Parkinson’s Patients Often Battle a Hidden Foe: Stigma

On Tuesday, September 19, 2023, a new study found that people with Parkinson’s disease not only have physical and mental health challenges but also feel less hopeful and have lower self-esteem because of the stigma linked to their condition.

Some folks with Parkinson’s don’t even tell their family about it because they’re afraid their family might think differently of them. They worry that their family might make decisions for them, like putting them in a nursing home or taking control of their money and freedom. This is according to Dr. Alessandro Di Rocco, who teaches neurology at the Zucker School of Medicine at Hofstra/Northwell in Hempstead, N.Y.

The study discovered that when most people hear about Parkinson’s, they picture older white men who shake, drool, and hunch over. This narrow idea can be harmful for people with Parkinson’s who are not old, white, or male. It can even lead to a wrong diagnosis or a delayed diagnosis. Additionally, those with more visible physical symptoms of the disease may experience more stigma and discrimination.

The research also found that over half of people with Parkinson’s hide their condition because they’re afraid of being stigmatized. For example, the actor Michael J. Fox, who has Parkinson’s, kept his illness secret for many years before telling the public. Having symptoms of the disease can lead to anxiety because people may see you as someone with a disability, isolate you, or judge you negatively, the report said. Dealing with how society sees Parkinson’s can also make people feel bad about themselves, the report explained. When people realize they can’t do simple physical tasks, it can harm their self-esteem. Feeling bad about yourself can lead to depression, anxiety, and avoiding medical care.

The study was recently published online in the journal Parkinsonism and Related Disorders. Dr. Indu Subramanian, a neurologist at UCLA Health, in Los Angeles, said, “When people first find out they have Parkinson’s, they may feel embarrassed, ashamed, or wonder why it happened to them. They might think they’re alone and have negative thoughts.”

That’s why it’s important for family members to support and give time to their loved ones with Parkinson’s. If you notice they seem anxious or depressed, tell their doctor. Getting psychological support, like talking to a therapist, doing group exercises, meditation, or yoga, can help them connect with others and not feel so alone.

Media and public awareness are also important to reduce the stigma of Parkinson’s, according to Di Rocco. How the media shows people with Parkinson’s matters a lot. Public figures like Michael J. Fox, who are open about their challenges but also show their abilities, can make a big difference.

The Parkinson Foundation describes Parkinson’s as a slowly progressing disease that causes a gradual loss of nerve cells in the brain that make a substance called dopamine. Dopamine sends signals to the brain for movement and coordination. When there’s not enough dopamine, it can lead to shaking, slowness, and stiffness in the limbs. Other physical symptoms of Parkinson’s include changes in speech, loss of automatic movements, and handwriting changes. About 500,000 Americans are diagnosed with the disease, but the actual number is probably much higher because some cases go undiagnosed or are misdiagnosed. While there’s no cure for Parkinson’s, treatments can help manage its symptoms.

Even with a Parkinson’s diagnosis, it’s important to keep living life as fully as possible, said Subramanian. Parkinson’s patients should try to stay social, get exercise, go outside, and enjoy life.

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