In an interview with The Genius Life podcast’s Max Lugavere, 38-year-old Williams spoke candidly about watching his dad’s “frustrating” illness.
The conversation was shared on what would have been the Jumanji actor’s 70th birthday.
Williams died by suicide in 2014, aged 63. An autopsy revealed the actor was unknowingly suffering from Lewy body dementia, an incurable brain disease. Before his death, he was being treated for Parkinson’s disease.
“What he was going through didn’t match one to one [with] many Parkinson’s patients’ experiences,” said Zak. “It was a period for him of intense searching and frustration, it’s just devastating.”
Both Lugavere and Williams revealed they have experienced watching a loved one struggle with Lewy body dementia (LDB) in the past.
The illness causes protein deposits to develop in nerve cells in brain regions that are involved in thinking, memory, and movement (motor control), which inhibits both the central and autonomic nervous systems.
“What I saw was frustration,” said Williams of his dad’s misdiagnosis and diagnosis.
“The diagnosis was different than the disease so I think it could be a situation where you’re taking stuff and experiencing purely the side effects of [the drug].”
He added: “There’s a range of efficacy but what I found was they’re also really hard on the mind and body, so that was hard to see.”
“When he died by suicide the [LBD] had progressed, but he was only really two years in,” he continued. “I don’t want to say it was a short period — it felt a lot longer than it actually was — but it was a period for him of intense searching and frustration.
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“From my lens, it felt so sad for me because I loved him so much as a dad but also he was one of my best friends and we spent so much time together.”
Williams also revealed that he had a lot of empathy for families going through this experience because it’s just “devastating”.
Following his dad’s death, the mental health advocate revealed that he started trying to numb his emotions with the help of alcohol, which created “very harmful issues” for him.
“When I spoke with a psychiatrist, I was diagnosed with PTSD,” he revealed.
Williams is now four years sober and works with mental health organisations like Bring Change to Mind, which is a nonprofit organisation dedicated to encouraging dialogue about mental health, and to raising awareness, understanding, and empathy.
If you or someone you know needs support or advice, you can contact the Samaritans helpline by calling 116 123. The helpline is free and open 24 hours a day every day of the year. You can also contact Samaritans by emailing firstname.lastname@example.org. The average response time is 24 hours.
In the US, you can contact Mental Health American on 1-800-23-TALK (8255) to reach a 24-hour hotline
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