Alzheimer’s Association National Early-Stage Advisor: Tom Doyle

Tom Doyle was diagnosed with Alzheimer’s disease and secondary Parkinsonism in 2016 at age 63.

Tom completed degrees in education and counseling from Concordia University and the State University of New York at Brockport, and later received his Doctorate from Northern Illinois University while he worked as a principal of a Lutheran school in the Chicago area.

After receiving his Doctorate, Tom moved to California where he served as a professor of education at Concordia University Irvine and National University Los Angeles until the disease prompted his early retirement. Tom has three children from a previous marriage and four grandchildren. Fourteen years ago he met and married his husband, Levi.

During his final years as a college professor, Tom began experiencing challenges preparing and delivering the coursework to his students. Despite teaching the same courses for decades, Tom was forgetting details, struggling to find words, and losing his train of thought during lectures. His student evaluations reflected a change; after years of high marks, his feedback began to suffer.

Tom began to remove himself from university committees and workgroups, due to feelings of anxiety and inadequacy. During this time Tom was seeing a psychologist, who eventually raised his own concerns about Tom’s repetition and word loss. The psychologist suggested that Tom may have a “cognitive impairment,” and encouraged him to see a specialist.

At home, Levi observed that Tom was forgetting items around the house and would frequently repeat the same stories or questions. Initially, Levi thought that Tom was just becoming more forgetful, but assumed if Tom was still working he must be OK. Only later, did Levi discover the extent of Tom’s difficulties at work.

In 2015, Tom was diagnosed with Parkinson’s and dementia. A year later after further cognitive testing and spinal tap his diagnosis was changed to Lewy body dementia, and eventually to Alzheimer’s.

Following his diagnosis, Tom says he entered a state of “extreme anxiety and depression, a downward spiral” which was exacerbated by the sudden loss of his job. On the very same day Tom disclosed his diagnosis to school administrators, he was told he did not have to come in again. He remembers: “One day I was employed and the next day I was retired and on disability.”

Tom credits ongoing therapy and strong support from his family and neurologist as critical coping mechanisms in the months following his diagnosis. His neurologist referred him to the Alzheimer’s Association, and Tom began attending a younger-onset support group. Soon, he was invited by his local chapter to share his story through media interviews and speeches.

Today, Tom and Levi are navigating the disease together. They have moved to a smaller apartment to be closer to Tom’s doctor. Tom has recently relinquished cooking duties and mourns the loss of life-long hobbies such as reading and researching. He still enjoys dinners with friends, church events, and work around the house. He and Levi recently welcomed a third member of the family — a therapy Basset Hound named Ellie May. “We take care of each other,” Tom says.

As a member of the Alzheimer’s Association 2018-2019 National Early-Stage Advisory Group, Tom wants to be seen as “an individual who has the disease but is not defined by the disease.” He hopes to raise awareness that that people living with Alzheimer’s and other dementias are productive and vibrant, with full lives. He also wants to stress the benefit of early detection and diagnosis.

“It’s important when you’re facing cognitive issues that you keep pushing for answers, so you know what you are dealing with,” Tom says.

Tom and his husband Levi live in Schaumburg, IL.

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