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Robin Williams’ son Zak opens up about the effect of deceased father’s misdiagnosis: ‘What I saw was frustration’

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The son of Robin Williams talks about his father’s psychological struggle as well as his own in the wake of the legendary comedian’s death in a new podcast interview.

Zak Williams, 38, sat down with author and host Max Lugavere in long heart-to-heart during the final part of his podcast, “The Genius Life,” which streams new episodes every Wednesday.

Their sincere conversation included their mutual struggles with depression, anxiety, and the pain of watching a loved one be devoured by a debilitating neurodegenerative disease: dementia with Lewy bodies. Both Lugavere and Williams have seen a parent suffer from the “frustrating” illness – whose pain has left a lasting impact on both men.

It was a poignant conversation to debut on the day that would have been Robin’s 70th birthday on July 21st.

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Robin Williams’ son Zak Williams described his’ frustrating ‘experience of watching his father struggle with dementia before his suicide in 2014.
(Photo by Albert Chau / FilmMagic)

“What I saw was frustration,” Williams said of his father’s diagnosis and misdiagnosis.

About two years before his death by suicide in 2014, doctors told Williams he had Parkinson’s disease, a disorder of the central nervous system that affects movement and causes its signature tremors.

But an autopsy later revealed that Robin and his medical team had treated the wrong disease. “What he went through did not match one by one [with] many Parkinson’s patients experience, “said the eldest son of Robin and his first wife, Valerie Velardi.

Williams believes his father’s misdiagnosis likely exacerbated the emotional toll that dementia inflicts on patients. In the years Robin lived without knowing the full extent of the disease, his son observed his struggle to focus and the subsequent “challenges of performing his craft”, which contributed to the actors’ anxiety and depression before his death.

“Lightning fast recall – that was his signature [on stage]”he said, referring to the impact of dementia on patients.

Both dementia with Lewy bodies [DLB] and Parkinson’s dementia [PDD] are subtypes of dementia, characterized by an accumulation of proteins that clump together in the brain’s neurons and inhibit both the central and autonomic nervous systems.

However, DLB differs from the other subtype with symptoms, including a remarkable decrease in cognitive abilities, and struggles with everyday mental activities such as planning, problem solving, focusing, and attention, according to the Lewy Body Dementia Association. Hallucinations, sleepiness, mood swings and physical stiffness are also characteristic of DLB.

Robin Williams teaches a class in a scene from the 1989 film 'Dead Poets Society'.

Robin Williams teaches a class in a scene from the 1989 film ‘Dead Poets Society’.
(Photo by Touchstone Pictures / Getty Images)

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Furthermore, the development of PDD is not initially guaranteed in all Parkinson’s patients – increasing Robin’s confusion in the years leading up to his death.

“It was a period of intense searching and frustration for him,” Williams said. “It’s just devastating.”

This devastation took its toll in the wake of his father’s death – in the form of post-traumatic stress disorder, alcoholism and depression: “I medicated myself through the trauma using alcohol.”

His declining health, which included bouts of psychosis, eventually galvanized Williams into seeking help – by helping others. “I was just tired of trying to treat myself with harmful drugs,” said Williams, who turned his negative experience into a positive one through advocacy.

“What is it that I need to not only take care of myself, but to show up for others?”, He asked himself to host Max Lugavere, who noted that men in particular are four times more likely to die by suicide compared to women according to studies.

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“I think many [men] feel isolated, many do not have the necessary outlets, “said the father of two, who found strength in a 12-step program and other forms of group therapy. He sympathizes especially with those who lack access to resources for mental health because of price or distance.Telehealth is working to expand access, he pointed out, but calls for personal connection together.

Especially among men, for whom the stigma of seeking mental health is much higher, men’s groups – in churches, bars or wherever they find common interest – can be a strong source of inspiration and support. Also, gender-exclusive men’s groups “enable them to focus on issues that are at hand without interpersonal gender dynamics,” Williams added.

The activist and entrepreneur who founded PYM, a mental wellness company specializing in “neuro-nutrition.” It was his battle with alcoholism that prompted his exploration of the subject, prompting him to learn more about how nutrient deficiencies affect the brain and psychological health, such as the neurotransmitter Gamma-aminobutyric acid (GABA), whose supplements made all the difference in his recovery. “It was like night and day,” Williams said.

Low levels of GABA in the brain have been linked to increased levels of anxiety and mood swings. According to Lugavere, the amino acid has been nicknamed “nature’s Valium”.

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PYM’s products and other forms of supplements are “not a cure”, Williams insisted and should be used in conjunction with a healthy diet, exercise and therapy for some. “They do not solve anxiety, but they try to solve the root fixes.”

His goal as a lawyer is to encourage people to think more about mental health in terms of physiological health: “People need to understand what they need for their bodies.”

If you or someone you know has suicidal thoughts, please contact the National Suicide Prevention Lifeline at 1-800-273-TALK (8255).

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