Patients with Parkinson’s disease often grapple with both the physical and psychological aspects of the condition, but a new study sheds light on the often-overlooked issue of stigma.
Researchers from the Zucker School of Medicine at Hofstra/Northwell and UCLA Health found that societal perceptions significantly affect the emotional well-being of those with Parkinson’s, leading to decreased levels of hope and self-esteem.
The Fear of Stigma
According to Dr. Alessandro Di Rocco, a neurology professor at the Zucker School of Medicine, many patients hesitate to disclose their condition to family and friends for fear of facing social discrimination or losing their independence.
“Some patients don’t even tell their children because they’re afraid they might start planning to put them in a nursing home,” said Dr. Di Rocco.
The study revealed that more than half of Parkinson’s patients choose to hide their diagnosis to avoid stigma, a phenomenon exemplified by actor Michael J. Fox, who kept his diagnosis a secret for years.
A Narrow Public Perception
Public perception often reduces Parkinson’s patients to a stereotypical image of older, white men with visible symptoms like drooling, shaking, and stooped posture.
This can result in delayed or misdiagnosed cases, particularly among those who do not fit this stereotype.
The Self-Stigma Dilemma
Beyond facing societal judgments, patients often internalize these stigmas, leading to self-stigma, defined as adopting negative attitudes about one’s own condition.
“Patients feel embarrassed, isolated, and fall into negative thought patterns,” said Dr. Indu Subramanian, a UCLA neurologist and study co-author. Self-stigma can result in neglecting healthcare, anxiety, and depression.
The Importance of Support and Awareness
Family support and professional psychological help are vital. “If you see signs of anxiety or depression in a loved one with Parkinson’s, bring it to the attention of their physician,” Dr. Subramanian advised.
She also endorsed the benefits of cognitive behavioral therapy and group activities like exercise and meditation for emotional support.
Dr. Di Rocco emphasized the crucial role of media and public figures in shaping perceptions. “The honest portrayal of the challenges and abilities of people with Parkinson’s by figures like Michael J. Fox is key,” he said.
A Complex Condition
Parkinson’s disease affects approximately 500,000 Americans, although experts suspect the actual number could be much higher due to undiagnosed or misdiagnosed cases.
The disease is progressive and causes the gradual loss of dopamine-producing nerve cells in the brain, leading to symptoms such as tremors and stiffness. While there is no cure, treatments can alleviate symptoms.
Moving Forward
The study underlines the need for greater awareness and support to help Parkinson’s patients not just manage their physical symptoms but also tackle the emotional and social challenges.
Dr. Subramanian stressed the importance of patients maintaining social interactions and continuing to live life to the fullest despite their diagnosis.
If you care about Parkinson’s disease, please read studies that Vitamin B may slow down cognitive decline, and Mediterranean diet could help lower the risk of Parkinson’s disease.
For more information about brain health, please see recent studies that blueberry supplements may prevent cognitive decline, and results showing that Plant-based diets could protect cognitive health from air pollution.
The research findings can be found in Parkinsonism and Related Disorders.
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