Yours, Truly is a program that provides those with Parkinson’s disease an opportunity to learn more about the nonmotor symptoms associated with Parkinson’s and lend their voice to join those speaking out to raise awareness. By showcasing the stories of those impacted by this condition, the program aims to inspire others in the Parkinson’s community to share their own experiences and encourage others to speak out.

Parkinson’s disease affects about 1 million people in the United States, and may present with both motor and non-motor symptoms.1 These nonmotor symptoms, as a whole, can be more troublesome than motor symptoms in terms of quality of life, and may include nervousness, difficulty concentrating, and hallucinations and delusions.2 Hallucinations and delusions may be experienced by around 50% of people with Parkinson’s disease over the course of the disease.3

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 a perception-like experience that occurs without an external stimulus and is seen, heard, felt, tasted or smelled. A delusion is a false, fixed belief despite evidence to the contrary.4

The stigma around nonmotor symptoms may create challenges.5 Although around half of the people living with Parkinson’s disease may develop hallucinations or delusions over the course of their disease, the majority of people don’t proactively tell their physicians about these symptoms.3,6 Also, as a recent survey shows, caregivers to those living with Parkinson’s disease psychosis are hesitant to discuss Parkinson’s non-motor symptoms involving psychosis with physicians in the presence patients so as not to embarrass them.7

Sponsored by Acadia Pharmaceuticals, Yours, Truly highlights the stories of those impacted by Parkinson’s disease and provides educational resources about Parkinson’s-related hallucinations and delusions.

Acadia believes the voices of people affected by Parkinson’s disease matter and by making these materials more accessible, Acadia hopes to amplify the diverse stories present in the Parkinson’s community.

Visit www.YoursTrulyPDP.com learn more, listen to stories and access educational resources available in English and Spanish.

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1 Parkinson’s Disease Foundation. What is Parkinson’s disease? Retrieved from https://www.parkinson.org/Understanding-Parkinsons/Statistics. Accessed January 2023.
2 Martinez-Martin P, Rodriguez-Blazquez C, et al. The Impact of Non-Motor Symptoms on Health Related Quality of Life of Patients with Parkinson’s Disease. Mov Disord. 2011;26(3):399-406.
3 Forsaa EB, Larsen JP, Wentzel-Larsen T, et al. A 12-year population-based study of psychosis in Parkinson disease. Arch Neurol. 2010;67(8):996-1001
4 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 Jun 15;22(8):1061-8.
5 Henry RS, Perrin PB, Lageman SK, et al. Parkinson’s Symptoms and Caregiver Affiliate Stigma: A Multinational Study. Current Alzheimer Research. 2021; 18:1-10
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 Questionanaire. Mov Disord. 2010;25(6):704-709.
7 Mantri S, Edison B, Azyoud S.M., et al. Knowledge, Responsibilities, and Peer Advice from Care Partners of Patients with Parkinson Disease Psychosis. Frontiers in Neurology. 2021; 12: 633645.