Parkinson’s Awareness Month 2020: Finding Hope and Social Connection Amidst Social Distancing
April is Parkinson’s Awareness Month, an opportunity to call extra attention to the progressive disorder and raise awareness of the need for continued research and new treatments. It’s also typically a time to forge bonds within the Parkinson’s community, connecting through shared experiences and strengthening our resolve as we come together for community walks and advocacy events. This year, with much of the country under stay-at-home orders and most of us practicing social distancing, Parkinson’s Awareness Month will look quite different than past observations. But this month still presents an important opportunity to raise awareness, foster community and build hope through connectedness.
Lundbeck embraces the Parkinson’s community, and to mark this unique Parkinson’s Awareness Month, we’ve collaborated with leading Parkinson’s patient advocacy organizations to compile messages of inspiration, along with a variety of ways for people to connect virtually for Parkinson’s Awareness Month.
Read on for ideas, tips and ways to come together while we’re apart.
“Things are different this April, that’s for sure. We want everyone to know that APDA is here for you, every day, no matter what. It is crucial for people impacted by Parkinson’s disease to find opportunities for physical, social and emotional engagement, even while they have limited options for getting out and about. We have so many online resources to help support you and useful tips to keep you connected and informed. We can’t wait to see everyone in person again, but until then, we’re still by your side virtually and we hope you’ll lean on us for whatever you need.”
— Leslie A. Chambers, President & CEO, American Parkinson Disease Association
APDA Parkinson’s Awareness Month virtual activities:
APDA Webinar: Join APDA for the webinar/teleconference “Spotlight on Parkinson’s Disease: What’s New in Brain Health,” with featured speaker: Dr. Daniel Weintraub. Perfect for people with Parkinson’s, family members and care partners. Register here.
APDA Symptom Tracker App: Today it is more important than ever to keep track of your symptoms and be able to communicate them to your neurologist via email. The free APDA Symptom Tracker mobile app will help you easily track symptoms, create a report and share it with your medical team. Download it today from the App store or Google Play.
APDA mental health publications: If you’re feeling anxious or depressed, APDA has a variety of resources with helpful advice about depression and cognitive changes.
“During this difficult time, many of our community members are navigating big changes to their routine—the loss of their regular in-person exercise classes, support groups, and visits with friends and family—that are critical aspects of their living well plans. Fortunately, each day brings new inspiration as more and more people from the Parkinson’s community move activities online and find new ways to connect. Our goal is to share resources about building resilience and cultivating joy, as well as spread the word about these online classes and groups.”
—Polly Dawkins, Executive Director, Davis Phinney Foundation
Davis Phinney Foundation Parkinson’s Awareness Month virtual activities:
Webinar series: Join the Davis Phinney Foundation for the Live Well Today Webinar “Social Connection and Parkinson’s,” featuring Dr. Al Condeluci. Register for the Social Connection webinar here and access webinar archives here.
Sidekicks® Anytime: Sidekicks® is a unique intergenerational program, offered by Lundbeck and the Davis Phinney Foundation in collaboration with leading Parkinson’s patient advocacy organizations. See below for information about virtual Sidekicks activities.
Davis Phinney Foundation Victory Summit®: Springtime Victory Summit events, day-long events that bring together people in local communities for inspiration and learning with leading researchers and clinicians, are moving online. Virtual Victory Summits can still help foster connection and educate the community on how to live with Parkinson’s, while providing a virtual way for people to stay engaged, connected and active during this time of social distancing. Participation in the Victory Summit events is free and open to all. Learn more here.
“Now, more than ever, connection and engagement within the Parkinson’s community is essential. During Parkinson’s Awareness Month, The Michael J. Fox Foundation is encouraging people with Parkinson’s and their families to follow its social channels and read and share commentary, best practices, tips and tricks on how the community is navigating this challenging time together.”
—Evelia Johnston, Senior Associate Director, Research Partnerships, The Michael J. Fox Foundation
The Michael J. Fox Foundation Parkinson’s Awareness Month virtual activities:
Fox Insight: During this time of social distancing, The Michael J. Fox Foundation reminds the Parkinson’s community that you can make a difference without leaving home by joining an online community that’s keeping Parkinson’s research going. Fox Insight is The Michael J. Fox Foundation’s online clinical study that is transforming scientists’ understanding of Parkinson’s and accelerating the development of new treatments. Every three months, Fox Insight sends emails with links to surveys to fill out about health, symptoms and experiences. Capturing this type of information from people with and without Parkinson’s helps researchers identify trends and patterns and answer critical questions about the disease. Join Fox Insight.
