In the essay for medical journal Neurology, Susan opens up about Lewy Body Disease, the brain condition that led to Robin‘s death, and the struggle to find a diagnosis.
“He kept saying ‘I just want to reboot my brain.’ When we were in the neurologist’s office learning exactly what this meant, Robin had a chance to ask some burning questions. He asked, ‘Do I have Alzheimer’s? Dementia? Am I schizophrenic?’ and when his doctor said ‘No,’ Robin was unsatisfied,” Susan explained, mentioning the varying symptoms that weren’t leading to a diagnosis.
She added, “His left hand tremor was continuous now and he had a slow, shuffling gait. He hated that he could not find the words he wanted in conversations. He would thrash at night and still had terrible insomnia. At times, he would find himself stuck in a frozen stance, unable to move, and frustrated when he came out of it. He was beginning to have trouble with visual and spatial abilities in the way of judging distance and depth. His loss of basic reasoning just added to his growing confusion.”
Susan also recounted her final days with Robin, where the couple shared a perfect weekend together that she had hoped was a sign he was getting better.
Read all that Susan had to say in the Neurology medical journal.