Acadia Pharmaceuticals and StoryCorps Collaborate to Launch Yours, Truly – a Multicultural Storytelling Campaign to Bring Greater Awareness to Parkinson’s Disease Non-Motor Symptoms
- Yours, Truly Debuts During National Family Caregivers Awareness Month to Encourage the Parkinson’s
“Parkinson’s disease affects about one million people in
In a 2020 survey of StoryCorps participants, ninety-four percent felt comfortable sharing personal things about themselves, and more than half thought they would be more comfortable sharing with others in the future. Further highlighting storytelling’s impact to increase compassion, ninety-one percent of online survey respondents reported that listening to StoryCorps helped them better understand the experiences of people who are different from them.4
“We are excited to collaborate with
Signs and symptoms of Parkinson’s disease can vary with people experiencing both motor symptoms (such as slowness of movement, resting tremors, limb stiffness, and trouble with balance) and non-motor symptoms (such as constipation, impaired bladder control, anxiety and depression, loss of mental sharpness/acuity, hallucinations and delusions).5,6 When people living with Parkinson’s disease experience hallucinations and/or delusions related to their condition, it is known as Parkinson’s disease psychosis. A hallucination is defined as a perception-like experience that occurs without an external stimulus and is sensory (seen, heard, felt, tasted, smelled) in nature. A delusion is defined as a false, fixed belief despite evidence to the contrary.7
“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
The Yours, Truly campaign hopes to “hit the road” in the StoryCorps’ MobileBooth (an Airstream trailer that crisscrosses the country year-round) to record stories safely, in person, during a limited series of grassroots events planned for early 2022. With the help of advocacy partners, the program will also work to encourage their members to submit their experiences through YoursTrulyPDP.com.
Those interested in learning more about Parkinson’s disease and its non-motor symptoms, and in sharing their experiences, are encouraged to visit YoursTrulyPDP.com. There, members of the Parkinson’s disease community can submit their story for the opportunity to be recorded by StoryCorps and have their story preserved in StoryCorps’ national archive.
About Parkinson’s Disease and Parkinson’s Disease Psychosis
Parkinson’s disease is a progressive nervous system disorder that affects about one million people in
About Yours, Truly
Yours, Truly is a national program that centers on the power of storytelling to increase understanding of the non-motor symptoms associated with Parkinson’s disease, such as hallucinations and delusions. By recording stories and highlighting shared experiences, the goal of Yours, Truly is to provide a unique forum that helps to elevate the patient and caregiver voice while empowering people to seek the support they need. Visit YoursTrulyPDP.com to learn more about the program, listen to participant stories, and access event and informational resources.
Acadia is trailblazing breakthroughs in neuroscience to elevate life. For more than 25 years we have been working at the forefront of healthcare to bring vital solutions to people who need them most. We developed and commercialized the first and only approved therapy for hallucinations and delusions associated with Parkinson’s disease psychosis. Our late-stage development efforts are focused on dementia-related psychosis, negative symptoms of schizophrenia and Rett syndrome, and in early-stage clinical research we are exploring novel approaches to pain management, and cognition and neuropsychiatric symptoms in central nervous system disorders. For more information, visit us at www.acadia-pharm.com and follow us on LinkedIn and Twitter.
Founded in 2003 by
2 Forsaa EB, Larsen JP,
3 Fénelon G, Mahieux F, Huon R, Ziégler M. Hallucinations in Parkinson’s disease: prevalence, phenomenology and risk factors. Brain. 2000;123(Pt4):733-745.
4 StoryCorps. StoryCorps Annual Report 2020. Retrieved from https://storycorpsorg-staging.s3.amazonaws.com/uploads/StoryCorps_Annual_Report_2020_Final_V4-613a1ba454dad-613a1ba454dae.pdf.
5 Postuma RB, Berg D, Stern M, et al. MDS clinical diagnostic criterial for Parkinson’s disease. Mov Disord. 2015;30(12):1591-1601.
6 Chaudhuri KR, Prieto-Jurcynska C, Naidu Y, et al. The nondeclaration of nonmotor symptoms of Parkinson’s disease to health care professionals: an international study using the nonmotor symptoms questionnaire. Mov Disord. 2010;25:704-9.
7 Ravina B, Marder K, Fernandez HH, et al. Diagnostic criteria for psychosis in Parkinson's disease: report of an NINDS, NIMH work group. Mov Disord. 2007;22(8):1061-1068.
9 Schrag A, Hovris A, et al. Caregiver-burden in parkinson’s disease is closely associated with psychiatric symptoms, falls, and disability. Parkonism and Related Disorders. 2006;12:35-41.
10 Aarsland D, Bronnick K, Ehrt U. et al. Neuropsychiatric symptoms in patients with Parkinson's disease and dementia: frequency, profile and associated care giver stress. J Neurol Neurosurg Psychiatry. 2007;78:36-42.