April is Parkinson’s Disease Awareness Month – a time to bring greater attention to Parkinson’s and its associated symptoms while encouraging and empowering those impacted to share their experiences.
Parkinson’s disease is a progressive central nervous system disorder that affects about one million people in the United States.[1],[2] Signs and symptoms can vary with people experiencing both motor symptoms (such as bradykinesia, resting tremors, rigidity and balance) and lesser-known non-motor symptoms (such as anxiety and depression, loss of mental sharpness/acuity, hallucinations and delusions).2–[3][4][5][6]
Hallucinations can include experiencing things that others don’t, like seeing people or animals that are not there.4 Delusions are often described as false beliefs, such as a person thinking that someone is stealing from them or putting them in harm’s way.4 When patients experience hallucinations and/or delusions related to Parkinson’s disease, it is known as Parkinson’s disease psychosis.4
Even though approximately half of all Parkinson’s patients may experience these non-motor symptoms over the course of their disease, many patients and caregivers are unaware or unprepared for the possibility that they may even occur.[7] Because of this, many don’t realize that hallucinations and delusions can be related to a Parkinson’s diagnosis.
In addition, patients or caregivers may be too embarrassed to discuss certain non-motor symptoms with their healthcare provider, and many times, the stigma surrounding these symptoms makes them difficult to discuss.3 That’s what Yours, Truly – a bilingual and multicultural English and Spanish educational campaign – aims to change.
Sponsored by Acadia Pharmaceuticals and in collaboration with the national nonprofit organization, StoryCorps, Yours, Truly has been collecting real-life stories from patients and caregivers on YoursTrulyPDP.com to raise awareness of Parkinson’s various symptoms and the many ways the disease can impact people across all cultures, especially in underserved minority communities. Yours, Truly is continuing to grow as a forum for the community and helping people start conversations around their Parkinson’s experience, learn from others and be inspired to speak up for themselves or their loved ones.
Do you have a personal story about the non-motor symptoms of Parkinson’s disease to share? To learn more about the symptoms of Parkinson’s and how you can help reduce the stigma, visit YoursTrulyPDP.com today.
[1] Parkinson’s Foundation. What is Parkinson’s? Retrieved from https://www.parkinson.org/understanding-parkinsons/what-is-parkinsons. Accessed March 30, 2022.
[2] Postuma, RB, et al. MDS Clinical Diagnostic Criteria for Parkinson’s Disease. Mov Disorders. 2015; 30(12): 1591-1599.
[3] 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(6):704-709.
[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] Martinez-Martin P, Schapira AHV, et al. Prevalence of Nonmotor Symptoms in Parkinson’s Disease in an International Setting: Study using Nonmotor Symptoms Questionnaire in 545 Patients. Mov Disord. 2007;22(11): 1623-1629.
[6] Olanow CW, Schapira AHV. 2012. Parkinson’s Disease and Other Movement Disorders. Fauci AS (Ed), Harrison’s Principles of Internal Medicine (18th ed.).
[7] Forsaa EB, Larsen JP, Wentzel-Larsen T, et al. A 12-year population-based study of psychosis in Parkinson’s disease. Arch Neurol. 2010;67:996-1001.
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