Finding the Words: Writing a Novel with PPA

People travel from all over the country to the Mesulam Center for Primary Progressive Aphasia care. Eric Williams only has to walk four blocks.

In January 2020, Williams was having trouble with word finding. He had just returned to writing a novel he started decades before, but it wasn’t a case of writer’s bloc. It was different. “It’s like the words were in my brain, but I wasn’t able to grab them,” he said. 

Williams’ primary care physician was at Northwestern Medicine, so he asked about his symptoms and was referred to the Mesulam Center.

After receiving a Primary Progressive Aphasia (PPA) diagnosis, he began to work with a speech language pathologist to develop strategies to help when he couldn’t seem to grab the words.  As a writer, he writes a lot down, and he also put together a spreadsheet that includes key phrases and events, which he can refer to quickly.

This summer, Williams enrolled in the Language in PPA study, which is an observational study that follows individuals with PPA longitudinally. He was one of the early participants to come in for in-person research when it was safe to do so. As a participant in the study, Williams takes part in neuropsychological testing and advanced imaging like MRI.

Beyond getting involved in the research study, the opportunity allowed him to interact with people who understand the PPA diagnosis and what he is going through. “This is a very good thing for me to be doing, partly for me and partly for others in the future.” Williams completed his novel, The Game: it is now available on Amazon.

Much like a writer cannot anticipate how their book will affect others, so it is with Williams’ research participation. Although he likely won’t benefit from the outcome of his participation, he hopes that his involvement will aid in better understanding of PPA and lead to prevention or treatment.