Winthrop coach hopes operation stills Parkinson’s symptoms

Buffets are the worst for Winthrop women’s basketball coach Kevin Cook.

In a buffet line, balancing a plate in one hand and spooning up food with the other, the 54-year-old Ohio native is unable to hide the quaking tremors that rattle his hands. Plane rides are also difficult, especially for the neighboring passenger, and it’s nearly impossible for Cook to sleep. Since the illness was diagnosed in 2007, Parkinson’s disease has become a dominating blight on Cook’s life.

In an effort to stop the tremors, Cook decided in November – after considerable discussion with his wife of four years, Francine – to undergo an operation called deep brain stimulation. On April 1, Cook’s head was immobilized and four holes were drilled into his skull. He was completely conscious as doctors implanted an electrode in the top left half of his brain.

Step two of the process was completed last Wednesday. A hair-thin fiber extension was inserted under his skin, attached to the electrode and run down his neck and under the collarbone. There, it was attached to what’s called an IPG, an implantable pulse generator. That’s essentially a pacemaker that will provide electricity to the electrode in Cook’s brain. The IPG sits beneath a brand new three-inch diagonal scar on the left side of his chest.

On April 28, Cook will be “turned on,” as he calls it. A remote control will initiate the IPG. And Cook’s tremors should stop.

“Getting here to the 28th is gonna be a long wait,” said the longtime basketball coach last week.

Cook’s Parkinson’s symptoms surfaced before he was officially diagnosed in 2007. While the tremors are the most noticeable aspect of the illness, there are so many other leech-like symptoms.

Sitting on a leather sofa next to his mother, Ruthie, Cook said that rigidity and soreness are two of the worst. Additionally, he has pain in his left hip that never seems to go away, and he usually gets two to three hours of sleep per night. That’s bad even for a college basketball coach.

Parkinson’s, Cook said, “is always on the attack.”

Cook, who has coached women’s basketball all over the world and at all levels, was able to partially stave off the onset of Parkinson’s when he lived in Washington D.C. – where he met and married Francine – by participating in hot yoga. The steamy, hour-long sessions unwound his body and mind, and stress would exit as buckets of sweat.

But as Cook’s symptoms have intensified he hasn’t been able to exercise as much. Fond of walking to work at the Winthrop Coliseum from home, Cook wasn’t able to do so as often this past season when his condition worsened. His medications also stopped working as effectively.

And of course, there were the tremors.

“It’s just a horror, anything in public that you might have to hold a plate and dish with the other hand, and carry food,” said Cook, his feet hopping uncontrollably up and down on the carpeted floor as he spoke. “I have to strategize where I want to sit on a plane because you don’t want to be a nuisance to other passengers. And so it just disrupts what would be your normal pattern in life.”

The tremors are undeniably the worst part of Parkinson’s because they rob Cook of his privacy. He forfeits the option to tell somebody about his illness because his trembling hands give it away. Francine said that bothered him more than anything else.

Cook’s desperation peaked as the 2014-15 women’s basketball season was getting underway. During timeouts, someone else in the team’s huddle would hold the dry erase board while he tried to scribble plays with a marker.

“I think you could tell last year the disease was progressing and I think that’s when we started to rethink about maybe getting the surgery before it started to really attack his quality of life,” said Francine.

In November Cook decided to have the operation.

“It took me a year and a half to come to this decision,” he said. “I wasn’t so certain. Finally, it came to where the rewards outweighed the risks. And of course there are risks in anything you do and that makes you nervous. Or, it made me nervous.”

Parkinson’s disease stems from a lack of the chemical dopamine caused by the degradation of neurons in the brain. Neurons – nerve cells – need dopamine to transmit signals to other nerves. Parkinson’s, attention deficit disorder, schizophrenia and even drug addictions are all conditions that arise from improper levels of dopamine in the brain.

Deep brain stimulation tries to fix the problem by blocking the abnormal signals that Parkinson’s causes the brain to transmit. The National Institute of Health’s fact sheet on deep brain stimulation clarifies that the operation doesn’t slow neurodegeneration; it just works around it by changing the brain’s firing pattern.

