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Robin Williams Widow Wants You to Know About the Future of Lewy Body Dementias

(CNN)After Robin Williams committed suicide in August 2014, his widow Susan Schneider Williams soon experienced her. I got to know about illnesses I had never done before. I heard that it bothered both of their lives.

The disease is Lewy body dementias, and theactor was diagnosed within October 2014 after a brain autopsy. "A few months before he died, he was diagnosed with Parkinson's disease," advocated artist awareness and research at theLife Itselfconference, a health and wellness event. Schneider Williams said. Announced in partnership with CNN. "But that was just the tip of the iceberg."

A misdiagnosis occurred in May 2014 after Robin experienced severe memory, movement, personality, reasoning, sleep, and mood changes. It has occurred.

The comedian underwent multiple tests to identify his problem, most of which were negative. "No doctor knew there was this underlying ghost disease," Schneider Williams told CNN in an interview. "When it became clear, it was essentially like finding the name of my husband's murderer."

Dementia is a memory dysfunction, personality change, brain. It is a disorder of the mental process characterized by a disorder of reasoning due to illness or injury. The exact cause of LBD affecting about1.4 million Americansis unknown. However, the disease is associated with the accumulation of the protein α-synuclein. It is usually present in the brain and in small amounts in the heart, muscles, and other tissues. Alpha-synuclein may help regulate neurotransmitters. However, when this protein accumulates and forms lumps (called Lewy bodies) in the brain, its effects are devastating.
Lewy body dementias and Parkinson's disease Dementia is two types of Lewy body dementias, andis the second most common after Alzheimer's disease according to the Lewy Body Dementias Association. Dementia

LBD initially develops like Alzheimer's disease and Parkinson's disease and is often misdiagnosed. Also, because Lewy body dementias cannot be tested like the protein in Alzheimer's disease, cases of LBD occur after death , when family members request autopsy or detailed autopsy, orof loved ones. Often diagnosed when donating the brain. For research.

Usually, for undiagnosed LBD patients who initially show exercise problems, Parkinson's disease is a movement disorder, so doctors first diagnose Parkinson's disease. If those patients also develop dementia later, they are often diagnosed with Parkinson's disease dementia. More specific changes in cognitive function can also be diagnosed with "Lewy body dementias" over time. Lewy bodies are common in Parkinson's disease, butnot allParkinson's patients develop LBD.

For Schneider Williams, ultimately learn the truth behind her husband's "pain and suffering", as symptoms that overlap with misdiagnosis can lead to a world of confusion for patients and their families. That was "light pin stab".

"It was when my own healing began," she said. "We had this experience with something really invisible and horrifying, and on the other side, I'm left to find the science underneath that helped explain this experience. Robin It wasn't crazy. It was one of his greatest fears. "

Schneider Williams" discovered "for eight years so that other patients and caregivers could experience the same truth, understanding, and healing. We have continued to defend the "Rabbit Hole". She served on the board of the American Brain Foundation for six years, helping to establish the Lewy Body Dementias Foundation and its $ 3 million research grant award aimed at finding accurate biomarkers, and documentary "Robins. Wish”was contributed. "Spark: The Battle of Robin Williams and Lewy Body Dementias"

"Without this story, I wouldn't have been able to live with myself," Schneider Williams said. "I didn't know the journey I was about to start, but I had to go there."

Doctors and researchers who want to mitigate the experience that my husband has endured. "The order is high," he said, "but progress is being seen."

'Chemical warfare of his brain'

Lewy body dementia has more than 40 symptoms that can appear and disappear randomly. There is, Schneider Williams said. Categorically, signs include thought disorders, attention fluctuations, motor problems, visual hallucinations, sleep disorders, behavioral and mood problems, and changes in physical function such as the ability to control urination. ..

"Indicated the beginning of a series of symptoms" was when her husband began to experience endless fear and anxiety, Schneider Williams said. It started happening in 2012 when Williams began to stop interacting with people at the Srock Morton Theater in California. So he tried new materials and riffed with other comedians for fun.

Anxiety continued beyond what Williams had experienced in the past and for his beloved actor, who lives under the pressure of being on the world stage.

After all, paranoia was another important symptom, Schneider Williams said. "It was in the amygdala region of his brain that there was a huge amount of Lewy bodies, so that region is really the ability to regulate our emotions, especially fear and anxiety, and Robin is basically It was broken. "

Towards the end, Williams also experienced a delusional loop. "Your brain is telling the story of what you think is real," Schneider Williams said. "And the people around you cannot rationalize with you and bring you back to real reality. Therefore, not only for those who are deceived, but for everyone around those who are deceived. It's incredibly scary.

