Robin Williams"s widow reveals how dying actor fought "chemical warfare in his brain"

The widow of Robin Williams has lifted the lid on the actor’s struggle with a debilitating neurological disease in the months before he took his own life, likening it to “chemical warfare in his brain”.

Writing in the journal of the American Academy of Neurology, Williams’ wife Susan Schneider Williams has detailed the final months of her husband’s life as the couple struggled to respond to his devastating decline in health.

Williams took his own life in August 2014.

Three months before his death Williams was diagnosed with Parkinson’s, but Schneider Williams has previously revealed the autopsy identified that he had suffered from Lewy body disease (LBD).

In her essay, “the terrorist inside my husband’s brain”, she said doctors would later discover it was instead one of the worst cases they had ever seen.

LBD is an incurable form of neurodegenerative disease. It is the second most common form of dementia after Alzheimer’s, with which it shares many symptoms, and can be misdiagnosed as Parkinson’s disease.

In October 2013, on the couple’s second wedding anniversary, Williams experienced gut discomfort, and fear and anxiety which “skyrocketed to a point that was alarming”, Schneider Williams wrote.

He had already been experiencing various physical ailments, which had been intermittent and which the couple and doctors had believed were unrelated. By December he would suffer from increasing levels of “paranoia, delusions and looping, insomnia, memory, and high cortisol levels”.

After his death doctors found that a high concentration of Lewy bodies in his brain’s amygdala had caused the acute paranoia and “out-of-character emotional responses”.

Schneider Williams described it as “chemical warfare in his brain”.

“How I wish he could have known why he was struggling, that it was not a weakness in his heart, spirit, or character,” she said.

Over the following months Williams suffered from panic attacks and memory loss, struggling to remember lines during the shooting of Night at the Museum 3.

He kept saying, ‘I just want to reboot my brain’.

His mental state declined, and Schneider Williams found herself increasingly unable to reassure his anxieties and insecurities.

“Robin was losing his mind and he was aware of it. Can you imagine the pain he felt as he experienced himself disintegrating? And not from something he would ever know the name of, or understand? Neither he, nor anyone could stop it – no amount of intelligence or love could hold it back,” she said.

“He kept saying, ‘I just want to reboot my brain’.”

While had been diagnosed with Parkinson’s disease, Schneider Williams wrote that after his death it became apparent that, pathologically, he suffered from diffuse LBD.

“One neuropathologist described LBD and [Parkinson’s disease] as being at opposite ends of a disease spectrum. That spectrum is based on something they share in common: the presence of Lewy bodies – the unnatural clumping of the normal protein, a-synuclein, within brain neurons,” she said.

Schneider Williams said four doctors examined her husband’s autopsy report and final two years of medical records and they “indicated his was one of the worst pathologies they had seen”.

“He had about 40% loss of dopamine neurons and almost no neurons were free of Lewy bodies throughout the entire brain and brainstem.”

She said the medical team had been on the right track in diagnosing and treating Williams before he died, but she would never know if that would have made a difference.

“I am not convinced that the knowledge would have done much more than prolong Robin’s agony while he would surely become one of the most famous test subjects of new medicines and ongoing medical trials,” she said.

“Even if we experienced some level of comfort in knowing the name, and fleeting hope from temporary comfort with medications, the terrorist was still going to kill him.”

Schneider Williams, who was last week appointed to the American Brain Foundation’s board of directors, said she wrote the essay to increase neurologists’ understanding of patients and caregivers and to “add a few more faces” to the reasons they conduct research.

• In the US, the National Suicide Prevention Hotline is 1-800-273-8255. In the UK, the Samaritans can be contacted on 116 123. In Australia, the crisis support service Lifeline is on 13 11 14. Hotlines in other countries can be found here.

Robin Williams"s widow reveals how dying actor fought "chemical warfare in his brain"

Fahma Mohamed: the shy campaigner who fought for FGM education

Sporting a brightly coloured headscarf, leather jacket and a wide, lipsticked smile, student Fahma Mohamed insists she is naturally very shy. “I was always the one in the background, I would have never carried out any of the speaking – I just didn’t have the self-confidence,” she says.

But items have changed significantly given that the 17-yr-old Bristol pupil grew to become the encounter of a Guardian-backed campaign to put education at the heart of tackling female genital mutilation (FGM) at the start off of February.

This week saw a series of victories for a campaign that has attracted practically 250,000 petition signatures as effectively as the backing of Pakistani schoolgirl Malala Yousafzai and the UN secretary common, Ban Ki-moon.

In an extraordinary meeting on Tuesday, Fahma – alongside other members of the youth charity Integrate Bristol – met with the education secretary, Michael Gove, to request him to compose to each college in the country about the horrors of FGM.

