Zak Williams, the son of the late Robin Williams, is remembering his dad by using his story to shed light on the stigma around mental health.
In a candid interview with Max Lugavere on his podcast The Genius Life, Williams opened up about his father’s misdiagnosis, watching him struggle with depression and anxiety, how the experience led him to be diagnosed with PTSD, and how he’s now using his advocacy to heal others.
"It’s a unique form a suffering in the family context," Williams said of dementia with Lewy bodies (DLB), which Robin suffered from the last two years of his life.
DLB, as defined by the Alzheimer's Society, is a type of dementia that shares symptoms with both Alzheimer’s disease and Parkinson’s disease, and may account for 10 to 15 percent of all cases of dementia.
The way someone is affected by DLB depends on where the Lewy bodies are in the brain, but most people with the disease have problems with movement and changes in mental abilities at the same time, according to the Alzheimer’s Society.
"We talked several times a week but then it got to the point where we’re talking every day," Williams said. "I wanted to be there for him on a daily basis. I really wanted to because [DLB] can be really isolating even if you’re with family and loved ones.”
Two years before Robins died by suicide in 2014, he was mistakenly diagnosed with Parkinson’s disease. However, though his direct cause of death was asphyxia due to hanging, an examination of his brain issue suggested that his real diagnosis was DLB.
Williams, who suggests his dad's misdiagnosis "might have exacerbated the situation," adds the drugs to treat Parkinson's are "no joke. They put you through it."
"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 explained. Still, "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."
The disease had a profound impact on Robin's comedic timing, or his “lightening-quick recall," which was his signature. "That’s part of being excellent at improvisation. [But] all the symptoms… presented in one part or another," Williams said.
"When he died by suicide the [DLB] had progressed, but he was only really two years in," Williams acknowledged. "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. 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.”
"For him to confide in me and share his experience, it’s frightening, you know, and I have a lot of empathy for family members going through similar or the same experience because it’s just devastating."
Following Robin’s death, Williams said he ended up self-medicating using alcohol as a means to "manage my mental health" to the point where it created "very harmful issues for me personally," including some levels of psychosis.
"When I spoke with a psychiatrist, I was diagnosed with PTSD," said Williams, who is now four years sober.
Through the support of family and friends, Williams wound up diving into mental health advocacy, working with organizations like Bring Change to Mind, which focuses on developing mental health communities in high schools across the United States and launching anti-stigma campaigns.
He found the experience "extremely healing."
According to the American Foundation for Suicide Prevention, men are nearly four times more likely to die by suicide than women. Williams argues, in large part, those numbers are due to the lack of opportunities for men to speak openly about mental health struggles.
"It very much relates to stigma and availability and openness to pursing treatment," he said. "I think many [men] feel isolated; many don’t have the outlets needed."
Furthermore, Williams argues, the language around suicide must change to help meet that end.
"I think it’s a matter of agency. The cause of death, to ‘die by suicide,’ it frames things very differently than ‘he killed himself,’" he explained. "It provides opportunity to give more space to the individual who dies because the whole premise of committing suicide suggests there was different motives, there were all sorts of underlying things at play, and when using the term ‘died by suicide’ it gives space to see it as more symptomatic — among other things."
These days, Williams is not only using his platform to help mental health organizations but he’s also become an entrepreneur, having founded PYM, a mental wellness company selling chews infused with all-natural amino acids — specifically the neurotransmitter Gamma-aminobutyric (GABA), which has been shown to help with anxiety.
While he’s certainly been through a lot in the last few years, Williams said that since the death of his father, he’s seen tremendous investments in new research around DLB, something that gives him encouragement.
"Relative to Lewis bodies dementia, there have been resources that have been unlocked and new sources of funding due to what’s been brought to light."
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