Every Yard Gained Matters
Nearly eight years after the diagnosis that catalyzed Schneider Williams research journey, she is just now starting to really pick up the pieces of my own life, she said.
I kind of need to go underground for a while and relocate my inspiration and my true passion, which is art and painting, Schneider Williams said. She plans for a portion of all her future print sales to go to LBD research, and she will stay in touch with efforts related to the documentaries and the Lewy Body Dementia Fund, where she remains lead chair.
As Schneider Williams widens her focus while leaving her door open for LBD advocacy, experts continue their research efforts.
Were 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, said Dr. James Galvin, a professor of neurology and director of the Comprehensive Center for Brain Health at the University of Miami Miller School of Medicine.
Recent highlights include the introduction of at least two new diagnostics, Galvin said: a spinal fluid test from the company Amprion and a skin biopsy test from CND Life Sciences. The spinal fluid test tracks misfolded synuclein and helps doctors diagnose brain diseases, including LBD. The skin biopsy test aims to help doctors distinguish between serious neurologic disorders.
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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.”
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 Is The Treatment For Lewy Body Dementia
There is no magic pill to prevent or cure dementia, and each patient is unique in how well or how poorly they do. Doctor’s care extends beyond the patient to the patient’s family and caregivers. The patient has to have their medical needs met, but the family often needs help and counseling. Their emotions are very much a rollercoaster, as they adapt to their family member continually changing in front of their eyes. Grief reactions can begin even before the patient passes away, as the body becomes a shell of the person who once was.
Sometimes, though, there are glimmers of the person’s former personality, as some of the confusion and loss of memory resolves just for short periods of time and the curtain opens to reveal the person who once was. Those moments are gifts to families but sometimes they are just too brief.
There are some diseases that just aren’t fair. We don’t know why people develop dementia. The condition has no cure. While the diagnosis of a specific type of dementia can be made clinically, it can only be confirmed at autopsy, and there is no way to predict how long the patient and the family will suffer.
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Getting A Lewy Body Dementia Diagnosis
We recommend families seek advice from healthcare professionals such as their GP if they are concerned about a possible diagnosis. A referral should then be made to a specialist service such as dementia/memory service for cognitive or psychological symptoms. If motor symptoms are a significant concern, advice from a neurologist may be sought.
Due to the complex and distressing nature of symptoms, treatment requires close monitoring along with specialist advice and family support, such as that provided by Admiral Nurses. Admiral Nurses as dementia specialist nurses, can offer crucial support for families affected by Lewy body dementia.
Dementia UK works in partnership with the Lewy Body Society and has recently developed a dedicated Consultant Admiral Nurse post for Lewy body dementia. The Lewy Body Society, whose mission is to fund research into Lewy body dementia and to raise awareness of the disease, is funding the post and makes referrals to the Admiral Nurse Dementia Helpline.
The film clearly shows the love and admiration Robins family and friends had for him and the challenges they faced in coming to terms with the reality of Lewy body dementia. We hope that others with the same experiences will receive the support they need and deserve.
We still have a lot more work to do but we hope the film will help to highlight the need for increased investment in research and better services for all those affected.
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Robin Williams Would Have Been 70 This Year Here’s What We Know About Lewy Body Dementia Suicide And Parkinson’s
On July 21, actor and comedic genius Robin Williams would have turned 70. Williams not only amplified and brought awareness to the life-changing, prevalent disease known as Lewy Body Dementia, but his passing brought much needed attention to the importance of mental health and the non-movement symptoms of depression and anxiety that can accompany a neurodegenerative disease.
Nearly seven years after his passing, what do we know about Lewy Body Dementia? How can we help people with a neurological disease experiencing suicidal thoughts?
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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Robin Williams’ Death Report Finds Lewy Body Dementia
Williams was acting strangely before his death the coroner’s report revealed.
& #151 — Robin Williams had a common but difficult to diagnose condition known as Lewy Body Dementia and this may have contributed to his decision to commit suicide last August, according to documents included in his autopsy report.
The coroner in San Rafael, California, released its autopsy report as well as a pathology report from the University of California San Francisco documenting the comedian’s condition.
All people with LBD have dementia, and sometimes appear confused and disoriented and exhibit unusual behavior, said Angela Taylor, the director of programming for the Lewy Body Dementia Association. According to the coroners report, Williams had been acting strangely before his death. He is said to have kept several watches in a sock and was very concerned about keeping the watches safe.
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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What Is So Important About This Film
Robins widow, Susan Schneider-Williams, has been speaking for some time about Lewy body dementia, which is often referred to as the most common disease you have never heard of. It is to her credit and determination that this film has come to fruition.
The film highlights the importance of getting an accurate diagnosis which Robin and his family were not given. This is a sadly familiar experience for too many people in the UK, who also find it difficult to access the support and knowledge they need to manage and understand this difficult condition.
Families deserve responsive and knowledgeable support right from the start and we are pleased that this film has highlighted this need.
