Parkinson’s disease can be difficult to diagnose, even for seasoned physicians. A main reason is that, particularly in its early stages, Parkinson’s shares numerous symptoms with other illnesses.[1] As a result, having a neurologist trained in movement disorders, or what we call a movement disorder specialist (MDS), is vitally important, not only for treatment but also for diagnosis.
Up to 35 percent of those living with Parkinson’s disease, or one in three, tell stories of an initial misdiagnosis.[2]
I’ll share my story.
Worrying
Dr. W walks into the exam room. She has been my doctor since we moved to Austin in 2003. In fact, she is my wife, Tracey’s, doctor, too, and we both adore her. She has an ideal mix of traits for a physician: smart, relational, patient, and funny. In her fifties, and with fair skin, light freckles, short brown curly hair, and glasses, she has a kind, inviting smile even when resting her face. Long legs and thin build reveal that she is a runner, as does the thick black band of her watch. Her specialty in sports and family medicine suits her well.
“I’m here because I need you to tell me I’m not dying,” I say.
“We’re all dying,” she says.
I laugh. She flashes her now big kind smile.
“So, you have a twitchy finger?” she says.
Having experienced a faint tremor in my left index finger for a few weeks, I told her nurse about it before Dr. W arrived.
I lift up my finger, point at the wall, and it begins to twitch. She moves closer to the exam table, where I sit.
“Well, at the very least, I need you to tell me I don’t have Parkinson’s or ALS,” I say.
Her face takes on a more pensive expression. Her tone becomes more measured.
“Let’s see what’s going on,” she says.
I begin to feel hot inside and the back of my neck tingles.
Turning around, she takes her handheld light from the small counter beside the exam table, which also holds a box of tongue depressors, gauze, latex gloves, and other supplies.
Looking into each of my eyes, she asks me to follow her fingers as she moves them to different places. She then asks me to stick out my tongue and hold it, like my daughters used to do when mad at each other. Born twenty-three months apart, they still fuss at one another sometimes, but they also say “I love you” and they give each other hugs before going to bed.
Next, Dr. W asks me to move my tongue back and forth inside my mouth, from cheek to cheek. I follow each of her commands dutifully.
Finally, she has me roll my arms, one over the other, as if I am playing patty cake with a young child. After I do this several times, and in alternating directions, her expression becomes even more serious. Hot waves begin to move through my body.
“Allan, I’m sorry, but I can’t tell you that you don’t have Parkinson’s or ALS,” she says.
“What?” I whisper. “What do you mean? What concerns you? The finger tremor?”
“I’m more concerned about your left arm. It’s stiff, almost locked up; and it’s more noticeable when you roll it over the other arm, in both directions.”
Silence.
I swallow hard. I’m forty-eight years-old with two young children.
“Are you more concerned about Parkinson’s or ALS?” I ask.
“Parkinson’s…but let’s not get ahead of ourselves. It would be unusual for a person your age to have it. But if you do have it, it’s early, and it’s slow-progressing, and it’s treatable for a long time. Many years.”
I volunteer to do the exercise again. I’ll just keep trying until I get it right.
“I want you to go get a massage…. Let’s see if we can loosen you up. If it’s not better in a couple of weeks, we will go from there,” she says.
I’ve read about Parkinson’s after it came up in my Google searches, which I began in earnest after noticing my twitchy finger. I know how rare it would be for a person my age and with no family history to have it.
Still, she’s worried about it.
She breaks the silence.
“It’s my job to worry…I would like you to go ahead and schedule an appointment with Dr. T. He’s a neurologist, and an expert on Parkinson’s. It’ll likely take a few weeks to get in to see him. By that time, we should know whether your stiffness is getting better,” she says.
I nod slowly in agreement, trying to push away the walls closing in on me.
“I want to know how you’re doing in a couple of weeks. But remember, it’s my job to worry,” she tells me again.
Reeling
I leave her office, and instead of driving back to campus, I go home. As I give Tracey the quick version of what Dr. W has just said, and tell her that she wants me to schedule an appointment with Dr. T, I dial the number to his office.
“I’m sure she just wants to be thorough,” Tracey says. “You know she’s like that. That’s good.”
I force myself to agree, but think: You, of all people, aren’t worried? You must be in denial, because you always worry about health stuff.
The receptionist tells me that the first available appointment is nearly a month away, but I take it.
