34
Deep Brain Stimulation and Parkinson’ s
Living His Life Again
At 43, seven years after being diagnosed with Parkinson’ s disease, Richie Rothenberg, an emeritus member of The Michael J. Fox Foundation’ s Patient Council, felt encumbered by his body. He often found himself freezing without warning while powerful dyskinesias took over his body.“ It was a very difficult time,” he remembers. On his doctor’ s recommendation, Richie decided to undergo DBS in December 2010.
Unfortunately, after surgery he contracted a staph infection— a complication experienced by a small percentage of people who undergo any surgery— and spent New Year’ s Eve that year getting the whole apparatus taken out.“ I had to wait another six weeks before I could be ready to do it again,” he recounts. The good news? He had done so well in the first surgery that doctors were able to perform the operation a second time and implant the battery in a single procedure.
The results were dramatic. Like many people, Richie experienced an immediate benefit, even before doctors had programmed his device. Overnight, he went from being unable to walk or drive or sit still, to walking into a room with no apparent symptoms of PD. While it took two years of fine-tuning the programming to achieve optimal settings, Richie was able to ski and go bowling soon after surgery.“ The body settles down, the brain, the excitement settles down,” he explains.“ For a couple of years I went in every month or so for a different tweaking of the DBS settings.” He now sees his doctor for regular visits to maintain the pacemaker-like DBS device. The advances in technology over the past 14 years have been important, Richie says.“ The batteries last longer, three to five years, and recharging them is easier.”
A year and a half after his DBS operation, Richie married his high school sweetheart, Julie, and they had twin girls. They became a family of six, including Richie’ s two children from a
More than a decade after he had DBS, Richie Rothenberg and his wife Julie are enjoying the ongoing benefits of the procedure.
previous marriage. He is open with them about his Parkinson’ s, and the twins“ are curious about the science of the DBS,” Richie says.“ They’ re great helps. Parkinson’ s gives them a different outlook on helping people.”
Now, more than a decade later, Julie and Richie enjoy the ongoing benefits of his DBS decision.“ It’ s like a miracle, living my life again, playing with my kids, going out to eat, taking vacation— to do what I want to do,” Richie says. He also recognizes that if he doesn’ t eat a healthy diet or exercise daily—“ take personal responsibility”— he loses that miracle effect. Julie helps focus him on what he needs to do.“ Rigorous exercise reduces symptoms and slows the advance of the disease,” she adds.“ It’ s as important as the medications and should be part of the prescription for DBS.”
Richie’ s gratitude has only grown over the years since his DBS.“ Parkinson’ s is the best thing that ever happened to me,” he says.“ It changed my life in a profound way that made it much more meaningful, much more appreciative and filled with love.”