My Dad, Robin Williams, Osama Bin Laden and Lewy Body Dementia

Lewy body dementia, My Father

I felt bad for Lewy body dementia this week.

On Tuesday, TMZ reported that Robin Williams was “struggling” with the disease, and that it had “triggered” the actor’s suicide in August.

If this was the first you’d read or heard about Lewy body, you would probably think: Wow, what a terrible thing.

You would not be wrong.

My father was diagnosed with Lewy body. As the disease was described to us, it was like Parkinson’s and Alzheimer’s rolled into one because that’s essentially what Lewy body is: Parkinson’s and Alzheimer’s rolled into one.

So, no, not a lot of fun.

And yet…

The hallucinatory nature of the disease, the part that TMZ seized on in its Williams report, made for fascinating discussions with my father. See, once meds were adjusted, my father was able to describe in great detail what he had seen on his Lewy body dementia trips. For example: When my father was out of his head in Nursing Home No. 1, he later related from the comfort of Nursing Home No. 2, he became aware of a nuclear bomb that was being stored in the next room over by Osama bin Laden. It was a brilliant ruse, he thought. After all, who would expect to find a high-grade explosive and the World’s Most Wanted Man in a skilled nursing facility in the San Gabriel Valley? Nobody, that’s who! (Good thing bin Laden wasn’t listening in, and taking notes.)

Odder than the bin Laden story was my father’s summer-long search for the baby. You may ask, what baby? I asked myself this, too, as, at the time, my father had four grown children (average age 40.3), no grandchildren and zero acquaintances among the infant and toddler set. But, oh, did that baby worry him. The darned tot was always getting kidnapped or otherwise vanishing. (Somehow, this act of going missing was always the baby’s fault, and not my father’s, even though reasonable people like myself would argue it was his responsibility to keep tabs on the imaginary baby.) In any case, the baby. It troubled him. It troubled him so deeply, apparently, that he never could answer the vital, “What was up with that?” question.

But—and this is key—he talked objectively about the baby. He talked objectively about bin Laden. He’d been to the other side of the lucidity, and returned to report on it. In the end, Lewy body dementia didn’t rob him of his mind. (His ability to swallow and play basketball, sure, but…) In the end, Lewy body dementia didn’t even kill him. (Spoiler alert: A heart attack did!)

My point here is not to sell Lewy body dementia as a good thing, but to remind that like many a bad thing, it may not be as bad as a TMZ headline makes it out to be.

The Lewy Body Dementia Association makes a similar point, noting that while an autopsy found Williams’ brain showed signs of the disease, the actor was not necessarily exhibiting dementia before his death.

Wonder if TMZ’s meds can be adjusted.