The terrorist inside my husband's brain

October 3, 2016 4:00 PM

"This is a personal story, sadly tragic and heartbreaking, but by sharing this information with you I know that you can help make a difference in the lives of others. As you may know, my husband Robin Williams had the little-known but deadly Lewy body disease (LBD). He died from suicide in 2014 at the end of an intense, confusing, and relatively swift persecution at the hand of this disease's symptoms and pathology. He was not alone in his traumatic experience with this neurologic disease." (cw: discussion of suicide)
posted by roomthreeseventeen (20 comments total)

LBD is just as cruel as all the other forms of dementia.

Just a few weeks past, my wife and I watched a Robin Williams HBO standup special from last decade, where in between jabs at Wall Street bankers and Republicans he took a whack at Parkinson's drugs that caused compulsive gambling, as if the chemicals were on the same moral level as greedy bankers and heartless GOPers. I still wonder if it was a ghastly coincidence, or if he had done his homework and known for years that he was declining.
posted by infinitewindow at 4:21 PM on October 3, 2016 [4 favorites]

"Throughout all of this, Robin was clean and sober, and somehow, we sprinkled those summer months with happiness, joy, and the simple things we loved: meals and birthday celebrations with family and friends, meditating together, massages, and movies, but mostly just holding each other's hand."

Why does this read like about half of the movies he was in? I am not being glib, this is really hitting me hard. Something about how easy it is to picture the face he would make finding joy while underneath everything is a horror show is a little too much for me at the moment.
posted by Stonestock Relentless at 4:39 PM on October 3, 2016 [15 favorites]

...in between jabs at Wall Street bankers and Republicans he took a whack at Parkinson's drugs that caused compulsive gambling, as if the chemicals were on the same moral level as greedy bankers and heartless GOPers. I still wonder if it was a ghastly coincidence, or if he had done his homework and known for years that he was declining.

I actually heard him speak highly of Oliver Sacks on another occasion, whom he met during the filming of Awakenings - I got the sense that Sacks's work just fascinated him in general. He even said during the Questionairre sequence when he was on Inside The Actors Studio that his alternate career would have been neurosurgeon.

Which all came home to me with a slam when people said he'd been diagnosed with Parkinson's - because he'd spent so much time hanging out with Sacks, and reading up on this just as a personal interest, he was that much more aware of exactly what was going to happen to him.

The poor man...
posted by EmpressCallipygos at 4:43 PM on October 3, 2016 [21 favorites]

Man, that was hard to read. But I can imagine the release of being able to put a name to the enemy.

I still haven't gotten to the point yet where I can watch one of his movies.
posted by The Underpants Monster at 6:31 PM on October 3, 2016 [4 favorites]

Thanks for posting. That was indeed very moving.
posted by conrad53 at 7:16 PM on October 3, 2016 [1 favorite]

We all live in a realm of denial where we believe that this will not be our fate but it will.

Maybe we won't have this particular disease but we will have a particular disease. And it will kill us either suddenly or eventually.

Sprinkle that happiness while you can.

Life accelerates relentlessly whether you're steering or not.
posted by srboisvert at 7:30 PM on October 3, 2016 [13 favorites]

I still haven't gotten to the point yet where I can watch one of his movies.

I watch the "my wife used to fart in her sleep" scene from Good Will Hunting quite often. It still brings me a lot of joy.
posted by roomthreeseventeen at 7:36 PM on October 3, 2016 [1 favorite]

During the filming of the movie, Robin was having trouble remembering even one line for his scenes, while just 3 years prior he had played in a full 5-month season of the Broadway production Bengal Tiger at the Baghdad Zoo, often doing two shows a day with hundreds of lines—and not one mistake. This loss of memory and inability to control his anxiety was devastating to him.

Context:

Independent Lens | Playwright | Turning Robin Williams into a Dead Tiger | PBS

Also:

Charlie Rose: And you play the tiger.

Robin Williams: The essence of the tiger, yeah.
posted by mandolin conspiracy at 7:37 PM on October 3, 2016

Let's get to work on that stem cell research, folks.
posted by jenfullmoon at 11:11 PM on October 3, 2016 [5 favorites]

Wikipedia: Dementia with Lewy bodies.

Such a sad essay. And an important one. Like a lot of San Francisco folks, I felt some (inappropriate) ownership of Robin Williams, as if he was ours. I also assumed his suicide was the sad inevitable result of a man who had always been pretty on the edge of mental health, history of substance abuse problems, etc. I figured it all just caught up to him finally, tragically. To read his wife's explanation that yeah he was always a little nuts but this was different, worse, the result of a degenerative biological problem... Ooof.

