The Sad Story Of Robin Williams' Lewy Body Disease
Williams' wife, Susan Schneider Williams, writes at neurology.org about, as she puts it, "the terrorist inside my husband's brain":
The colors were changing and the air was crisp; it was already late October of 2013 and our second wedding anniversary. Robin had been under his doctors' care. He had been struggling with symptoms that seemed unrelated: constipation, urinary difficulty, heartburn, sleeplessness and insomnia, and a poor sense of smell--and lots of stress. He also had a slight tremor in his left hand that would come and go. For the time being, that was attributed to a previous shoulder injury.On this particular weekend, he started having gut discomfort. Having been by my husband's side for many years already, I knew his normal reactions when it came to fear and anxiety. What would follow was markedly out of character for him. His fear and anxiety skyrocketed to a point that was alarming. I wondered privately, Is my husband a hypochondriac? Not until after Robin left us would I discover that a sudden and prolonged spike in fear and anxiety can be an early indication of LBD.
He was tested for diverticulitis and the results were negative. Like the rest of the symptoms that followed, they seemed to come and go at random times. Some symptoms were more prevalent than others, but these increased in frequency and severity over the next 10 months.
By wintertime, problems with paranoia, delusions and looping, insomnia, memory, and high cortisol levels--just to name a few--were settling in hard. Psychotherapy and other medical help was becoming a constant in trying to manage and solve these seemingly disparate conditions.
I was getting accustomed to the two of us spending more time in reviewing our days. The subjects though were starting to fall predominantly in the category of fear and anxiety. These concerns that used to have a normal range of tenor were beginning to lodge at a high frequency for him. Once the coroner's report was reviewed, a doctor was able to point out to me that there was a high concentration of Lewy bodies within the amygdala. This likely caused the acute paranoia and out-of-character emotional responses he was having. How I wish he could have known why he was struggling, that it was not a weakness in his heart, spirit, or character.
In early April, Robin had a panic attack. He was in Vancouver, filming Night at the Museum 3. His doctor recommended an antipsychotic medication to help with the anxiety. It seemed to make things better in some ways, but far worse in others. Quickly we searched for something else. Not until after he left us would I discover that antipsychotic medications often make things worse for people with LBD. Also, Robin had a high sensitivity to medications and sometimes his reactions were unpredictable. This is apparently a common theme in people with LBD.
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.
While I was on a photo shoot at Phoenix Lake, capturing scenes to paint, he called several times. He was very concerned with insecurities he was having about himself and interactions with others. We went over every detail. The fears were unfounded and I could not convince him otherwise. I was powerless in helping him see his own brilliance.
For the first time, my own reasoning had no effect in helping my husband find the light through the tunnels of his fear. I felt his disbelief in the truths I was saying. My heart and my hope were shattered temporarily. We had reached a place we had never been before. My husband was trapped in the twisted architecture of his neurons and no matter what I did I could not pull him out.
More on Lewy Body Disease here:
In the early 1900s, while researching Parkinson's disease, the scientist Friederich H. Lewy discovered abnormal protein deposits that disrupt the brain's normal functioning. These Lewy body proteins are found in an area of the brain stem where they deplete the neurotransmitter dopamine, causing Parkinsonian symptoms. In Lewy body dementia, these abnormal proteins are diffuse throughout other areas of the brain, including the cerebral cortex. The brain chemical acetylcholine is depleted, causing disruption of perception, thinking and behavior. Lewy body dementia exists either in pure form, or in conjunction with other brain changes, including those typically seen in Alzheimer's disease and Parkinson's disease.







My MIL has this. It's so hard to distinguish from Alzheimer's until the middle stages. She was diagnosed with AD, but her symptoms were atypical. FIL had just passed from AD, so the symptoms and progression of AD were still fresh, and she didn't *quite* fit the pattern. I'd never heard of Lewy Body Dementia, due to her history of high blood pressure and diabetes I was thinking along the lines of vascular dementia, as she was getting nasty and violent. It only has a presentation rate of 3% of all dementia in Japan, so it was really hard, and took a couple of years, to get a diagnosis.
The inability to tolerate a lot of medications is the biggest clue you may get....Lewy Body patients tend to be combative on Aricept, which usually calms those with AD. Haloperidol and other anti-psychotics send Lewy patients into a tailspin, and can cause a severe narcoleptic reaction....I thought we'd lose her at one point, and we discontinued all meds. Finally a SPECT scan gave us a diagnosis, and the reconfigured her treatment plan.
crella at October 1, 2016 4:32 AM
I'm so sorry to hear that, Crella.
Truly terrible disease, and truly terrible for the loved ones of the person who has it, as well.
Amy Alkon at October 1, 2016 6:56 AM
Horrible, horrible disease. One of our good friends, a brilliant, charming woman, succumbed to it years ago. It was heartbreaking to watch her deteriorate, and to to see her husband and children live through it.
Jeff at October 1, 2016 8:10 AM
Thank you, Amy. It's been 13 years since her first symptoms, she's doing very, very well for someone who has it so long. I credit her specialist, and her diet. Her specialist was willing to listen and keep testing till we got a diagnosis, and was flexible about tweaking her meds to get the perfect balance for her when we were working on calming her rages.
After reading about your success with it, and after having read Dr. Eads books, we put her on a high-protein diet (she wouldn't let go of rice completely, but we reduced it waaaay down), put her on the hospital high-protein meal plan, and supplement it with three small protein shakes a day. Her cognitive skills came up in about 5 days, and her A1c is 5.6, down from 7.8, so she's off the diabetes meds and cholesterol meds. And she's sharper!
I read somewhere that protein was good for Lewy's, but it was all I read here that made me book a conference with her docs and push ask for the change.
So if a loved one exhibits the memory issues of AD but
their personality changes
they get worse on Aricept
become narcoleptic on Haloperidol or similar drugs
and their speech doesn't get simpler over time like with AD
consider that it may be Lewy Body Dementia.
crella at October 1, 2016 4:40 PM
Not until after Robin left us would I discover that a sudden and prolonged spike in fear and anxiety can be an early indication of LBD.
Well, if that's the case, I've probably had it on and off all my life.
In all seriousness, though, may God grant us the ability and perseverance to find a cure for this abomination.
mpetrie98 at October 2, 2016 11:52 AM
I need to read up on this... are these proteins forming prions?
Cousin Dave at October 3, 2016 8:27 AM
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