Susan Schneider believes her 63-year-old husband committed suicide in August 2014 because of the debilitating brain disease, which is the second most common form of neurodegenerative dementia after Alzheimer's and causes heightened levels of anxiety, delusions and impaired movement.
The disease was only diagnosed after an autopsy was carried out following his death, and Susan has now joined forces with the American Brain Foundation to "cure all brain disease".
Speaking as she accepted the 2016 Angel Harvey Heart of a Patriot Award from the USO on Robin's behalf in Chicago over the weekend, Susan said: "The biggest battle of his life was against Lewy Body Disease. This terrifying disease attacks the brain. No matter how many doctors we saw, symptoms we chased, or tests we ran, it was only in autopsy that I learned we had unknowingly been battling a deadly disease. A disease for which there is no cure. The devastation on Robin's brain from the Lewy bodies, was one of the worst cases medical professionals have ever seen. Yet throughout all of this, his heart remained strong.
"In 1945 the American Cancer Society put all forms of cancer on the collective map and called it 'cancer'. They saw it as one disease and set out to attack each manifestation of it. It is time we take the same approach with the brain - combining medical knowledge, funding, research and efforts to look at brain disease as a whole.
I have joined forces with the American Brain Foundation and have taken up their noble mission: to cure all brain disease. Together we can usher in a new era of brain care where early detection, cures and ultimately prevention become reality."
Susan compared Robin's battle to that of America's servicemen and women and said her love for him had helped her to cope since his death.
She explained: "I'm here with you because of my husband's heart. Robin absolutely had the heart of a patriot. I cannot think of a more fitting award for him, nor one that he would be more proud to receive, especially in the presence of all of you.
Robin was also a warrior, and like so many of our finest servicemen and women he had battles to face.
"I stand hopeful before all of you. The love my husband and I have shared has been my beacon and my guide. The love all of you give by your choice to take your worst days and use them to give someone their best days - that devotion and caring for others is my strength."