Robin Williams Disease: When Robin Williams took his own life in August of 2014, his wife Susan Schneider Williams would soon find out about a disease that neither of them had ever heard of, but that had plagued their lives. The actor was diagnosed with Lewy body dementia in October 2014 after a brain autopsy revealed the disease’s presence.
Schneider Williams, an artist and advocate for LBD awareness and research shared this story at the Life Itself conference, a health and wellness event produced in partnership with CNN. “A few months before he passed, he was given a Parkinson’s (disease) diagnosis,” Williams said. As the saying goes, “That was only the beginning.”
Robin had been experiencing severe changes in her memory, movement, personality, reasoning, sleep, and mood since May of 2014, but she was incorrectly diagnosed in June of that year. The comic had been through a battery of tests intended to diagnose his condition, but all of them returned negative. Doctors “didn’t know there was this ghost disease underlying all of this,” Schneider Williams said in a CNN interview. “When that came out, it was like discovering my husband’s killer’s name,” she said.
Memory loss, shifts in personality, and trouble reasoning are just some of the symptoms of dementia, a disorder of the brain caused by damage or disease. About 1.4 million Americans suffer from LBD, but its precise cause remains unidentified. Yet, the protein alpha-synuclein, which is generally found in the brain and to a lesser extent in the heart, muscle, and other tissues, is linked to the development of the disease.
Possible regulation of neurotransmitters by alpha-synuclein. But when this protein builds up to form masses (called Lewy bodies) in the brain, the consequences are catastrophic. According to the Lewy Body Dementia Association, the two forms of Lewy body dementia are Lewy body dementia and Parkinson’s disease dementia. Together, they are the second most common form of dementia after Alzheimer’s disease.
Early symptoms of LBD are similar to those of Alzheimer’s disease and Parkinson’s disease, leading to frequent misdiagnosis. Due to the inability to test for Lewy body proteins in the same way that Alzheimer’s disease proteins can, LBD has frequently diagnosed post-mortem when families request autopsies for closure, additional information, or to donate a loved one’s brain for research.
Since LBD is a movement disorder, it is often misdiagnosed as Parkinson’s disease in patients who first present with movement problems. Dementia from Parkinson’s disease is a common secondary symptom in these patients. Over time, “dementia with Lewy bodies” can also be diagnosed based on more specific changes in cognitive function.
Although many people with Parkinson’s will eventually be diagnosed with LBD, it is not a universal disease feature. Schneider Williams said that understanding the cause of her husband’s “pain and suffering” after years of uncertainty brought on by misdiagnosis and overlapping symptoms was like seeing a “pinprick of light” in the darkness.
That’s when I finally started to feel like I was healing on my own,” she said. Something invisible and truly terrifying happened to us. Afterward, I was left to investigate the underlying scientific mechanisms that explained my observations. You couldn’t call Robin insane. That was a significant worry of his.
Schneider Williams has been in a “rabbit hole of discovery” and advocacy for the past eight years, hoping that other patients and caregivers will have the same access to truth, understanding, and healing. She has worked on the documentaries “Robin’s Wish” and “Spark: Robin Williams and His Battle with Lewy Body Dementia,” as well as served on the board of the American Brain Foundation for six years and contributed to the creation of the Lewy Body Dementia Fund and its $3 million research grant award to find an accurate biomarker.
Schneider Williams said, “I couldn’t live with myself if I didn’t tell this story.” I had no idea what kind of adventure lay ahead of me. But I had to go there. She acknowledged that it would be “a tall order” for doctors and researchers to prevent patients from going through what her husband did but that “progress is being made.”
Chemical Warfare In His Brain
According to Schneider Williams, the over 40 symptoms of Lewy body dementia can suddenly appear or disappear. Impairment in thought, attention, movement, visual hallucinations, sleep disturbances, behavioral and mood changes, and changes in bodily functions like urination control are all symptoms.
Schneider Williams explained that her husband’s persistent worry “marked the beginning of a cascade of symptoms.” She also noted that it started in 2012 when Williams became less social at California’s Throckmorton Theatre, where he used to try out new material and riff with other comedians for fun.
Williams’s worries went beyond what he’d felt before and were typical for a well-known actor dealing with the stresses of a global profile. Paranoia, according to Schneider Williams, emerged as a significant symptom later on. An enormous number of Lewy bodies were found in his brain’s amygdala. Therefore, the capacity to control our emotions, especially fear and anxiety, resides in that brain region. Not to mention Robin’s was pretty much useless.
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Williams, too, experienced delusional looping near the end. “Your brain is concocting a story of what you think the reality is,” Schneider Williams explained. “And the people around you can’t talk sense into you or ground you in reality. Everyone in the vicinity of a deluded person, including the deluded person, experiences extreme fear.
When you realize that “Oh my gosh, nothing I say or do anymore can bring him back to what’s real,” it can leave you feeling helpless as a caregiver. She added, “And that is a terrifying place.” The effects of Lewy body disease are devastating. Williams’s stressors included his job, his sudden forgetfulness and personality changes, and his inability to get enough sleep, which eventually led to severe insomnia and eliminated night and day for him and his partner.
