Robin Williams

This week, Robin Williams' widow said that his autopsy results  revealed that the talented actor and comedian suffered from a disease known as Lewy body Dementia (LBD), also known as Dementia with Lewy bodies (DLB), diffuse Lewy body disease, cortical Lewy body disease, and senile dementia of Lewy type

My father also suffered from this disease, but—like Robin Williams—it was not properly diagnosed until after his death. My father was diagnosed with Parkinson's disease twelve years before his death. Much later, he was also diagnosed with Progressive Supranuclear Palsy as an additional disease on top of his Parkinson's. It turns out that he had neither.

When my mother died, Dad came to live with me and my family. In addition to mobility issues, he suffered from well-formed, visual hallucinations. Often they were relatively harmless. Little people. Cats. Some things troubled him: he was convinced that a man was living in his car, stealing his quarters or that there were people in the backyard who needed our help. Other hallucinations were truly horrifying . . . ones that I won't get into at this time.

There wasn’t a lot of info on the Internet back then, but after doing some research, I at one point asked my father’s neurologist if he could possibly have Lewy body dementia. The doctor didn’t think so and felt that his hallucinations were cause by one of the many meds he was on for Parkinson’s.

Dad went through two brain surgeries for Parkinson’s (which, remember, he didn’t have) and received two implants. Electrodes ran from his brain to his chest where battery packs were located and where adjustments could be made to change the signals being sent to his brain. His neurologist noted that Dad was his only Parkinson's patient who hadn’t see much benefit from the surgeries. Now, of course, we know why.

After his death I donated his brain to CurePSP (the other disease he was diagnosed with that he didn't have). It cost $1,000 to have his brain donated, but in exchange I would receive a comprehensive report of their findings. My father’s doctor (after Dad’s death) found the money to cover that expense for me as he cared about my father a lot and was interested in the results, too.

When he called to give me the results, I could tell that Dad’s doctor was surprised. Likely, he also felt bad that he hadn’t diagnosed Dad properly, but in the long run it didn't really matter since there's nothing that can be done for it.

I would also like to state here that I never faulted Dad's neurologist. He was a caring doctor who always did what he could for my dad and our family. He was intelligent and educated. I just think that Lewy Body wasn't as considered back then as it perhaps is now. I think he also had another reason why he felt Dad didn't have Lewy Body, but it's been almost fifteen years since I had that conversation with him and I can't remember his reasoning. I just wanted to throw in there that his neurologist was great, even though he didn't get the diagnosis right. The article described diagnosing and treating this disease like playing a game of Whack-A-Mole. I always said it's like turning off the lights, throwing a dart, then turning the lights back on and seeing how close you got, then turning them off and trying again. There are no easy answers.

I am thankful that Robin Williams’ widow has gone public with this information. Even though Lewy Body Dementia is the second leading cause of dementia, most people (including many doctors) still have never heard of it.

Although I never say so in any of the books in the Chop,Chop series, this is what Natalie's father suffered from. Readers may remember that—like my father—he was diagnosed with Parkinson's, but suffered from hallucinations. What Natalie went through with her father, I went through with mine. In Alone, Annabeth’s experiences also came from what I encountered with my father.

If you are the caretaker for someone suffering from any kind of dementia, I would recommend the book The 36-Hour Day. Although it’s geared specifically toward the care of Alzheimer’s patients, I found some valuable information in it (and Tanner in Alone utilized some of the same techniques I learned from that book—both when he worked at the nursing home with Annabeth, and then later when he was caring for David).

If you know someone who has dementia or who is caring for someone who does, they need your support and your prayers.