“Live Well. Do Tell.” is an initiative, created by Acorda Therapeutics with input from a multi-disciplinary steering committee of Parkinson’s disease leaders and experts, to generate a shared understanding, build awareness and develop an approach to bridge communication gaps among people with Parkinson’s, care partners, advocacy and healthcare professionals (HCPs) to inspire a movement for optimal conversations.
“Live Well. Do Tell.” – Framing OFF Through Art is an initiative using the power of art to illustrate how OFF periods, periods in which Parkinson’s symptoms re-emerge, impact those living with Parkinson’s.
This series of artwork and personal stories is intended to help people with Parkinson’s and their care partners recognize symptoms associated with their OFF periods and better communicate about them with their healthcare team.
Check out the artwork, and be sure to speak with your health care professional about all of your Parkinson’s symptoms.
Check out facts and figures about Parkinson’s disease and OFF periods.
Recognizing OFF periods can be challenging due to the great variability in symptoms.4-7 People with Parkinson’s who experience OFF periods may not discuss their symptoms or communicate the impact to their HCPs as they may believe that the re-emergence of symptoms is just part of their condition or because they fear that it is a sign of their Parkinson’s disease progressing. Additionally, people with Parkinson’s may overlook or attribute non-motor symptoms like anxiety, fatigue, pain or depression to other causes.
While many people are familiar with the motor symptoms of Parkinson’s, Matthew Stern, M.D., Professor Emeritus of Neurology, Perelman School of Medicine, University of Pennsylvania, discusses how Parkinson’s symptoms can vary and may also include non-motor symptoms.
The Statement of Need, the first output of “Live Well. Do Tell.”, includes six actions for the Parkinson’s community to help identify and communicate about their symptoms. These actions are based on insights from our inaugural Steering Committee meeting as well as research conducted by Acorda and third parties.
Check out photos from the inaugural
Steering Committee meeting
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