“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.” includes the Framing OFF Through Art initiative as well as resources, such as the “Do Tell” Your Doctor Tool, based on a questionnaire, called the Wearing Off Questionnaire-9, developed by Dr. Mark Stacy and colleagues at Duke University, and the Statement of Need, which aim to improve communication of Parkinson’s symptoms.
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 are intended to help people with Parkinson’s and their care partners recognize symptoms associated with their OFF periods and better communicate about them to 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.
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.
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