They Don’t Know What They Don’t Know: Justin & Ashley Remus’ Story | Caregivers Living With Parkinson’s

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Ashley and Justin Remus live in New Ulm, Minnesota, a farming community about 100 miles southwest of Minneapolis. They’re keenly aware of the lack of information and awareness about Parkinson’s disease (PD) in small towns and rural areas. In fact, they lived this lack when Justin’s grandfather was diagnosed with Lewy Body, a variation of PD, in 2007 and passed away in 2011.

“It took three to four years for my grandfather to be properly diagnosed,” Justin said. “When our family took him to his primary physician and explained what was going on, the physician believed my grandfather was just showing the normal signs of aging. Ashley and I knew something else was going on. Ashley is an occupational therapist and she knew enough to keep pushing for answers. Once the right information was brought to the physician, he was able to refer us to a neurologist, who gave us the diagnosis of Parkinson’s disease.  We know that the misdiagnosis wasn’t the physician’s fault. The lack of awareness of the signs and symptoms of PD makes it difficult for families and doctors to make the correct diagnosis.”

Justin was very involved in the care of his grandfather. For a year and a half he lived with his grandparents in order to help out, and when he and Ashley got married, they found a place to live that was only a half-mile away. “My grandfather was a very loving guy,” said Justin. “He loved deer and would spend time watching them in the backyard. Sometimes the deer were real, and sometimes they were hallucinations — but it didn’t matter. My grandfather also loved Rilee, our yellow lab. Often we would take Rilee to my grandparents so Rilee and my grandfather could just hang out together. When my grandfather was in hospice care, he would always wake up when Riley came to visit.”

Ashley was also very involved in caregiving. During the summer that she was studying occupational therapy in graduate school, she spent many hours working with Justin’s grandfather. “I was the only person he would do activities with,” she said. “I would give him some exercises to do as ‘homework.’ He would do his homework for me, but not for anyone else. That summer we became close and I have great memories of that time.”

Justin points out that one of the main things that caregivers need when PD strikes is simple, basic knowledge of the disease. “Families have a hard time dealing with the progression of PD symptoms,” he said. “It was heartbreaking for me to see my grandfather’s decline and not know what to do. Thankfully, I had Ashley to explain the stages of PD and to help me understand its progression.

“Rural areas present additional challenges to diagnosing and living with PD,” he adds.  “PD can be isolating, but it’s even more isolating when you live in the country, far from neighbors. And rural culture can be another roadblock. It’s built on being self-sufficient and not wanting to have obligations to anyone. There are additional logistical challenges when you have to drive two hours to see a specialist or to get therapies that can increase the quality of life of those living with Parkinson’s.”

PD had touched Justin and Ashley’s lives even before Justin’s grandfather was diagnosed. His great-grandmother had PD and no one knew it – it was diagnosed post-mortem. Ashley’s grandfather had PD and passed away when she was nineteen years old. Today Justin and Ashley are touching many others as they work to raise awareness of PD in rural areas. They help people know what they don’t know about PD so people and families living with PD can get the information and the support they need to live life to its fullest, as long as possible. To this end, they spend a lot of time working with the National Parkinson Foundation Minnesota (NPFM).

Justin drives a modified dirt-track car in races during the summer. His car is covered with NPFM logos and all the proceeds from his sale of tee shirts and sweat shirts go to the foundation. Last summer he raced 59 nights in eight towns in Minnesota. In each city, one night’s racing program was dedicated to raising awareness of PD. Ashley and Justin gave out materials on the disease and had a balloon release prior to the night’s feature event to honor those who lived, and those who still live, with PD. “I still tear up when I think of all those balloons floating in the sky,” said Ashley.

Justin connected with more than 50,000 people at those races. “It meant a lot to me,” he said, “when a woman came down from the stands and told us that she had just been diagnosed with PD. She said, ‘It’s good to know people are working on raising awareness.’

“The signs and symptoms of cancer are pretty well known; we need to do more to educate everyone about the signs and symptoms of PD,” said Justin. “The sooner someone is diagnosed, the sooner he or she can get help and information, like the importance of exercise and staying active in other ways. It also needs to be shared that once a person is diagnosed with PD, his or her life doesn’t end. It’s the start of a new journey.”

Written by Susan Gangsei, author of The Light in the Middle of the Tunnel: Harrowing but Hopeful Stories of Parkinson’s Family Caregivers and Stuck With It, Not In It: Redefining Life With Parkinson’s Disease

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