Webinars and resources: The Michael J. Fox Foundation is committed to sharing expert voices who can help patients and families navigate Parkinson’s-specific aspects of the coronavirus situation. The webinar “Information on Coronavirus for the Parkinson’s Community” is available on demand here. Also available is the blog post, “Ask the MD: Coronavirus and Parkinson’s,” featuring world-renowned movement disorder specialist Dr. Susan Bressman of Mt. Sinai Medical Center in New York City, who shared what she is telling her own patients about COVID-19.
Social conversations: Throughout Parkinson's Awareness Month, the foundation invites the Parkinson’s community to join the conversation on our social channels. Find them on Facebook and catch the latest on Instagram.
“The Parkinson’s Foundation has hope this Parkinson’s Awareness Month because we know that while we cannot always anticipate things beyond our control, we can better manage life’s fluctuations through preparation and community support. That’s why in these precautionary times we’re encouraging everyone in the PD community to honor Parkinson’s Awareness Month by taking actionable steps to #Plan4PD and share ways that help improve everyday life with Parkinson’s. Now more than ever, having a plan in place can better prepare people for the challenges Parkinson’s may present.”
—Leilani Pearl, Senior Vice President, Chief Communications Officer, Parkinson’s Foundation
Parkinson’s Foundation Parkinson’s Awareness Month virtual activities:
Daily Parkinson’s Awareness Month planner: The Foundation created a calendar for the month of April filled with a daily tip, idea and other action that can help someone better #Plan4PD each day during Parkinson’s Awareness Month. These calendars are downloadable from Parkinson.org/awareness.
Moving Day: While we cannot come together in-person for the springtime Parkinson’s Moving Day events, we can move together at the Foundation’s virtual Moving Day – Virtual Walk on Saturday, May 9. Tune in to the Parkinson’s Foundation Facebook page on May 9th at 1:00pm EST to participate in the virtual event.
Online educational events: The Parkinson’s Foundation has moved many of its educational events, including sessions on mindfulness, to online experiences. Learn more here.
“Every day, the PMD Alliance team is honored to hear your stories and talk with you about how you are navigating the unexpected and finding ways to live life to its fullest, despite the disease. Today with COVID-19, it’s no different. We are an organization built on the ability to pivot, be responsive (not reactive) and seek solutions that do not exist widely in our communities. At PMD Alliance, we build every program, including regionally sited events, live-stream programming, and all of our monthly e-newsletters to reflect our focus on building resilience, strengthening self-efficacy, generating confidence. We approach the COVID-19 virus in the same way.”
— Sarah Jones, Executive Director, PMD Alliance
PMD Alliance Parkinson’s Awareness Month virtual activities:
Neuro Life Online®: PMD Alliance is expanding its Neuro Life Online programming and services to ensure the community has something (at least weekly) to keep socially connected, continuing to learn, and active. View the full line-up of online programming here.
Staying Connected While Social distancing series: Social distancing doesn’t have to mean social isolation. In collaboration with movement disorder neurologist, Indu Subramanian, MD, PMD Alliance presents a special series of online programs designed to keep you connected, social, and positive during these uncertain times. Join to learn something new and stay in touch – in real time – with a community of experts and allies. Learn more here.
Resilience Online: Used to having a support group, social club and missing it? Feeling a need for additional support during this time? Join PMD Alliance for Resilience Online, weekly programs facilitated by a licensed clinical social worker that are open to all, with different meet-ups geared for different audiences. Learn more at PMD Alliance.
“At Lundbeck, we take our lead from the Parkinson’s community, finding motivation in the resilience and determination of people living with Parkinson’s and their care partners. This Parkinson’s Awareness Month, we’re maintaining a bright outlook, seizing opportunities to connect virtually through our Sidekicks Anytime program, and focusing on the future, when we can meet together in person for live Sidekicks events.”
—Charise Dunn, Senior Manager, Patient Advocacy, Lundbeck
Sidekicks Parkinson’s Awareness Month virtual activities
Sidekicks® is a unique intergenerational program, offered by Lundbeck and the Davis Phinney Foundation in collaboration with the American Parkinson Disease Association, The Michael J. Fox Foundation, Parkinson’s Foundation and Parkinson & Movement Disorder Alliance (PMDAlliance). It brings together youth and people with Parkinson’s to learn from one another and share their stories in a series of creative workshops.
Sidekicks Anytime: Sidekicks Anytime offers a creative way for people with Parkinson’s to remain connected while adhering to social distancing guidelines. Easy-to-follow recipe cards and demonstration videos detail Sidekicks Anytime projects that can be done from home, with only a few simple materials required. Invite a grandchild or loved one to complete the activity with you, and share your completed projects via text, email or video chat. Learn more and download activity recipe cards here.
