Robin and Susan knew something was wrong, and multiple doctors identified multiple explanations for his constellation of symptoms (Parkinson's disease, major depression, and so on). They prescribed many medications that helped only a little or, in some cases, made it worse. As Susan discussed in her article, Robin was doubtful of every diagnosis he heard. He knew something was wrong, and though he didn't know what exactly, the diagnoses being thrown at him didn't get to the heart of what he was experiencing. Imagine how frustrating and terrifying that must have been, not just for Robin but for the person closest to him. He wasn't diagnosed with Lewy body until after his death. Would knowing the true cause have given him some comfort? I see now why she didn't want to speak out right away. Not only that, she wanted to learn more about the disease that had taken her husband:
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.Since then, Susan has become involved with the American Academy of Neurology and serves on the Board of Directors of the American Brain Foundation. She shares her story now in the hope that it will help others:
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
Hopefully from this sharing of our experience you will be inspired to turn Robin's suffering into something meaningful through your work and wisdom. It is my belief that when healing comes out of Robin's experience, he will not have battled and died in vain. You are uniquely positioned to help with this.
I know you have accomplished much already in the areas of research and discovery toward cures in brain disease. And I am sure at times the progress has felt painfully slow. Do not give up. Trust that a cascade of cures and discovery is imminent in all areas of brain disease and you will be a part of making that happen.