To be clear: Parkinson’s has no cure.

But the operation “addresses the tremor, it also addresses rigidity, which is that stiffness, and also the Bradykinesia, which is the slowness of movement,” said Dr. Danielle Englert, Cook’s neurologist in Charlotte.

To insert the electrode, which is a spaghetti-thin fiber housed in a clip, the surgeon drilled four holes in the corners of Cook’s skull and two C-shaped incisions. The holes and the incisions were closed with staples.

During the operation, Cook felt the pressure – and listened to the whrrrr of the small hand-held drill – as the surgeon bore into his skull.

“I was fully aware of everything that was happening in the room,” he said.

Englert had already mapped out Cook’s brain prior to the operation using a high-powered MRI machine. As Cook sat in the operating chair, Englert and the surgeon assessed which neurons were in good shape so they could pick one as the home for the electrode. They then placed the stimulating electrode in position and turned it on to see if it would work.

“I had to answer questions for them,” Cook said. “They asked me to say the days of the week. You say them over and over and I think they’re messing with the volts and the generator because they got me to where I was slurring and then they said, ‘say them again,’ and I was clear. He said, ‘did that sound okay to you?’ and I said, ‘yeah, keep it right there.’”

Englert said the results from last week’s mid-procedure testing were very encouraging. Cook’s tremor and rigidity decreased by as much as 80 percent, giving him and his doctors hope that the operation will be a success once it’s fully completed in late April. Cook said he hopes to “get 15 to 20 years out of it,” which would see him into his 70s, and probably into retirement.

“I wasn’t as comfortable (coaching) this year,” said Cook. “I think I was still effective, but I’m looking forward to being more effective next year.”

Many of Cook’s sentences ended like that, a hopeful glance to the future. He has a quiet force that shines through, tremors-be-damned.

After the first part of the surgery when the electrode was implanted, Cook was taken to the recovery room. The first thing he asked Francine for after the operation was a piece of chocolate mousse pie and a milkshake.

“We spent the night in the hospital and then when we were waiting to discharge, he was so happy, he was dancing around the room. He has a ton of energy,” Francine said. “It just showed how happy he was to be going through this.”

Francine was studying a map at the National Mall in Washington, D.C., in 2010 when she first met Cook. He sidled up to her and sparked a conversation. They spent the rest of the day together and haven’t been apart since.

“I’ve got to credit Francine, because not many people would want to be with a ‘Park Guy,’” said Cook. “I’m really thankful to her.”

Francine remembers that one of the first things Cook told her was that he had Parkinson’s disease. She’s never know him any other way.

“It’s a part of him, for me,” she said.

But thanks to the electrode imbedded in Cook’s brain, the tremors don’t have to be.

“He will still have Parkinson’s, but he doesn’t have to show it, he doesn’t have to wear it on his sleeve anymore,” said Francine. “And he’ll have more flexibility, more range of movement, and I’m sure it will help him with his demonstration on the court during practice with his players. He’s got a pretty good spirit already, so I’m just sure it’s gonna take one thing off his mind so that he can concentrate on the things he wants to think about.”

Cook has never talked much publicly about his Parkinson’s. But after the operation he felt ready to tell his story, regardless of the ending.

“If it’s something that works, I want to share it with other people, that they not be afraid,” he said. “You don’t have to wait a year and a half to come to this type of decision.”

If it does succeed, Cook will be glad to return his sole attentions to his family and his basketball team. The Winthrop women graduate just two seniors from a team that won 17 games last season, and two Big South All-Conference first team selections are among the many players returning.

Plus, Cook and his staff have a recruit visiting campus on May 1. Maybe they’ll take the prospective Winthrop Eagle and her family to a buffet afterward?

“I’m really looking forward to being activated on the 28th,” Cook said, smiling.

This story was originally published April 11, 2015 at 5:28 PM with the headline "Winthrop coach hopes operation stills Parkinson’s symptoms."