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| Susan Schneider Williams and Robin Williams at an awards show in New York in April 2013. |
For the first time in more than a year, the widow of the actor Robin Williams is speaking publicly about the circumstances that preceded Mr. Williams’s death, and sharing details about a disease he had when he died.
magazine and with ABC News, the widow, Susan Schneider Williams, laid the blame for her husband’s suicide in 2014 not on depression but on diffuse Lewy body dementia.
“It was not depression that killed Robin,” Mrs. Williams said in the People magazine interview. “Depression was one of let’s call it 50 symptoms and it was a small one.”
She added: “This was a very unique case and I pray to God that it will shed some light on Lewy bodies for the millions of people and their loved ones who are suffering with it. Because we didn’t know. He didn’t know.”
Mr. Williams, the stand-up comic and star of “Mork & Mindy,” “Good Morning, Vietnam,” “Good Will Hunting” (for which he won an Oscar) and “Dead Poets Society,” killed himself on Aug. 11, 2014, in the home he shared with Mrs. Williams in Tiburon, Calif. He was 63.
A statement issued that day by his press representatives said the actor had “been battling severe depression of late.”
Mrs. Williams said in a statement three days later that her husband “struggled with his own battles of depression, anxiety, as well as early stages of Parkinson’s disease, which he was not yet ready to share publicly.”
But a report from the coroner of Marin County, Calif., released that fall, said that Mr. Williams had diffuse Lewy body dementia. That disease is frequently confused with Parkinson’s because of their overlapping symptoms.
Mrs. Williams said in the ABC News interview that Mr. Williams had had “this endless parade of symptoms” since fall 2013, “and not all of them would raise their head at once.”
“It was like playing Whac–a-Mole. Which symptom is it this month? I thought, ‘Is my husband a hypochondriac?’ We’re chasing it and there’s no answers. By now, we tried everything.”
Some 1.3 million Americans have Lewy body dementia and its symptoms are harder to live with each day, especially for relatively young people like Mr. Williams.
The disorder is often mistaken for Alzheimer’s disease, or Parkinson’s disease: there’s an Alzheimer’s-like slippage in memory and thinking, as well as stiffness and movement problems seen in Parkinson’s. The similarities in the three disorders are extensive enough that it often takes more than a year — and multiple visits to specialists — to get an accurate diagnosis.
“It took almost three years for us,” said Norma Loeb, a board member of the Lewy Body Dementia Association, whose mother, Lillian, died of the disorder in September. “I had to go online and research it myself; that’s the norm.”By that time, more distinctive signs of the dementia are usually established, including chronic sleep problems; “fluctuations” in thinking, in which mental acuity comes and goes; and visual hallucinations, often of animals, children, or miniature people.
Those visions might be persistent enough to look like schizophrenia or another psychiatric disorder, said Dr. James E. Galvin, a professor and associate dean for research at Florida Atlantic University. “In those cases, people are being treated with psychiatric drugs” that are not appropriate for the condition, he said.
In the early stages, many people with the disease are aware of all these changes — and of their prognosis. The decline is steady, steeper than the average 10 percent drop a year in tests of cognitive function seen in Alzheimer’s; and there is no cure. Mr. Williams may have been both aware, and strong enough to act to avoid his fate.
“If you’re young, if you have insight into what’s happening, and you have some of the associated symptoms — like depression, and the hallucinations,” said Dr. Edward Huey, an assistant professor of psychiatry and neurology at Columbia. “That’s when we think the risk of suicide is highest.”
Mrs. Williams, who was the actor’s third wife, recently settled a legal dispute over his estate with his three children by his first two wives.
Last winter, Mrs. Williams petitioned California Superior Court in San Francisco, saying she believed she was owed funds and property under a trust that Mr. Williams created for her.
The actor’s children, Zak, Zelda and Cody Williams, said in their own court filings that Susan Williams had prevented them from collecting personal items from their father that he had promised them, and that she was seeking money to which she was not entitled.
The terms of the settlement were not disclosed, though Mrs. Williams said she got to keep “the few emotional items she requested.”
http://www.nytimes.com/2015/11/04/health/robin-williams-lewy-body-dementia.html?_r=4&smid=tw-nytimes&smtyp=cur
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