Running for a Cure

Pictured, left to right, Carley Hagemann, Zach Hagemann, Hudson Barlow, Brandon Barlow, Kelsey Barlow, Carson Barlow, Derrek Barlow, Brittany Barlow, and Ann Barlow. Photo submitted

AMBOY — What makes each human being different and unique are our beliefs, characteristics, and the path that we end up on. Often times the road is not of our choosing, yet how we handle the triumphs and obstacles through the journey of life defines who we are. 

Lifelong Amboy resident Derrek Barlow is a shining example of someone who has encountered a challenge but fights on while also helping to find a cure for a debilitating disease. Barlow has always been known as a hard worker, most recently as a heavy equipment operator. One day while at work he confided to his wife, Ann, that he was having some balancing issues that he never previously experienced. With Ann’s coaxing, he decided to see a doctor. He was first diagnosed with multiple sclerosis (MS). After several medications, including steroids and a blood transfusion, he showed no signs of improvement and actually was getting progressively worse. Daughter Carley, (Hagemann) one of Barlow’s three children helped make the decision to find out exactly what was going on. 

“We made the initial and subsequent trips to the Mayo clinic in Rochester, Minn., in February of 2021 to see a MS specialist,” she said. “This doctor immediately said that it wasn’t MS and had us see another doctor who diagnosed dad with Corticobasal Degeneration (CBD).”

CBD is a rare neurodegenerative disease affecting the brain and the signals that it sends to the body. It is characterized by eventual difficulties with movement and cognition. Diagnosis is difficult as symptoms are often similar to those of Parkinson’s, Progressive Supranuclear Palsy (PSP) and dementia with Lewy bodies, which are protein deposits that develop in nerve cells of the brain. This aggressive disease normally affects older folks in their 70 or 80s making Barlow’s case rare since he is 54 years old. 

According to family and friends, Barlow isn’t the kind of person to let anyone know how he’s actually feeling and likes to keep things light by joking around. 

“He’s so positive and continues to push through,” said Carley. “He walks with a cane but says that we all need to keep living our lives as we go along.”

Currently, there is no cure for the disease. Barlow has been very willing to do his part for research, agreeing to deep brain stimulation where doctors at Mayo did a procedure to remove some brain tissue for research. He will also be participating in a sleep study, and will donate his brain for future investigation and exploration.  

As you can imagine, trips to Mayo, medications and getting his house wheelchair accessible, along with eventually needing a 24 hour nurse is expensive. Carley, with the help of a great support group of family and friends are holding the inaugural 5K “Race to Beat PSP,” on Saturday May 20. The main objective of this fundraising event is to bring awareness to this disease. 

“We want individuals that have been diagnosed along with their families to know that you aren’t alone in your fight,” said Carley. “We want to educate as many people as possible and possibly bring those afflicted together to share stories and provide support.” 

As of this writing, 62 people have signed up for the event. Carley’s hope is that they get 100 participants. 

“The citizens of Amboy have been so supportive with their words of encouragement and donations offered,” she shared. “Run, walk, jog, whatever it takes to be a part of a fun day.” Barlow will be in attendance and Carley has a wish. 

“My vision is to walk a short distance with my father and family to the finish line to show our appreciation for everyone’s continued support,” she said.

Registration is $25 per person. Race time is 8 a.m., and will start at 11 East Hawley Street. All runners get a t-shirt and a gift card from Meusel’s Dairy Delite. For more information visit Carley Hagemann on Facebook. All proceeds will go to CurePSP organization.