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Dublin: 3 °C Tuesday 12 November, 2019
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Robin Williams' widow has described "the terrorist inside my husband's brain"

At the time of Williams’ death in 2014 he was suffering from a form of dementia known as Lewy body disease.

Robin Williams-Estate Fight Susan Schneider and Robin Williams, pictured in 2012 Source: AP/Press Association Images

THE WIDOW OF actor Robin Williams has described the sudden deterioration in the actor’s health prior to his death

Writing in the The Journal of the American Academy of Neurology, Susan Schneider outlined the last months of her husband’s life.

Her husband died by suicide in August 2014. At the time he was suffering from a little-known brain condition called Lewy body disease (LBD), an aggressive form of dementia.

“I am writing (in) the hope that it will help you understand your patients… a little more,” Schneider said.

Not only did I lose my husband to LBD, I lost my best friend.

Schneider describes how her husband had been suffering from a number of symptoms in late October 2013, most specifically extremely heightened stress levels.

“His fear and anxiety skyrocketed to a point that was alarming,” she said.

By wintertime, problems with paranoia, delusions and looping, insomnia, memory, and high cortisol levels were settling in hard.

Schneider said that by April 2014 her husband’s memory had deteriorated to the point that he could not remember even one line of dialogue on the set of his movie Night at the Museum 3, and that she was unable to quell his sudden fears regarding himself and his interactions with others.

When he returned from filming the movie, he arrived “like a 747 coming in with no landing gear”, according to his wife.

I will never know the true depth of his suffering. On top of being a genius he was a Julliard-trained actor. For people who are highly intelligent LBD may seem to be ok for longer, before the dam breaks.
Robin was losing his mind and he was aware of it.

“Powerless and frozen, I stood in the darkness of not knowing what was happening to my husband. Was it a single source, a single terrorist, or was this a combo pack of disease raining down on him?” she wrote.

In May 2014 Williams was diagnosed with Parkinson’s Disease, while at the same time he was suffering from chronic insomnia. Schneider writes that the only one of 40 symptoms of LBD he did not suffer from was hallucinations.

“One professional stated, ‘It was as if he had cancer throughout every organ of his body’. The key problem seemed to be that no one could correctly interpret Robin’s symptoms in time,” she said.

Schneider writes that the night before he died Williams said “goodnight, my love” to her one last time. “His words still echo through my heart today.”

She appeals to the neurologists she is writing for to “be inspired to turn Robin’s suffering into something meaningful through your work and wisdom”.

“I know you have accomplished much already in the areas of research and discovery toward cures in brain disease. And I am sure at times the progress has felt painfully slow. Do not give up,” she says.

You are uniquely positioned to help with this.

If you need to talk, contact:

  • Samaritans 116 123 or email jo@samaritans.org
  • National Suicide Helpline 1800 247 247 – (suicide prevention, self-harm, bereavement)
  • Aware 1800 80 48 48 (depression, anxiety)
  • Pieta House 01 601 0000 or email mary@pieta.ie – (suicide, self-harm)
  • Teen-Line Ireland 1800 833 634 (for ages 13 to 19)
  • Childline 1800 66 66 66 (for under 18s)

Read: Former Minister Bobby Molloy dies aged 80

Read: “When you have a child with a heart complaint… it’s a really, really frightening situation to be in”

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