Lewy body dementia: The life-changing disease that Interrupts Robin Williams
Alzheimer’s disease and dementia are two ailments that lots of Americans are familiar with, but there’s another dementia which plagued the late comedian Robin Williams.
Williams had Lewy body dementia, which his family learned only after his death. It’s often misdiagnosed as Alzheimer’s or Parkinson’s disease as a result of the premature resemblance to those other bronchial ailments.
Tyler Norwood’s documentary chronicles Robin Williams’ struggle with the neurological disease that will eventually lead him to commit suicide.
When Robin Williams took his own life in 2014, the story quickly became of the tortured comedian. He had been tortured–but not the way people believed.
‘Robin’s Wish’ erases the sad clown trope about Robin Williams’s death
After reports first started to surface in 2014 that Robin Williams took his own life, the narrative quickly become that of the sad clown: a brilliant comic tortured to a tragic end with his own demons.
Williams’ death triggered a contentious legal struggle over his estate. According to Rolling Stone, Williams had abandoned his estatevalued at an estimated $100 million, to his three kids but needed a”specific provisions” to ensure Schneider and her sons were cared for too.
But never sat well with the men and women who understood Williams best.
After his death, doctors discovered the actual problem: diffuse Lewy body dementia,”a spectrum of disorders that impair cognition, behavior, sleep, and movement.” In fact, one doctor asserted Williams’s case was among the worst he’d seen.
The news galvanized Williams’s widow Susan Schneider Williams into spreading awareness of LBD hopefully to spare others of inaccurate diagnoses.
Susan reached out to documentary filmmaker Tylor Norwood through a mutual friend with the Notion of making a doc about LBD.
“She doesn’t tell me anything about Robin. She goes,’Hey, I wish to make this movie about Lewy body dementia. Are you interested?’ And I was like, ‘No, not at all!’ I had no interest in producing a hardcore science doc,” Norwood says. “But I’ve got Robin Williams’s widow on the telephone –let’s try and dig a bit deeper here.”
Following Susan shared her personal account of the way the disease gradually shattered Williams in his private and professional lives, Norwood knew that was the narrative where he could house educating people on LBD.
Robin Williams (left) and Susan Schneider Williams (right).
“Initially, she was going to stand back. “However, I said, if you’ll go there, if you will step up and say these things, I’m in.”
Robin’s Wish is as much of a party of Williams’s life and career since it is a course correction on his own legacy. While Susan hit on the interview circuit after Williams’s post-mortem investigation describing LBD, Robin’s Wish is a much deeper dive to a disease that is quite common but underdiagnosed. As stated by the National Institute on Aging, LBD affects more than one million people but since the symptoms can resemble Alzheimer’s or Parkinson’s, it often flies under most doctor’s radars.
“There are the Chris Farleys along with also the John Belushis of this world that are cautionary tales of we all wish they would have gotten help sooner. But with Robin, there was not any way that was going to take place,” Norwood says. “A lot of those comedians I talked to, which was a massive thing for them: If we could take somebody out of the category of being the miserable clown, even if we can do that for one of those all-time greats, let’s do it”
In what’s understandably the most emotional part of the doc, friends and family recount Williams’s final hours, which to Norwood illuminates the kind of person Williams was.
“I had been very interested in this idea of the minutes in our life that are the hardest define who we actually are. There’s no way to make an argument that this wasn’t Robin Williams’s greatest challenge, facing an incurable brain brain disease that was chipping away in a super energy,” Norwood says. “So the concept of getting to watch these minutes, like his final bike ride with one of his closest friends. The thought that at the night he left this earth, he went and asked for a hug from [his friend] across the road –a lot of these details Susan didn’t even have. So there was this sense of putting with this record of a man hoping to just make peace with each one of these things.”
Robin Williams (centre ) from the documentary Robin’s Wish.
“He got sour,” Norwood continues. “He got mad. Robin Williams was not the man who was going to go burn down the neighborhood the last night that he was living because he felt like things were unfair. He also went and asked for a hug from among his close buddies. And he realized that there just was not much left on the earth for him. He had been about a couple of weeks from entering an inpatient program that he probably never would have come from. And that’s just not how the man needed to live.”
But perhaps the most telling insight into Willams arrived when Susan opened his bedside table to the first time since his passing. Inside was his alcoholic’s anonymous book and on the first blank page he wrote,”I want to help people be less afraid.”