What Is The Difference Between Lewy Body Dementia And Parkinsons Disease Dementia
Lewy Body Dementia is a term used for both Parkinsons disease dementia and Lewy Body Dementia. They have some things in common, but their progression and treatment are different.
While many people with Parkinsons can experience cognitive changes, it is important to know that not everyone with Parkinsons will develop dementia. When we see more severe cognitive changes, particularly when they affect someones function or ability to act independently for activities of daily living, their work or hobbies, we think of that as being a form of dementia, said Dr. Goldman.
With Parkinsons dementia, the motor symptoms precede the dementia. In dementia with Lewy Body the initial core symptom is dementia cognitive changes are early, and motor features, if present, occur either after the onset of dementia or concurrently, said Dr. Goldman.
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Robin Williams Suffered From Lewy Body Dementia A Brain Disorder Thought To Affect 1 Million Americans
For the first time since Robin Williams’ death, his widow Susan Williams spoke out about her husband’s dementia in an exclusive interview with ABC News, a portion of which aired Tuesday on “Good Morning America.”
Williams had been diagnosed with early stages of Parkinson’s disease before he died by suicide August 2014. But an autopsy revealed he also suffered from Lewy body dementia , a brain disorder that affects more than a million Americans.
According to The Alzheimer’s Association, LBD is a type of progressive disease that causes a decline in thinking, reasoning and independence, linked to the buildup of microscopic deposits so-called Lewy bodies in the brain, which damage the cells over time. It’s the third most common type of progressive dementia after Alzheimer’s disease and vascular dementia.
LBD shares similarities with Parkinsons and Alzheimers, and scientists think all three disorders may have a common cause.
The symptoms of LBD include changes in thinking or reasoning, day-to-day confusion, hunched posture and rigid movements, hallucinations, and other problems.
“Lewy body dementia is what killed Robin,” Susan Williams told ABC News. “It’s what took his life and that’s what I spent the last year trying to get to the bottom of, what took my husband’s life.”
The week of Williams’ death, his doctors were planning to check him into a facility where he would undergo neurocognitive testing.
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.
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What Are The Symptoms
The warning signs can be mild at first, but worsen with time. They include:
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Problems with cognitive ability, attention, alertness, memory, judgment and concentration
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Behavior changes
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Slow movement, tremors, difficulty walking, or rigidity
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Sleep problems, including acting out dreams
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Problems with autonomic body functions, such as bladder and bowel function
Posted: Jul 4 20: 09 Pm
After Robin Williams died by suicide in August 2014, his widow, Susan Schneider Williams, would soon learn about a disease she had never heard of, but one that had haunted both of their lives.
That disease is Lewy body dementia, with which the actor was diagnosed in October 2014 following an autopsy on his brain. A few months before he passed, he was given a Parkinsons diagnosis, said Schneider Williams, an artist and advocate for LBD awareness and research, at the Life Itself conference, a health and wellness event presented in partnership with CNN. But that was just the tip of the iceberg.
The misdiagnosis occurred in May 2014 after Robin had been experiencing severe memory, movement, personality, reasoning, sleep and mood changes.
The comedian had undergone multiple tests to identify his problem, most of which were negative. None of the doctors knew that there was this ghost disease underlying all of this, Schneider Williams told CNN in an interview. When that was revealed, that was like essentially finding out the name of my husbands killer.
Lewy body dementia and Parkinsons disease dementia are the two types of Lewy body dementias, which are the second most common form of dementia after Alzheimers disease, according to the Lewy Body Dementia Association.
I couldnt live with myself if I didnt tell this story, Schneider Williams said. I had no idea the journey I was about to begin on. But I had to go there.
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What You Should Know About Robin Williams’ Lewy Body Dementia
Robin Williams’ widow said that an autopsy of the actor indicated that he took his own life in 2014 not because of depression, but because of a progressive brain disease called diffuse Lewy body dementia, or dementia with Lewy bodies, reports People magazine.
In an interview with People, Susan Williams reveals that in the year his death, Williams struggled with unexplained mental symptoms including anxiety and delusions. The disease also manifested itself physically, burdening him with muscle rigidity and impaired movement. But it wasnt until he died and his body was autopsied that doctors were able to pinpoint the cause of his symptoms.
Head over to People.com to read Susan Williams revealing interview.
Williams died Aug. 11, 2014 in his home in Tiburon, California, and his death was declared a suicide by authorities. The circumstances of his death and statements by his publicist led many to believe that the actor was experiencing debilitating depression and substance use disorder. He did indeed suffer from depression, his widow confirmed to People, but his post-mortem diagnosis suggests that dementia with Lewy bodies was the underlying biological cause for those chronic brain disease symptoms.
The disease is named for Lewy bodies, abnormal protein deposits in the brain. These abnormal deposits can affect a person’s thoughts, behavior and mood, as well as their ability to move. Its the third most common cause of dementia, and the symptoms get worse over time.