As doctors use brain imaging technology to determine the ideal placement of electrodes in Paul Schroder’s brain, Paul cracks jokes and sings to pass the time.
Once the ideal location is found in the subthalamic nucleus, a tiny almond-shaped area near the brain stem underneath the thalamus, the doctors carefully weave the thin wire electrodes through a quarter-inch hole in Paul’s skull, connecting them to a wire that runs down his neck and shoulder and connects with a small, battery-operated neurostimulator inserted under the skin in his chest.
When the procedure is complete, the results are nothing less than miraculous. Paul experiences something he hasn’t felt in years—a freedom from the debilitating symptoms of Parkinson’s disease.
“Deep Brain Stimulation (DBS) allowed me to regain the ability to do some of the things that living for ten years with Parkinson’s disease had made very difficult, if not impossible,” says the 48-year-old Colorado resident. “One of the first notable changes was the smile on my face instead of a blank stare.”
After the surgery, Paul was also able to reduce his medication from 28 pills every day to just 12, drive his car, and once again enjoy fly-fishing.
Paul's History with Parkinson's
Paul was first diagnosed with Parkinson’s disease when he was just 35 after noticing difficulty moving his left arm. First misdiagnosed with cerebral palsy that had gone undetected, Paul received a definitive diagnosis after responding positively to Sinemet, the most commonly prescribed medication used for treating the symptoms of Parkinson’s disease, particularly the slowed movement and rigidity.
Paul says his life went along pretty normally other than his “stubborn left arm” for the first few years. Then he noticed his left shoe wearing out because he wasn’t lifting his foot up and found himself freezing in doorways. By the time Paul was 45, he was taking between 24 and 28 pills a day.
“The disease had pretty much stolen my life,” he says. “I had to quit working and started receiving Social Security disability.” He also got satin sheets and pajamas to help move himself around in bed.
Getting Approval for Deep Brain Stimulation
In 2003, Paul was identified as a good candidate for the relatively new DBS, which was considered a last resort for people whose symptoms could not be controlled by medication.
Generally, the risks of bleeding in the brain, stroke, and infection secondary to DBS were considered more dangerous than the symptoms—tremor, rigidity, stiffness, slowed movement, and walking problems—of Parkinson’s disease.
Benefits of Deep Brain Stimulation
A neurostimulator, similar to a pacemaker, delivers electrical stimulation to targeted areas in the brain that control movement, blocking the abnormal nerve signals that cause tremor and other symptoms. Paul can adjust the amount of stimulation with a hand-controlled device to fine-tune the effects.
One of the biggest benefits of DBS is that Paul can reduce the dosages of medications, which themselves cause many of the symptoms such as involuntary trembling. Since DBS does not damage healthy brain tissue, if more promising treatments develop in the future, the procedure can be reversed, something that gives Paul hope for the future.
Post-Surgery Side Effects
Less than two years after Paul’s first surgery, the neurostimulator had to be removed because of an infection that developed near the wires in his neck. Paul’s body again became a prison. Since his second DBS surgery in 2007, Paul’s symptoms and need for medication have again improved, but not as profoundly as after the first surgery. Despite the roller coaster journey of surgery, recovery, infection, and surgery again, Paul considers DBS a success.
“I wouldn’t trade the two years of relief I had for anything,” he says.
Paul’s journey with Parkinson’s disease and DBS, including close-up footage of the surgery, is covered in the award-winning documentary film, Shaken: a Journey into the Mind of a Parkinson’s Patient, available through Lila Productions.
Producer/director Deborah Fryer, who created the film after realizing how few people understand the disease, is turning the documentary into a full-length feature for PBS that will include Paul’s second surgery and stories of many other Parkinson’s patients. For screening information, check out lilafilms.com.
For more information:
Shaken: a Journey into the Mind of a Parkinson’s Patient
Photos copyright Lila Films
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