Robin Williams Had This Creepy Lewy Body Symptom Best Life
Actor and comedian loved by his legion of fans, Robin Williams was considered a once-in-a-generation talent. But in August 2014, news broke that the Oscar-winning star had died suddenly, leaving behind three children and his wife, Susan Schneider-Williams. Since that tragic announcement, his widow has opened up about Lewy body dementia, the “phantom disease” that haunted Williams in his final days, ultimately leading to his suicide. In a new interview, Schneider Williams shed light on an “incredibly frightening” symptom that rocked them both. Read on to find out which symptom put the couple in “a very scary place” and why she now considers the diagnosis “everything.”
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In the months leading up to his death in 2014, Williams was misdiagnosed with Parkinson’s disease due to his battery of physical and neurodegenerative symptoms.
“It was not until the coroner’s report, three months after his death, that I learned that it was diffuse LBD [Lewy body disease or Lewy body dementia] who took it,” Schneider Williams shared in a article 2016 published by the journal Neurology. “The four doctors I subsequently met who had reviewed his records said it was one of the worst conditions they had seen.”
Although the actor’s official cause of death is suicide, his widow credits the “intense, confusing and relatively rapid onslaught” of his symptoms as the real reason for his tragic passing.
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Schneider Williams says that in October 2013, around the couple’s second wedding anniversary, Williams’ symptoms began to develop rapidly. “He had struggled with symptoms that seemed unrelated: constipation, difficulty urinating, heartburn, insomnia and insomnia, and a poor sense of smell – and a lot of stress. He also had a slight tremor in his left hand that went back and forth. ,” recalls Schneider Williams.
From there, new symptoms appeared: intestinal discomfort, fear, depression and anxiety, parkinsonian mask, language difficulty, sensitivity to drugs, cognitive difficulties and shuffling gait. The couple reunitedchasing symptoms for almost a year“because they appeared and disappeared seemingly at random,” Schneider Williams explained during a talk at the Life Itself conference.
“None of the doctors knew there was this phantom disease underlying all of this,” Schneider Williams said. CNN in an interview. “When this came to light, it was like finding out the name of my husband’s killer.”
One symptom that Schneider Williams found particularly troubling was her husband’s delusional loop: an obsessive or recurring fixation on beliefs that categorically defy reality. “Your brain concocts a story of what you think is reality,” she explained during her lecture. “And the people around you are unable to rationalize with you and bring you back to what’s actually real. So it’s incredibly scary for everyone around someone being cheated on as well as the cheated person.”
For Schneider Williams, the beloved actor’s main source of support, this symptom was crippling. “As a carer, you feel incredibly helpless when you realize, ‘Oh my God, nothing I say or do can bring it back to what’s real.’ And it’s a very scary place,” she said.
Exacerbated by his severe insomnia, Williams’ symptoms would worsen after dark, his widow said. “Our house was like Night at the museum at night,” Schneider Williams said. Pulling him out of his nocturnal delusions would take hours, sometimes days, she added. “Imagine the fear on fire, that’s it. “
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When she first spoke about her late husband’s illness, Schneider Williams expressed skepticism that an accurate diagnosis would have made a difference. “I am not convinced that the knowledge would have done much more than prolong Robin’s agony as he would surely become one of the most famous test subjects of new drugs and ongoing medical trials,” he wrote. her at the time. “Even though we felt a certain level of comfort knowing the name and a fleeting hope of temporary comfort with the drugs, the terrorist was still going to kill him. There is no cure and the steep and rapid decline of Robin was insured,” she added.
Now, six years later, Schneider Williams says she’s had a profound change of heart. “When I wrote this editorial, The Terrorist in My Husband’s Brain, I was convinced that a diagnosis wouldn’t matter anyway, because there’s no cure,” Schneider Williams told Life Itself. “But my way of thinking has completely changed since then. Diagnosis is essential, not only for patients and caregivers, but also for doctors, clinicians and researchers. If we had had an accurate diagnosis, we could have sought specialist care.”
“He who has hope has many days of feeling the darkness,” said Schneider Williams. “But the thing about hope is that no matter what, you dust yourself off, get up and move on. And you don’t do it alone.”