When the shaking stops

Marina man gets relief from Parkinson's disease

When Robert Kaufman picks up his cell phone these days, he can punch the buttons and hold the device to his ear as quickly as easily as an overconnected teenager.

But it wasn't always that way. Two months ago, the 51-year-old "Snap-On-Tools" dealer could barely use the phone well enough to talk to his customers. Whenever he tried to hold the receiver next to his head, his left arm would shake violently enough to box his own ear.

"It was like having a muscle ache all day. But almost worse was having a nervous feeling all the time," said Kaufman, a resident of Marina.

Kaufman's tremors were symptoms of Parkinson's disease, a nerve disorder that affects up to 1.5 million Americans. During the course of the disease, brain cells that help regulate muscle contraction and movement gradually die, resulting in symptoms that can include muscle tremors, a masklike facial expression, poor balance and difficulty walking. While drugs can reduce the symptoms of Parkinson's, there is no cure. The cause of the disease is generally unknown, although it can be genetic or caused by toxins.

Since his diagnosis in 1996, Kaufman watched his symptoms worsen from merely irritating spasms to uncontrollable shaking.

"It was definitely affecting my quality of life," Kaufman says. By winter of 1999, his tremors had grown so severe that he couldn't hold a full cup of coffee without sloshing half onto the floor. "People used to ask me how I was doing. I'd say, 'I'm just shaking right along.'"

Although Kaufman had been taking medication for his symptoms all along, the strong doses he needed to stay tremor-free made him too nauseous to function. In desperation, Kaufman's neurologist offered him a last-ditch resort: brain surgery.

Doctors could open up his skull and destroy the thalamus, the hyperactive clump of brain cells responsible for his tremors. This is the type of surgery that actor Michael J. Fox had. Or they could install a pacemaking device into his brain to quell the electrical storm generated by the cells. The first operation, called a thalamotomy, would take about 2.5 hours and be irreversible.The effects of the second operation, while equally effective at stopping tremor, could be reversed any time by switching the device off. Kaufman would also have to be awake during the majority of the 15-hour operation.

Out of optimism, Kaufman opted for the pacemaker.

"If in five or 10 years they come up with a cure, we can say we have that option," Kaufman says.

On Jan. 26, Kaufman checked into Kaiser Permanente Medical Center Sacramento with his head already shaved. Hospital staff awoke him the next day at 5 a.m. for the operation. Kaiser neurosurgeon Conrad Pappas bolted a targeting frame to Kaufman's head, and took magnetic resonance imaging scans of his skill wearing the frame.

"The different points on the frame show up outside the skull on the images, and are used as targeting points to program the trajectory to take when probing the brain," says Vicki Wheelock, a neurologist on the surgical team.

In the operating room, doctors bolted Kaufman's head frame to the operating table and fired up the bone drill. The noise, Kaufman says, "sounds like a dentist's drill, only louder because it's closer to your ear."

The surgeons then began sliding small electrode probes into Kaufman's exposed brain, checking their progress against the MRI scans and the voltage readouts that would ensure they were on the correct rack. Because the brain contains no pain receptors, Kaufman couldn't feel a thing.

With the wire connecting his brain to the electrical instruments, Kaufman said, "it felt like being Frankenstein's monster for awhile."

As the surgeons neared their target, a pea-size structure about three inches below the surface of the brain, they began trying to determine which cells were responsible for the tremors in his arm.

"They'd give me a jolt (of electricity) through the probe and say, 'what was that? I'd say, 'that was my butt' And they'd move the probe over, jolt me again, and I'd say, 'that was my thigh.'" The sensation, Kaufman said, was like having a limb fall asleep.

When the surgeons located the cells responsible for Kaufman's left arm tremors, they inserted the spaghetti-sized electrode wires into his brain and turned them on.

"We have the patient pour water or write their name, things t hat typically bring out the tremor, and make sure the tremor stops," Wheelock says.

Once the electrode was properly positioned, doctors put Kaufman under general anesthesia and slid the lead wires beneath the skin of his scalp, down the back of his neck, and toward his pectoral muscles. Just above the collarbone and below the skin, they inserted the roughly beeper-sized pacemaker that generates electrical pulses. The unit can be programmed using radio waves controlled by a computer. Its batteries will last for about five years, when the entire unit is replaced. The patient can turn the unit on and off with a magnet.

Kaufman left the hospital two days later, and went out to dinner with his family Saturday night. For the first time in too long, he stood at the bar holding a glass of wine steady in his left hand. "As my friends passed by, they kept saying, 'show off! show off!'"

Kaufman found the surgery strangely exhilarating. "Afterward, I didn't sleep for three days I was so pumped," he said. "You get out there, and you have a little bit of an attitude problem. There ain't nothing you can't do. I used to snivel about taking an MRI test because it felt like I was being buried alive. That's a drop in the bucket compared to this."

The surgery won't halt the progressive loss of balance and slowness of movement that accompany Parkinson's, and Kaufman still gets minor tremors when under stress. But a small bump on the temple, a scratch on the breast and a temporary crew cut are a small price to pay for a steady grip on life.

--Kathleen M. Wong