Dyskinesias – involuntary, erratic, writhing motions of the arms, legs, face, or trunk- are a symptom experienced by up to 30% of people with Parkinson’s taking levodopa. PMD Alliance set out to explore how these easily visible and incontrollable movements can impact everyday life. We created and distributed a survey in partnership with Adamas Pharmaceuticals, and over 700 of you took the time to share your experiences with us. Thank you! This April, the results were presented at the 2021 American Academy of Neurology (AAN) annual meeting and published in the peer-reviewed journal Neurology.
The survey had a total of 775 respondents, made up of 527 people living with Parkinson’s, and 248 care partners. Of those, 51% said they experience dyskinesia, 76% experience OFF time, and 48% said they experience both. We also asked how these symptoms affected mood, behavior, and quality of life: 76% said they had altered plans, 41% said they felt isolated and lonely, and 51% said they felt nervous and uncomfortable about everyday activities like driving or holding a grandchild. Our partners at Adamas created an infographic outlining the key findings of the survey.
Also noteworthy in the results, an alarming 78% of respondents reported being confused about dyskinesia, OFF time, and the relation to levodopa. To address this, PMD Alliance created an educational mini-series with movement disorder neurologist Jill Farmer, DO, MPH on Neuro Life Online®. If you missed it live, watch Dr. Farmer explain dyskinesia, the connection to levodopa therapy, and treatment options to address this symptom on these replays.
Our partners at Adamas used the survey results as a basis for a new disease state education website, called Picture More Time. Visit www.picturemoretimepd.com and check out their doctor discussion guide and support group discussion guides.