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How Robin Williams' Misdiagnosis of Parkinson's Disease Affected His Physical and Mental Health

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Editor's Note

If you experience suicidal thoughts or have lost someone to suicide, the following post could be potentially triggering. You can contact the Crisis Text Line by texting “START” to 741741.

For people who live with a chronic illness or another health condition, getting diagnosed can open up the doors to getting the right type of treatment. But, what happens when the diagnosis is incorrect?

In a podcast episode of The Genius Life, Robin Williams’s son Zak spoke about how the late actor being misdiagnosed affected Williams’s physical and mental health on what would have been his father’s 70th birthday. Williams was diagnosed with Parkinson’s disease, but after his suicide, it was discovered that he had Lewy body dementia, the second-most common type of progressive dementia after Alzheimer’s disease.

Parkinson’s disease and Lewy body dementia (LBD) have overlapping symptoms. Most people develop Parkinson’s disease after the age of 60, and it is characterized by tremors and impaired balance and coordination, according to the National Institute on AgingLBD tends to appear after the age of 50, and is characterized by cognitive fluctuations. People with Parkinson’s disease have an increased risk of developing LBD.

Zak found that Williams was frustrated because his experience with illness was not one of what someone with Parkinson’s disease may experience. “What he was going through didn’t match one to one [with what] many Parkinson’s patients experience,” Zak said on the podcast. “So, I think that was hard for him.”

Zak also expressed concern that heavy medication used to manage Parkinson’s disease may have been unnecessary and a burden for his father. “Those drugs are no joke,” he said. “They’re also really hard on the mind and the body.”

When someone has a sick family member, it can be normal to try and do more to help them. However, people who live with illnesses may feel overwhelmed or frustrated by the symptoms that they’re experiencing. “I couldn’t help but feel beyond empathy. I couldn’t help but feel frustrated for him,” Zak said. “It can be really isolating even when you’re with family and loved ones.”

After Williams’s suicide, The Mighty asked members of their community to share how LBD affected a family member. Many community members, including this one below from Deneice Spurgeon, emphasized the importance of patience:

My dad was fortunate enough to know everything as it developed. We kept nothing from him. His hallucinations became something he enjoyed sharing. That was all he had. We let him, and we listened. It’s a terrible disease. It took my dad from me less than a year ago. There needs be be more research.

Williams’s symptoms and his worsening mental health worsened for two years before his death. “It felt a lot longer than it actually was because it was a period for him of intense searching and frustration,” Zak shared. After his father’s suicide, Zak struggled with his own mental health, until he thought help because he was “was just sick and tired of trying to treat [himself] using harmful means.”

Image via Wikimedia Commons

Originally published: July 23, 2021
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