Robin Williams’s son Zak says dad's misdiagnosis may have 'exacerbated' his symptoms: 'Those drugs are no joke'
Zak Williams, the son of the late Robin Williams, remembers his father by using his story to shed light on the stigma surrounding mental health.
In an open interview with Max Lugavere on his podcast The Genius Life, Williams spoke about his father's misdiagnosis, watched how he struggled with depression and anxiety, how the experience led to him being diagnosed with PTSD, and how he now uses his advocacy to heal others.
"It's a unique form of ailment in a family context," said Williams of the Lewy Bodies Dementia (DLB) Robin suffered from for 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 can account for 10 to 15 percent of all dementia cases.
Zak Williams, the son of the late Robin Williams, uses his platform to talk about mental health. (Photo by Christopher Smith / Invision / AP)
How someone is affected by DLB depends on where the Lewy bodies are located in the brain, but most people with the disease have movement problems and mental changes 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 talk every day," said Williams. "I wanted to be there for him every day. I really wanted to because [DLB] can be very isolating, even when you are with your family and loved ones."
Two years before Robins died of suicide in 2014, he was mistakenly diagnosed with Parkinson's disease. Although his direct cause of death was suffocation by hanging, examination of his brain problem suggested that his real diagnosis was DLB.
Williams, who claims that his father's misdiagnosis "may have made things worse," adds that the drugs used to treat Parkinson's are "no joke.
"The diagnosis was different from the disease, so I think it could be a situation where you are taking things and only experiencing the side effects [of the drug]," he explained. Still, "There are a number of benefits, but I found that they are also very tough on the mind and body, so it was hard to see."
The illness had a profound impact on Robin's comedic timing, or his "lightning-fast memory," which was his signature. [But] all of the symptoms… present in one part or another, ”Williams said.
"When he died of suicide, the [DLB] had made progress, but he was only two years old," Williams admitted. "I don't mean to say it was a short time - it felt a lot longer than it actually was - but it was a time of intense searching and frustration for him. From my point of view, it felt so sad to me because I loved. He was so much like a father, but he was also one of my best friends and we spent so much time together. "
"It's scary that he should confide in me and share his experiences, and I have a lot of compassion for family members who have similar or same experiences because it's just devastating."
After Robin's death, Williams said he treated himself with alcohol to "manage my mental health" until it caused "very harmful problems for me personally", including some psychosis.
"When I spoke to a psychiatrist, I was diagnosed with PTSD," said Williams, who has been sober for four years.
With the support of family and friends, Williams eventually delved into mental health advocacy, working with organizations like Bring Change to Mind, which focus on developing mental health communities in high schools in the United States and working with anti-stigma Start campaigns.
He found the experience "extremely healing".
According to the American Foundation for Suicide Prevention, men are almost four times more likely to die from suicide than women. Williams argues that these numbers are in large part due to the lack of opportunities for men to speak openly about mental health issues.
"It's very much related to stigma and availability and openness to purse treatment," he said. "I think a lot of [men] feel isolated; a lot of them don't have the necessary outlets."
In addition, Williams argues, the language surrounding suicide must change to achieve that goal.
“I think it's a matter of choice. The cause of death 'dying by suicide' puts things very differently than 'he killed himself' ”, he explained. "It offers the opportunity to give more space to the deceased because the whole premise of suicide suggests that there were different motives, that all sorts of underlying things were at play, and when the term 'died by suicide' is used, does it offer space to see it more symptomatically - among other things. "
Today, in addition to using his platform to help mental health organizations, Williams has become an entrepreneur by founding PYM, a mental wellness company that sells chewy candies made with all-natural amino acids - specifically the neurotransmitter gamma-aminobutyric acid ( GABA). which has been shown to help with anxiety.
Although he's certainly gone through a lot in recent years, Williams said he has seen tremendous investments in new research related to DLB since his father's death, which is encouraging.
"Regarding dementia with Lewis bodies, resources have been released and new sources of funding because of what has been brought to light."
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American actor and stand-up comedian (1951-2014)
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