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When Life Gives You Parkinson’s podcast: The hidden struggle of Robin Williams

Robin Williams, right, and his wife Susan Schneider Williams arrive at The 2012 Comedy Awards in New York. Schneider wrote an essay published in the medical journal, "Neurology," on Sept. 27, 2016, that Williams had "chemical warfare in his brain" before his death. (AP Photo/Charles Sykes, File)

This is a special bonus episode of the When Life Gives You Parkinson’s podcast that we are calling Extra Dosage. Full episodes of Season 2 are available every other Wednesday. Feel free to write to us at parkinsonspod@curiouscast.ca.  

This podcast and these show notes talk about suicide. If you are in distress or worried about a friend or a loved one, call your suicide prevention hotline. It is available 24 hours a day, seven days a week in Canada at 1-833-456-4566. In the United States, it’s 1-800-273-8255. Please ask for help. Reach out and talk to somebody. Your life is worth living.

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A full list of suicide hotlines from around the world can be found here.

On this Extra Dosage episode of When Life Gives You Parkinson’s, we discuss the life and death of Robin Williams. We discuss his roles, friends, diagnosis, symptoms, decline, suicide, and the impact he’s had on all of us.

On Monday, Aug. 11, 2014, Robin Williams died by suicide. While he had his demons in drugs, alcohol and depression over the years, those aren’t what killed him.

Williams, diagnosed with Parkinson’s disease in May of 2014, was suffering severe symptoms of what would later be determined as Lewy body dementia (LBD).

Williams’ final year is detailed in a REELZ documentary in the U.S., called When the Laughter Stops: Robin Williams.

Dylan Thomas, an award-winning entertainment reporter and the film’s executive producer, is interviewed in this Extra Dosage episode of When Life Gives You Parkinson’s.

We discussed how Williams created a mask so realistic no one knew he was suffering.

“We never saw it; it wasn’t in front of our eyes,” Thomas said.

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“And that’s the great irony of the situation. Someone could achieve so much. He was a winner of an Academy Award, six Golden Globes, two Emmys, five Grammys — more than perhaps anyone could have ever imagined in a career.

“Yet at the same time, behind the scenes, there were issues in his private life that we didn’t really know about. And that was, you know, his health condition, the fact that he had Parkinson’s and that he had Lewy body syndrome.”

Click to play video: 'Understanding Lewy body dementia.'
Understanding Lewy body dementia.

His widow, Susan Schneider Williams, penned a letter to Neurology.org titled “The Terrorist Inside My Husband’s Brain.” In it, she details some of the darkness Robin was facing.

“Robin was growing weary. 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,” she wrote.

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“He would thrash at night and still had terrible insomnia. At times, he would find himself stuck in a frozen stance, unable to move, and frustrated when he came out of it. He was beginning to have trouble with visual and spatial abilities in the way of judging distance and depth.

“His loss of basic reasoning just added to his growing confusion.”

Five years later, no one can bring Williams back, but his films and specials live on and make us laugh so hard it feels like exercise. That’s probably his last poke at Parkinson’s. Even in death, he produces as much natural dopamine in brains with and without Parkinson’s than anyone or anything else.

If you have a comment or question about the podcast, you can email us: parkinsonspod@curiouscast.ca

We invite you to add your voice to the show and leave a message for us here.

Follow me, Larry Gifford

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

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Follow co-host and producer Niki Reitmayer

Twitter: @Niki_Reitmayer

Special thanks to…

Paul Mayhew Archer, writer and producer

Neurology.org – Read Susan Schneider Williams’ full letter “The Terrorist Inside My Husband’s Brain.

Dylan Howard, American Media

REELZ Channel

CBS News, NBC News, ABC News, CNN, Fox News

CBS This Morning

For more info on our presenting partner Parkinson Canada head to www.parkinson.ca.

The toll-free hotline 1-800-565-3000

Or follow them on Twitter @ParkinsonCanada

Thanks also to our content and promotional partners

Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation

Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease.

We LOVE that you are loving the “When Life Gives You Parkinson’s” podcast! If you haven’t subscribed yet — what are you waiting for? 

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