As a caregiver, I realized, "Oh my god, I can't get him back to life without saying anything and doing nothing anymore." When you do, you feel incredibly helpless. And it's a very scary place, "she said. "Our house was like a'museum night'at night," Schneider Williams said of the couple's house for insomnia, which removed the gap between day and night. Imaginary fire of horror-that's it.

Hallucinations are "an important feature of LBD that really helps identify illness," Schneider Williams said, but she doesn't want to talk about it, which is also a severe symptom of many LBD patients. I didn't know about his hallucinations until I talked to a medical expert who checked his medical records. Delusions include stories with people who can break it down for you, but hallucinations are nothing more than something, so it's easy to hide r.

"Lewy bodies are neurological and circuit problems. Therefore, the chemical and structural changes taking place in Robin's brain were the cause of the psychological symptoms he experienced." Schneider Williams said in Life Itself. They included depression.

A doctor I met after Schneider Williams learned of his diagnosis said, "He showed that he was one of the worst medical conditions they saw. He had a loss of about 40% of dopamine neurons, "she wrote. Her 2016 article "Terrorists in my husband's brain" Journal Neurology. "The massive proliferation of Lewy bodies throughout his brain caused so much damage to neurons and neurotransmitters that, in effect, he could be said to have had a chemical war in his brain. "

Antipsychotics are dangerous to him and, like some LBD patients, exacerbated some symptoms, Schneider Williams said.

If people experiencing neurodegenerative disease can still do some routines such as work or walking a dog, their "normal, worn-out route provides comfort". You can, "said Schneider Williams. When people are unable to do those things, their symptoms worsen and can lead to catastrophic isolation.

'There was a problem in every garden'

About eight years after the diagnosis that catalyzed Schneider Williams' research journey, she said, "Just now. I'm really starting to pick up fragments of my own life, "she said.

"We need to go underground for a while to transfer inspiration and true passion for art and painting," Schneider Williams said. She plans to devote a portion of all future print sales to LBD research and will continue to be in charge of documentary and contact with efforts related to the Lewy Body Dementias Fund.

Experts continue their research efforts as Schneider Williams keeps her door open to defend LBD and broadens her focus.

"We are constantly learning more and more about this disease, from basic science research into cells and test tubes to animal models to observational studies of humans," said Professor James Galvin. I am. Director of the Comprehensive Center for Brain Health in Neurology and the University of Miami Miller School of Medicine.

Recent highlights include the introduction of at least two new diagnostics, Galvin said. He is Amprion'sspinal fluid testand CND Life Sciences'skin biopsy. Cerebrospinal fluid tests track misfolded synucleins and help doctors diagnose brain disorders, including LBD. Skin biopsies are intended to help doctors distinguish between serious neuropathy.

"Getting a life-long diagnosis that someone has Lewy body dementias is a great help in both confirming the diagnosis and advancing research," Galvin said. “The sooner treatment can be started, the easier it will be to enroll people in clinical trials to test new drugs.”

The National Institutes of Health has stated that the new drug CT1812 is for patients with LBD. We have awarded Galvin and Cognition Therapeutics a $ 29 million grant to study whether they are safe and effective.

To treat LBD, doctors said, "From Alzheimer's disease to treat cognitive symptoms, from Parkinson's disease to treat motor symptoms, from paralysis to treat attention defects, behavioral symptoms. Borrow medicine from psychiatry to treat illness, "Galvin said in. News ReleaseCT1812 may help the brains of LBD patients remove toxic proteins and protect them from loss of function.
"When I wrote the edit'a terrorist in her husband's brain,'I was convinced that the diagnosis was not important anyway because there was no cure." Schneider Williams said. Life itself. "But since then, my thinking has changed completely. Diagnosis is everything not only for patients and caregivers, but also for doctors, clinicians and researchers. With an accurate diagnosis, professional care

The Lewy Body Dementia Association was able to collaborate in clinical trials, assess resource and infrastructure needs, and develop better measures of clinical symptoms. , Established the Research Centers of Excellence Program with 22 sites across the United States. Angela Taylor, Interim Executive Director of the Association.

"Changes that have already occurred are irreversible," said Samantha Holden, an associate professor of neurology at the University of Colorado and director of the Memory Impairment Clinic at the UC Health University of Colorado Hospital. "But if we catch people fast enough, can we prevent it from progressing?"

Research progress is being made at the baby stage. When asked if she had ever wanted to give up, Schneider Williams said, "Oh, what a hell. Choose a day."

"It's overwhelming to see all the millions and hundreds of millions of dollars spent on research and think," What the hell are we really making progress? " "She added, but depending on how complex the LBD is," every yard has a problem. "

"Everyone who has hope has days of darkness," Schneider Williams said. "But the hope is that no matter what, you dust yourself, you pick yourself up, and you move forward. And you don't do it alone. "