Robin Williams' Widow Reveals Neurological Disease That Gripped Her Late Husband

October 2nd 2016

Aron Macarow

Robin Williams' widow, Susan Schneider Williams, opened up this week about the disease that afflicted her husband and led to his death two years ago: Lewy body dementia.

Schneider Williams' heartbreaking essay to neurology professionals was titled "The terrorist inside my husband's brain" and described Williams' steep and uncertain descent into paranoia and confusion that led to his suicide in August 2014.

"Robin was losing his mind, and he was aware of it," Susan Williams wrote in the journal Neurology. "Can you imagine the pain he felt as he experienced himself disintegrating?"

Susan Williams' essay detailed the terrifying progress of her late husband's symptoms:

"By wintertime, problems with paranoia, delusions and looping, insomnia, memory, and high cortisol levels — just to name a few — were settling in hard. Psychotherapy and other medical help was becoming a constant in trying to manage and solve these seemingly disparate conditions."

Williams also described an intermittent tremor in his left hand, as well as an onslaught of other physical ailments, including "heartburn, sleeplessness and insomnia, and a poor sense of smell."

Eventually, the couple received the diagnosis of Parkinson's disease around three months before Williams would take his life. But that wasn't the illness that was afflicting him.

What is Lewy body dementia?

The late actor's symptoms were originally attributed to Parkinson's disease, but the coroner's report would reveal more than three months after his death that diffuse Lewy body dementia, or LBD, was the actual culprit. Lewy body dementia isn't as well known as more common diseases like Alzheimer's or Parkinson's despite being the second most common form of degenerative dementia. But it is also isn't rare or entirely unrelated: The illness affects more than 1.4 million individuals in the United States.

Parkinson's is a common misdiagnosis for LBD because of the similarity of symptoms, according to the Lewy Body Dementia Association:

"LBD is an umbrella term for two related diagnoses. LBD refers to both Parkinson’s disease dementia and dementia with Lewy bodies. The earliest symptoms of these two diseases differ but reflect the same underlying biological changes in the brain. Over time, people with both diagnoses will develop very similar cognitive, physical, sleep, and behavioral symptoms."

The symptoms are similar, but the required treatment can be very different.

"Not until after he left us would I discover that antipsychotic medications [like those used to treat my husband] often make things worse for people with LBD," Susan Williams noted.

Susan Willams' experience with the treatment of Robin Williams' LBD isn't unusual. In some cases, prescriptions used to treat individuals with Alzheimer's or Parkinson's can make those with LBD worse, too, which is why early and accurate diagnosis of LBD is essential, according to professionals.

It's why Williams said that she has joined the board of the American Brain Foundation, a nonprofit organization that funds research on neurological illnesses.

"Hopefully from this sharing of our experience, you will be inspired to turn Robin's suffering into something meaningful through your work and wisdom."

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