“How Did You Know?”
People ask me how I found out I have Parkinson’s disease. This question never bothers me; no questions do, really. It’s an unusual diagnosis to get in your late 40s, and people are curious. I would be curious, too. I might even want reassurance that I didn’t have Parkinson’s myself.
Getting my diagnosis required several things. One was paying attention to a faint tremor in my left index finger, but also listening to my gut. I knew something wasn’t right with my body. A diagnosis also meant trusting my primary care doctor and following her advice, in spite of my fervent hope that it was overkill. After all, I had always been the picture of good health. Getting a diagnosis also required showing up for an appointment I never wanted to have, could easily have delayed, and for which I had to wait anxiously for over a month.
Ultimately, finding out I have Parkinson’s required adhering to my belief that knowing the truth is better than running from it.
This is how I found out.
The Erratic Index Finger
It’s the fall of 2016, and sit comfortably at the cherry-colored wooden desk in my campus office. It’s in the Steve Hicks School of Social Work at The University of Texas at Austin, and I can look out of my window and see the university’s iconic Tower and its Darrell K. Royal Memorial Stadium, where my favorite team since childhood, the Texas Longhorns, play football on Saturdays. Having lived in Texas as a child, pulling for the Texas Longhorns was my first religion.
As squealing bus brakes announce the arrival of students for early morning classes, I take quick sips of warm coffee between spurts of typing on my computer. With thoughts flowing, my excitement grows as something new begins to live on the page. My left hand, like my left wrist and forearm, has been stiff for months. It tries to keep pace with the right hand’s fluid keystrokes.
A sudden twitch in my left index finger disrupts my work. Each time I extend it, like when reaching for the T key, it shakes quickly back and forth. You know how a parent shakes a finger when telling her child No, or not to do something? This is the kind of movement my finger is making. And I can’t stop it. It doesn’t move when at rest on the keyboard or desktop. But anytime I use it purposefully, like when typing or pointing at something, it swings back and forth like an erratic pendulum on a wall clock.
I chalk it up to having drunk too much coffee and don’t think much more about it. But that afternoon it keeps twitching, and the same thing happens the next morning, and for the next few weeks.
Finally, I tell my wife Tracey about it. She encourages me to make an appointment with our doctor. I make the appointment and start Googling finger tremors.
I see my doctor and she refers me to a neurologist, Dr. T.*
The Exam
On October 26, 2016, I meet Dr. T as he enters the exam room. A distinguished looking man in what I assume is his 60s, he has stylish wire-rimmed glasses and dons a purple bow tie, blue oxford shirt, and khaki pants. A burnt orange University of Texas lanyard hangs around his neck and holds his St. David’s Medical Center ID badge.
He introduces himself, glances at the notes his nurse had taken a few minutes earlier, and then sits down at the small desk to my right.
“So, what’s going on?” he says.
I tell him about the stiffness in my left forearm, wrist, hand, and fingers, making a fist several times as I speak.
“I have a tightness that won’t go away, and less dexterity in my fingers,” I say.
He asks when I first noticed the change. I tell him it’s been this way for at least six months, and probably longer, and that I especially notice it when writing and typing.
“I’m left handed,” I say.
Then, I show him the tremor in my left index finger. As he moves closer to look for the faint twitch, I quickly emphasize how active I am, how I tend to push myself at the gym.
“I have probably been overdoing it in my workouts. I’ve been known to do that,” I say.
His eyes inspect my body as I speak. He looks like a detective at a crime scene. I worry that the crime scene is my body.
“I saw Dr. W a few weeks ago. She thought it would be a good idea for me to see you,” I tell him.
With pursed lips, he nods in agreement, still looking me over with his Colombo eyes.
Despite still thinking there’s a chance I have Parkinson’s, given the previous diagnosis of physiologic tremor I’m betting he’ll perform a brief examination, tell me to dial it back at the gym, maybe order physical therapy, and then wish me well as he sends me on my way. After all, I have always been healthy and I take good care of myself.
He reaches into his weathered black leather doctor’s bag and says, “Let’s take a look,” as he directs me to an exam table. I climb up on it and he begins his work.