“Our home was like ‘Night at the Museum’ at night,” Schneider Williams remarked. She also noted that it could take him hours or even days to escape his nighttime delusions. This is “fire in your imagination.” According to Schneider Williams, hallucinations are “a key hallmark of LBD that can help identify the disease.” Still, they are also problematic symptoms that many LBD patients don’t want to discuss.
She had no idea her husband had hallucinations until she spoke to a doctor who had reviewed his records. A hallucination is something only you see, making it easier to conceal than a delusion involving a storyline with others who can deconstruct it for you. To put it simply, Lewy body disease is a problem with the brain’s circuitry. According to what Schneider Williams said at Life Itself, Robin’s psychiatric symptoms were caused by changes in his brain’s chemistry and structure. Depression was one of them.
“indicated he was one of the worst pathologies they had seen,” Schneider Williams said of his consultations with medical professionals after receiving his diagnosis. According to her 2016 article “The terrorist inside my husband’s brain,” published in the journal Neurology, “he had about 40% loss of dopamine neurons.” “In effect, you could say he had chemical warfare in his brain because the massive proliferation of Lewy bodies throughout his brain had done so much damage to neurons and neurotransmitters.”
According to Schneider Williams, he was dangerously susceptible to the side effects of antipsychotic medication, which can occur in some people with LBD. Schneider Williams explains that “usual, well-worn pathways can provide comfort” if people with neurodegeneration can still do things like go to work or walk their dog. Isolation and a worsening of symptoms can result when those things become impossible.
Every Yard Gained Matters
Schneider Williams said she is “just now starting to pick up the pieces of my own life,” nearly eight years after her diagnosis launched her research journey. Schneider Williams admitted that he needed some time alone to “go underground” and rediscover what drove him to art in the first place.
She will continue to be involved with the documentaries and the Lewy Body Dementia Fund, of which she is the lead chair, and a portion of the proceeds from all future print sales will be donated to LBD research. The research continues as Schneider Williams broadens her scope while welcoming LBD advocates.
Dr. James Galvin, professor of neurology and director of the Comprehensive Center for Brain Health at the University of Miami Miller School of Medicine, remarked, “We’re always learning more and more about the disease, from the basic science studies looking at cells and test tubes, to animal models, to human observational studies.”
At least two new diagnostics, including a spinal fluid test by the company Amprion and a skin biopsy test by CND Life Sciences, have been introduced recently, Galvin said. Misfolded synuclein can be detected and followed through a spinal fluid test, aiding in diagnosing brain diseases like LBD. This skin biopsy test was developed to aid in the diagnosis of potentially fatal neurological conditions.
The availability of diagnostics “that can confirm in life that someone has Lewy body disease” is “crucial” for both establishing a correct diagnosis and furthering study, as Galvin points out. Clinical trials for new medications will have an easier time enrolling patients if they can begin treatment sooner.
Robin Williams as a Denver Broncos cheerleader in 1979. pic.twitter.com/ShZSNKZ0Ux
— Robin Williams (@RobinWilIiams_) February 6, 2015
Cognition Therapeutics, led by Galvin, has been awarded $29 million by the National Institutes of Health to test the drug CT1812 for LBD. Alzheimer’s medicines are used to treat cognitive symptoms, Parkinson’s medicines are used to treat motor symptoms, narcolepsy medicines are used to treat attention deficits, and psychiatry medicines are used to treat behavioral symptoms, Galvin said in a press release.
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CT1812 has the potential to aid in the removal of toxic proteins from the brains of those with LBD, preventing further loss of function. “When I wrote that editorial, ‘The terrorist inside my husband’s brain,’ I was convinced that a diagnosis would not matter anyway because there is no cure,” Schneider Williams said at Life Itself.
However, since then, I have had a radical shift in perspective. In medicine, a proper diagnosis is crucial not only for patients and their caretakers but also for practitioners and academics. Obtaining specialized care would have been possible had we a proper diagnosis in the first place.
According to Angela Taylor, the interim executive director of the Lewy Body Dementia Association, “We have formed a Research Centers of Excellence Program with 22 sites across the United States to collaborate on clinical trials, assess needs for resources and infrastructure, and develop better measures of clinical symptoms.”
Samantha Holden, MD, associate professor of neurology and director of the Memory Disorders Clinic at UCHealth University of Colorado Hospital, said, “We can’t undo changes that have already occurred.” But can it be stopped if people are diagnosed early enough? Small but significant steps forward are being made in the realm of research. Schneider Williams responded with an “Oh, my God” when asked if she has ever considered giving up. Choose a date that works for you.
It’s “very overwhelming” to consider the “millions and bazillions” spent on research and wonder if “any progress at all” has been made, she said. Because of LBD’s complexity, however, “every yard gained matters.” Schneider Williams warned that “whoever has hope has many days of feeling the darkness.” With hope, however, you can always pick yourself up, dust yourself off, and keep moving forward. Furthermore, you need help from others to accomplish this.