Robin Williams

It was very tragic when Robin Williams took his own life back in 2014. He was just a little older than I am now when he died. His Parkinson's Disease and Lewy body disease (LBD) are two of the things that people seem to fear the most as they age: the loss of their own functioning brain. 

Robin's wife Susan sat down and wrote a letter to the American Academy of Neurology about Robin's illness and decline. It is heartbreaking to read. Someday, we will unlock the secrets of these horrible diseases, but countless people will die, horribly fearful and confused until that day. Here's yet another time I have to say, "Don't give me that 'intelligent design' bullshit"!

A few snips.

The terrorist inside my husband's brain

by Susan Schneider Williams

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. As you may know, almost 1.5 million nationwide are suffering similarly right now.

Although not alone, his case was extreme. Not until the coroner's report, 3 months after his death, would I learn that it was diffuse LBD that took him. All 4 of the doctors I met with afterwards and who had reviewed his records indicated his was one of the worst pathologies they had seen. He had about 40% loss of dopamine neurons and almost no neurons were free of Lewy bodies throughout the entire brain and brainstem.

Robin was losing his mind and he was aware of it. Can you imagine the pain he felt as he experienced himself disintegrating? And not from something he would ever know the name of, or understand? Neither he, nor anyone could stop it—no amount of intelligence or love could hold it back.

Powerless and frozen, I stood in the darkness of not knowing what was happening to my husband. Was it a single source, a single terrorist, or was this a combo pack of disease raining down on him?

Three months after Robin's death, the autopsy report was finally ready for review. When the forensic pathologist and coroner's deputy asked if I was surprised by the diffuse LBD pathology, I said, “Absolutely not,” even though I had no idea what it meant at the time. The mere fact that something had invaded nearly every region of my husband's brain made perfect sense to me.

In the year that followed, I set out to expand my view and understanding of LBD. I met with medical professionals who had reviewed Robin's last 2 years of medical records, the coroner's report, and brain scans. Their reactions were all the same: that Robin's was one of the worst LBD pathologies they had seen and that there was nothing else anyone could have done. Our entire medical team was on the right track and we would have gotten there eventually. In fact, we were probably close.

But would having a diagnosis while he was alive really have made a difference when there is no cure? We will never know the answer to this. I am not convinced that the knowledge would have done much more than prolong Robin's agony while he would surely become one of the most famous test subjects of new medicines and ongoing medical trials. Even if we experienced some level of comfort in knowing the name, and fleeting hope from temporary comfort with medications, the terrorist was still going to kill him. There is no cure and Robin's steep and rapid decline was assured.

Original.