After their diagnosis, these people living with Alzheimer's found passion and purpose
Halfway through their cross-country road trip last summer, Brian Gaughan and his wife, Judy, grabbed their bikes and hit a trail along the Snake River in Idaho. They pedaled next to raging whitecap waves and down a rugged path through soaring snow-capped mountains.
The experience was a once-in-a-lifetime moment — and it never would have happened if Brian wasn't living with early-stage Alzheimer's. "It was just crazy cool, I kept telling myself, 'I'm riding a bike along the Snake River!' And I was also telling myself, 'I wouldn't be doing this if I didn't get Alzheimer's,'" Brian, 62, says. "I would be at my desk right now typing out some silly report."
Alzheimer's is a devastating disease that no one would willingly ask to get. But after an Alzheimer's diagnosis, many people reprioritize life — and finally move forward with the things they have always wanted to do. The disease, and their eventual decline, serves as a reminder that time is short and there is no time like the present to live your dreams.
Camping across the country
Before he was diagnosed with Alzheimer's in July 2020, Brian knew something was wrong. Working as a criminal investigator for the state of Illinois, he found himself getting lost along his commute to downtown Chicago. For Brian, the news he had Alzheimer's was "like a punch in the face for a few months."
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"It really changed a lot of future plans my wife and I had," he says.
Brian intended to retire in 2022, sell his house and possessions, and travel the world with Judy. Even though Alzheimer's canceled that plan, Brian refused to let the disease control his life.
"While I can't do anything to change my diagnosis, I can control how I respond to it," Brian says. "And I have chosen to see it as an opportunity to do the things I've always wanted to do. I intend to make the most of each day."
Brian and Judy bought a camper, and in the summer of 2021 headed out on a three-month road trip to the Pacific Northwest and back — stopping to camp in beautiful parks, visiting fascinating attractions, and spending time with their children and grandchildren.
Brian's diagnosis did require the couple to take precautions. Judy created a checklist for Brian to follow every time they left a campsite, otherwise "I would have pulled away while still hooked up to the water spigot," he says. But the disease never stopped them from enjoying each day together on the road.
Brian and Judy are already planning their next adventure in their camper to the East Coast. But the need to travel isn't the only change to come from Brian's diagnosis.
"I try to get more enjoyment out of things now and prioritize things better, with the focus on human interactions," Brian says. "You have to make changes with Alzheimer's, big changes, but as long as I'm making changes I'm going to make them for the better."
Changing the world one bike at a time
Brian Reece has always been good at fixing things, and as a kid was known around the neighborhood as the person to see when your bicycle broke down. Now Brian, 67, is putting that mechanical knack to work through the "Bike Elves" — an initiative to repair and donate bicycles to children and adults in need.
Since Brian and his wife, Anne, started Bike Elves in 2012, the Reeces have fixed and distributed more than 6,900 bikes free of charge to people near their home in Beloit, Wisconsin. Bike Elves started shortly after Brian was diagnosed with younger-onset Alzheimer's and forced into early retirement at age 56.
Following his diagnosis, Brian says he was depressed and felt like "everything was being taken away from me." Anne reassured Brian and encouraged him to look at his early retirement as an opportunity to do the things he couldn't while working.
Anne's brother asked Brian if he wanted to fix up some broken bicycles he had to pass the time. Brian jumped at the chance and soon had several fully working bicycles in his driveway.
While on Facebook, Anne learned of a mom who was looking for a bike for her son. The Reeces decided to give the mom and others the refurbished bikes, putting out the word on social media. "Next thing I knew we were giving away repaired bikes and people were giving us broken bikes," Anne says.
Since that first bicycle, Bike Elves has grown into a full-time operation. Bike donations come in by the truckload from community members and several police departments in the area. Anne, who is now retired, assists Brian with the initiative. They even bought a small house next door to serve as their workshop and storage area after their house was overrun with wheels and gears.
"The best part is it keeps my hands busy, my mind busy, I'm constantly thinking and not sitting idle," Brian says. "When I was first diagnosed I'd just sit idle in a funk, and didn't think about anything. Now I'm continuously on the move and finding things to do."
Bike Elves gives Brian motivation to wake up each day and fight while giving back to his community. "I said, 'You don't have to work on the bikes if you don’t want to,'" Anne says. "And he said, 'If there are kids that need bikes, I'm going to work on them.' It has become his purpose."
After an Alzheimer's diagnosis, accepting changes in your abilities and adapting new coping skills can help you restore balance to your life and give you a sense of accomplishment in your abilities as you live with the disease.
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But Brian can't completely leave dementia behind. Oftentimes he will put a tool down and turn away, and when he turns back, the tool will be missing. But despite his cognitive challenges, Brian is still fully capable of repairing and even making creative modifications to bikes.
Brian and Anne feel they have taken Brian’s diagnosis and turned it into something positive. "We have both come to the realization that this is what we are meant to do," Anne says. "And Alzheimer's doesn’t mean you can’t do or learn new things."
Spin the globe
The first gift Patricia Strauss received from her then-boyfriend, Eric, was luggage. A prolific world traveler since she was a child, Patricia's luggage had become travel-worn from a month-long trip to Peru. But the gift transcended practicality.
"The luggage was really a strong indication that we were going to be sharing many journeys together in the future," Patricia says.
That prediction panned out — Eric ultimately proposed to Patricia atop the Eiffel Tower in Paris, and the two were married in 2012 while vacationing in Jamaica.
"I have always loved new experiences, and I couldn't ask for more than being able to visit with people from different backgrounds while enjoying some of the magnificent sights this world has to offer," Patricia, 58, says. "Flying over the Nazca Lines in Peru, watching a black bear pull a salmon out of a river in Alaska, or being able to play with squirrel monkeys in the Dominican Republic — those are just a few favorite moments from traveling that stand out."
The couple's jet-setting lifestyle came to a temporary halt in 2019 when Patricia was diagnosed with younger-onset Alzheimer's at age 54. Working in business development for memory care communities, Patricia noticed that she was experiencing many of the cognitive issues she saw in the community’s residents and visited a doctor.
Patricia decided that she couldn't let Alzheimer's keep her from traveling. Since then, she has visited cities across the United States and multiple Caribbean Islands. Although the disease forced her to retire early, she's used the free time to take more trips.
"My passion for travel was previously only limited by my ability to have the time to enjoy it. In that sense, Alzheimer's and my early retirement have given me the opportunity to spend more time traveling," Patricia says. "I'm certainly not going to allow myself to spend my days in front of the TV when I could be making the most of my life."
The disease has begun to impact Patricia's ability to navigate airports and new places, so she's shifted to taking cruises and visiting destination resorts. Eric takes the lead on planning trips.
Patricia says continuing to travel is essential for staying positive as she fights the disease.
"I had no choice as to whether I would get Alzheimer's, but I do have a choice in how I live my life today. Travel and time with friends are things that I need to keep me energized," Patricia says.
Eric's most recent gift to Patricia was a world map and a box of pushpins, so they can mark the countries they have visited and chart out their next destination.
"It's been a fun way to help recall our many trips," Patricia says.
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