‘Yours, Truly’ Campaign Focuses on Nonmotor Symptoms
To heighten awareness and understanding of nonmotor Parkinson’s disease symptoms such as hallucinations and delusions, Acadia Pharmaceuticals and StoryCorps have teamed up to open Yours, Truly, a multicultural storytelling campaign.
The national effort, which also seeks to reduce stigmas surrounding non-motor symptoms, is timed to National Family Caregivers Month, observed each November. It aims to give the Parkinson’s community a forum in which to share their stories in both Spanish and English. The campaign website also offers bilingual educational resources from advocacy groups across the nation.
“Parkinson’s disease affects about 1 million people in the United States, which may present with both motor and nonmotor symptoms,” Gus Alva, MD, of the University of California, Riverside Medical School, said in a press release.
“Around half of the people living with Parkinson’s disease may develop hallucinations or delusions over the course of their disease, but the majority of people don’t proactively tell their physicians about these symptoms.”
While Parkinson’s motor symptoms — those that affect body movement — may be more well known, nonmotor symptoms can be more difficult to manage and more disabling than motor symptoms such as stiffness, balance problems, tremor, and bradykinesia. In addition to hallucinations and delusions, such nonmotor symptoms can include depression and anxiety, sleeping problems, fatigue, constipation, impaired bladder control, and other cognitive changes. Signs and symptoms can vary among patients.
“Yours, Truly is the latest effort in Acadia’s steadfast commitment to elevate the realities of life lived with Parkinson’s disease, including those impacted by psychosis, while also seeking to reduce the stigma that is often associated with the disease,” said Steve Davis, Acadia CEO. “By preserving and amplifying the voices of those impacted, we hope others who may be experiencing or observing symptoms will feel empowered to speak out and advocate for themselves and their loved ones,” he said.
An online survey last year of StoryCorps participants found that 94% of respondents felt comfortable sharing personal things about themselves, and more than half thought they’d be more comfortable sharing with others in the future. Meanwhile, 91% said that listening to StoryCorps helped them better understand the experiences of other people.
Founded in 2003, StoryCorps has given more than a half-million people throughout the nation the opportunity to record interviews about their lives and experiences.
”We are excited to collaborate with Acadia Pharmaceuticals on the Yours, Truly campaign,” said Alissa Pelc, managing director, corporate partnerships, StoryCorps. “This work will build upon StoryCorps’ long-standing commitment to providing people with serious illness, and their loved ones, the opportunity to record and share their voices and stories, ensuring that the varied experiences of the Parkinson’s disease community will be preserved for generations to come.”
Early next year, the campaign will hit the road in StoryCorps’ MobileBooth, the Airstream trailer it uses, to safely record stories in person during a series of grassroots events. The effort also will enlist the help of advocacy partners to encourage members to submit their experiences through the Yours, Truly website. Submissions will be considered for recording by StoryCorps. All recordings will be preserved in the organization’s national archive.
“I am a bilingual (Spanish) physician who works with patients across cultures, and I believe that sharing personal stories about loved ones living with Parkinson’s disease may increase awareness of the symptoms while also helping reduce the stigma associated with the disease,” Alva added.
“As a result of hearing the experiences of others, patients and caregivers may be more inclined to ask for support and discuss potential treatment options,” he said.
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