“This was something that was transformative for me because then you’re taking a look at everything he ever did,” Norwood says. “He wrote that in 2012 as a little silent prayer in the night to himself. He never planned for anyone to read that. He had been looking forward, like,’What do I need to do with the rest of my life?’ However, for me personally, as a storyteller, that’s what he had been doing in the beginning. He was giving us all these minutes of being fearless.”
Sorting throughout the symptoms
Some patients exhibit movement disorders that physicians first diagnose as Parkinson’s disease. If these patients later develop dementia, they’d subsequently be diagnosed with Parkinson’s disease illness.
Others may begin with cognitive or memory ailments mistaken for Alzheimer’s disease. More particular changes in their cognitive function over time may lead to the identification”dementia with Lewy bodies.”
Rarely will a few individuals first display neuropsychiatric symptoms, which can include hallucinations, behavioral problems and difficulty with mental pursuits. When those look concurrently, that can prompt an initial diagnosis of LBD.
To specifically and accurately diagnose a individual with LBD, doctors have to ask the right questions regarding his signs, Vox explained.
Delusions for Alzheimer’s patients may happen late in the disease and be ill-formed, emerging as paranoia or mistrust — for example thinking a partner is cheating. For LBD patients, delusions happen sooner and therefore are well-formed misidentifications, such as looking at a loved one and thinking she has been substituted by an identical impostor.
Because Lewy body proteins can’t be tested like Alzheimer’s proteins can, cases of LBD are often diagnosed during hospitalization for some thing else, Vox explained. Or diagnosis sometimes happens postmortem, when the family asks an autopsy for closure, to gain more context for any doubts or to donate the mind for research, Taylor said.
Transforming mental, cognitive and physical wellbeing
The indicators might first hinder a individual’s ability to work, Taylor said. They then can disrupt their ability to drive; manage their affairs and wellbeing; be socially active; dress themselves; and shower. A person may also become incapable to control involuntary behaviors, Galvin said, leading to nausea, nausea, low blood pressure or the inability to control urine or bowel movements.
A individual’s inability to visually perceive the spatial relationships of objects can result in car accidents or injuries. Individuals with LBD can experience anxiety, depression and REM sleep disease — in which people lose the muscular paralysis that normally occurs during deep stages of sleep and physically (and sometimes violently) act out their dreams. After a individual is finally diagnosed, the life expectancy is roughly four to five years, Vox said.
“They are losing the essence of who they are gradually over time,” Taylor said. “That’s a journey that’s a very hard one.”
Research to improve diagnoses and treatments is underway, however, there are currently no treatments for Lewy body dementia especially. Most patients are treated with medications for Alzheimer’s disease or Parkinson’s disease, since the symptoms of LBD are alike. However, treating the various indicators of LBD with medications not fine-tuned for your condition can be quite a”real art” and quickly fill up a patient’s medicine cabinet, Vox explained.
“You have to consider costs-benefits of fixing this versus that, or get double effects of the medicine and a little bit of that as well,” he said.
Newfound challenges for patients and families
Getting a diagnosis can be a matter of months- to yearslong”doctor shopping,” Galvin said.
Executive dysfunction can lead to behaviours that household members initially perceive as bad judgments. Delusions will make them frustrated and fearful.
“As a health professional, I believe one of those challenges is recognizing we cannot use exactly the same skills and social dynamics that we came to rely on in our relationship with the person with LBD,” Taylor stated.
“We’ve got to develop new ones since you can’t reason with someone who is using a hallucination or delusion. Sometimes you’ve got to step into their reality and empathize (and) learn a new way to provide assistance without them feeling like they’re being treated like a child.”
Residing with Lewy body disease
It is possible that the same healthier diet, exercise and sleep routines that were found to mitigate symptoms of Alzheimer’s and Parkinson’s diseases might also help people with LBD.
“So exercise is very important in Lewy body dementia, too,” Taylor explained,”because it’s biologically related to Parkinson’s disease and stocks a great deal of the same symptoms.”
For individuals and families in need of assistance and guidance, the Lewy Body Dementia Association is equipped with such resources.
“Nobody needs to face LBD alone,” Taylor sasid. “Not the individual with LBD and not the family caregiver. This disease does not create anything really easy in life. And they shouldn’t have to go through it without a guide and a support.”