Robin Williams' widow opens up about the future of Lewy body dementia

1 month ago 26
PR Distribution

After Robin Williams died by termination successful August 2014, his widow, Susan Schneider Williams, would soon larn astir a illness she had ne'er heard of, but 1 that had haunted some of their lives.That illness is Lewy assemblage dementia, with which the histrion was diagnosed successful October 2014 pursuing an autopsy connected his brain."A fewer months earlier helium passed, helium was fixed a Parkinson's (disease) diagnosis," said Schneider Williams, an creator and advocator for LBD consciousness and research, astatine the Life Itself conference, a wellness and wellness lawsuit presented successful concern with CNN. "But that was conscionable the extremity of the iceberg."The misdiagnosis occurred successful May 2014 aft Robin had been experiencing terrible memory, movement, personality, reasoning, slumber and temper changes.The comedian had undergone aggregate tests to place his problem, astir of which were negative. "None of the doctors knew that determination was this shade illness underlying each of this," Schneider Williams told CNN successful an interview. "When that was revealed, that was similar fundamentally uncovering retired the sanction of my husband's killer."Dementia is simply a upset of intelligence processes marked by representation dysfunction, property changes and impaired reasoning owed to encephalon illness oregon injury. The nonstop origin of LBD, which affects astir 1.4 cardinal Americans, is unknown. But the illness is associated with the accumulation of the macromolecule alpha-synuclein, which is typically contiguous successful the encephalon and successful tiny amounts successful the heart, musculus and different tissues. Alpha-synuclein mightiness assistance modulate neurotransmitters. But erstwhile this macromolecule accumulates and forms masses (called Lewy bodies) wrong the brain, the effects are devastating.Lewy assemblage dementia and Parkinson's illness dementia are the 2 types of Lewy assemblage dementias, which are the 2nd astir communal signifier of dementia aft Alzheimer's disease, according to the Lewy Body Dementia Association.Because LBD initially presents likewise to Alzheimer's oregon Parkinson's disease, it's often misdiagnosed. And since Lewy assemblage proteins can't beryllium tested similar Alzheimer's proteins, LBD cases are often diagnosed aft decease erstwhile families petition autopsies for closure oregon much details, oregon to donate a loved one's encephalon for research.Typically for undiagnosed LBD patients who initially grounds question issues, doctors archetypal diagnose them with Parkinson's illness since it is simply a question disease. If those patients aboriginal make dementia arsenic well, they are often diagnosed with Parkinson's illness dementia. More circumstantial changes successful cognitive function, too, implicit clip tin pb to the diagnosis of "dementia with Lewy bodies." Although Lewy bodies are communal with Parkinson's disease, not each Parkinson's patients volition make LBD.Misdiagnosis and overlapping symptoms tin pb to a satellite of disorder for patients and their families, truthful for Schneider Williams, yet learning the information down her husband's "pain and suffering" was a "pinprick of light," she said."That's erstwhile my ain healing started to begin," she said. "We had this acquisition with thing that was invisible and terrifying, truly. And past connected the different broadside of it, I'm near to find retired the subject underneath it that helped explicate this experience. Robin wasn't crazy. That was 1 of his biggest fears."So that different patients and caregivers tin acquisition the aforesaid truth, knowing and healing, Schneider Williams has been successful a "rabbit spread of discovery" and advocacy for 8 years now. She has served connected the committee of the American Brain Foundation for six years, helped found the Lewy Body Dementia Fund and its $3 cardinal probe assistance grant aimed astatine uncovering an close biomarker, and contributed to the documentaries "Robin's Wish" and "Spark: Robin Williams and His Battle with Lewy Body Dementia.""I couldn't unrecorded with myself if I didn't archer this story," Schneider Williams said. "I had nary thought the travel I was astir to statesman on. But I had to spell there."Doctors and researchers wanting to mitigate the kinds of experiences her hubby endured "have a gangly order," she said, "but advancement is being made."'Chemical warfare successful his brain'Lewy assemblage dementia has much than 40 symptoms that tin randomly look and disappear, Schneider Williams said. Categorically, the signs see impaired thinking, fluctuations successful attention, problems with movement, ocular hallucinations, slumber disorders, behavioral and temper issues, and changes successful bodily functions specified arsenic the quality to power urinating.What "marked the opening of a cascade of symptoms" was erstwhile her hubby started experiencing never-ending fearfulness and anxiety, Schneider Williams said. It began to hap successful 2012 erstwhile Williams started to propulsion backmost from engaging with radical astatine the Throckmorton Theatre successful California, wherever helium would effort caller worldly retired and riff with different comedians conscionable for fun, she added.The anxieties persisted beyond what Williams had experienced successful the past and what is mean for a beloved histrion surviving with the pressures of being connected a satellite stage.Eventually, paranoia was different important symptom, Schneider Williams said. "It was the amygdala portion of his encephalon that had a ginormous magnitude of the Lewy bodies. So that country of the encephalon is truly our quality to modulate our emotions, peculiarly fearfulness and anxiety. And Robin's was fundamentally broken."Toward the end, Williams besides experienced delusional looping. "Your encephalon is concocting a communicative of what you deliberation world is," Schneider Williams said. "And the radical astir you are incapable to rationalize with you and bring you backmost into what is really real. So it's incredibly scary for everyone astir idiosyncratic who's deluded arsenic good arsenic the deluded person."As a caregiver, you consciousness incredibly powerless erstwhile you realize, 'Oh my gosh, thing I accidental oregon bash anymore tin bring him backmost to what's real.' And that's a precise scary place," she said. "Lewy assemblage — it truly takes over."Williams was stressed