“We are hardwired to connect with others, it’s what gives purpose and meaning to our lives.”
– Brené Brown
At PMD Alliance, we believe in the power of connection to enrich our lives and carry us through all of life’s seasons. With curiosity, we set out to answer the question: how does isolation impact mental and physical wellbeing, especially when you’re living with a movement disorder?
In January and February 2021, we created a survey and reached out to you to share your experience during the COVID-19 social restrictions. We knew your voices had the power to improve the quality of care for people with movement disorders everywhere. You answered the call.
Over 700 people with movement disorders and their care partners responded to our survey, sharing the impact of isolation on their mood and their non-motor symptoms, all to help move the needle forward.
Because of you, we were able to compile the data and, alongside doctors and nurse practitioners including Neal Hermanowicz, MD; Maria Cristina Ospina, MD; Yasar Torres-Yaghi, MD; Sherri Gould, MSN, NP-C; and Kelly Papesh, MSN, DNP, write a scientific paper titled, “Impact of Isolation During the COVID-19 Pandemic on Non-motor Symptoms of Parkinson Disease: A PMD Alliance Survey.”
The results were compelling: together, your voices told the story of the power of connection and the impact of loneliness. The data showed that a decline in social support outside the household during the COVID-19 social restrictions impacted mood, causing increased sadness, depression, and anxiety in people with Parkinson disease and other movement disorders. COVID-19-induced social isolation also exacerbated non-motor symptoms, including a decline in memory, problem solving, communication, new or worsening confusion, and new or worsening delusions.
The results shed light on the need for healthcare providers to focus strongly on encouraging people with movement disorders and their loved ones to build and maintain social connections – community uplifts us – and it elucidated the powerful link between mind and body.
Collecting your voices and telling this story matters. “When PMD Alliance gathers data from the community, we do it with the entire Movement Disorder Care & Support Ecosystem© in mind,” says Sarah Jones, PMD Alliance CEO. “We engage doctors, advanced practice providers, people with a movement disorder and their care partners…and all research we conduct is designed to tell a story that will make for better treatment, better care, and better outcomes. We want to truly change the experience of people living with a movement disorder.”
Jones went on to express the very real impacts of isolation: “People were struggling in their movement disorders and their lives because of broken hearts and a failure to thrive…This speaks to lived experience, not just numbers.”
The paper’s lead author, Neal Hermanowicz, MD, underscored this truth: “The results of our study emphasize that our wellbeing is served by the social connections that are important to us, that strengthen us…Our study shows clearly that medications and surgeries are only a part of the plan. We need our community to live at our best.”
Advancing the science matters. Stopping Parkinson disease and other movement disorders inn their tracks is vital. And so is love and belonging. Community helps us live better.
Because of you, our study has gone on to make waves in the medical community. The abstract to PMD Alliance’s “Impact of Isolation During the COVID-19 Pandemic on Non-motor Symptoms of Parkinson Disease: A PMD Alliance Survey” was selected to be featured at the Pan American Parkinson and Movement Disorders Congress. The Congress aims to spark discussion among healthcare providers in the movement disorders community, to push the clinical science forward, and to improve the quality of care you receive. The congress will unite the healthcare community across the Americas and will take place in May.