The Heartbreak of Lewy Body Dementia


How I loved the acting and comedy genius of Robin Williams, especially when he was interviewed--his clever responses and impressions were a source of delight and laughter with his nonstop wit.


Initially, the media reported suicide as cause of death. Later, the public would learn that he had suffered from Lewy body dementia, a debilitating neurological disease that impacts the body and brain, causing hallucinations, confusion, fluctuating periods of alertness, movement issues and much more.


My late husband, Rick was stricken by the same tragic fate, however, it was not diagnosed in him until 11 years into his illness. Without knowing exactly what had transformed my gentle, loving "rock" of our family, into a sometimes raging stranger bearing no resemblance to his former self, put me on a relentless search for answers.


After reading an article, “The Terrorist Inside My Husband’s Brain” by his wife, Susan Schneider Williams, I experienced a visceral call to action to share the details of our experience, to shine light on this progressive, debilitating neurological condition. It wreaks terror not only on the body and brain of the loved one, but havoc upon the caregiver and friends and family, especially if not diagnosed early, as was the case in our own hellacious experience. What a difference a correct diagnosis would have made in understanding more of what we witnessed, yet unable to associate it with a known condition.


The disease is known to also spark suicidal thoughts, as it did with Williams. Fortunately, this only manifested briefly with Rick's fascination with knives, but frightening nonetheless to discover one under the mattress one evening. These two beautiful spirits’ lives were decimated by neurological nightmares as are many others today, and all the collateral damage caused by them. Fortunately, since both of their deaths, brain research has revealed much more with proven protocols for transforming such fates.


Lewy body disease can be hard to diagnose because it has similar characteristics to Parkinson's disease and Alzheimer's, especially a relatively new type of Alzheimer's with toxic roots as identified in brain research by Dr. Dale Bredesen. As was my husband's case, they sometimes happen together.


From everything we experienced and learned along the way, I was compelled to write, A Toxic Brain--Revelations from a Health Journey. I offer my family's experience, including personal

details about Rick’s sometimes wild, uncharacteristic behavior and personality changes, for anyone who might be facing a similar situation and wondering what happened to their loved one.


In my role as witness, scribe, and educator, I have compiled the details of our family’s journey to provide background for:

1) Patients and their loved ones, who may be experiencing a similarly confusing, frustrating journey in search of answers.

2) Practitioners who have patients with brain or behavioral issues, to consider neurotoxicity, Chronic Inflammatory Response Syndrome (CIRS), toxic encephalopathy, Lewy body dementia, Alzheimer’s Type-3 (toxic-related), and autoimmune disorders as possible organic reasons. Unfortunately, without much known at the time about these, he was improperly diagnosed with psychiatric issues without addressing root causes.


3) Industry leaders and government regulators, to recognize how both production and manufacturing of products and regulations regarding them can either support the health, safety, and protection of our citizens, or have the potential to create and sustain chronic health issues.

4) Readers interested in learning more about supporting their own brain health by understanding the root causes leading to neurological inflammation, common symptoms and behaviors associated with it, lifestyle interventions to help prevent its occurrence, and strategies for managing life when the unexpected strikes.


Robin Williams had a final role to play posthumously to help others gain awareness of the characteristics of how this neurological condition manifests so others can better understand it. So did Rick, whose career had long helped many clients of toxic tort cases with their health permanently impacted from the ravages of toxins.


In closing, the publisher has notified me that the ebook version of A Toxic Brain--Revelations from a Health Journey will be available on Amazon by April 1 as well as the print version for preorders. In the meantime, if interested, you can provide your contact information in the form in the Books section and we'll let you know of its availability as soon as it's released.


49 views0 comments