by work, his abrupt forgetfulness and changing personality, and insufficient slumber — which progressed to terrible insomnia that removed the separation betwixt time and nighttime successful the couple's home. "Our location was similar 'Night astatine the Museum' astatine night," Schneider Williams said. Pulling him backmost from nighttime delusions would instrumentality hours, sometimes days, she added. "Imagined fearfulness connected occurrence — that is what it is."Hallucinations are "a cardinal hallmark of LBD that tin truly assistance successful identifying the disease," Schneider Williams said, but besides a pugnacious grounds galore LBD patients don't privation to discuss. She didn't cognize astir her husband's hallucinations until her speech with a aesculapian nonrecreational who had reviewed his aesculapian records. A delusion involves a storyline with radical who tin deconstruct it for you — but a hallucination is thing lone you spot and truthful is easier to hide."Lewy assemblage is neurological; it's a circuitry problem. So the chemic and structural changes happening successful Robin's encephalon were liable for the psychiatric symptoms that helium was experiencing," Schneider Williams said astatine Life Itself. Those included depression. The doctors Schneider Williams met with aft learning of his diagnosis "indicated his was 1 of the worst pathologies they had seen. He had astir 40% nonaccomplishment of dopamine neurons," she wrote successful her 2016 nonfiction "The violent wrong my husband's brain" for the diary Neurology. "The monolithic proliferation of Lewy bodies passim his encephalon had done truthful overmuch harm to neurons and neurotransmitters that successful effect, you could accidental helium had chemic warfare successful his brain."Antipsychotic medications were unsafe for him and made immoderate symptoms worse, arsenic they bash for immoderate LBD patients, Schneider Williams said.If radical experiencing neurodegeneration tin inactive bash immoderate routines specified arsenic enactment oregon locomotion their dog, those "usual, well-worn pathways tin supply comfort," Schneider Williams said. When radical tin nary longer bash those things, symptoms tin worsen and pb to devastating feelings of isolation.'Every gait gained matters'Nearly 8 years aft the diagnosis that catalyzed Schneider Williams' probe journey, she is "just present starting to truly prime up the pieces of my ain life," she said."I benignant of request to spell underground for a portion and relocate my inspiration and my existent passion, which is creation and painting," Schneider Williams said. She plans for a information of each her aboriginal people income to spell to LBD research, and she volition enactment successful interaction with efforts related to the documentaries and the Lewy Body Dementia Fund, wherever she remains pb chair.As Schneider Williams widens her absorption portion leaving her doorway unfastened for LBD advocacy, experts proceed their probe efforts."We're ever learning much and much astir the disease, from the basal subject studies looking astatine cells and trial tubes, to carnal models, to quality observational studies," said Dr. James Galvin, a prof of neurology and manager of the Comprehensive Center for Brain Health astatine the University of Miami Miller School of Medicine.Recent highlights see the instauration of astatine slightest 2 caller diagnostics, Galvin said: a spinal fluid trial from the institution Amprion and a tegument biopsy trial from CND Life Sciences. The spinal fluid trial tracks misfolded synuclein and helps doctors diagnose encephalon diseases, including LBD. The tegument biopsy trial aims to assistance doctors separate betwixt superior neurologic disorders."To person diagnostics — that tin corroborate successful beingness that idiosyncratic has Lewy assemblage illness — goes a agelong mode some toward confirming the diagnosis and advancing research," Galvin said. "The earlier you tin commencement radical connected treatments, the easier to enroll radical successful objective trials to trial caller medications."The National Institutes of Health has awarded Galvin and the institution Cognition Therapeutics a $29 cardinal assistance for studying whether a caller drug, CT1812, is harmless and effectual for patients with LBD.To dainty LBD, doctors "borrow medicines from Alzheimer's to dainty cognitive symptoms, from Parkinson's to dainty centrifugal symptoms, from narcolepsy to dainty attraction deficits and from psychiatry to dainty behavioral symptoms," Galvin said successful a quality release. CT1812 could assistance the brains of LBD patients wide toxic proteins and support against functional loss."When I wrote that editorial 'The violent wrong my husband's brain,' I was convinced that a diagnosis wouldn't substance anyway, due to the fact that determination is nary cure," Schneider Williams said astatine Life Itself. "But my reasoning since past has wholly changed. Diagnosis is everything -- not conscionable for the patients and caregivers, but for the doctors, clinicians and researchers. If we had an close diagnosis, we could person sought specialized care."The Lewy Body Dementia Association has formed a Research Centers of Excellence Program, with 22 sites crossed the United States, to collaborate connected objective trials, measure needs for resources and infrastructure, and make amended measures of objective symptoms, said Angela Taylor, the association's interim enforcement director."We can't undo changes that person already occurred," said Samantha Holden, an subordinate prof of neurology astatine the University of Colorado and manager of the Memory Disorders Clinic astatine UCHealth University of Colorado Hospital. "But if we drawback radical aboriginal enough, tin we forestall it from progressing?"Research advancement is being made successful babe steps. When asked whether determination has ever been a constituent erstwhile she felt similar giving up, Schneider Williams said, "Oh, my God. Pick a day.""It's precise overwhelming erstwhile you look astatine each the millions and bazillions of dollars that are spent connected probe and you think, 'Oh my God, person we truly progressed astatine all?' " she added. But with however analyzable LBD is, "every gait gained matters.""Whoever has anticipation has galore days of feeling the darkness," Schneider Williams said. "But the happening astir anticipation is that nary substance what, you particulate yourself off, you prime yourself up and you spell forward. And you don't bash that alone."

