funding from Community Grant Program Parkinson’s Foundation since 2019. In addition, I received the ASHA Advancing Academic-Research Career (AARC) award (2019-2021) to continue my research work related to the CANe project.

As part of the CANe project, we currently offer six programs focusing on speech and cognitive functioning, PD-specific exercise programs, nutrition education, social and peer support, and group-based art activities. Over 30 families of people with PD have attended these programs during the past four years, and we plan to continue expanding our program and efforts. So far, we have had three research articles and several conference presentations discussing the program's benefits ^(9-14).

In summary, I am thankful for the opportunity to serve the PD community during the past 14 years through my research work. My research journey has helped me learn about the different aspects of PD. I hope to continue my efforts for more effective intervention programs for people with PD and resources for families of people with PD.

References:

1. Aarsland, D., Batzu, L., Halliday, G.M., Geurtsen, G.J., Ballard, C., Ray Chaudhuri, K., & Weintraub, D. (2021). Parkinson disease-associated cognitive impairment. Nature Reviews Disease Primers, 7(47). https://doi.org/10.1038/s41572-021-00280-3

2. Statistics. Parkinson’s Foundation (2022). Downloaded on October 16^th, 2022 from https:// www.parkinson.org/understanding-parkinsons/ statistics#:~ :text=Approximately %2060 %2C000%20Americans%20are%20diagnosed,are%20diagnosed%20before%20age%2050.

3. Parveen, S., & Goberman, A. M. (2014). Presence of stop bursts and multiple bursts in individuals with Parkinson Disease. International Journal of Speech Language Pathology, 16(5), 456-463.

4. Parveen, S., & Goberman, A.M. (2020). Comparison of perceptual speech ratings by individuals with Parkinson disease, communication partners, and a Speech Language Pathologist for Parkinsonian and normal speakers. Speech, Language, and Hearing. Published online on Nov 5, 2020, doi/full/10.1080/2050571X.2020.1826108

5. Parveen, S. (2016). Comparison of self and proxy ratings for motor performance of individuals with Parkinson disease. Brain and Cognition, 103, 62-69.

6. Parveen, S., & Goberman, A.M. (2016). Comparison of self and proxy ratings for Voice Handicap Index and motor-related quality of life of individuals with Parkinson disease. International Journal of Speech–Language Pathology, 1-10.

doi. http://dx.doi.org/10.3109/17549507.2016.1167242.

7. Parveen, S. & Slaten, A. (2019). Aging effects on perception of parkinsonian and normal geriatric speech. Clinical Archives of Communication Disorders, 4(2), 72-82.

8. Parveen, S. (2020). Parkinson Disease Bootcamp: An education program for individuals with Parkinson disease and their families. SIG-2 Perspectives of the ASHA Special Interest Groups, 5(3), 654-657. https://doi.org/10.1044/2020_PERSP-19-00093

9. Brickell, B.A., Passmore, T., Bateman, M., Parveen, S., Romoser, C., & Lindenmeier, D. (2022). Effects of a recreational therapy balance exercise program in individuals with Parkinson’s disease as part of a multidisciplinary treatment program. American Journal of Recreation Therapy, 21(2), 33-41.

10. Bateman, M., Parveen, S., Brickell, B., Romoser, C., & Passmore, T. (2020). Effects of recreational therapy and speech therapy among participants with Parkinson disease and Parkinson plus conditions: Findings from a 16-week multidisciplinary program. American Journal of Recreation Therapy, 19 (2).

11. Parveen, S., Passmore, T., Brickell, B., & Jackson, S. (2021). Community-based multidisciplinary program for people with Parkinson disease: A 2-year comparison. Movement Disorders Online Supplement, 36 (S1), Published on 10th September 2021. Abstract Publication Number 525.

12. Parveen, S., Brickell, B., Romoser, C., Wilson, H., Passmore, T., & Bateman, M. (2020). Benefits of Recreational Therapy and Speech Therapy Among Participants with Parkinson disease: findings from a 12-month study. Movement Disorders Online Supplement, 35(S1), Published on 11 Sep 2020. Abstract Publication Number 12.

13. Bateman, M., Parveen, S., Brickell, B., Romoser, C., & Passmore, T. (2020). Effect of a Rural Multidisciplinary Community Program on Postural Stability Among Parkinsonism. Medicine & Science in Sports & Exercise, 52(7S), 292-293.

14. Parveen, S., Bateman, M., Brickell, B., & Romoser, C. (2019). Effects of recreational therapy and speech therapy among participants with Parkinson disease and Parkinson plus conditions: Findings from a 16-week multidisciplinary program. Paper presented at the XXIV World Congress on Parkinson’s disease and related disorders, Montreal (Canada), Jun 16-19, 2019.