Mohnton resident Bobby Krause will always remember June 9, 2022. It was the first day in six years he did nothing.
The first four decades of his life were filled with physical activity: He played basketball at Alvernia University, coached his sons in youth sports leagues, traveled with his wife and ran a sales office in Wyomissing for a fitness equipment company.
But all that changed when he started experiencing what he thought was a nervous tick in his left arm.
“Never did it cross my mind that it was young onset Parkinson’s disease, which was the diagnosis that I officially received at the age of 42,” says Krause, 51.
The six years following the diagnosis found Krause becoming introverted, battling depression, anxiety and embarrassment. However, his neurologist at the University of Pennsylvania was involved with clinical trials for Focused Ultrasound, a procedure that uses sound waves to treat tissue in the body. Krause was scheduled for the treatment after it was approved by the FDA.
“Driving down to Philadelphia that morning was a quiet ride full of angst and anxiety, wondering if the procedure would achieve the results that I had so hoped for, wondering how it would feel while I’m in the MRI machine having ablation (tissue removal) done to my brain,” he recalls.
During the procedure, the patient’s brain is warmed up at the location identified through the MRI. This was done five times to make sure the area responsible for triggering his tremors was identified. In between each session, Krause performed various tests with the medical team to determine the level of improvement.
“Being awake and seeing those physical manifestations occur was surreal,” he says. “I had such bad dystonia in my left foot that my toes curled underneath my feet, and on the second pass I could see and feel my toes unfurl in real time. On the fourth pass, the debilitating tremors that I had for almost 10 years dissipated, and I finally became still. I cried uncontrollably knowing that my tremors were gone and I was going to be able to return to some level of normalcy.”
It took a few weeks for side effects such as imbalance to clear up, but the tremor relief was immediate.
“I could hold a cup of water without spilling, button a shirt, hold my wife’s hand,” he says. “But most importantly, I regained confidence in being around others. I wasn’t broken anymore.”
Krause founded Be Still in May 2024 after learning that lack of awareness and financial limitations prevented most of the millions of Americans suffering from essential tremors and Parkinson’s disease from receiving Focused Ultrasound. According to Krause, 97 percent of tremor patients who would qualify for the procedure are not aware of it or are not participating due to the cost.
Be Still’s goals include paying for the procedure for those without insurance coverage; covering deductibles and travel accommodations; and giving hope by boosting awareness, visibility and education. The nonprofit aims to aid more than 50 recipients in 2025.
To raise awareness, Krause offers inperson and virtual presentations locally and nationally at places like Princeton University and Capitol Hill. And he’s getting assistance with his advocacy. The nonprofit created Team Triumph, an advocacy network that allows potential candidates of Focused Ultrasound to ask questions from peers who had the procedure.
“Because of the high success rate and lifechanging results,” he says, “many members simply want to share with everyone and anyone who will listen.”