After Robin Williams died by termination successful August 2014, his widow, Susan Schneider Williams, would soon larn astir a illness she had ne'er heard of, but 1 that had haunted some of their lives.

That illness is Lewy assemblage dementia, with which the histrion was diagnosed successful October 2014 pursuing an autopsy connected his brain.

"A fewer months earlier helium passed, helium was fixed a Parkinson's (disease) diagnosis," said Schneider Williams, an creator and advocator for LBD consciousness and research, astatine the Life Itself conference, a wellness and wellness lawsuit presented successful concern with CNN. "But that was conscionable the extremity of the iceberg."

The misdiagnosis occurred successful May 2014 aft Robin had been experiencing terrible memory, movement, personality, reasoning, slumber and temper changes.

The comedian had undergone aggregate tests to place his problem, astir of which were negative. "None of the doctors knew that determination was this shade illness underlying each of this," Schneider Williams told CNN successful an interview. "When that was revealed, that was similar fundamentally uncovering retired the sanction of my husband's killer."

Dementia is simply a upset of intelligence processes marked by representation dysfunction, property changes and impaired reasoning owed to encephalon illness oregon injury. The nonstop origin of LBD, which affects astir 1.4 cardinal Americans, is unknown. But the illness is associated with the accumulation of the macromolecule alpha-synuclein, which is typically contiguous successful the encephalon and successful tiny amounts successful the heart, musculus and different tissues. Alpha-synuclein mightiness assistance modulate neurotransmitters. But erstwhile this macromolecule accumulates and forms masses (called Lewy bodies) wrong the brain, the effects are devastating.

Lewy assemblage dementia and Parkinson's illness dementia are the 2 types of Lewy assemblage dementias, which are the 2nd astir communal signifier of dementia aft Alzheimer's disease, according to the Lewy Body Dementia Association.

Because LBD initially presents likewise to Alzheimer's oregon Parkinson's disease, it's often misdiagnosed. And since Lewy assemblage proteins can't beryllium tested similar Alzheimer's proteins, LBD cases are often diagnosed aft decease erstwhile families petition autopsies for closure oregon much details, oregon to donate a loved one's encephalon for research.

