Lewy Body Dementia Robin Williams Agonising Final 24 Hours Revealed

Robin Williams spent his last days in a paranoid frenzy, aware that ‘something else was wrong with him’, a British television show has previously claimed.

In a ‘peculiar’ incident just one day before his death, the Oscar-winning actor, who had been diagnosed with Parkinson’s, stuffed his collection of watches into a sock and took it to a friend for safekeeping.

The 63-year-old, who had also been prone to episodes of insomnia and anxiety prior to his death, also spent his final 24 hours frantically looking up drugs online, convinced he had another illness.

The post-mortem examination later revealed that Williams had been suffering from Lewy body dementia – an undiagnosed illness which could have been the root cause of his bizarre behaviour.

In the episode of Autopsy, which reconstructed the final hours of the actor’s life, pathologist Dr Richard Shepherd explained how Williams’ dementia probably triggered his paranoid tendencies.

He says that Williams’s insomnia and anxiety, as well as periods of confusion and impaired decision making, could also have been connected to the condition.

But Dr Shepherd told the Channel 5 show – which has previously examined the unexpected deaths of Michael Jackson and Elvis Presley – that the actor may well have been aware of his undetected illness, something which could have exacerbated his paranoia in his final hours.

He says that Williams’s online activity suggested he knew ‘there was something else wrong with him, – something that he couldn’t put his finger on’.

Williams hanged himself in August 2014, a death which sent shockwaves through the celebrity world and led to an outpouring of grief from his worldwide fans.

His death was later ruled to have been suicide. The show revealed how, on the day he died, Williams cleaned his bathroom of blood after cutting his wrists.

According to the post-mortem report, Williams spent his last night at his California home with wife Susan Schneider.

Ms Schneider later described how her husband stuffed a number of his jewelled watches into a sock before driving to the house of a friend.

Speaking about the incident on the show, Dr Shepherd says: ‘This is a very peculiar incident that his wife describes as typical of the increasing paranoia that he had been suffering.’

Psychologist Anjula Mutanda also says the actor could have felt ‘under threat’.

‘Somebody experiencing paranoid feelings may fear that they are in danger and under threat,’ she says. Whether it is physiological, physical or financial – harm could be coming their way.’

After Williams’s body was found, a bottle of quetiapine, a powerful drug used to treat schizophrenia and bipolar disorder, was also found unopened in his bedroom.

He had been prescribed it a week before his suicide, suggesting his symptoms may have changed prior to his death.

In the months before his death, Williams had also checked into rehab to ‘fine-tune and focus’ on his commitment to staying clean.

But the documentary concluded there were no signs that drink or drugs were exacerbating his depression when he died.

Blood samples taken after his death showed he had not taken cocaine or alcohol in the last 24 hours of his life.

There was also no sign of damage to his liver from previous drinking binges.

The show also described how toxicology reports showed Williams’ moods were being controlled by mirtazapine, which is used to treat depressive disorders.

There was also levodopa in his system, which is used to treat Parkinson’s.

The documentary, part of a third series of the show, had already drawn criticism from Williams’s fans after it emerged that it featured a ‘graphic’ reconstruction of the actor’s suicide.

A Channel 5 spokesman previously said the depiction was kept to ‘an absolute minimum’ but that its inclusion ‘is important in telling the truth’.

They added: ‘The film celebrates Robin’s career and talent, and within that the tragic details of his death are part of that story.’

French actor Alain Poudensan plays Williams in the reconstructed scenes.

While Alain has worked as a Robin Williams impersonator for a number of years, he has also starred in many adult films, under the name Alain L’Yle.

Williams found fame with his portrayal of a kooky alien in the 1970s sitcom Mork and Mindy.

But it was his role as an irreverent DJ with the US Armed Services Radio station in Good Morning, Vietnam in 1987 which won him huge acclaim.

His roles ranged from serious and dramatic in films such as Dead Poets Society and Good Will Hunting, to comedy in Mrs Doubtfire.

He was nominated for an Oscar three times before winning an Academy Award for his performance as a psychologist in Good Will Hunting in 1997.

Mrs Schneider Williams, his third wife, was in a battle with his three children from previous marriages – Zak, Zelda and Cody – over his £33 million estate.

Zelda recently spoke out about her father’s death.

When asked why she believed her father took his own life, she said: ‘I don’t think there’s a point. It’s not important to ask.’

In a statement released shortly after her husband’s death, Susan Schneider said that Williams was struggling with depression, anxiety and the Parkinson’s diagnosis when he died.

Toxicology reports showed there was levodopa in his system, which is used to treat Parkinson’s.

The disease is a progressive disorder of the nervous system that affects movement.

It develops gradually, sometimes starting with a small tremor in one hand.

The disorder also commonly causes stiffness or slowing of movement.