I've never been comfortable with the mind / body dichotomy, the barrier between psychology and psychiatry, the physical vs mental. I don't understand it, the idea that my sense of self and identity is locked up with this poorly understood hunk of neurons and chemicals.
posted by Nelson at 1:37 AM on October 4, 2016 [7 favorites]

I never found him funny, but I always liked him. So sad, really.
posted by Joseph Gurl at 2:15 AM on October 4, 2016

I don't understand it, the idea that my sense of self and identity is locked up with this poorly understood hunk of neurons and chemicals.

You aren't any better off, understanding-wise, considering your self and identity to be bound up with a piece of ectoplasm or other non-physical splooge, at least.
posted by thelonius at 5:00 AM on October 4, 2016 [2 favorites]

.
posted by entropicamericana at 5:37 AM on October 4, 2016

LBD is just as cruel as all the other forms of dementia.

In my experience working with dementia, Lewy Body is one of the worst manifestations I've seen. We admitted a Parkinson's / LBD patient the other week, and observing him reminds me that this is one of the cruelest neurological conditions I can think of.
posted by skookumsaurus rex at 6:12 AM on October 4, 2016 [11 favorites]

My wonderful father-in-law passed away this summer after a long battle with LBD. Unlike Alzheimer's or Parkinson's, LBD eventually affects every part of the brain rather than a single localized area. As the essay points out, this can result in a baffling mix of physical, cognitive and perceptual symptoms and my father-in-law displayed every one of them including limited motor skills, hallucinations and the inability to follow all but the most simple instructions or conversations. Worst of all was the absolutely devastating Capgras Syndrome, which caused him to believe that his wife - his best friend, confidante and ultimately caretaker for almost 50 years - had been replaced by an imposter. The disease not only stole his body and his mind but also the love of his life.

My father-in-law also suffered from undiagnosed REM Sleep Behavior Disorder for over 60 years, a condition that is closely linked to LBD. One theory is that the sleep disorder interrupts the protein clearance process that normally occurs in the brain during sleep, leading to the gradual toxic build up of these proteins over time. Sadly, by the time recognizable symptoms begin to appear, the damage is far too great.

I'm glad that Susan Schneider Williams is continuing to bring attention to this tragic yet often mis-diagnosed disease. No one should ever have to watch their loved one slowly disintegrate before their very eyes.
posted by platinum at 6:34 AM on October 4, 2016 [11 favorites]

Agree with skookumsaurus rex- Lewy Body is very often among the cruelest of the dementias. While I’ve seen Parkinson’s-associated dementia that falls within the ‘pleasantly demented’ end of the spectrum (no idea what’s going on, but delighted to be here, thank you), the patients I’ve seen with frank Lewy Body have been tormented by their well-formed hallucinations.

I have inescapable memories of a patient I saw in med school constantly harrassed by members of her family and other phantoms entering her room aggressively demanding money from her. She was anxious and terrified and couldn’t be distracted; they were there, vivid, demanding, and intrusive, even as we’d speak to her on rounds. She’d plead with us to get them to leave, but of course they ignored us. It was awful to walk out leaving her alone in her empty, crowded room.
posted by monocyte at 7:52 AM on October 4, 2016 [13 favorites]

LBD is just as cruel as all the other forms of dementia.

Yeah. Speaking as someone who works for an Alzheimer Society and doing my share of public education on the topic, I am both sad and somewhat grateful that LBD is now a part of Robin's legacy; when I discuss the different types of dementia, mentioning that Robin Williams had LBD always gets audience attention and interest. I do wish that I could just talk about his legacy as a comedian and actor in a different context, though.

Unlike Alzheimer's or Parkinson's, LBD eventually affects every part of the brain rather than a single localized area

I'm not going to speak for Parkinson's, but Alzheimer's disease does spread throughout the brain as well. It usually starts at the hippocampus, which is why memory is one of the first symptoms, but will go on to damage the brain in its entirety (the personality changes and poor judgement are the result of the spread to the frontal lobe, etc). In fact, pretty much all of the non-reversible dementias will progress through the brain. Alzheimer's or LBD or FTD or any of the other 50+ types, they are all causes of organ failure...that organ being the brain. Anyways, back to work.
posted by nubs at 8:20 AM on October 4, 2016 [8 favorites]

Something about how easy it is to picture the face he would make finding joy while underneath everything is a horror show is a little too much for me at the moment.

No kidding. Very hard to read.
posted by mrgrimm at 12:25 PM on October 4, 2016 [1 favorite]

I miss him in the same way I miss Corey Monteith and Alan Rickman and I think of them each so often. This so hard to read again.
posted by Hermione Granger at 4:38 PM on October 4, 2016 [2 favorites]

I learned something new today. Thank you for posting the article.

It sounds like such a frightening thing for him (or anyone) to go through. Though our world is all the poorer for his absence, I'm glad that he didn't suffer longer.
posted by vignettist at 8:25 AM on October 5, 2016 [4 favorites]