By Briana Vannozzi
You can’t see tremors in Paul Detlefsen’s hands now, but a decade ago, the outlook for this 43-year-old Parkinson’s disease patient looked a lot different.
“My symptoms were mostly in the right arm, sever tremors,” he said.
Detlefsen underwent what’s called deep brain stimulation surgery.
We first showed you the procedure two years ago, on another patient at JFK Neuroscience Institute. Surgically implanted electrodes on the brain send impulses that block signals causing tremors and involuntary movements. The 20-year-old procedure is wildly successful, with just one downfall. Patients were given a bulky remote control generator to manage the system. It was tricky to use alone and required in-office appointments for adjustments. Until now — where brain waves meet touch pad.
“So we convert from the older system to an iPod where they can remotely go up and down on their parameters even at home,” said neurosurgeon Dr. Asif Bashir.
Detlefsen is the first patient in the U.S. to marry the old system to new, managing his DBS from an iPod Touch.
“Specifically without getting too technical, they can adjust the frequency, amplitude, pulse width, so there’s some scientific electronic features that they can adjust to help their symptoms,” said Dr. Phillip Hannah, associate professor of neurology movement disorders at JFK Medical Center.
“It’s just so simple now. You go to the app store, you load the app and it’s right on the screen. Everything you need to know,” Detlefsen said.
And that gives patients both flexibility and control. The results are instant. Patients can turn the system on or off, adjust settings and anyone around them is none the wiser.
“We can program the device with thousands of different settings and we give the patients certain parameter where they can do modest adjustments themselves so they have some control and power over their condition in the sense that they can make some fine tuning and some adjustments on their own based on the symptoms they have,” Hannah said.
“It ain’t a cure, but compared to some side effects with medications, I’d go with this,” Detlefsen said.
Medications often left patients with severe side effects. The iPod means back to life, back to work, back to friends.
“From then on, I’m just so grateful,” Detlefsen said.
The system, much like deep brain stimulation surgery itself, is not a cure for Parkinson’s disease. But it means for patients like Detlefsen, who have had an early onset and many years of life ahead, the promise for a better quality of life.