Actor Michael J. Fox, a long-time friend of Williams, is well-known for his efforts to fund research into finding a cure.

He was just 29 years old when he was diagnosed with the disease.

A Strange And Shocking Illness

Depression, paranoia, Parkinson’s disease, confusion and dementia. The long list of symptoms suffered by Robin Williams is itself confusing, but all of these and more besides, can be accounted for by the disorder bearing the name, dementia with Lewy bodies (DLB), which his widow has now announced as his final diagnosis.

Few people have heard of DLB until, like Williams’ family, they are confronted by its multiple and variable combinations of symptoms which fluctuate in severity in an alarmingly unpredictable manner.

Yet DLB is the second most common cause of dementia in older people, accounting for 10-15% of all dementia cases and affecting at least 100,000 people in the UK alone. Only Alzheimer’s disease itself is more common.

Despite this, as the founder of the Consortium on Dementia with Lewy Bodies which has, over two decades, developed global consensus on guidelines for the clinical and pathological diagnosis and management of this common disorder, I am aware how little-known it is.

Lewy bodies were first described in the early 20th century by Dr Friedrich Lewy, who was studying the brains of people with Parkinson’s disease, a condition recognised by a combination of a shaking tremor, slowness of limb movements, and a shuffling walk.

Lewy bodies are, in fact, microscopic clumps of a protein called alpha-synuclein which may, under certain and as yet not understood circumstances, accumulate within nerve cells in the brain.

When some critical brainstem and midbrain structures including the substantia nigra are involved, there is a loss of the neurotransmitter dopamineand Parkinson’s disease is the result.

But in the last 20 years or so, we have realised that Lewy body disease can also affect other parts of the brain, producing symptoms other than those of Parkinson’s.

It occurs in the autonomic and peripheral nervous system producing vegetative symptoms such as low blood pressure, constipation and sweating.

Defining Symptom

Lewy bodies occurring in the cerebral cortex, meanwhile, lead to the characteristic symptoms by which DLB is recognised, usually starting with mild and fluctuating disturbances in attention and wakefulness.

The affected person appears vague, drowsy or frankly confused with a decrease in their interest and ability to reason or to carry out practical tasks. Apathy is one term used for this and is frequently mistaken for depression.

Visuo-perceptual function is also affected early which may account for the report of Williams’ bruising “miscalculation with a door”, and it is this involvement of the visual system which underpins the occurrence of the lifelike visual hallucinations which occur in about 80% of cases and often alert the clinician to a DLB diagnosis.

Waking Nightmares

Hallucinations may be threatening or distressing but are often simply perplexing for patients who cannot understand why familiar faces or unknown intruders repeatedly appear to them.

For others, the hallucinations occur as nightmares as part of a specific sleep disorder. As the Lewy body pathology disease progresses, generalised cognitive impairment and dementia progressively worsen, although a fluctuating pattern with intervals of lucidity often persists.

Parkinsonism occurs in many but by no means all sufferers and in those like Robin Williams in whom it seems to have been quite early and prominent, the initial diagnosis given is often one of Parkinson’s disease, a dementia label following soon after as additional symptoms emerge.

Short-term memory failure, the hallmark of Alzheimer’s disease may not be prominent unless, and here’s where it starts to get complicated, there is also a lot of Alzheimer’s disease pathology in the brain as well.

Hard To Pin Down

Why did it take so long to recognise the existence of DLB, especially if it is so common? The answer, is that cortical Lewy bodies are vanishingly difficult to see in the brain using conventional staining methods, unlike their brainstem counterparts observed so long ago by Dr Lewy.

Nevertheless, the development of immuocytochemical staining methods in the early 1990s suddenly made them visible outside of specialised units. This was a major step forward.

But what progress is the research community making with DLB now? Internationally agreed criteria for the clinical and pathological diagnosis have been agreed since a meeting held in Newcastle upon Tyne in 1995, updated there in 2005 and due to be reviewed and updated again in December this year.

Dedicated research centres such as the NIHR-funded Biomedical Research Unit in Lewy Body Dementia at Newcastle University have led the field by, for example, developing diagnostic tests such as the dopamine transporter SPECT scan, which can distinguish DLB from Alzheimer’s with >85% accuracy and which is now widely clinically available.

New Hope

Therapeutic trials have been few and far between in DLB because of a combination of a lack of compounds to test, a pre-occupation with targeting Alzheimer’s and a reluctance of regulatory bodies to recognise DLB. All of these are now changing and DLB is increasingly viewed as a malleable and commercially-viable target.

Pharmacological trials in DLB will undoubtedly increase public awareness and for families such as Robin Williams’ there are now highly-effective patient and carer organisations that provide information, advice, advocacy and support research activity.

As an inter-form of Parkinson’s and Alzheimer’s disease, DLB has the potential to unlock the key to both of its related disorders.

It is high time it was put in the spotlight.