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Robin Williams had a disease that mimics Alzheimer’s, Parkinson’s and schizophrenia

According to Robin Williams’ widow, an autopsy has revealed that the comedian suffered from Lewy body dementia before he committed suicide. Susan Schneider Williams described the battle to treat and understand her late husband's symptoms as a game of Whac-A-Mole. William Brangham learns about the lesser-known but common illness from Dr. James Galvin of Florida Atlantic University.

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  • HARI SREENIVASAN:

    But, first, it's been more than a year since actor and comedian Robin Williams died. But new details shared this week by his widow are calling attention to a form of dementia that has received little public focus until now.

    William Brangham has the story.

  • WILLIAM BRANGHAM:

    After Robin Williams took his own life, his press representative said Williams was battling severe depression. His widow, Susan Schneider Williams, also said back then that he was struggling with depression and early stages of Parkinson's disease

    But this week, Mrs. Williams told ABC News and "People" magazine that an autopsy revealed something else. He had what is known as Lewy body dementia. She described battling a mysterious set of symptoms for a year, something she compared to playing Whac-A-Mole — quote — "They present themselves like a pinball machine," she said. "You don't know exactly what you're looking at. I have spent this last year trying to find out what killed Robin, because we didn't know. He didn't know."

    Joining me now to help us understand more about this disease is neurologist Dr. James Galvin. He's a professor and associate dean for clinical research at Florida Atlantic University.

    Dr. Galvin, thank you for joining us.

    It seems that before this news about Robin Williams broke, most of us had never heard of this disease. Can you tell me a little bit more about it?

  • DR. JAMES GALVIN, Florida Atlantic University:

    Sure.

    So, Lewy body dementia may be the most common disease you have never heard of. It's the second most common cause of memory problems after Alzheimer's disease and affects over 1.3 million Americans. Its predominant symptoms are a progressive change in memory and other thinking functions, signs of Parkinson's, so, slow movement, stiffness, balance problems, visual hallucinations, seeing things that aren't there, like little people or furry little animals, fluctuations in levels of attention, concentration, and, lastly, a sleep disorder where people act out their dreams.

  • WILLIAM BRANGHAM:

    Among that huge array of symptoms, I'm curious about the particular visual hallucinations you described. Is that common for a certain type of dementia to have such specific hallucinations?

  • DR. JAMES GALVIN:

    It's very common in Lewy body dementia.

    Typically, if other dementias, other memory problems develop hallucinations, they're not until much later in the course of the disease, and the hallucinations are not so well-formed.

    What's particularly characteristic of Lewy body dementia are these very well-formed hallucinations. They're usually not frightening initially to the patient, but they are very well-formed. They usually can describe exactly what they're seeing.

  • MALCOLM BRABANT:

    Is it partially because — it sounds like the symptoms seem to mimic Alzheimer's and other diseases. Is that why this is such a difficult to diagnose?

  • DR. JAMES GALVIN:

    That's exactly why.

    Early on, some of the symptoms may mimic other diseases, like Alzheimer's if it's just the memory problems, Parkinson's disease, if it's the movement problems, or a psychiatric disease like schizophrenia if it's the hallucinations.

    It really takes an experienced clinician to be able to be able to put all the pieces together and come up with the diagnosis.

  • WILLIAM BRANGHAM:

    So, is this a degenerative disease? And is there any cure? Does it just get worse, or is there any prognosis that is a hopeful one?

  • DR. JAMES GALVIN:

    Well, it is a progressive degenerative disease, and we do not have a cure for it yet.

    We can effectively treat many of the symptoms of the disease using medicines for other diseases. So, for example, we can use the medicines that are used in Alzheimer's disease and Parkinson's disease and schizophrenia to treat the individual symptoms, but I think it takes a very careful, individualized approach to decide which is the best regimen of medicines for each patient.

  • WILLIAM BRANGHAM:

    Robin Williams' widow described battling these symptoms as akin to playing the game Whac-A-Mole. Is that similar to what you have heard from other parents, that it's this very mysterious, hard thing to pin down, you just don't know what's coming at you?

  • DR. JAMES GALVIN:

    It can be very mysterious and very difficult and challenging for the patients and the families and for the clinicians, frankly.

    As the symptoms begin to appear, it really takes a while to kind of sort out what is going on. With the Lewy Body Dementia Association, we had conducted a survey over 950 caregivers to try to understand the diagnostic experience. And what we found was up to an 18-month delay, with patients seeing multiple doctors over multiple visits, before finally getting a correct diagnosis.

  • WILLIAM BRANGHAM:

    I understand that there is some question about whether people who suffer from Lewy body dementia might be more at risk to harm themselves or to commit suicide. Can you tell me a little bit about that? Why would that be and is that true?

  • DR. JAMES GALVIN:

    Well, there's no evidence that any of the dementias, Lewy body dementia or Alzheimer's disease, for that matter, by themselves increase the risk of people committing suicide.

    Now, for some individuals, when they hear they have a chronic disease and they're trying to deal with a chronic disease, and maybe the diagnosis isn't given or isn't correct at the time, and their symptoms aren't responding, people can make decisions to harm themselves. But the disease itself is not associated with a higher risk of suicide.

  • WILLIAM BRANGHAM:

    I see.

    So, looking forward, I mean, is there any optimism that we're at the cusp of a treatment for this type of a disease?

  • DR. JAMES GALVIN:

    Well, I think there is great room for optimism. We know more and more about the disease. We understand more and more about the abnormal proteins that aggregate or clump together, that cause the changes in the brain.

    And so now this is beginning to allow us to develop medications that may have some effect. Very recently, several companies have made announcements that they're beginning specific clinical trials to treat Lewy body dementia. And these would be the first medicines specifically indicated for treating Lewy body diseases.

    So, I think there is great optimism. I think it's important that patients remain hopeful and families remain hopeful and stay engaged and advocate for their loved ones, so that we can get more research funding to develop new treatments.

  • WILLIAM BRANGHAM:

    All right, Dr. James Galvin of Florida Atlantic University, thank you very much.

  • DR. JAMES GALVIN:

    Thank you.

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