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"

Chinese actor Xu Ting dies after choosing traditional medicine over chemotherapy

Confronting photos of the bruised and swollen body of the Chinese actor Xu Ting widely circulated after her death have been used to highlight the dangers of using traditional Chinese therapies over conventional medicine for treating cancer.

In July Xu, 25, announced on the Chinese social media website Weibo she had lymphoma, a cancer of the lymphatic system that best responds to chemotherapy as a first-line treatment.

However, Xu said the high cost of chemotherapy in China and her fears about side effects and pain meant she had decided to treat her cancer with a mix of Chinese therapies instead.

“No matter how long I live, I want to enjoy every day happily,” she wrote, adding that she did not want to “let chemotherapy torment me to the point where there’s no beauty and talent left”. The actress appeared on television in the series Dad Home and acted in the comedy Lost In Macau.

Later in July, Xu posted photos to Weibo of the aftermath of some of the alternative treatments she had undergone, including acupuncture and cupping, which involves placing a flammable substance into a cup, typically a cotton bud, and setting it on fire. As the fire goes out, the cup is placed upside down on the skin, usually the back, creating a vacuum and leaving welts on the body.

Some users begged her to seek chemotherapy. One user wrote on her Weibo page: “You need to rely on modern medicine to save yourself.”

The American Cancer Society guide to complementary and alternative therapies warns of the risk of burns from cupping and states that “available scientific evidence does not support claims that cupping has any health benefits”.

Xu also turned to gua sha, a treatment that involves scraping the skin with a tool, and which is practised by the actor Gwyneth Paltrow and the swimmer Michael Phelps. It left Xu with red marks and bruising down her neck.

“Frankly, traditional Chinese medicine is also painful,” Xu wrote as a caption underneath one of the images of the treatment she posted to her blog.

According to a study published in the journal Complementary Therapies in Medicine, gua sha users in Hong Kong tended to use it mostly to treat respiratory and pain problems.

In August, Xu’s sister encouraged her to undergo chemotherapy as she became more unwell. Xu died on 7 September, shortly after starting chemotherapy.

Her death has sparked a debate in the Chinese media about the use and effectiveness of Chinese therapies. On the Chinese news website people.cn, the head of the traditional Chinese medicine department at the Chinese Academy of Medical Sciences in Beijing, Dr Feng Li, wrote that Chinese therapies should not be blamed for Xu’s death.

He wrote that “while western approaches like radiology, chemotherapy, and surgery are effective in shrinking the tumour”, Chinese therapies were “effective in reducing symptoms such as nausea, vomiting and pain that comes with western treatment”.

“Moreover, after the tumour is under control, traditional Chinese medicine helps to repair the immune system, accelerate the body’s recovery and minimise the chance of the tumour returning.”

A 2014 review of complementary and alternative medicine for cancer pain found alternative treatments, including Chinese treatments, had “low or moderate” evidence for alleviating cancer pain.

But a peer-reviewed paper published in the journal Cancer and Oncology Pain described the barriers some people faced obtaining conventional medical treatment. Led by Dr David Garfield from the ProMed Cancer Centre in Shanghai, the authors wrote that “Mainland Chinese attitudes are different from what we are accustomed to in the west”.

“There is a lack of trust between patients/families and physicians, related in part to there being few urban general practitioners, resulting in no longstanding, physician-patient relationships,” the authors wrote.

“There is a feeling that care is being provided for personal gain, much more so than in the west. When individuals are ill, or think they may be, they go directly to hospitals, including traditional Chinese medicine hospitals, rather than seeing a non–hospital-based practitioner.”

“Anti-cancer drugs, even for patients treated in public hospitals, are costly,” the authors added, writing that proven and effective treatments “although available, are out of reach for all but the wealthy”.

Cost, rather than mistrust, appeared to be a factor for Xu shunning chemotherapy. In one post on her Weibo blog, she wrote about how exhausted she was from trying to provide for her family financially.

“Over the past five years, I worked very hard to support the large family,” she wrote. “I made money to pay for my younger brother’s tuition fees, pay my parents debts and even buy a house. The pressure made me breathless.”

Chinese actor Xu Ting dies after choosing traditional medicine over chemotherapy