Every time Winthrop women’s basketball coach Kevin Cook begins to feel sorry for himself, he thinks about those who have it worse in life.
And there are plenty. Cook was recently told about a man who had a deep brain stimulation operation to quell the symptoms of Parkinson’s Disease. The man had the surgery more than a year ago but his tremors haven’t lessened yet.
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Cook underwent the same surgery several months ago, and his tremors have lessened considerably. The success means he sleeps better, rides his bike to work again, and is no longer burdened by constant shaking.
Still, he feels for the man who has not been as fortunate.
“It just breaks your heart,” Cook said in his office Monday. “They’re working on a cure every day. There is a lot of money being distributed, and that’s our hope now, and that’s my hope. Because if this ever wears off, I’m back in the same boat and I know that.”
The deep brain stimulation operation is not a cure for Parkinson’s Disease. There is no known cure yet to stop the brake-less train that is Parkinson’s. But the maneuver has worked so far for Cook. It’s calmed his tremors markedly, cut his daily medication intake by two-thirds, and given the longtime women’s basketball coach a new outlook on the days and years to come.
“Whether it’s on borrowed time or for the length of my life, I’m gonna enjoy every day, man,” he added. “I’m gonna laugh every day. I’m gonna do the best I can every day.”
Moment of truth
Cook’s total optimism is a change from just a few months ago. After a year and a half of agonizing debate with himself and his wife, Francine, Cook decided to have the surgery, in which a pulse generator was surgically inserted in his chest and connected to a surgically-implanted electrode in his brain. A device controls the amount of stimulation in his brain, which in turn helps regulate Parkinson’s tremors.
There were a number of false starts. Maybe Cook wasn’t told or he just didn’t hear, but he thought the electrode would be turned on in one appointment. Instead, in a series of doctor visits over a couple of months, the amount of electricity in his brain was gradually dialed up.Even an eternal optimist like Cook was crestfallen when he discovered that fact at an April 28 appointment in Charlotte.
“He had to be a little patient, and it’s hard after you’ve gone through all of that,” said Francine. “I think at that point he was expressing a lot of doubt about whether or not the surgery would be a success.”
Over a month later, the tremors still had not died down.
Cook’s neurologist, Dr. Danielle Englert, was scheduled to step away from her job for maternity leave, so another appointment needed to happen soon. They met on a Monday in early June, which Cook called “the moment of truth.” Englert raised the electrode’s levels during a two-hour appointment to the third-highest notch.
Nothing changed at first, but throughout the day the tremors dissipated. Cook hosted a coaches’ clinic that night at Winthrop’s West Center.
“I was perfectly still,” he said.
Parkinson’s never tires
Eager to share his Parkinson’s experience, Cook spoke at the SAM (Society for Association Managers) Leadership Development Conference last Sunday in Greenville for a full 30 minutes, his dancing hands and legs still calm.
“I even changed the mic from my right to left hand. Amazing,” Cook said the day after.
During the speech, Cook asked the audience to raise their hands and then shake them.
“Now try doing that for five minutes,” he told the crowd. “Now try doing that for 24 hours, and you’ve got it.”
This is the crux of what makes Parkinson’s so maddening: it never takes a break.
“It drives you crazy. And yeah, you can stay busy and throw yourself into your work and do all of that,” said Cook. “But there’s only so long you can work, there’s only so much (game) tape you can watch, and then you’ve got to relax. And there’s no relaxing with Parkinson’s.”
In many cases, there isn’t much sleep either.
Puffy pillows of skin had established permanent residence under Cook’s eyes in the last couple of years, a sign of sleep’s absence from his life. And a pain medication he was taking included vivid nightmares among the side effects. But he was almost giddy to report last week that he’s been snoozing eight, nine hours a night. It’s the longest he’s slept in “ages.”
“I’ve been sleeping like that a lot lately,” said Cook, who is greeted every morning by his 13-year old African grey parrot, Harrah. “I think it’s my body catching up for all the lost sleep I didn’t have.”
Even during a triumph like the speech in Greenville, there was some perspective for Cook to chew on during the ride home.
After the event was over, a couple approached him and told him about the woman’s brother, who had the same deep brain stimulation surgery about a year and a half ago, but had seen no improvement. In his office the next day, Cook was asked how that made him feel, considering his operation had so far worked.
