Parkinson's Patients Face a Concealed Adversary: Stigma

 

Parkinson's Patients Face a Concealed Adversary: Stigma

Patients diagnosed with Parkinson's disease not only grapple with the physical and mental challenges associated with their condition but also contend with a significant decline in hope and self-esteem due to the stigma attached to their illness, according to a recent study.

Dr. Alessandro Di Rocco, a neurology professor at the Zucker School of Medicine at Hofstra/Northwell, highlighted that some individuals with Parkinson's are hesitant to disclose their diagnosis, fearing potential negative consequences from family members such as changed perceptions, concerns about nursing home placement, or a takeover of their financial independence and freedom.

This study revealed that Parkinson's is often associated with a stereotype of older white men exhibiting visible symptoms like tremors, drooling, and a hunched posture. This stereotype can be harmful to individuals with Parkinson's who do not fit this mold in terms of age, gender, or race, potentially leading to misdiagnosis or delayed diagnosis. Additionally, those with more noticeable physical symptoms may experience heightened stigma and discrimination.

The research findings indicate that over half of Parkinson's patients choose to conceal their diagnosis due to these concerns. Notably, actor Michael J. Fox, an advocate for Parkinson's research through The Michael J. Fox Foundation, concealed his condition for years before going public. The fear of being identified as someone with a disability can cause anxiety, isolation, and a sense of diminished character.

The study also discusses self-stigma, where individuals with Parkinson's internalize negative stereotypes about their condition, leading to low self-esteem. Awareness of their limitations in performing simple motor tasks can further erode their self-esteem, potentially resulting in depression, anxiety, and reluctance to seek medical care.

Dr. Indu Subramanian, a neurologist at UCLA Health, emphasized the common emotional struggles people face upon receiving a Parkinson's diagnosis, including embarrassment, shame, and self-blame. She stressed the importance of family support, suggesting that loved ones provide time and encouragement and raise concerns about anxiety or depression with the patient's physician. Psychological support, such as cognitive-behavioral therapy, group exercise, meditation, and yoga, can help individuals connect with others during their challenging journey.

Raising public awareness through media and public figures like Michael J. Fox is vital to combating the stigma surrounding Parkinson's disease. Di Rocco stressed that changing the perception of the illness is essential to reducing stigma, as it can empower individuals and highlight their abilities alongside their challenges.

Parkinson's disease, characterized by the gradual loss of dopamine-producing nerve cells in the brain, causes symptoms like tremors, slowed movements, and stiffness. However, there are other non-motor symptoms, including speech changes, loss of automatic movements, and handwriting alterations. While around 500,000 Americans are diagnosed with Parkinson's, the actual number is likely higher due to undiagnosed or misdiagnosed cases. While Parkinson's is incurable, treatment can significantly alleviate its symptoms.

Despite a Parkinson's diagnosis, it's crucial for patients to strive for a fulfilling life. Dr. Subramanian emphasized the importance of staying socially active, engaging in exercise, getting sunlight exposure, and maintaining a positive outlook on life.