‘I just want to reboot my brain’: How dementia gripped Robin Williams

In the months before his death, Robin Williams was besieged by paranoia and so confused that I could not ‘t remember her lines while filming a movie, as his brain was ambushed by what doctors later identified as an unusually severe case of Lewy body dementia .

“Robin was losing his mind and he knew it. Can you imagine the pain he felt as he experienced disintegration?” Widow of actor, Susan Schneider Williams, wrote in a heartrending Editorial published this week in the journal Neurology.

The title of his piece: “. The terrorist inside the brain of my husband”

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Susan Williams went to the publisher to neurologists, writing that he hoped the story of her husband “will help you understand your patients along with their spouses and caregivers a little more.”

Susan Williams has previously blamed dementia with Lewy bodies of her husband’s death by suicide in 2014. About 1.3 million Americans have the disease, which is caused by protein deposits in the brain. Williams was diagnosed with Parkinson’s disease a few months before his death; signs of dementia with Lewy bodies in brain were not discovered until autopsy.

The editorial tells the despair of Williams as he tried to understand a bewildering variety of symptoms that started with insomnia, constipation, and an impaired sense of smell and soon entered a spiral of extreme anxiety, tremors, and reasoning difficulties.

“My husband was trapped in the twisted architecture of its neurons and no matter what I did I could not get” wrote Susan Williams.

For almost a year, in a painful odyssey that will be familiar to many patients, Williams tried to find out what was wrong with himself – and fix it. He underwent tests and examinations, tried new drugs, physical therapy did, worked with a coach, and sought out alternative treatments such as self-hypnosis and yoga.

“He continued,” I just want to restart my brain ‘, “he said his widow

.

Nothing worked.

Susan Williams drew the first signs of trouble for a celebration of their wedding anniversary, about 10 months before her husband died, when “intestinal discomfort” caused him to fear and anxiety. Which triggered months of escalating problems.

Williams fought especially during the filming of “Night at the Museum 3” in the spring of 2014. He had a panic attack and had trouble remembering “even a line” in his role as Teddy Roosevelt. By contrast, Susan Williams wrote, he had remembered hundreds of lines without error while performing on Broadway three years earlier.

Another distinctive feature of the wrenching disease :. The frequent trips in and out of clarity

“I experienced my husband being bright clear lucid reasoning with 1 minute and then 5 minutes later, blank, lost in the confusion,” he wrote.

Dr. James Leverenz, a behavioral neurologist at the Cleveland Clinic, said STAT reading the editorial “brings back memories of many different patients I have seen with very similar experiences.”

frequent moments Robin Williams’ lucid, he said, illustrate what sets the condition apart from advanced Alzheimer where such flashes are rare. “I’ve had patients with severe dementia of Lewy bodies rather than sit in the clinic and make jokes with me nuanced reality,” Leverenz said.

After the death of her husband, Susan Williams wrote that he had long conversations with doctors to retrace and understand what had happened. All four doctors who had examined his records, he said, “said his was one of the worst conditions they had seen.”

Although she and her husband craved a diagnosis during those baffling months before his death, said Susan Williams in retrospect, she is “not convinced that knowledge would have done much more than prolong the agony of Robin “and make it” one of the most famous songs of testing new drugs and clinical trials in progress “.

There are no drugs approved to treat the disease, but Leverenz said that early diagnosis can allow patients access to drugs off-label, which can be very useful, so atypically for dementia to control their disease. About half of patients are diagnosed when they are still alive, he said.

Susan Williams has joined the board of the American Brain Foundation, a nonprofit organization that funds research on neurological diseases.

“We hope that from this sharing of our experience,” he wrote, addressing the neurologists, “who are inspired to turn the suffering of Robin into something meaningful through their work and wisdom.”

He added: “. Do not give”

This article was updated to include comments from a neurologist.

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