From Parkinson's to a Nearly Normal Life
There was something very important Steve Zabielski decided not to share with his wife for the best of reasons. So he shielded her from the truth. For five years.
"I just couldn't bring myself to tell anyone that I had Parkinson's, not even my wife," Steve says, nodding at the memory. "I couldn't tell anyone, not family, not friends and certainly not people at work. I had to figure out a way to deal with it first myself. I just didn't want anyone to think of me as weak or needing sympathy. I wanted to be strong for my family, as long as possible."
Parkinson's disease, a degenerative disorder of the central nervous system, has no known cause in most cases. Medically, Parkinson's has been traced to the death of dopamine–generating cells in the midbrain. Symptoms are usually characterized by movement–related issues, including shaking, rigidity, and slowness of walk or gait. In time, cognitive impairment and behavioral difficulties may occur, sometimes followed by sensory and emotional problems.
For years, Steve had enjoyed an active and fulfilling life, traveling extensively, enjoying his career and family and always doing something outdoors. Eventually, he decided to fulfill an earlier promise to himself and his wife to go to law school. Steve practiced law by day and poured his heart into being the best husband and father he could be every moment of every night, weekend and family vacation.
"My wife and I loved skiing together and vacationing in the Caribbean whenever we could swing it. I also loved scuba diving and mountain biking," he remembers. "My kids and I would be playing all the time, kicking a soccer ball around or just playing catch."
One night, Steve was in his office gathering his things for the ride home when he felt a peculiar chill envelope his right forearm.
"The memory of the feeling at that moment is still so vivid," Steve recalls. "It felt as if the life completely drained out of my right arm from the elbow down."
A month later, he began to notice diminished dexterity in his right hand. Steve initially attributed these feelings to natural causes. A few days later, though, while out for a run, an unfamiliar pain and stiffness in his right shoulder, followed by involuntary twitching in his right arm, convinced him otherwise.
"At that point, you just start to have a feeling that something's wrong," Steve says, tapping the tabletop to make his point.
These physical events were soon followed by unprecedented bouts of extreme fatigue, when he felt as if every ounce of energy had been drained from his body.
Steve grimaces at the thought. "Now I know I have to see a doctor. So I go on my own, not wanting to alarm anyone. And very quickly, one thing leads to another. And then a doctor tells me, 'I think you may have Parkinson's.'"
Historically, physicians have had some success in the early stages of Parkinson's by managing the symptoms with medication, which can supplement the lack of natural dopamine generation for a period of time. After years of taking medications, however, the body gets used to the effects and the advantages begin to diminish.
It was the medication, ironically, that led to Steve sharing his secret with his wife.
"I had so many pills," he recalls, "that they were spilling out of my pockets."
When he finally told his wife, Yu Chong, he had Parkinson's, she could not fight back the tears. But even before she had stopped crying, she promised him that together they would do whatever it took to fight the disease. And they would win.
His children were a different story.
"They were young," Steve says, in a voice just above a whisper. "They didn't really understand. They couldn't.
"As I lay there at night, trying to figure it all out, I just kept wondering: How did this happen? Where did I go wrong? What caused this?"
There were no answers. And soon after that, there were minimal benefits from the medications, as the sickness in Steve's body began to overwhelm the positive effects of artificial dopamine in his brain.
The Zabielski family needed another solution. And soon.
A Ray of Hope
One day in the summer of 2013, Steve's mother wandered into an art gallery with some friends and mentioned her son's condition to someone who also had a relative in the late stages of this debilitating disease. A neurologist, who happened to be there that day, overheard her story. He quickly facilitated a meeting between Steve and his practice partner specializing in movement disorders.
After an extensive examination, Steve heard the same things he had heard from several specialists over the past few years: "You are in the late stages of Parkinson's and you've maxed out your meds."
"You need go see one of the best neurosurgeons in the world. You need to go see Gordon Baltuch," the neurologist said.
Hearing those words set in motion an exhaustive internet search for everything Steve could find about Gordon Baltuch, MD. And the more he read, the more he dared to hope.
"He just seemed to be the best guy. Period."
When Steve met Dr. Baltuch, he remembers a term the physician used almost immediately in their conversation.
"Deep Brain Stimulation."
"Right from the start, Dr. Baltuch said he was going to implant wire leads into both sides of my brain, which would emit electrical signals on command and stimulate certain areas of my brain so that it would function in ways that it hadn't functioned in years." Steve stops to take a breath in wonder even now as he recalls their first conversation. "He said the stimulation would mitigate the major effects of the disease, allowing me to live day to day much more like I had earlier in life."
"He's describing drilling holes into both sides of my head, and running wires up into my brain, and planting small electrode stimulators in my chest, and doing so in a tone that I'd use to describe something I've done a thousand times," Steve recalls.
"When I say it now, out loud, it still sounds like science fiction to me. But the way Dr. Baltuch explained it was brilliant, and he was so confident, and at the same time so caring, that I made up my mind on the spot: If there's anyone I trust to go into my brain and do all this, it's this guy."
Steve looks down for a moment, shakes his head and then looks back up.
"I was at the end of the road. I had no place else to go."
The Big Day
On the morning of the procedure, Steve came to the Hospital of the University of Pennsylvania medication-free for the first time in years. He suddenly realized how much the Parkinson's had progressed.
"I was on the gurney in pre–op for a very short period prior to the operation. I was horribly uncomfortable due to the complete lack of medication in my system for the first time in years. Seconds felt like hours. I couldn't move with any authority; I couldn't speak above a whisper.
