Listen, learn, and act: putting principles into action to support people living with Parkinson’s disease

At Adamas, our focus is on improving the lives of people living with?Parkinson’s?disease?(PD).?We are committed to?supporting?the?PD?community, educating?about?the disruption caused by motor complications and raising the urgency to treat OFF and dyskinesia – so people with Parkinson’s and their care partners can continue to live socially connected?and?active lifestyles. ?

We?connect daily with passionate people?affected by PD, including our?advocacy?partner organizations. We have forged?long-standing relationships?with influential advocacy groups,?aligned by?a?common cause and?our shared?commitment to?support the PD community.?Through COVID and in the years prior to 2020 – we have always built our relationships with the Parkinson’s community following these principles to strengthen our partnerships:?

Listen first?

To better understand the?needs?of people with Parkinson’s and their care partners,?we?immerse?ourselves in conversation.?Where?are?the gaps in terms of information when navigating a journey with Parkinson’s??What tools are resources are most helpful? We are grateful to have been told a tremendous amount?about the life of a person with Parkinson’s?and also?their care partner and families - by these people themselves.?And?we?are energized by the opportunity to?work closely with the PD community to ensure that gaps?are?filled, needs are met, and that we can add value to what already exists. ?

We?are constantly?learning?

Most people with Parkinson’s will face challenges with motor complications (OFF and dyskinesia) as their?disease progresses.?In a?recently conducted?survey in partnership with?PMD Alliance,?78% of people with Parkinson’s and care partners?reported an incomplete understanding of OFF, dyskinesia and?their?relationship to levodopa. We?had heard a lot about confusion surrounding motor complications?in conversations with the PD community?but?seeing the survey results helped solidify our next steps.?

We?are?committed to?action?

After listening and learning - we developed an educational program?focused on?motor complications and?their?broad effects on?the?social and emotional well-being in people living with PD,?care partners?and their families.?“Picture?More Time”?an?educational resource that was?recently?launched to?help people with Parkinson’s, care partners and?their families?understand?OFF and dyskinesia, to better?maximize good ON time so they can do more of what they love throughout their day. ?

The website,?www.PictureMoreTimePD.com?includes information and resources to raise awareness and conversations about PD motor complications and?their?wide-ranging impact on everyday activities. Currently?available?resources include:?

• Information on OFF, dyskinesia and their commonly confused?symptoms;??
• Doctor?discussion?guide to aid in conversations?with health care?providers;??
• PD support group guides to?facilitate discussions by?group members regarding?the impact?that?OFF and dyskinesia may have on daily tasks and social activities – and ways to manage these?challenges;?
• And tips and potential?ways to manage and maximize?good ON time.?

Our goal is to encourage people with PD to take charge and?learn about ways to maximize?good ON time and movement control throughout their Parkinson’s journey. We are?also proud to support?the efforts of?our advocacy partners?who are an important support?system and resource?to their members.?

We take our commitment to the PD community seriously and?will?continue to?develop?additional?resources the PD community requests. Please share with us your feedback and thoughts on living with Parkinson’s, motor complications and the?Picture More Time?program. You can email us directly at [email protected]. We look forward to listening?and learning from you. ?