Living with Alzheimer's: Ben and Robyn's story.

Ben and Robyn Ferguson

Ben and Robyn Ferguson, Texas natives, have spent the past 44 years in the “blissful trenches of matrimony.”  Ben spent more than 20 years as a psychologist in private practice while Robyn, 64, was a grant manager and director at Texas State University. 

Their lives took a turn 18 months ago when Ben was diagnosed with early onset Alzheimer’s at age 66. Once diagnosed, Ben retired from his practice and the couple moved to Chicago.  Ben could not receive the quality of treatment he desired in Texas.

It was a hard decision to retire because Ben considers his time helping children and families the best time of his life.

“You need to be in a world class city for world class programs,” Robyn said.

Ben’s first symptom was short term memory.  Originally Robyn thought he was hard of hearing but never thought it would be a cognitive problem.

Ben realizes this is only the beginning and the disease is slowly creeping in on him.

“[It’s] eating at my brain.” Ben said. 

The couple learned about Northwestern University’s research while reading an article in The New Yorker. 

“We hit the jack pot,” Robyn said.

At Northwestern, Ben is involved in multiple programs to spread awareness including the Buddy Program, speech therapy and several support groups.  Being part of these programs has helped Ben significantly since his diagnosis.

“[It] provides me relief of anger and sadness,” Ben said. 

“Northwestern is really helpful, we get together and talk,” Robyn said. ” The connection is helpful.” 

Ben and Robyn are part of these groups because they see Alzheimer’s as stereotyped and stigmatized. 

People see patients with Alzheimer’s as tied to wheelchairs in nursing homes and “throwaway people” but Robyn says Ben can still make significant contributions and there are ways to help.

The couple believes there is not enough funding for research but are hopeful that the situation will change soon, especially to be able to protect their children. Alzheimer’s is a very expensive public health problem and the only way to change these problems is to shine light on them.  In order for improvements, there has to be a collaborative effort.

“There has to be a nexus between federal money, biotech and pharmaceutical companies,” Robyn said.

Being part of psycho-social programs also requires a lot of money and the couple hopes to see these programs be available to everyone.

The couple still tries to maintain a normal lifestyle which includes traveling. However, these trips have to be shorter and ideally by train. As a result of Alzheimer’s, Ben’s capacity for dealing with stress has decreased and airport security makes him anxious. In the future, the couple has an Amtrak trip to Portland planned.

Since his diagnosis, Ben has also become interested in art, something Robyn said would have never caught his attention before. He is part of different art groups including a group for Alzheimer’s patients at the Loyola University Museum of Art. 

Being part of multiple programs has given the couple the opportunity to explore Chicago.  They enjoy their busy schedule and public transportation but try to avoid the red line.

Robyn now takes care of household responsibilities such as finances and their daily calendar. She says there is no way to prepare for Alzheimer’s.  Yet she jokes she has never swept a floor and Ben still takes care of that. 

“We’ve been a good team for a long time,” Robyn said.

By: Emily Brown and Anel Herrera