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Rewriting Life

Beating Parkinson's

Keeping the beat with a brain pacemaker.

William Bland can now hear a song just once before effortlessly strumming it on his guitar. He has the ear, and many years of musical experience.

But most of all he has control over his hands again after years of hearing a tune without being able to play it, because his fingers just wouldn’t cooperate.

About 10 years ago, Bland was diagnosed with Parkinson’s disease. The increasingly worse hand tremors, the inability to walk without shuffling, the endless medications that wear off anyway-all this he has known well.

Earlier this summer, the 58-year-old resident of Tucson, AZ, decided it was time to get more aggressive about treatment. “After diagnosis you get about ten years, and basically it’s a slippery slope from there. I’ve got too much living to do to let that happen to me,” he says.

On June 27, at the Cleveland Clinic Foundation in Ohio, Bland had a pacemaker implanted deep in his brain to control his involuntary shakes and tremors. The electrode supplies an electric current to nerve cells in an area of the brain thought to control motor function-the thalamus. Wires running down the back of Bland’s neck connect the electrode to a battery pack implanted in his chest, right under the collarbone.

Brain Pacemaker Surgery (Click image to see slide show)

Asked about the operation, during which he was kept awake so that his speech could be used as a navigational aid by the surgeons implanting the electrode, Bland says, “I was bona fidely frightened.”

The surgery was long-almost ten hours-and Bland doesn’t remember very much beyond the image of three doctors and a nurse hovering over him and “shouting down, as if through a tunnel.”

He does remember the searing pain in his back as he lay on the hospital bed with his head locked in a metal cage to hold it steady. “Imagine your skull is bolted to a big brass metal bell and there are three doctors banging on it with wrenches for three days,” he recalls.

Deanna Bland, his wife of 25 years, recounts the symptoms that led Bland to the conclusion that a brain pacemaker was his best option. He had been losing control of his body progressively, falling and hurting himself more often. Basic tasks like cooking had become difficult, or hazardous, because he would forget what he was doing and leave the stove on. In addition, the medications he was taking brought on fatigue, nausea and, in one case, hallucinations.

“Bill was seeing cats in the house where there weren’t any, or people’s faces in the bushes,” Deanna recalls.

But the last straw was that the Parkinson’s was making it impossible to play music. A guitar maker, Bland is a natural musician, playing mandolin, piano, electric bass and harmonica in addition to guitar. For many years, he played gospel tunes with his daughter Ilya, as well as folk music in a six-piece band and blues at the Unitarian church where he is an active member.

“For about ten years I couldn’t finger-pick at all,” says Bland, casually finger-picking an Amy Cassidy tune as he speaks–post-operation. After the surgery, his hands are less “goofy,” he notes. He can walk more easily, too, and there are no more hallucinations.

After the operation Bland spent five days recuperating in the hospital, followed by 10 days of cruising on Lake Erie in a 40-foot sailboat. He celebrated his 58th birthday during the cruise.

Bland’s progress will be closely monitored. He will have to visit a doctor in Arizona for periodic pacemaker tune-ups, which feel like “sticking your finger in an outlet,” he says. His pacemaker device is currently operating at 2.8 volts, but over the next few months Bland’s doctors will slowly fine-tune the setting to find the optimum voltage.

Bland will also require surgery every two years to replace the batteries in the power pack implanted in his chest. Oddly, even though he can turn the device on or off by rubbing a large magnet across his chest, he never knows if it is, in fact, on or off, because the device doesn’t indicate its status.

His doctor recommends getting a cheap transistor radio and tuning it to a station with lots of static. If the static decreases, it means the machine is off. If it becomes deafening, the pacemaker is up and running, explains Bland with a big chuckle.

For the most part, Bland is simply grateful the experience is over, and he did come away from Cleveland with more in mind than a pacemaker.

“As a result of the trip to Cleveland and sitting on Lake Erie, I’m now looking for a sailboat!”

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