Robin Williamss Widow: There Were So Many Misunderstandings About What Had Happened To Him
Susan Schneider Williams watched her husband suffer with undiagnosed Lewy body dementia before he killed himself in 2014. A new film tries to educate others about the condition and put to rest assumptions about his death
After Robin Williams died in August 2014, aged 63, a lot of people had a lot of things to say about him. There was the predictable speculation about why a hugely beloved and seemingly healthy Hollywood star would end his own life, with some confidently stating that he was depressed or had succumbed to old addictions.
Others talked, with more evidence, about Williams as a comic genius a brilliant dramatic actor and both . One thing everyone agreed on was that he had an extraordinary mind. Comedians spoke about how no one thought faster on stage than Williams those who made movies with him said he never did the same take twice, always ad-libbing and getting funnier each time.
Williams knew this about himself. In Marina Zenovichs 2018 HBO documentary about Williams, Come Inside My Mind, we hear an old interview in which he is asked if he has any fears. Williams replies: I guess I fear my consciousness becoming, not just dull, but a rock. I couldnt spark. It wasnt until after he died that doctors were able to see that Williamss worst fears had come true: the autopsy suggested that he had suffered from severe Lewy body dementia , more commonly referred to in the UK as dementia with Lewy bodies.
Lewy Body Dementia And The Tragic Death Of A Comedy Legend
“One of the doctors said, ‘Robin was very aware that he was losing his mind and there was nothing he could do about it.’ This was a very unique case and I pray to God that it will shed some light on Lewy bodies for the millions of people and their loved ones who are suffering with it, we didn’t know. He didn’t know. – Susan Williams, in People magazine
We all knew Robin Williams. From Mork and Mindy to the Dead Poet’s Society and Mrs. Doubtfire, he was both a great dramatic and comedic actor who also invaded our lives with frenetic late night television interviews. He died in an unexpected and sad way. And only then did we find that he suffered from Lewy Body dementia . After many months, his widow Susan Williams broke her silence to explain how his disease affected both their lives.
Family and friends share the suffering experienced by a patient with dementia. It is difficult to watch as a loved one’s mental function slowly, and sometimes rapidly, fails. The person who played catch, attended school plays, and walked down the aisle is replaced by a stranger whose words and actions can be frightening and painful. The body may look the same, but the person inside has changed. And while the patient may not appreciate what changes the dementia has wrought, those who watch the disease progress are left to be long suffering.
Robin Williams And Lewy Body Dementia
Robin Williams brought joy to the lives of so many people through his comedy, acting, and charity work. There is no doubt he will forever be remembered for his comedic genius and heartwarming performances.
Tragically, Robin died by suicide in 2014 at age 63. The event shook the entertainment world and caused millions of fans to grieve for the loss of such a beloved actor and human being who brought so much humor to the world. What many people do not know is that depression was not the underlying cause of Robins suiciderather, it was a little-known brain disease called Lewy body dementia.
In the last year of his life, Robin experienced a startling pattern of behavior. His friends, family, and film colleagues could tell he was not himself as he began exhibiting symptoms like confusion, forgetfulness, paranoia, hallucinations, anxiety, personality changes, and difficulty with movement. Robin could tell something was wrong, too, but he did not know what was happening to him, why it was happening, or how to stop it.
Robin and his wife, Susan Schneider Williams, sought help from numerous medical specialists, but were unable to obtain a correct diagnosis before his untimely death. After his death, an autopsy revealed advanced stages of Lewy body dementia, a less common form of dementia that affects an estimated 1.4 million people in the US.
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‘i Lost My Best Friend’
Robin’s death at the age of 63 left film lovers and comedy fans mourning a brilliant talent.
Then-President Barack Obama paid tribute to the Oscar-winner saying: “He was one of a kind.
“He arrived in our lives as an alien but he ended up touching every element of the human spirit.
“He made us laugh. He made us cry. He gave his immeasurable talent freely and generously to those who needed it most from our troops stationed abroad to the marginalised on our own streets.”
Susan Schneider Provides Details Of Williams Final Years And Raises Lbd Awareness
Schneider recalled her husband experiencing what seemed like unrelated symptoms which included:
“constipation, urinary difficulty, heartburn, sleeplessness and insomnia, a poor sense of smell and lots of stress. He also had a slight tremor in his left hand that would come and go.”
In her editorial piece written for Neurology, she noted that his symptoms escalated to problems with paranoia and insomnia. She wrote:
I experienced my brilliant husband being lucid with clear reasoning 1 minute and then, 5 minutes later blank, lost in confusion.
According to Schneider, when she and Williams first attended a neurologists office,
Robin had a chance to ask some burning questions. He asked, Do I have Alzheimers? Dementia? Am I schizophrenic? The answers were the best we could have gotten: No, no, no. There were no indications of these other diseases. It is apparent to me now that he was most likely keeping the depth of his symptoms to himself.
Susan Schneider also wrote that the massive proliferation of Lewy bodies throughout Williams brain had done so much damage to neurons and neurotransmitters that you can say he had chemical warfare in his brain. She now serves on the Board of Directors of the American Brain Foundation and works to raise awareness about the neurological disorder that took her husbands life.
