Dyskinesias are uncontrollable involuntary movements that are different from tremors. For people with Parkinson’s, it is a common experience that for some can be mild while for others can routinely negatively impact daily functions such as speech, chewing, swallowing, dressing, handwriting and other quality of life issues. The Parkinson Alliance, in its latest patient survey, addressed dyskinesias. The objectives of the survey were threefold — to learn about dyskinesias’ impact on daily function; to understand the relationship between dyskinesias, emotional well-being, and quality of life; and to provide general comments about and recommendations for treatment related to dyskinesias. The survey was taken by 935 individuals. The average age was 71, with an average disease duration of ten years.
Jeffrey Wertheimer, Ph.D., ABPP-CN, our Chief Research Consultant and Chief of Neuropsychology Services at Cedars-Sinai Medical Center, Los Angeles, California, assisted us in creating and analyzing this survey. Examples of comments include:
“Dyskinesia makes it harder to concentrate on what needs to get done ‐‐ writing, using computer, choosing words ‐‐ it is an extra distraction especially when there are time constraints and more than one or two projects that need to be done.”
“Dyskinesia is very annoying and uncomfortable. I feel I have to explain why I am jumping all over the place to strangers. When I am home I twist until my shoes and socks come off my foot. When I lie down to rest I sometimes move so much I need to get up.”
When Margaret Tuchman began creating these surveys, her goal was to provide a way to hear and validate the voice of the person with Parkinson’s. This latest patient-centered survey, which is now complete, carries on her tradition. We invite you to download, read, and share it with your doctors and loved ones. Download the complete survey here, free of charge.
Please also consider participating in our current survey, which is on urinary symptoms and Parkinson’s. The data collection for this survey will conclude on December 1, 2019. You can take the survey online here.
— Gloria Hansen, for The Parkinson Alliance