Surgery helps block Parkinson’s effects

Davis makes her way upstairs from her basement recently in her Lawrence home. When Linda and her husband Bob built their home in 2001 they installed a motorized chair to make the home universally accessible and to aid Linda on difficult days.

Linda Davis has dealt with the difficulties of Parkinson's disease for the past 11 years. Davis, of Lawrence, has undergone recent surgeries that placed pacemaker-like devices that emit electrical stimulation into her brain.

A flip through Linda Davis’ checkbook gives a glimpse of her recent ups and downs with Parkinson’s disease.

Starting in May, Davis underwent a series of four surgeries – two of them in her brain – in hopes of delaying the progression of Parkinson’s.

Judging from the handwriting in her checkbook – which has transformed in the past three months from a messy scrawl to a neat cursive – the surgery worked.

Though the handwriting is not quite as clear as it was 11 years ago before Davis was diagnosed with Parkinson’s – a disease that affects a person’s control of movements – it’s at least legible.

Of course, the improvements have gone beyond the checkbook. Davis now is able to spend nights alone and can resume painting, one of her favorite crafts.

“She’s got her life back,” her sister Pat Michaelis said.

The surgical procedures, known as deep brain stimulation, implanted electrodes into Davis’ brain that emit electrical pulses to interfere with abnormal neural activity. The device, similar to a pacemaker, runs off battery packs that were placed in Davis’ chest.

The procedure received Food and Drug Administration approval in 2002 as a treatment for Parkinson’s. The brain surgery also can be used to treat people with other diseases that cause uncontrolled movements, such as tremors.

For the past few years, as her Parkinson’s disease worsened, Davis teetered between being unable to stop moving when her medicine was working and not being able to move at all when the medicine wore off.

The surgery offers the hope of reducing the amount of medicine Davis needs.

Davis, who is 59 and a native of Russell, has lived in Lawrence for more than two decades. Her husband is sports announcer Bob Davis.

The diagnosis

June 26, 1996. It’s the date Linda Davis was diagnosed with Parkinson’s.

She and Bob had just returned from a trip to New York to celebrate their 25th wedding anniversary. They dubbed the vacation the “Halls and Falls” tour – a visit to Niagara Falls and the national baseball and basketball halls of fame.

Soon after the trip, Linda Davis went to see a local neurologist.

She was tired, had a tremor in her left hand and didn’t swing both of her arms as she walked. Within 10 minutes of the visit, the neurologist told her the problem was Parkinson’s disease.

“It wasn’t much of a blow, because I wasn’t aware of what Parkinson’s was,” she said. Soon she realized it would be a disease that is certainly life-changing, but not life-threatening.

Parkinson’s disease is a disorder of the brain’s nervous system and progressively intensifies, resulting in tremors, rigidity in some muscles and difficulty with walking, movement and coordination. The disease is caused by the death of nerve cells in a part of the brain that controls movement.

Parkinson’s disease does not have a cure, but medicines can treat the symptoms. However, those medicines have severe side effects that eventually disrupt daily life.

For Davis – as her Parkinson’s has advanced over 11 years – more and more medicine was needed.

And with the increased dosage came dyskinesias, meaning Davis was unable to sit still.

“It was really extreme,” Michaelis said. “In my mind, I equated it almost to a fish out of water, flopping around. She couldn’t control movements.”

Also, there was an increase in the times when – suddenly – the medicine would stop working. In an instant, Davis would be unable to move. She could freeze up while walking from the living room to the kitchen sink or while sitting in her chair.

Because of the fear that an “off-time” could come without warning, Davis said, she couldn’t stay by herself on nights when her husband was out of town.

The disease and the medication also made it difficult to do household chores, such as cooking dinner, and enjoy some of her favorite crafts.

“Daily life got to be a struggle,” Michaelis said.

Deep brain stimulation

Dr. Jules Nazzaro, the neurosurgeon at Kansas University Medical Center who performed Davis’ surgery, said deep brain stimulation won’t cure Davis’ Parkinson’s disease. But it will set it back at least five years.

“In all honesty, people don’t know the mechanism for why this works,” he said.

Nazzaro, who was recruited to KUMC last year and has extensive experience in the procedure, said he and others believe the electrodes jam or interrupt an abnormal circuit in the brain stem.

The first step in the process is picking out a well-qualified candidate, which requires hours of testing for memory loss, dementia and physical movement.

Davis fit the qualifications, partially because her Parkinson’s is so advanced that she didn’t have many treatment options left.

For more than four years, Davis had been a candidate for the surgery, but she wasn’t ready to go forward with it until last fall. Then, she waited for Nazzaro to arrive at KUMC and for a sports season that was less hectic for her family.

Despite the benefits of the procedure, deep brain stimulation surgery comes with risks – bleeding in the brain, infection, stroke and even death. Also, patients could see an onset or worsening of existing depression.

But once Davis decided to have the surgery, she didn’t worry about the risks. “My off-time increased enough that I decided to go ahead and do it,” she said.

The surgeries

At 5:30 a.m. May 8, preparations began for Davis’ first surgery. Her head was shaved and an MRI was taken of her brain.

From there, Nazzaro mapped the route the electrodes would travel through Davis’ brain.

The electrodes are on a slender coiled wire. Known as the DBS lead, the wire goes from the top of the head to the brain stem, which is the lowest part of the brain and connects to the spinal cord.

First Nazzaro drills a hole in the head and then does a trial run with a smaller-scale electrode to make sure the final one will be in the right place. The operating crew employs computer programs, a brain atlas and the MRI to help guide the electrode down the brain.

The patient must be awake to ensure the electrodes are in the exact spot and working.

Off medication, held in place with a head frame and surrounded by a crew of about a half dozen people, Davis was asked to tap her fingers or raise her hands throughout the surgery.

If the patient doesn’t respond to the mini-electrode, the surgeons make another run, repositioning the trial electrodes a millimeter at a time.

Once the right spot is hit, the real electrode is put in place.

Because patients are awake, lying flat on their back and off their medication, surgeons work under a ticking clock. For Davis, the electrodes were implanted by 2 p.m. and she was back in her hospital room. The surgery had gone smoothly.

Six days later, she had outpatient surgery to get a stopwatch-size, battery-powered pack installed in the right side of her chest. Another wire – this one insulated and running down the side of her head, behind her ear and to the front of her shoulder – connects the DBS lead to the battery pack.

Keeping track of her surgeries through a blog, Davis wrote to friends and family shortly after the second surgery, saying it felt as if she had just “run a marathon, mowed the lawn and cleaned the house top to bottom.”

On June 12, Davis returned to KU Hospital to go through the procedures all over again, only now it was for her left side.

The programming

Three weeks after Davis’ second brain surgery, nurses began programming the electrodes placed in her brain.

Through a four-day process, nurses balanced the electrical voltage traveling through the electrodes with the amount of medicine Davis should take. In the next year, that ratio will be fine-tuned.

So far, Davis has reduced the medicine she uses by 70 percent. She can remain still, and the wigglelike movements have nearly disappeared. They come back when she is stressed, tired or excited but aren’t as extreme as before.

And since the surgery, she hasn’t once had a moment where the medicine unexpectedly stopped working and she couldn’t move.

Quoting from a long list of “turtle wisdom” she has collected over the years, Davis said she has learned how to be “comfortable in your own shell,” especially while her hair is still growing out from surgery.

She couples that with “you only make progress if you stick out your neck.”