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Chemical Warfare In His Brain
Lewy body dementia has more than 40 symptoms that can randomly appear and disappear, Schneider Williams said. Categorically, the signs include impaired thinking, fluctuations in attention, problems with movement, visual hallucinations, sleep disorders, behavioral and mood issues, and changes in bodily functions such as the ability to control urinating.
What marked the beginning of a cascade of symptoms was when her husband started experiencing never-ending fear and anxiety, Schneider Williams said. It began to happen in 2012 when Williams started to pull back from engaging with people at the Throckmorton Theatre in California, where he would try new material out and riff with other comedians just for fun, she added.
The anxieties persisted beyond what Williams had experienced in the past and what is normal for a beloved actor living with the pressures of being on a world stage.
Eventually, paranoia was another significant symptom, Schneider Williams said. It was the amygdala region of his brain that had a ginormous amount of the Lewy bodies. So that area of the brain is really our ability to regulate our emotions, particularly fear and anxiety. And Robins was basically broken.
As a caregiver, you feel incredibly powerless when you realize, Oh my gosh, nothing I say or do anymore can bring him back to whats real. And thats a very scary place, she said. Lewy body it really takes over.
Robin Williams Had Lewy Body Dementia But Did Not Know It When He Died
Robin Williams was diagnosed with a form of dementia in his final months, but did not know it, according to a new biography.
Mr Williams autopsy report showed he had severe Lewy body dementia doctors who reviewed the report say it was one of the worst cases they had seen.
However, in the months before he died Mr Williams was diagnosed with Parkinsons disease.
Lewy body dementia is the second-most common form of dementia after Alzheimers disease. The illness causes protein deposits in the brain that affect thinking, memory, emotions, and body movements.
The disease is notoriously hard to diagnose because its symptoms are similar to those of Alzheimers disease, Parkinsons disease, and psychiatric illnesses.
One of the key differences between the diseases can be that Lewy body dementia progresses more quickly than the others.
In his book, Robin, author Dave Itzkoff says that in the months before he died, Mr Williams struggled to remember lines, had trouble controlling his emotions, developed a slight tremor in his hand, was anxious, had trouble sleeping, and lost his sense of smell.
His symptoms first began appearing in 2013 he died in 2014.
While all these symptoms can now be attributed to Lewy body dementia, at the time they were attributed to Parkinsons disease.
Would a correct diagnosis have helped: We will never have the answer
We will never know the answer to this, she wrote.
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Why Is It Difficult To Diagnose Lewy Body Dementia
Lewy body dementia’s similarities to Alzheimer’s and Parkinson’s pose a challenge for doctors.
Because early symptoms of DLB are similar to Alzheimer’s, and Parkinson’s disease dementia akin to Parkinson’s, individuals often get diagnosed with the more common disorder as opposed to LBD.
“It can take quite some time to get the correct diagnosis and it is not unusual, unfortunately, for it to take 1 to 3 years,” Loeb said.
Loeb points out that it is key for family members of patients to keep track of all symptoms, as even unexpected symptoms are often linked to LBD. In the case of Robin Williams, Schneider Williams pointed out that “a sudden ad prolonged spike in fear and anxiety can be an early indication of LBD.”
Robin Williams’ Autopsy Results Show Case Of Lewy Body Dementia Was Unusually Severe
Autopsy results show a 40 percent loss of dopamine neuron and the late comedians widow shares the heartbreaking symptom he likely hid from her.
In 2014, the world was shocked to learn of comedy genius Robin Williams death by suicide at age 63. Adding salt to the wound was the heartbreaking news of his diagnosis of Parkinsons disease and his suffering from Lewy Body Dementia , one of the rarest but most deadly brain conditions. Unbeknownst to fans, Williams began exhibiting symptoms in 2013. One year later, fans, friends, and family of the Good Will Hunting actor would be grieving such a devastating loss.
Williams was eventually diagnosed with Parkinsons disease in May 2014. However, upon consultation with a neurologist, Williams was informed that he had neither Alzheimer’s nor was he schizophrenic. In fact, he encountered nearly all of the 40-plus symptoms of LBD, except for one. In a piece the actor-comedians widow, Susan Schneider, wrote for Neurology, she states her husband never said he had hallucinations. Nevertheless, doctors later noted he might have been concealing symptoms from those close to him, suffering in silence. After Williams death, Schneider consulted four doctors who all agreed the case was the worse pathologies they had seen.
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Sorting Through The Symptoms
Some patients exhibit movement disorders that doctors first diagnose as Parkinsons disease. If those patients later develop dementia, they would then be diagnosed with Parkinsons disease dementia.
Others may begin with cognitive or memory disorders mistaken for Alzheimers disease. More specific changes in their cognitive function over time can lead to the diagnosis dementia with Lewy bodies.
Rarely will some individuals first show neuropsychiatric symptoms, which can include hallucinations, behavioral problems and difficulty with mental activities. When those appear simultaneously, that can prompt an initial diagnosis of LBD.
