“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.
There are nearly one million people living with Parkinson’s disease in the U.S. today.1 Even more people are affected as loved ones and care partners. While advances have been made in treatment and symptom management, many people with Parkinson’s fluctuate between periods where symptoms are controlled and OFF periods during which Parkinson’s symptoms return.2,3
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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