Holding up his index finger, he asks me to follow it with my eyes. As he moves it to different places, I track: left, right, up, down, straight ahead, then back to the left, up, down. He then asks me to reach out and touch the tip of his finger with each of my index fingers, first the left one, then the right one, again moving his finger to different places every time there’s contact. He also has me touch the tip of my nose with both of my index fingers, sort of like a field sobriety test for suspected drunk drivers.
Next, he checks my reflexes in several places, has me tap my fingers together and tap my feet to the floor in different combinations, and then asks me to push and pull with my hands against his resistance. With earnestness, I follow his commands. After this, he takes a metal instrument from his bag. Sliding it down my shins, he asks if I could feel the sensation. I can. It feels cold.
When he finishes with my shins, he points to the small desk beside the exam table.
“Have a seat over there,” he says.
When I sit down, he gives me a pen and a piece of paper and asks me to write something, which I do. My left wrist and forearm move with deliberateness as I write. As has been the case for several months, my handwriting is labored and messy.
When I finish, he gestures with his arm and asks me to follow him.
We leave the exam room and step into a long hallway with bare beige walls; their nakedness aligns with a growing emptiness in my chest. He asks me first to walk toe-to-toe in a straight line, and then to walk naturally down to the end of the hallway and back. As I will later learn, he is checking my balance, arm swing, and gait—all part of the standard exam protocol for Parkinson’s disease and other movement disorders.
When I finish, we return to the exam room and he asks me to sit on the table again. Giving sustained attention to my left side, he rechecks the reflexes in my elbow and ankle, and also rotates each back and forth.
“How am I doing?” I ask.
He offers no response but keeps looking at my left elbow. He taps it a few more times with the dark orange rubber head of a reflex hammer.
The Life-Changing Words
For a moment, I wonder if he is this thorough with all of his patients, but then the pensive look on his face signals that something is wrong. He gives my elbow one more tap. Then, with a slightly furrowed brow, he invites me to return to the chair beside the desk.
He sits down, too, and leans toward me.
“What worries me is that I think you are in the early stages of Parkinson’s disease,” he says.
I feel my throat closing and it’s hard to breathe. I feel hot all over my body and it’s tough to sit still.
He opens up a black three-ring binder that he’s pulled from the desk drawer. With pages of diagnostic information about Parkinson’s, he turns it my way as he begins to explain its contents.
He tells me that Parkinson’s follows from a loss of neurons in the brain that produce dopamine, a neurotransmitter that affects the body’s ability for movement and experiencing reward. He then shows me a diagram of where this all goes down, pointing to an area in the brain called the basil ganglia and, more specifically, the substantia nigra. His notebook holds drawings, tables, charts, and lists. Each protected by a plastic folder. Each blurred as I attempt to follow along.
“These are the criteria we look at when you present with Parkinson’s symptoms,” he says, pointing to one of the lists.
I see in bold type: Bradykinesia (slowness of movement) must be present with one or more of the following: muscular rigidity, tremor, or postural instability.
“If someone has at least two of these symptoms, and you do—bradykinesia and rigidity—we make the diagnosis,” he says.
When I finally speak, my voice cracks like a pubescent teenager.
“But I have young children….
How will I tell my parents…?
How sure are you about this?”
“I’m pretty sure,” he says.
“But how do you know?” I ask.
The Evidence
“Several things are going on. You have slowness on your left side, that’s what we look for first. You also have rigidity in your wrist and arm. The arm doesn’t have a natural swing to it when you walk; and when I move your wrist back and forth, it isn’t a fluid motion but, instead, has what we call cogwheeling. It almost clicks when you move it, like a ratchet wrench,” he says.
I stare at him blankly as my mind flashes back a few weeks, to when my kids and I rode boogie boards for hours in Surfside Beach, South Carolina, and when all seemed right in the world and there were smiles and freedom to savor.
Silence.
“We’ve only just met, and you might be a serious guy, but your face shows what we call masking; it takes on a more serious look than it had before and shows less expression. It’s a common early symptom…and while it’s very subtle in your case, I know what to look for, and I can see it.”
He closes his notebook and breaks another block of silence by saying he wants me to have an imaging test.