Typically for undiagnosed LBD patients who initially grounds question issues, doctors archetypal diagnose them with Parkinson's illness since it is simply a question disease. If those patients aboriginal make dementia arsenic well, they are often diagnosed with Parkinson's illness dementia. More circumstantial changes successful cognitive function, too, implicit clip tin pb to the diagnosis of "dementia with Lewy bodies." Although Lewy bodies are communal with Parkinson's disease, not all Parkinson's patients volition make LBD.

Misdiagnosis and overlapping symptoms tin pb to a satellite of disorder for patients and their families, truthful for Schneider Williams, yet learning the information down her husband's "pain and suffering" was a "pinprick of light," she said.

"That's erstwhile my ain healing started to begin," she said. "We had this acquisition with thing that was invisible and terrifying, truly. And past connected the different broadside of it, I'm near to find retired the subject underneath it that helped explicate this experience. Robin wasn't crazy. That was 1 of his biggest fears."

So that different patients and caregivers tin acquisition the aforesaid truth, knowing and healing, Schneider Williams has been successful a "rabbit spread of discovery" and advocacy for 8 years now. She has served connected the committee of the American Brain Foundation for six years, helped found the Lewy Body Dementia Fund and its $3 cardinal probe assistance grant aimed astatine uncovering an close biomarker, and contributed to the documentaries "Robin's Wish" and "Spark: Robin Williams and His Battle with Lewy Body Dementia."

"I couldn't unrecorded with myself if I didn't archer this story," Schneider Williams said. "I had nary thought the travel I was astir to statesman on. But I had to spell there."

Doctors and researchers wanting to mitigate the kinds of experiences her hubby endured "have a gangly order," she said, "but advancement is being made."

'Chemical warfare successful his brain'

Lewy assemblage dementia has much than 40 symptoms that tin randomly look and disappear, Schneider Williams said. Categorically, the signs see impaired thinking, fluctuations successful attention, problems with movement, ocular hallucinations, slumber disorders, behavioral and temper issues, and changes successful bodily functions specified arsenic the quality to power urinating.

What "marked the opening of a cascade of symptoms" was erstwhile her hubby started experiencing never-ending fearfulness and anxiety, Schneider Williams said. It began to hap successful 2012 erstwhile Williams started to propulsion backmost from engaging with radical astatine the Throckmorton Theatre successful California, wherever helium would effort caller worldly retired and riff with different comedians conscionable for fun, she added.

The anxieties persisted beyond what Williams had experienced successful the past and what is mean for a beloved histrion surviving with the pressures of being connected a satellite stage.

Eventually, paranoia was different important symptom, Schneider Williams said. "It was the amygdala portion of his encephalon that had a ginormous magnitude of the Lewy bodies. So that country of the encephalon is truly our quality to modulate our emotions, peculiarly fearfulness and anxiety. And Robin's was fundamentally broken."

Toward the end, Williams besides experienced delusional looping. "Your encephalon is concocting a communicative of what you deliberation world is," Schneider Williams said. "And the radical astir you are incapable to rationalize with you and bring you backmost into what is really real. So it's incredibly scary for everyone astir idiosyncratic who's deluded arsenic good arsenic the deluded person.

"As a caregiver, you consciousness incredibly powerless erstwhile you realize, 'Oh my gosh, thing I accidental oregon bash anymore tin bring him backmost to what's real.' And that's a precise scary place," she said. "Lewy assemblage — it truly takes over."

Williams was stressed by work, his abrupt forgetfulness and changing personality, and insufficient slumber — which progressed to terrible insomnia that removed the separation betwixt time and nighttime successful the couple's home. "Our location was similar 'Night astatine the Museum' astatine night," Schneider Williams said. Pulling him backmost from nighttime delusions would instrumentality hours, sometimes days, she added. "Imagined fearfulness connected occurrence — that is what it is."

Hallucinations are "a cardinal hallmark of LBD that tin truly assistance successful identifying the disease," Schneider Williams said, but besides a pugnacious grounds galore LBD patients don't privation to discuss. She didn't cognize astir her husband's hallucinations until her speech with a aesculapian nonrecreational who had reviewed his aesculapian records. A delusion involves a storyline with radical who tin deconstruct it for you — but a hallucination is thing lone you spot and truthful is easier to hide.

"Lewy assemblage is neurological; it's a circuitry problem. So the chemic and structural changes happening successful Robin's encephalon were liable for the psychiatric symptoms that helium was experiencing," Schneider Williams said astatine Life Itself. Those included depression.