To specifically and accurately diagnose a person with LBD, doctors have to ask the right questions about his symptoms, Vox said.
Delusions for Alzheimers patients might occur late in the disease and be ill-formed, appearing as paranoia or mistrust such as thinking a spouse is cheating. For LBD patients, delusions happen earlier and are well-formed misidentifications, such as looking at a loved one and thinking she has been replaced by an identical impostor.
The more detailed the assessment, Galvin said, the easier it is to separate out the conditions.
The Link To Parkinsons Disease
Most people with Parkinsons disease have Lewy bodies in their brains. Its these clusters that cause some or all of the motor symptoms of Parkinsons disease, as well as memory or cognitive problems, visual hallucinations, and problems with alertness.
We rarely know if a living patient has Lewy bodies with certainty, however. Its not until an autopsy that they can be seen, says Liana Rosenthal, M.D., assistant professor of neurology at the Johns Hopkins University School of Medicine. If we see Lewy bodies in someones brain during an autopsy, thats considered a pathologic certainty of Parkinsons disease, she says.
As with Parkinsons, Lewy body dementia is associated with a depletion of certain neurotransmitters in the brain. These are:
- Dopamine: This neurotransmitter helps transmit signals that control muscle movement. When the accumulation of Lewy bodies blocks dopamines production and transmission, the result is the hallmark movement issues of Parkinsons disease.
- Acetylcholine: This neurotransmitter does its work in the parts of the brain responsible for memory, thinking and processing. When Lewy bodies build up in these areas, they interfere with acetylcholine, causing symptoms of dementia.
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How Is Lbd Diagnosed
The disease affects some 1.4 million people in the U.S., the Lewy Body Dementia Association estimated, but diagnosing it can be challenging.
Only an autopsy can provide a conclusive diagnosis, but doctors can recognize the symptoms with the help of physical and neurological examinations, mental status tests and brain imaging.
Newfound Challenges For Patients And Families
Lewy body dementia can be a harrowing experience for both patients and their families.
Getting a diagnosis can be a matter of months- to yearslong doctor shopping, Galvin said.
Executive dysfunction can lead to behaviors that family members initially perceive as bad judgments. Delusions can make them frustrated and fearful.
As a caregiver, I think one of the challenges is recognizing that we cannot use the same skills and interpersonal dynamics that we came to rely on in our relationship with the person with LBD, Taylor said.
We have to develop new ones because you cannot reason with somebody who is having a hallucination or delusion. Sometimes you have to more step into their reality and empathize learn a new way to offer assistance without them feeling like theyre being treated like a child.
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What Causes Lewy Body Dementia
Lewy bodies, named after Dr. Friedrich Lewy who first discovered them in 1912, are deposits of abnormal proteins inside brain cells, according to the Lewy Body Society.
They affect chemicals in the brain, which can lead to problems with thinking, movement, behavior, and mood, the National Institute on Aging noted.
Its not well understood why these changes happen, but age is considered the greatest risk factor, with most people diagnosed over 50.
An LBD patient can either have Parkinsons disease dementia or dementia with Lewy bodies the two are closely related.
What Is Lewy Body Dementia
Lewy Body Dementia , also known as Dementia with Lewy Bodies, is a progressive brain disorder that is diagnosed when cognitive decline is an early symptom. It can also be diagnosed when cognitive decline and motor symptoms begin and develop together.
Lewy Body Dementia is a common type of dementia it is the second most common neurodegenerative dementia behind Alzheimers, said Jennifer G. Goldman, MD, MS, section chief of Parkinsons Disease and Movement Disorders at Shirley Ryan AbilityLab and a Professor in Physical Medicine and Rehabilitation and Neurology at Northwestern University Feinberg School of Medicine, a Parkinsons Foundation Center of Excellence. It is thought to affect 1.4 million people in the U.S. but is not widely recognized. With greater education and awareness, with Lewy Body Dementia including both Dementia with Lewy Body and Parkinsons disease dementia, we can start to change that landscape.
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What Disease Does Jackson From Hannah Montana Have
Parkinson’s disease is the name given to this condition. The actor amassed his riches mostly via his profession as a comedian and actor while working for one of Hollywood’s most lucrative corporations, Disney. He died at age 50 due to complications from Parkinson’s disease.
Jackson was born on January 15, 1958 in Los Angeles, California. He was the only child of Joe Jackson, a professional musician, and Josephine Mailer, a homemaker. His father played piano for Ella Fitzgerald at the age of 12 and formed his own group after serving in the Army during the Korean War. When he was 18, Joe Jackson released his first album which became a success.
The family moved to Chicago when Jackson was 11 years old. It there that he began taking dance lessons and later enrolled in acting classes. In 1975, at the age of 20, he had his first role on television in a series called “Welcome Back, Kotter”. A year later, he got his big break when he was chosen by Walt Disney to play Prince Eric in the film version of “The Little Mermaid”. The movie was a huge success and made Jackson a household name.
In 1990, Jackson married Lisa Marie Presley, daughter of Elvis Presley. They had three children together: Jesse James, Saint Rose, and Sycamore.