New Art Initiative Aims to Improve Understanding and Discussion of Parkinson’s Off Periods
Framing OFF Through Art includes artwork inspired by the experiences of patients with Parkinson’s and their caregivers. The artists who created the pieces also have personal connections to the disease. Each artist partnered with two patients and their caregivers. The art aims to educate and encourage others with Parkinson’s and their care partners to identify off-period symptoms and discuss them with their healthcare professionals.
“Art is a powerful way to engage a community, and in Framing OFF Through Art, our goal is to create an emotional connection that results in better dialogues about Parkinson’s symptoms,” Ron Cohen, MD, Acorda’s president and CEO, said in a press release.
The artwork debuted on Oct. 23 at an event in New York, where the artists, patients, and their caregivers were guests. The first piece was created by Julie B., whose mom is living with the disease, and is available on the Live Well. Do Tell website. More art and personal stories will be revealed each month.
“I know that some of these symptoms are really difficult to put into words. A visual representation can really communicate what you are going through,” Julie B. said in a video interview. “One of the big takeaways from this initiative is the idea of an open and honest conversation.”
Off periods are a common complication in Parkinson’s patients, characterized by the return of motor and non-motor symptoms — such as anxiety and sadness — when levodopa’s effects wear off. The need to better understand off periods, as well as how to talk with others about them, had been originally highlighted in the Live Well. Do Tell statement of need.
This report was the first output of the campaign, and includes six actions for the Parkinson’s community: tailor resources at diagnosis; broaden the Parkinson’s community’s ability to identify off periods; educate about motor fluctuations and how they do not necessarily mean disease progression; identify opportunities for caregivers to discuss their experiences with healthcare professionals; enhance the patient-clinician dialogue; and improve clinical practice via insights from movement disorder specialists and a new tool to measure off periods.
The report was based on insights from the campaign’s steering committee meeting that included Parkinson’s community leaders. Others may join the conversation by signing up for initiative updates and news.
“Off periods can be frustrating and challenging, as symptoms are varied and often difficult for patients to communicate effectively to their care providers,” said Matthew Stern, MD, director emeritus of the Parkinson’s Disease and Movement Disorders Center at Penn Medicine.
“By helping people with Parkinson’s understand how to verbalize what they are experiencing, we, as their healthcare providers, can better understand their needs and help them achieve a better sense of well-being,” added Stern, who is the chair of the Live Well. Do Tell steering committee.