"First they knocked me out so that I would be comfortable and immobile while they drilled two small holes in my head in exactly the right places." As Steve describes the experience, his eyes grow wide. "Then they brought me back out of the anesthesia just long enough so that I could give them feedback and help them locate the precisely perfect points in my brain, so they could place the wire leads for maximum benefit."
He raises his hand and waves it over his head like a magic wand.
"So, incredibly, I'm having a conversation about baseball even as I'm lying there completely immobilized while they position and reposition these electronic leads. Then, almost instantly as the lead is positioned in the best spot, I feel a rush of energy flow through my system for the first time in years. Then, they put me back under again so they can close the two holes up and implant two tiny neuro–stimulators just under the skin of my chest."
"And never, not even for a second, did I feel the slightest pain."
Turning it On
"Two days after the procedure, the neuro–stimulators were powered up," he recalls, blinking at the thought. "And my life changed.
"I could focus. I could concentrate. I could eat. I could sleep. I could do all these things I hadn't been able to do for years. I felt normal, for the first time in forever. I felt alive again."
After putting up a brave front and showing the courage he felt he needed to demonstrate for years through his suffering, Steve looked up at his wife and mother and broke down in tears.
"I was able to do and feel all these things, all these little things we all take for granted that I never thought I'd be able to do and feel again," he says, staring out the window at a winter sunset. "Sleeping, eating, walking, talking. Just sitting there thinking about getting these things back, and having the luck and good fortune to have been able to have the operation, was very humbling. "
Captain of the Ship
In the days after his procedure, Steve felt no pain and very little discomfort, a state he attributes at least partly to the quality of his care.
"Everybody in the I.C.U. was very personal, very reassuring," he says, nodding to the rhythm of his words. "They said all the right things, made me feel good. I was hungry for the first time in years and they raced to bring in food for me. They didn't have to do that.
"And Dr. Baltuch was like the captain of the ship. He was always very personable and made a connection right from the start at our first meeting. We shared stories about baseball, playing guitar and other personal things. He's just a great guy, a great guy who happens to be a neurosurgeon."
Steve holds up the palm–sized transmitter that controls his neuro–stimulator, still marveling at the magic of the engineering.
"Dr. Baltuch comes in when it's time to start the deep brain stimulation, hands me this and says, 'It's not rocket science. Think of it as electric medicine. You'll pick up controlling the system in no time.' He just exudes confidence in everything he did, which in turn gave me confidence."
Steve quickly mastered the neuro–stimulator, customizing the stimulation so that it worked in sync with his general health. In a matter of days, the process became more steady and predictable, and the benefits became more pronounced.
"In the weeks and months after the treatment, I gained about 35 pounds of the weight I had lost," Steve says, smiling and touching his belt. "When you can't eat or sleep for years, you can't do much else. Suddenly, friends are coming up to me and saying 'Hey, you look great, you look like yourself again, let's get together.'"
A New Perspective
Steve looks down at his loafers and pauses to carefully consider the answer to a question about how things have changed in his life in the last few months.
"I would say the number one thing I now have is predictability," he says, raising his index finger. "I can go to work, I can go to dinner -planning those events and knowing I can take them on, with confidence, for the first time in years."
"Living off my savings is over. I can take care of my family again. I can go to the kids' games again. I can take them on the vacations I promised but didn't deliver for years."
Steve feels like – in a way – he's been given the gift of a new perspective.
"Everything has new meaning. Rolling over in bed, eating a meal, playing with my kids. All the things we all do, we all take for granted, had been distant goals and dreams for me. And now they're all returning to me.
"In the next few months, I'm going to ski again, and start running again, get back in shape and start doing all the things that brought me joy for most of my life." Steve stares out at a western sky layered with brilliant colors by a disappearing sun. "It's all coming to be exactly as Dr. Baltuch said it would."
The Most Important Thing
Steve's reflection is interrupted by the sounds of children's laughter just outside. The front door swings open. His son and daughter slink into the living room in the manner of young teens everywhere, give their father a peck on the cheek, and retreat to the electronic delights that await them in other parts of the home.
"During the darkest days," Steve says in a voice just above a whisper, "I never thought I'd be able to play catch with them again, or hug them again. And I'd just wait until I was in a room by myself, and I'd think I can't take this anymore, and I'd just break down bawling as quietly as I could."
He shakes his head slowly, as if to turn the memory away.
"Now the whole level of happiness in this house has been raised. The kids see that I'm happier, healthier and stronger. They don't talk about it, but you just see it in their eyes.
"And my wife is happy," Steve smiles "partly because I'm happier and healthier, and partly because for whatever reason my libido has been off the charts lately.
"A lot of people have been giving me help me for years," Steve confides, swallowing as he speaks, "and what I've been given these last few months was beyond my imagination. So now I look forward to the chance to help others, to help restore some joy to their lives."
His youngest daughter comes through the back door, silently steals across the living room floor, lets her father smother her in a hug, and sits down on the couch to watch her dad.
"My counsel for new patients would be this: Look at where you are. And look at where you can be, by looking at me.
"Everything you fear, including lying there awake during the procedure, has been planned precisely to maximize the benefits for you. Go for it. The possibilities of regaining life as you knew it far outweigh the risk.
"And talk to Dr. Baltuch," Steve says. "You won't have any doubts. He's the guy."