He paused, his eyes reddening, and looked up from his desk.
“It’s a wicked disease. And I feel for the man.”
The Greenville couple was in tears, and so was another woman who approached Cook. Her brother had Parkinson’s and was unsure about the deep brain stimulation surgery.
“Tell him it’s worth it,” Cook said to her. “It’s worth the try because it’s hope and there is no cure, so, to me, it’s the only thing a Parkinson’s patient has if he wants to live a somewhat normal life.”
Cook’s life before the sugery was anything but normal, and yet he trudged on.
“He was always smiling even when he was tired and out of it,” said Winthrop All-Big South Conference center Schaquilla Nunn, who Cook personally recruited to the school four years ago. “He never allowed that to get to him.”
Assistant coach Christena Hamilton said “there was just a feeling,” when Cook wasn’t at his best physically or mentally last season, and the coaching staff was able to step forward in those moments and assume a bigger role. It was a real-time lesson for the team’s players that extended far beyond basketball.
“We preach about going through adversity and overcoming it and sticking together,” said Hamilton. “So, here it is. We’re actually living it.”
Somebody always has it worse
Cook can look to his own life for the same kind of perspective. There have been humbling and painful moments in equal dose.
On Jan. 27, Winthrop women’s basketball team trailed Longwood by 12 at the half. Frustrated with his ever-shaking hands, Cook did what was necessary for his team. As the Eagles’ comeback attempt intensified in the second half, Cook plopped down on the arena floor to diagram a play on a dry erase board during a crucial timeout.
“We needed a bucket,” said Hamilton. “You could see the tremors start to flare up. He literally can’t draw it up, but he wants to get it out so bad he just throws it (the board) on the floor and gets on his knees and starts diagramming on the floor. Because he just needs the board to be steady. To watch him in that moment really captured how resilient he has been the entire year.”
Winthrop completed the comeback in a 63-62 road win.
“It was just passion,” said Nunn, remembering the timeout vividly. “He wanted it, and he showed us, ‘I’m here, and I’m gonna get y’all through this.’”
Cook can recall the details of events like that with ease, but he clouds up – purposely – when the memories are darker. When Cook’s 3-year old-son, Conner, was suffering from a brain tumor nearly 20 years ago, he prayed.
“Lord take me. Let Conner live.”
When Conner passed, and Cook lived, he figured it was for a reason.
“I just try to do the best I can every day,” he said. “If it helps somebody that’s great. If it doesn’t, I’ll just keep talking until I do help somebody.”
Somebody in this world always has it worse; Cook knows this firsthand.
Through the roof
Even after the operation, Cook has intermittent bouts of stiffness and quick flashes of a tremor, especially when he gets excited. And he’s still coming to grips with some balance issues that have resulted from the electrical stimulation pulsing through his brain. But it’s nothing like the incessant shaking that tormented him before.
The delicate balancing act that it takes to get around at the moment is one that mirrors Cook’s own life. The expected duration of the operation’s effectiveness is uncertain; it varies by patient. He said that if the symptoms come back, he’ll have to go to therapy, because “there is no way I could do it on my own again.”
Asked what kind of therapy he would need, Cook clarified.
Even with deep brain stimulation’s high success rates at reducing tremors, there was always the chance that the surgery would fail. This was Cook’s greatest fear, that his own operation wouldn’t stop the endless wiggling, that his Parkinson’s Disease couldn’t be slowed at all.
“That was some depressing times,” he said.
Those moments are in the past, for now.
Basketball – as always – offers Cook hope and a focal point. In the upcoming season, Winthrop returns two All-Big South first team players – including Nunn – and should be one of the conference’s favorites to make a run at the NCAA tournament. The players return from summer break to Rock Hill July 12, the first time most of them have seen Cook since his operation was completed.
“They’re looking forward to seeing him again and seeing the results,” said Hamilton. “Yeah, I think the energy is gonna be… through the roof.”
Cook is again riding his bike to work. He can grip a Mello Yello can and drink from it with ease, and he diagrams a play on a sheet of paper with a strong and steady hand. And he can finally sleep, and dream deep into the night.
“The surgery offers hope,” he said. “It’s not a cure, but we hope it lasts a long time.”
Bret McCormick • 803-329-4032; Twitter: @BretJust1T