Susan Schneider wrote that his Lewy Body Dementia was like a ‘terrorist within his brain’ especially as the much-loved comedian, who took his own life in 2014, had no idea that the many symptoms he was experiencing were caused by dementia
When Robin Williams committed suicide in August 2014, the whole world mourned the loss of a true comedy icon. But what was particularly heart-breaking, was that the actor had no idea that the symptoms he was experiencing in the last few years before he died, and which his wife Susan Schneider claims led him to take his own life, were in fact caused by Lewy Body Dementia (LBD).
Writing as a guest essayist in the journal Neurology, Susan said:
‘I am writing to share a story with you, specifically for you. My hope is that it will help you understand your patients along with their spouses and caregivers a little more.
She describes the many symptoms that Williams experienced, and for which he never really received an official diagnosis of LBD – the closest they came was a diagnosis of Parkinson’s Disease. These included paranoia, delusions and looping, insomnia, memory and severe anxiety.
And for someone who was reliant on learning lines of script for films, the memory loss proved to be particularly traumatising.
‘During the filming of the movie [Night at the Museum 3], Robin was having trouble remembering even one line for his scenes, while just three years prior he had played in a full five-month season of the Broadway production Bengal Tiger at the Baghdad Zoo, often doing two shows a day with hundreds of lines – and not one mistake. This loss of memory and inability to control his anxiety was devastating to him.’
Susan believes that another issue was the fact her husband was able to mask many of his symptoms, and she believes that it is most likely he was suffering from hallucinations, although he never mentioned it to her or to doctors. He had also had depression in the past, so when he started showing depressive symptoms, it was thought it might be a reoccurrence, as opposed to a symptom of LBD.
‘I have since learned that people with LBD who are highly intelligent may appear to be okay for longer initially, but then, it is as though the dam suddenly breaks and they cannot hold it back anymore.’
By 2014, it was clear that Williams was struggling.
‘The parkinsonian mask was ever present and his voice was weakened. His left hand tremor was continuous now and he had a slow, shuffling gait. He hated that he could not find the words he wanted in conversations. He would thrash at night and still had terrible insomnia.’
It wasn’t until the autopsy details were released three months after Williams’ death that they were able to confirm that he had LBD. The doctors said he had a massive amount of Lewy bodies, which had damaged his brain so much that Susan describes their effect as ‘chemical warfare in his brain.’
She ends by addressing her readers – neurologists and doctors who read the journal – saying:
‘Hopefully from this sharing of our experience you will be inspired to turn Robin’s suffering into something meaningful through your work and wisdom. It is my belief that when healing comes out of Robin’s experience, he will not have battled and died in vain. You are uniquely position to help with this.’
You can read Susan’s full essay here.
For more information on Lewy Body Dementia, click here.