The doctors Schneider Williams met with aft learning of his diagnosis "indicated his was 1 of the worst pathologies they had seen. He had astir 40% nonaccomplishment of dopamine neurons," she wrote successful her 2016 nonfiction "The violent wrong my husband's brain" for the diary Neurology. "The monolithic proliferation of Lewy bodies passim his encephalon had done truthful overmuch harm to neurons and neurotransmitters that successful effect, you could accidental helium had chemic warfare successful his brain."

Antipsychotic medications were unsafe for him and made immoderate symptoms worse, arsenic they bash for immoderate LBD patients, Schneider Williams said.

If radical experiencing neurodegeneration tin inactive bash immoderate routines specified arsenic enactment oregon locomotion their dog, those "usual, well-worn pathways tin supply comfort," Schneider Williams said. When radical tin nary longer bash those things, symptoms tin worsen and pb to devastating feelings of isolation.

'Every gait gained matters'

Nearly 8 years aft the diagnosis that catalyzed Schneider Williams' probe journey, she is "just present starting to truly prime up the pieces of my ain life," she said.

"I benignant of request to spell underground for a portion and relocate my inspiration and my existent passion, which is creation and painting," Schneider Williams said. She plans for a information of each her aboriginal people income to spell to LBD research, and she volition enactment successful interaction with efforts related to the documentaries and the Lewy Body Dementia Fund, wherever she remains pb chair.

As Schneider Williams widens her absorption portion leaving her doorway unfastened for LBD advocacy, experts proceed their probe efforts.

"We're ever learning much and much astir the disease, from the basal subject studies looking astatine cells and trial tubes, to carnal models, to quality observational studies," said Dr. James Galvin, a prof of neurology and manager of the Comprehensive Center for Brain Health astatine the University of Miami Miller School of Medicine.

Recent highlights see the instauration of astatine slightest 2 caller diagnostics, Galvin said: a spinal fluid test from the institution Amprion and a skin biopsy test from CND Life Sciences. The spinal fluid trial tracks misfolded synuclein and helps doctors diagnose encephalon diseases, including LBD. The tegument biopsy trial aims to assistance doctors separate betwixt superior neurologic disorders.

"To person diagnostics — that tin corroborate successful beingness that idiosyncratic has Lewy assemblage illness — goes a agelong mode some toward confirming the diagnosis and advancing research," Galvin said. "The earlier you tin commencement radical connected treatments, the easier to enroll radical successful objective trials to trial caller medications."

The National Institutes of Health has awarded Galvin and the institution Cognition Therapeutics a $29 cardinal assistance for studying whether a caller drug, CT1812, is harmless and effectual for patients with LBD.

To dainty LBD, doctors "borrow medicines from Alzheimer's to dainty cognitive symptoms, from Parkinson's to dainty centrifugal symptoms, from narcolepsy to dainty attraction deficits and from psychiatry to dainty behavioral symptoms," Galvin said successful a news release. CT1812 could assistance the brains of LBD patients wide toxic proteins and support against functional loss.

"When I wrote that editorial 'The violent wrong my husband's brain,' I was convinced that a diagnosis wouldn't substance anyway, due to the fact that determination is nary cure," Schneider Williams said astatine Life Itself. "But my reasoning since past has wholly changed. Diagnosis is everything -- not conscionable for the patients and caregivers, but for the doctors, clinicians and researchers. If we had an close diagnosis, we could person sought specialized care."

The Lewy Body Dementia Association has formed a Research Centers of Excellence Program, with 22 sites crossed the United States, to collaborate connected objective trials, measure needs for resources and infrastructure, and make amended measures of objective symptoms, said Angela Taylor, the association's interim enforcement director.

"We can't undo changes that person already occurred," said Samantha Holden, an subordinate prof of neurology astatine the University of Colorado and manager of the Memory Disorders Clinic astatine UCHealth University of Colorado Hospital. "But if we drawback radical aboriginal enough, tin we forestall it from progressing?"

Research advancement is being made successful babe steps. When asked whether determination has ever been a constituent erstwhile she felt similar giving up, Schneider Williams said, "Oh, my God. Pick a day."

"It's precise overwhelming erstwhile you look astatine each the millions and bazillions of dollars that are spent connected probe and you think, 'Oh my God, person we truly progressed astatine all?' " she added. But with however analyzable LBD is, "every gait gained matters."

"Whoever has anticipation has galore days of feeling the darkness," Schneider Williams said. "But the happening astir anticipation is that nary substance what, you particulate yourself off, you prime yourself up and you spell forward. And you don't bash that alone."

Read Entire Article