“I want you to have something called a DaTscan. I rarely order this because the diagnosis can almost always be made from the exam. But you’re young to have Parkinson’s and your symptoms are subtle. The scan will let us know for sure,” he says.
I keep staring at him, wondering if I’ll walk my children down the aisle at their weddings, and if I’ll even be at their weddings. I reach down and grab the seat of my hard wooden chair with sweaty hands.
“This will progress slowly. It’s likely going to be at least ten, maybe fifteen years before you notice significant changes, and maybe even longer. I’ll see you a couple of times a year; and I suspect that every year or so you’ll report the symptoms are getting a little worse and the exam will show that, too. That’s how it typically goes for younger people.”
He pauses to let me catch up. I can’t believe he’s schooling me with all this information so soon. I wonder how many of these conversations he had over the years.
“I’ve been doing this for a long time. We know how to treat this disease, and we are on the verge of real breakthroughs. Many new treatments are on the horizon…I would not have said this a few years ago, but I honestly believe that we’ll soon have good options for new kinds of treatment—better treatments; and there’s real hope that we are close to finding a way to stop, and maybe even reverse, the progression.”
I try to absorb his words. Try to hope.
“I want you to remember something. It’s really important. People experience the disease differently. It’s not the same for everyone,” he says.
He pauses, looks me in the eye with a Texan’s directness and authenticity, and then says, “This disease is different for everyone. Don’t let someone else’s story become your story.”
At the time, I didn’t understand the importance of this advice.
The New Kind of Life
The appointment concludes with him handing me a prescription for Azilect, an MAO-B inhibitor, and some samples, which he tells me to start taking immediately. I’d learned that this drug prevents an enzyme in your brain from breaking down the dopamine you still have, so that you hold on to it for longer. He asks me to return in one month and encourages me to bring Tracey.
He says, “I know this is hard, Allan. There’s a lot to take in. You now have a new family member. Everywhere you go, you’ll take that family member with you. It will take some time to adjust.”
I can only imagine the look on my face, but Dr. T must sense that I’m still processing his revelations. He pauses again. Then, he reiterates what he’s just said.
“I’d like you to come back next month with your wife. You’ll both have questions and I want to do my best to answer them.”
Still sitting in the exam room chair, I look down at the faint tremor in my left index finger, the reason for my initial appointment with my primary care doctor and a symbol for a new kind of life. Dr. T opens the door and waits for me to stand. I see those naked hallway walls, which now align with my heart.
He extends his hand and shakes mine. We walk together to the front desk area, where patients pay their bills and make their next appointments. My stomach churns, and my legs feel like they might not hold me up. When we arrive there, his eyes again lock with mine. He places his hand on my shoulder and repeats his advice.
Remember, don’t let someone else’s story become your story.
I nod my head, still trying to take it all in. I manage to get out a soft thank you as he turns and walks away.
After scheduling my follow-up appointment, I leave the office, walking slowly toward the parking garage as the world whirls by. Somehow, I find my way back to my car as questions, thoughts, and feelings ricochet through my malfunctioning brain and body.
I open my car’s door, sit down, and weep.
As I drive home, I keep thinking, But I have young children…
_______
*If you want to read my account of this referral and a related series of events, including a misdiagnosis by a different neurologist, see “Misdiagnosed” at PDWise.com.
Photo: Allan Cole
Arno River, Florence, Italy
Allan Cole is a professor in The Steve Hicks School of Social Work at The University of Texas at Austin and, by courtesy, professor of psychiatry in the Dell Medical School. Diagnosed with Parkinson’s in 2016, at the age of 48, he serves on the Board of Directors at Power for Parkinson’s, a non-profit organization that provides free exercise, dance, and singing classes for people living with Parkinson’s disease in Central Texas, and globally via instructional videos. He also serves as a Community Advocate for ParkinsonsDisease.net, writing columns about living well with Parkinson’s. He is author or editor of 10 books on a range of topics related to bereavement, anxiety, and spirituality. Currently, he is writing a book on counseling people with Parkinson’s disease, which will be published by Oxford University Press.
Follow him on Twitter: @PDWiseBlog