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Lewy Body Dementia Stole Robin Williams’ Mind And Body In His ‘Nightmare’ Final Months

By Shelley Hazen
Published on: 00:10 PST, Nov 4, 2015

It all started in November 2013. Within a year, Robin Williams disintegrated before wife Susan’s eyes. A year after his mystery symptoms appeared, Robin killed himself. But his widow said he likely only had three years to live.

In her first interview since Robin’s death last year, Mrs. Williams said they would’ve been hard years, and Robin likely would’ve been “locked up” by the end, ABC News reported. It wasn’t until after Williams’ death that the mysterious illness and its “endless parade of symptoms” were given a name.

In 2013, Robin began to suffer from stomach pain, which then spiraled into another symptom and then another — constipation, urinary trouble, and sleeplessness, the Los Angeles Times reported. By February, Williams knew something was wrong, and he shared his fears with his wife, who was concerned that Robin was becoming a hypochondriac.

“He said to me, he said, ‘There’s something really wrong with me.’ I said, ‘I know, honey. I know there is. And we’re going to get to the bottom of this. I swear. We’re going to figure this out.’ And inside my mind for the first time, I started to wonder, ‘Are we?'”

Williams’ strange symptoms ranged from sleep troubles, vivid dreams, hallucinations, delusions, difficulty recognizing faces, dizziness, vision troubles, and problems with balance, the Washington Post added. Then they progressed to loss of attention span and problem solving skills, paranoia, depression, and anxiety.

By April, Robin became depressed, but Mrs. Williams contends it was only a small part of his overall symptoms — the anxiety was worse. The next month, a doctor diagnosed Robin with Parkinson’s. His widow said they were relieved to finally have an answer to the strange and varied symptoms that had turned Williams’ life into a nightmare.

But still, Williams’ health got even worse. In July, she found Robin dabbing his head with a blood-soaked towel in the bathroom; Robin had hit his head while she was in the shower.

“It’s one minute, totally lucid… And then five minutes later, he would say something that wasn’t — it didn’t match.”

In the last months of his life, Mrs. Williams said her husband was trying to keep it together, but by August, “he could not. It was like the dam broke.” On August 10, she had what would be her last conversation with Robin. She was in bed and Robin was getting ready for bed as well, but offered her a foot massage first.

“And I said, ‘It’s OK, honey. Not — you know, it’s OK. You don’t have to tonight.’ And I’ll never forget the look in his eyes of just, sad because he wanted to. And I wished — you know?” she said. “Then he came back in the room a couple of times. Once to his closet. And he said — and then he laughed. And he said, ‘Goodnight, my love.’ And I said, ‘Goodnight, my love.'”

She went to work the next morning while Robin was still asleep and asked her assistant to call when Williams woke up. Mrs. Williams spent the morning worrying and knew something was wrong when the call didn’t come. When it finally did, she rushed home while screaming “Robin!” in the car, then found him surrounded by paramedics.

“And I just wanted to see my husband. And I got to see him… and I got to pray with him. And I got to tell (Robin), ‘I forgive you 50 billion percent, with all my heart. You’re the bravest man I’ve ever known.’ You know, we were living a nightmare.”

Robin had been suffering from a form of dementia that is common but poorly understood. Sufferers often aren’t diagnosed until an autopsy reveals the abnormal clumps of protein in the brain indicating Lewy body dementia. These clumps form at the ends of brain cells, where they connect to synapses and slowly destroy the brain piece by piece.

“It’s the most common disease you’ve never heard of,” Dr. James Galvin, a neurology and psychiatry professor noted.

No one knows why these clumps form, there is no family history and no cure. But it’s the third most common cause of dementia behind Alzheimer’s (which Robin Williams was diagnosed with as well) and makes up 20 percent of all cases. Patients diagnosed with LBD die within five to seven years after symptoms appear, though they can survive up to 20 years or decline in only two.

Robin had an appointment for neurocognitive testing a week after he died. Mrs. Williams believes Robin’s suicide was a way for him to take back control after LBD had taken away so much.

“Of what was going on in his mind, what made (Robin) ultimately commit — you know, to do that act. And I think he was just saying, ‘No.’ And I don’t blame him one bit. I don’t blame him one bit.”

[Photo by Anton_Ivanov / Shutterstock]

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