Robin Williams knew something was changing inside him. What he never knew was the real name of the disease that was hitting his brain.
In the last months of his life, the man capable of building characters and jokes with an extraordinary mental speed began to be faced with difficulties he did not recognize.
There was not only one symptom.
There were anxiety, insomnia, digestive problems, alterations of the smell and an intermittent tremor to the left hand. But there were also moments of confusion, fear and paranoia.
And then something particularly hard for an actor who had made improvisation and memory two of his most powerful instruments: during the shooting of Night at the Museum: Secret of the Tomb came to have difficulty remembering the jokes.
Williams was still practicing, undergoing visits, exams and therapies and looking for answers.
On May 28, 2014 a diagnosis arrived: Parkinson.
But Robin felt there could be something else.
He asked the neurologist if he could have Alzheimer’s, a form of dementia or even schizophrenia. At that time, however, doctors did not have sufficient evidence to confirm those assumptions.
Robin Williams died on 11 August 2014. She was 63.
Only after his death a much more complex picture emerged.
The neuropathological relationship of autopsy, which arrived three months later, showed a serious and widespread pathology from Lewy bodies.
Lewy's bodies are abnormal accumulations of alpha-sinuclein protein in nerve cells. Diseases associated with these deposits can cause a complex combination of cognitive disorders, sleep, behavior and movement.
This variety can make the picture difficult to recognize and explain why, while Williams was still alive, it was so complicated to bring everything back to one cause.
Susan Schneider Williams, his wife, spent the following year trying to rebuild what had happened.
Specialists examined clinical documentation, brain images and autopsy results. The painting that emerged was impressive.
The neurologist Bruce Miller, from the University of California in San Francisco, later explained that almost no actor brain region had been spared. Given the extension of the pathology, he was struck by the fact that Williams had still managed to walk and move.
In 2016 Susan told those last months in an article published in the medical journal Neurology.
His reconstruction added a profoundly human dimension to clinical history: Robin had sensed that something didn't work, had searched for explanations, had entrusted to the doctors and had even pronounced the word “demence” in his questions.
He came close to the problem without knowing it all the way.
It was the neuropathological examination after his death to identify the widespread pathology from bodies of Lewy who had hit his brain.
But when that painting finally got a name, Robin Williams couldn't know him anymore.