Before Lewy body dementia (LBD) entered his life, Todd Doty was a successful IBM executive traveling the world and working with major clients. Outside the office, he was raising three children and pursuing his passion of golf, which he played competitively.
Around 2017, Todd started noticing subtle cognitive challenges that made everyday tasks difficult. The man who managed global business relationships with ease suddenly struggled to process and remember basic information. He began filling his work calendar with step-by-step reminders just to get through the day.
Through years of testing and appointments, doctors repeatedly dismissed Todd’s concerns as depression. But he knew it was something more serious. Eventually, his symptoms became so severe that Todd had to take medical leave from the career he loved.
In 2021, after suffering a stroke, a neurologist finally gave him a diagnosis: Lewy body dementia. But it came with little compassion or guidance. The doctor simply said, ‘You have Lewy body dementia. You’ve got three to five years to live. Go home, get your affairs in order, and good luck,’” Todd recalls.
Feeling frightened and isolated, Todd searched online for information and support. He found the Lewy Body Dementia Association (LBDA), and an hour-long phone call from Brandi Hackett, Director of Support Services, changed everything.
“The biggest thing was finding people who understood what I was going through,” Todd shares.
Through LBDA, he discovered support groups of others living with LBD who understood everything he was going through. “That sense of community has been the brightest light,” he says.
Today, Todd is bringing LBDA’s light to others. He moderates LBDA Facebook groups, leads a men’s support group for people living with LBD, participates in the Lewy Buddy program, and speaks publicly to raise awareness and research funding.
Todd often refers to Lewy body dementia as “Uncle Louie … He’s that relative who shows up whenever he wants to and stirs everything up,” he explains with humor. “Some days you feel great. Other days your life just sucks. You never know what’s going to happen.”
Even in the face of that uncertainty, Todd continues to show up for others living with the disease. Through LBDA, he has found purpose, friendship, and hope.
