Robin Williams' widow Susan Schneider chats deadly Lewy body dementia

Robin Williams’ widow Susan says the Lewy body dementia diagnosis after his suicide was a relief after years of dealing with ‘an invisible monster’ that left the comedian confused and thinking the pair were ‘separated’ when told to sleep in different beds

  • Susan Schneider, 56, spoke of the heartbreak of discovering Robin Williams’ Lewy body dementia diagnosis after his death
  • She described the disease as the ‘invisible monster’ he battled through the last years of his life
  • Schneider added she was ‘relieved’ to learn its name after playing ‘whack a mole’ with his symptoms not knowing the cause 
  • Experts say they are surprised Williams could still walk and talk before his death  
  • The legendary comedian died by suicide in 2014

The heartbroken widow of actor Robin Williams revealed the relief she felt when he was diagnosed with Lewy body dementia after his death by suicide in 2014. 

Susan Schneider, 56, spoke to the Today show in an interview broadcast Tuesday in which she discussed the ‘invisible monster’ that chased her husband in the last years of his life, as they played ‘whack a mole’ with his symptoms. 

The legendary comedian was diagnosed with Parkinson’s disease three months before his death, aged 63, but he was actually suffering from Lewy body dementia, which led to Williams having difficulty grasping reality. Schneider said the condition even led him to worry that he and his wife were ‘separated’ when instructed to sleep in separate beds to relieve insomnia.     

Experts say the disease had such devastating effect on Williams’ brain that they are surprised he could still walk and talk before his death as Schneider now works to promote awareness in his honor. 

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On Tuesday, the late great Robin Williams’ widow Susan Schneider discussed the ‘invisible monster’ that caused him to take his life by suicide, at age 63, six years ago

 Schneider added she was ‘relieved’ to learn its name after playing ‘whack a mole’ with Williams’ symptoms not knowing the cause. Pictured, Schneider and Williams

Brain scan: The legendary comedian was diagnosed with Parkinson’s disease three months before his death, but he was actually suffering from Lewy body dementia

‘Robin and I knew there was so much more going on. Robin was right when he said to me, “I just want to reboot my brain,”‘ the landscape painter told Today’s Hoda Kotb. 

‘I was called in to sit down to go over the coroner’s report. They sat me and down and said he essentially Robin died of diffused Lewy body dementia. They started to talk about the neurodegeneration. He wasn’t in his right mind.’

She continued: ‘I was relieved it had a name. Robin and I had gone through this experience together, really being chased by an invisible monster. And it was like whack-a-mole with the symptoms. I left there with a name of the disease, the thing that Robin and I had been searching for.’

Following Williams’ tragic death, rumors circulated about the cause which Schneider described as ‘challenging’ to read about the ‘greatest love I’ve ever known, my best friend, my partner’. 

What is Lewy body dementia?

Lewy body dementia (LBD) is the second most common form of degenerative dementia after Alzheimer’s.

Unlike Alzheimer’s, LBD affects the brain regions responsible for vision – as opposed to memory.

That means sufferers may start with memory loss, but over time the more debilitating symptoms will be powerful hallucinations, nightmares and spatial-awareness problems.

 LBD is closely connected to Parkinson’s disease, meaning that many sufferers will develop Parkinson’s as well – as happened to Robin Williams.

She now hopes that new documentary ‘Robin’s Wish’ will tell the true story of his final years and the illness that led him to insomnia, paranoia and struggling to grasp reality. 

Schneider remembered the confusion Williams experienced when instructed by his doctors to sleep in a separate bed from her in order to get some relief from the insomnia that comes with Lewy.

‘He said to me, “Does this mean we’re separated?” And that was a really shocking moment,’ the American Brain Foundation vice chair said.

‘When your best friend, your partner, your love, you realize that there’s a giant chasm somewhere, and you can’t see where it is. But that’s just not based in reality. That was a hard moment.’

While Williams continued to work as the couple secretly battled with the symptoms, on set his co-workers were also beginning to notice a change. 

‘It was clear to me, it was clear to all of us on that set that something was going on with Robin,’ said ‘Night in the Museum’ director Shawn Levy.

‘Robin was struggling to remember lines and to combine the right words with the performance. Robin would call me saying is it usable, is any of this usable. I saw his morale crumble. I saw a guy who wasn’t himself and he thought that was unforgivable.’

Yet he continued to fight, unwilling to give in to the disease that was taking control of his brain. 

‘He wasn’t ready to go. He wasn’t ready to say goodbye to Susan or to life,’ his friend Stanley Wilson said.  

When he was finally diagnosed after his death, medical experts were amazed as to the extent that it had taken control of his body.  

The UCSF director of memory and aging, Dr. Bruce Miller, said he was ‘amazed’ that ‘Robin could walk or move at all’ after coming down with the deadly neurodegenerative disorder.

‘He wasn’t ready to say goodbye to Susan or to life,’ his friend Stanley Wilson said of Williams

‘Night in the Museum’ director Shawn Levy revealed he had noticed issues on set

Started streaming VOD on Tuesday! Robin’s health battle is depicted in director Tylor Norwood’s critically-acclaimed intimate documentary Robin’s Wish

Schneider- who met the twice-divorced father-of-three at an Apple Store in 2008 before marrying in 2011 – also fondly recalled how he said his life goal was to ‘help people be less afraid.’

‘I thought it was beautiful. And I said, “Honey, you’re already doing that. That’s what you do.” And that is pretty great,’ Schneider smiled.

‘His humor was like this secret weapon and there were so many times when he would see that someone needed a lift and then he would just inject a little bit of humor in just the right way to make a difference.’ 

His family and friends now wish to tell his story as they work to promote more conversation on the effects of brain disease. 

‘It no longer feels loyal to stay silent about it but maybe more loyal to share without shame without secrecy,’ Levy adds. 

Robin’s health battle is depicted in director Tylor Norwood’s critically acclaimed intimate documentary ‘Robin’s Wish’, which started streaming VOD on Tuesday.

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