After a meeting that lasted more than an hour – to the girls’ delighted surprise – he agreed. Praising Fahma’s “inspirational” campaign, he mentioned the department would send each school guidance on retaining youngsters risk-free by Easter – just before the summertime holidays – and would incorporate materials to allow teachers to tackle the topic of FGM.

On Friday she saw him again – this time in her school, the City Academy Bristol (CAB) – to attempt to persuade him that FGM can, and need to, be taught in class.

Speaking soon after the hour-lengthy check out, Fahma said Gove had been good about educating FGM in schools. “It was quick, but really good,” she says. “He was entirely onboard saying that younger folks have been significantly a lot more engaged in fighting for human rights than in his time.”

The student – 1 of nine ladies from a Somali loved ones – has spoken to camera crews from about the planet, has been invited to weblog on Mumsnet and talk at conferences. She says: “It has been fully crazy, but I’m ecstatic. How many folks get to say they’ve been to London to advise the secretary of state? It was all really worth it and I’m just so pleased.”

Soon after months of meetings with FGM activists and campaigners, filming, planning, negotiating and reporting, Fahma launched the campaign on six February, the UN’s day to mark zero-tolerance of FGM. The Guardian reported that despite virtually three decades of legislation against FGM, which is thought to influence 66,000 girls in England and Wales, even though 24,000 ladies below 15 are considered to be at danger, people doing work on the ground had been warning that the brutal practice was nevertheless occurring to British children.

Reporting that a lot more than 140 million ladies and girls about the planet have been impacted by FGM, which entails removing element or all of a women’s outer sexual organs, the Guardian also spoke to a former cutter in Kenya and activists in France about how that nation had aggressively tackled the concern. The UK’s youthful poet laureate shared a poem about the practice, while Cuban artist Eric Ravelo created the emblem.

A petition calling on Gove to consider action, on Alter.org, grew to become one of the fastest-growing petitions hosted on the campaigning website, at one particular point attracting two signatures every 2nd.

Inside of days the Scottish government had agreed to compose to all colleges to ask them to train their employees and educate mother and father about FGM, an early day movement in parliament followed and the help of Ban Ki-moon and Malala Yousafzai, who known as Fahma her “sister” and stated they had been portion of the exact same struggle for girls’ rights.

In the meeting this week Gove stopped brief of saying that FGM need to be taught in all colleges, but did request Fahma for much more proof on how it could be taught in an “age-appropriate way”.

Friday’s quickly-organized meeting came also soon for a pay a visit to to nearby St Werbergh’s – one particular of the handful of primary colleges in the nation to educate pupils about FGM – to be organised. But had he visited Gove would have identified a richly various college – with pupils from 14 distinct ethnic backgrounds and more than 50% speaking English as a 2nd language – unafraid to tackle FGM as a child protection issue.

After the launch of the Guardian’s campaign, Everyday Mail columnist Sarah Vine, who is married to the schooling secretary, wrote that nine-yr-olds risked currently being “terrified” by if topic was taught in colleges.

For the duration of his Bristol visit to CAB, Gove admitted he was “nervous” about main schooling, and expressed interest in going to the college in the long term.

Claire Smith, sitting between the painted murals and lively business of the college day, insists it is possible to hold children risk-free from FGM with no providing them nightmares. In lessons at St Werbergh’s year six youngsters, who have been offered permission from their parents, understand about FGM without the use of graphic pictures and in secure language they can comprehend.

“We are evidence that it is entirely attainable to educate this in an age-appropriate way – it’s not about scaremongering, it really is about trying to keep youngsters safe,” says Smith, including that principal schoolchildren might be at the most risk. “An opportune moment for FGM to come about is when they are transferring between colleges – in a new school a instructor might not know your behaviour had modified, whereas here we would recognize straight away.”

Lisa Zimmermann, a teacher at CAB, set up Integrate Bristol soon after getting told that eleven out of 12 ladies in a group she was taking on a journey had undergone cutting. It began with four nervous girls creating anonymous poetry and has swelled to much more than 100 members calling themselves the #FDL – the female or “fanny” defence league – which has manufactured films, a music video and met Gove.

“We have come so far – from four terrified ladies to taking on the education secretary – it truly is been an wonderful journey,” Zimmermann says. But until the risks of FGM is taught in all colleges, they will not stay quiet, she adds. “Who is going to have that conversation otherwise? This campaign has allow schools know that it is alright to talk about this – it is going to make a big difference to girls’ lives, and to ladies that have not even been born nevertheless. But we have to maintain going.”

Fahma, despite the whirlwind of the previous few weeks, is not fairly ready to put her campaigning days behind her. “I have realized that I know a great deal a lot more than I thought I did. I have also realised just how passionate I am,” she says, including that she fairly likes the younger kids coming up to her in school. “It is cool,” she says. “I like currently being a role model. I want them to know that if they actually want to do anything, they can do what ever they want in daily life.”

Fahma Mohamed: the shy campaigner who fought for FGM education