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Lewy body dementia: The neurological disorder suffered by Ted Turner, Robin Williams

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Lewy body dementia: The neurological disorder suffered by Ted Turner, Robin Williams


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Media mogul Ted Turner told CBS in an interview that he has Lewy Body Dementia. LBD is one of the three most common forms of dementia affecting 1.5 million Americans, including the late Robin Williams, but it is often misdiagnosed.
USA TODAY

CNN founder Ted Turner has revealed that he is suffering from Lewy body dementia, the same form of dementia that Robin Williams battled in the last few years of his life.

According to the website for the Lewy Body Dementia Association, LBD affects 1.5 million Americans. It is a progressive neurological disorder that affects a patient’s memory, cognition (especially decision making), mood, behavior and balance and is often misdiagnosed as Parkinson’s, as Williams’ case was, or bipolar disorder, as Turner’s was.

In an interview with Ted Koppel set to air on “CBS Sunday Morning” this weekend (9 a.m. EDT/PDT), Turner, 79, likened his case to a “mild case of Alzheimer’s … but not nearly as bad … Thank goodness, I don’t have that.” 

Displaying some of the memory problems characterized by LBD, he struggled to remember the name of his disorder,  “I also have got, let’s – the one that’s – I can’t remember the name of it … dementia.”

Turner said it leaves him “tired” and “exhausted,” adding that the other symptom that bothers him most is “forgetfulness.” 

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Williams’ case was far more severe, according to his widow, Susan Schneider, who called it “the terrorist inside my husband’s brain.” Worse, they didn’t know what the comedian had in the final year before he died by suicide in August 2014 at age 63.

As early as the fall of 2013, he began displaying what at the time seemed like unrelated symptoms: “Constipation, urinary difficulty, heartburn, sleeplessness and insomnia, and a poor sense of smell — and lots of stress,” according to Schneider. 

There is no definitive test for LDB, according to Rachel Dolhun, a doctor who wrote an explanatory article about the disease on the website of the Michael J. Fox Foundation for Parkinson’s Research. Rather, doctors arrive at the diagnosis using a patient’s imaging scans, physical exam, medical history and blood work.

Once diagnosed, cases are usually managed by neurologists. (They may refer patients to cognitive specialists and psychologists to help address the mental symptoms.)

Williams’ LBD diagnosis was only determined after an extensive autopsy, Schneider revealed in an essay in the medical journal Neurology

“All four of the doctors I met with afterward and who had reviewed his records indicated his was one of the worst pathologies they had seen,” she recalled. “He had about 40 percent loss of dopamine neurons and almost no neurons were free of Lewy bodies throughout the entire brain and brainstem.”

Schneider said that while anxiety was not new for the actor, who had long suffered from depression, the way he now handled it was “markedly out of character for him,” to the point of alarming her. “Not until after Robin left us would I discover that a sudden and prolonged spike in fear and anxiety can be an early indication of LBD,” she explained.

In the weeks before he was misdiagnosed with Parkinson’s in the summer of 2014, Williams arrived home from a movie shoot like “a 747 coming in with no landing gear.”

In hindsight, she realized that this was the point at which her Julliard-trained, Oscar-winning husband was no longer able to hide his illness.

The Parkinson’s misdiagnosis made things worse because people with LBD respond badly to drugs prescribed for that disorder, Schneider wrote.

“I will never know the true depth of his suffering, nor just how hard he was fighting,” she lamented. “But from where I stood, I saw the bravest man in the world playing the hardest role of his life. Robin was losing his mind and he was aware of it.”

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