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More than a decade ago, Laurie Scherrer was a successful Pennsylvania banker in her mid-50s when she began forgetting people’s names and started to have trouble doing simple math. She had always been a motivator for her team, but she suddenly found herself very agitated with people over little things. She began carrying notebooks around with her so she could write everything down and refresh her memory when she drew a blank.
As she was experiencing these changes, Scherrer was also navigating career moves. She lost her banking job, then found others in sales, first selling furniture and then mobility vans. As her memory continued to deteriorate and her agitation increased, she found herself unable to focus on work. Several doctors ascribed her symptoms to stress and depression related to the death of a beloved nephew. After hours and hours of testing, a neurologist finally identified the cause of all the mental and emotional changes: She had two forms of dementia, specifically early-onset Alzheimer’s disease and frontotemporal lobe degeneration. These dementias cause the brain to atrophy or weaken progressively. The doctor turned to her husband Roy and told him they should get their affairs in order and spend as much time as possible with friends and family. “It was such a death sentence,” Scherrer remembers. “I went home and started preparing to die. My whole thought process was based on me dying.”
That was eight years ago. After the grim diagnosis, she experienced depression and started giving her possessions away, making preparations for what she thought was inevitable. But then the motivator inside her rebelled. “Other people had strategies that allowed them to cope. Why couldn’t we do that with dementia?” says Scherrer, 62. “Roy and I made it a goal to find ways to overcome my obstacles.” She started listening to motivational speakers and remembered all the people with disabilities she had met while selling mobility vans. She also discovered support networks, including a group called Dementia Mentors, made up of people mostly under 70 with dementia, and Dementia Action Alliance (DAA), a nonprofit dedicated to improving the lives and treatment of people living with dementia.
Other people had strategies that allowed them to cope. Why couldn’t we do that with dementia? Roy and I made it a goal to find ways to overcome my obstacles.
Laurie Scherrer, Board of Directors for Dementia Action Alliance
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That was a turning point for Scherrer. She became an active member of DAA and now serves on its Board of Directors. Scherrer has organized over 170 discussion groups and traveled to five countries as a speaker. Her advocacy work has been included in documentaries on dementia and she has been featured in the New York Times and on PBS. She is also a member of the Participant Council at the Center for Rehabilitation Outcomes Research at the Shirley Ryan AbilityLab, representing people with age-related disabilities. Scherrer reflects on the progress that disability advocates have made in getting accommodations for people with physical disabilities or intellectual and developmental disabilities over the past decades, and hopes to see similar improvements for other groups. “My main message is that we as a society need to adapt for people living with dementia” she says. “As long as I can continue to speak, I’m going to use every ounce of my energy to get that message out.”
My main message is that we as a society need to adapt for people living with dementia. As long as I can continue to speak, I’m going to use every ounce of my energy to get that message out.
Laurie Scherrer, Board of Director for Dementia Action Alliance
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Scherrer has made adjustments to live with dementia. She tells people to “do things with me – not for me. The more you do for me, the less I can do for myself.” She hangs all her clothes for the next day on one hanger so she doesn’t have to spend time figuring out what to wear. The canisters in her kitchen have pictures on them so she knows what ingredients go where. When she goes to a shopping mall, she wears ear plugs and sunglasses to cut down on the stimulation that exacerbates her symptoms. She has a service dog who watches out for her, and she gets lots of rest after busy days that leave her mentally exhausted. “Her attitude is ‘I’ve got this and I’m going to make the best of it,’” says Roy, who retired early to become a full-time care partner for his wife. “We just take every day and whatever the new challenge is we find out how to overcome it. We’re ahead of the game.”
Scherrer’s advice for others with dementia is simple. Do your own research. Connect with others who are affected by dementia and find a renewed purpose for your life. “There are days I can’t cook. There are days I have bad tremors,” she says. “But you need to focus on your abilities, not your inabilities. I can still do many things.”