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The Parkinson Alliance Reports Survey Findings on Dyskinesias and Off States for Individuals with Parkinson’s Disease from the Patient’s Perspective

KINGSTON, N.J., January 29, 2020 — The Parkinson Alliance released the results of their 30th survey-based research entitled, Dyskinesias and Off States for Individuals with Parkinson’s Disease: The Patient’s Perspective, inclusive of 935 individuals with Parkinson’s disease (PD) who were asked about their experience with dyskinesias, “off states,” emotional well-being, and quality of life (QOL). Dyskinesias, which are uncontrollable involuntary movements that are different from tremors, have a prevalence ranging from 30% to 80% of individuals with PD under chronic treatment with levodopa. Dyskinesias may be mild or debilitating, markedly impairing social interactions and quality of life.

In our survey, 52% of the participants reported experiencing dyskinesias, and 76% had significant “off states.” Dyskinesias adversely impacted day-to-day functions, including speech, eating, dressing, handwriting, engaging in hobbies, walking/balance, and social engagements. Approximately 65% of the participants reported that off states adversely impact “independence” and social activities. Anxiety and depression were also highly prevalent. Twenty-eight percent of participants reported experiencing moderate to severe anxiety, and 18% with moderate to severe depression. Most of the participants indicated that dyskinesias heighten feelings of anxiety and depression. Dyskinesias had a significant impact on QOL, with 29% of the participants indicating that QOL was “somewhat” to “extremely” adversely impacted by dyskinesias.

Dr. Jeffrey Wertheimer, Chief Research Consultant for The Parkinson Alliance, stated, “Several therapeutic strategies are used to manage dyskinesias, including adjusting existing PD medications, conducting trials of supplemental medications, and having DBS surgery. When considering intervention for dyskinesias, it is recommended that you speak with your neurologist/movement disorders specialist.” Dr. Wertheimer added, “Anxiety and depression are common in Parkinson’s and can be a combination of medical, neurochemical, and psychosocial factors. This study highlights the strong relationship between dyskinesias and anxiety and depression. Fortunately, meeting with a mental health professional may assist in developing coping strategies to reduce and manage symptoms of depression and anxiety and improve the perceived quality of life.”

Please visit our website to view and download the full report, which includes take-home points and general recommendations for individuals with Parkinson’s disease.

About The Parkinson Alliance
The mission of The Parkinson Alliance is to raise funds for research to end Parkinson’s disease, support the development of new therapies, and improve the quality of life for those living with the disease through patient-centered research and resources. We fund research and conduct our own – patient-centered outcomes research. We are the umbrella organization for Team Parkinson events and the Parkinson’s Unity Walk.

Carol Walton
President & CEO
The Parkinson Alliance
(800) 579-8440

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The Parkinson Alliance is a nonprofit, tax-exempt charitable organization under section 501(c)(3) of the Internal Revenue Code. Donations are tax-deductible as allowed by law. Copyright © 2020 The Parkinson Alliance. All rights reserved.