The widow of actor and comedian Robin Williams has written a "special editorial" in the journal Neurology about her husband's Lewy body disease (LBD), saying she hopes their story will renew efforts to find a cure.

In the article, titled "The Terrorist Inside My Husband's Brain," Susan Schneider Williams, who has since become a director of the American Brain Foundation, writes she hopes it will help doctors "understand your patients along with their spouses and caregivers a little more" and encourage new efforts in research.

"Hopefully from this sharing of our experience you will be inspired to turn Robin's suffering into something meaningful through your work and wisdom. It is my belief that when healing comes out of Robin's experience, he will not have battled and died in vain," she adds.

In 2014, Robin Williams died by suicide after what Susan describes as "an intense, confusing, and relatively swift persecution at the hand of this disease's symptoms and pathology."

But it was not until the coroner's report that she learned that her husband had diffuse LBD. She reveals that all four of the doctors who reviewed Mr Williams' records after his death indicated his was one of the worst pathologies they had seen, with 40% loss of dopamine neurons and almost no neurons free of Lewy bodies throughout the entire brain and brainstem.

She describes their 7-year relationship as "a safe harbor of unconditional love that we had both always longed for," which was their armor "when LBD began sending a firestorm of symptoms our way."

Susan Schneider Williams and Robin Williams. Dreamstime

She reports that during 2013 her husband experienced an array of seemingly unrelated symptoms, including constipation, urinary difficulty, heartburn, sleeplessness and insomnia, a poor sense of smell, and a slight intermittent tremor in his left hand.

He then suddenly started having gut discomfort and bouts of fear and anxiety that "skyrocketed to a point that was alarming" and that increased over the next few months. "By wintertime, problems with paranoia, delusions and looping, insomnia, memory, and high cortisol levels—just to name a few—were settling in hard."

Severe Memory Loss

A few months later, Mr Williams had a panic attack and was prescribed an antipsychotic medication.

"It seemed to make things better in some ways, but far worse in others…. Not until after he left us would I discover that antipsychotic medications often make things worse for people with LBD," Ms Williams writes.

She remembers that her husband was having trouble remembering even one line for his scenes in a movie he was filming, while just 3 years earlier he had completed a full 5-month season on Broadway, often doing two shows a day with hundreds of lines and not a single mistake.

"This loss of memory and inability to control his anxiety was devastating to him."

Ms Williams says she felt powerless. "My husband was trapped in the twisted architecture of his neurons and no matter what I did I could not pull him out."

She likens her husband's return home from filming as "a 747 airplane coming in with no landing gear" and that she has subsequently discovered that people with LBD may appear stable initially, "but then, it is as though the dam suddenly breaks and they cannot hold it back anymore."

She describes Mr Williams' confusion and frustration.

"He kept saying, 'I just want to reboot my brain.' Doctor appointments, testing, and psychiatry kept us in perpetual motion. Countless blood tests, urine tests, plus rechecks of cortisol levels and lymph nodes. A brain scan was done, looking for a possible tumor on his pituitary gland, and his cardiologist rechecked his heart. Everything came back negative, except for high cortisol levels."

Rapid Decline

Mr Williams was diagnosed with Parkinson's disease in May 2014, and despite engaging in an intensive program of physical and psychological therapy, his symptoms worsened fast.

"His left hand tremor was continuous now and he had a slow, shuffling gait. He hated that he could not find the words he wanted in conversations. He would thrash at night and still had terrible insomnia.

"At times, he would find himself stuck in a frozen stance, unable to move, and frustrated when he came out of it. He was beginning to have trouble with visual and spatial abilities in the way of judging distance and depth. His loss of basic reasoning just added to his growing confusion. It felt like he was drowning in his symptoms."

Ms Williams notes that the symptoms would appear and disappear at random times. "I experienced my brilliant husband being lucid with clear reasoning 1 minute and then, 5 minutes later, blank, lost in confusion."

Just before he took his life, Ms Williams says she thought the symptoms were calming down, but "Monday, August 11, Robin was gone."

They had tried together to understand the cause of Mr Williams' illness "through the door of blind experience," and since his death Ms Williams has been continuing that work "in the realm of the science behind it."

She says discovering the diffuse LBD pathology from the autopsy report did not surprise her. "The mere fact that something had invaded nearly every region of my husband's brain made perfect sense to me."

Ms Williams says she has been driven to learn everything she can about LBD.

Addressing the neurology community, she writes: "You and your work have ignited a spark within the region of my brain where curiosity and interest lie and within my heart where hope lives. I want to follow you. Not like a crazed fan, but like someone who knows you just might be the one who discovers the cure for LBD and other brain diseases."

Neurology. Published online September 27, 2016. Full text

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