Jack McDonald is not one to talk about his bad days. A self-proclaimed optimist, the 68-year-old Parkinson's disease patient instead channels his energy into adding more good days to the tally.
So when he had to battle against his own shaking, slowness, stiffening and inconsistency to get through simple activities like dinner and a movie, he started looking for answers.
He did not have to look far. Neurologist Rajesh Pahwa, MD, director of the Parkinson's Disease and Movement Disorder Center at The University of Kansas Health System, provided the answers Jack needed. Dr. Pahwa recommended that Jack undergo deep brain stimulation – leading-edge brain surgery that could bring him relief.
Deep brain stimulation, or DBS, is a highly specialized treatment pioneered at The University of Kansas Health System to help patients with Parkinson's disease and other movement disorders. It's not a cure but has the potential to relieve symptoms and improve quality of life.
But it is brain surgery. So Jack was more than a little hesitant.
"Brain surgery is something nobody wants to go through," Jack says. "But you stop and consider the alternative – and there aren't many right now – and it is by far the best option."
During DBS, electrodes implanted in the brain are connected to electronic neurostimulators. These block or alter brain signals that cause the disabling symptoms of Parkinson's disease and conditions like dystonia and essential tremor. Patients may regain the ability to dress, eat and walk without assistance. Some may be able to continue working or reduce their medications.
From the time of his diagnosis in 2001, Jack placed great confidence in Dr. Pahwa and the hospital's Parkinson's team. And he researched the procedure so he would know what he was facing.
He ordered books, searched the Internet and educated himself so he could talk to friends and family about the procedure. This came in handy when his 4 grandkids began asking "Poppo" about his impending operation.
"They had some humorous questions like, 'Will they take the top of your head off to do surgery?,' and 'Will you look like Frankenstein?'," Jack says. "In searching for some basic answers, I realized there were not any books out there explaining DBS in a basic way."
It just so happened that Jack knew a little about creating a book. From 1975 to 2005, he owned his own graphic design company. He put his expertise to work, authoring and illustrating a children's book about DBS titled Poppo's Electric Brain.
"Their questions showed me how confusing the procedure could be to someone who sees a friend or family member go through it," he says.
A Parkinson's breakthrough
Not all Parkinson's patients are eligible for DBS, but it has been a breakthrough for many. The procedure is most helpful for those who have lived with the condition for a decade or so and whose symptoms are no longer adequately controlled by medications, notes Dr. Pahwa.
"As Parkinson's disease advances, medications do not provide constant improvement of symptoms throughout the day," he says. "So every time a patient takes a dose of medication, they may have improvement in symptoms for 2 or 3 hours, or even only an hour. They may need to take frequent doses throughout the day and still be on a roller coaster of highs and lows. DBS evens the roller coaster these patients are on."
Jack's disease had progressed to a point where he was taking about 15 pills a day and finding limited relief. He also experienced a common side effect of the medications: dyskinesia, or involuntary movements throughout his body.
After surgery, Jack experienced significant reduction in many of his Parkinson's disease symptoms and reduced his medication to about 3 pills a day.
DBS is not advised for patients whose symptoms have not been helped by medication or those who have begun to experience dementia.
"The best we can do with surgery is to duplicate what the medications can do, except provide more continuity," says Dr. Pahwa. "If the medication cannot improve their symptoms, then surgery is not going to."