“Please call me if you have a cancellation. Any appointment time is fine. I’ll make it work,” I say.
As I hang up, Tracey comes into the bedroom. Her salt and pepper hair is pulled back from her face, and the long sleeves of her autumn orange cotton t-shirt are pushed up because she’s been baking. A few specks of white flour rest on her high olive cheekbone.
“What all did Dr. W say?” she asks.
I share more details of the exam, and tell her about the need for a massage.
Tracey restates her thorough approach to care.
I interrupt her.
“It’s going to be almost a month before I can see the neurologist,” I say, “and I can’t wait that long. I’ll lose my mind…. I’m going to call David.”
I send a text to my friend, who is a physician in Austin.
Can you give me a call when you have a moment?
He calls almost immediately, and I tell him what’s going on and ask if he can help me get in to see another neurologist.
“I’d like to see someone as quickly as possible,” I say.
“I understand…. Let me speak with some colleagues and I’ll give you call back,” he says.
I thank him, hang up, and pace the house.
A few minutes later, he calls back and gives me the name of a neurologist, Dr. R., whom a colleague has suggested.
“I don’t know her, but another doctor says she’s good. She and I just spoke, and she is expecting you to call…. I don’t know about her experience with Parkinson’s, but maybe she can be helpful. It’s a start,” he says.
I thank him.
“Let me know how it goes. I’ll keep working on other possibilities,” he says.
We hang up and I call Dr. R.’s office.
“This is Allan Cole. My friend, Dr. David Navale, suggested I call. I’ve been referred to a neurologist…tremor in my index finger…stiffness in my arm…earliest available, please.”
“Hold on a moment, please….”
I wait.
“Mr. Cole, she can see you at 4:00 p.m. today, if that works.”
“Wonderful. Thank you so much. I’ll see you then,” I say.
I head to my office, trying to get my mind on something else. I have four hours to wait.
Hoping
“You have a physiologic tremor,” she says, after giving me a thorough examination. “It’s nothing to worry about.”
I exhale like a whale rising to the ocean’s surface.
Dr. R’s calm face matches her reassuring tone. Her dark wire rimmed glasses enhance her already apparent intellect and give me extra confidence in what she’s saying.
“Let me show you,” she says, gesturing for me to take a seat and pointing to her laptop screen. I read it.
… physiologic tremor…occurs in healthy individuals…not considered a disease but is a normal phenomenon…can be enhanced by stress and anxiety….
“See, nothing to worry about,” she says.
Butterflies rush out of my stomach.
“Thank you. I’m so relieved, and I can’t tell you how much I appreciate your kindness and generosity. Getting me in so quickly made such a difference,” I say.
I almost reach out to hug her, but catch myself.
“I’m happy to deliver good news,” she says.
I stand up, shake her hand, and walk to the checkout desk to give the receptionist my co-pay.
Looking at the paperwork, she says, “No follow-up appointment is needed.”
I smile like a kid on his birthday.
Walking to my car, I text Tracey.
I’m fine. A benign tremor.
Thank God. I’m relieved, she writes.
Me, too. I’ll call later.
I love you, Honey, she writes, adding several heart emoji.
I smile, and remember the few months after we met, when she was finishing college in New York and I, having just graduated, lived in North Carolina. We talked daily on the telephone, back when doing that cost a lot of money, and we sent each other cards and faxes with sappy notes that young loves find thrilling. We still leave each other sappy notes, and, in recent years, lots of emoji. It’s still thrilling.
I head back to my office to finish a couple of things. The fall semester has just begun and it’s a typically full week.
Doubting
At dinner that evening, we gather around our kitchen’s island and talk about the day. Holly, our third grader, tells us about her upcoming math test, and that she’s learning her multiplication tables. She begins to recite them and gets up to 6 times 6 before being distracted by our dog Sunny, who’s in our fenced front yard and, as usual, barks at someone walking by.
Meredith, our fifth grader, begins telling us about a kid at school who told her that boys think farts are funnier than girls do, and that she told him he’s being sexist.
Holly walks outside to play with Sunny, and Meredith heads to her room with the iPad.
“In ten minutes, you have to finish your homework,” I tell her.
“You got it, Daddo,” she says, already mesmerized by her screen.
“I’m so happy you got a good report today,” Tracey says.
“Me, too,” I say.
“I know you were worried,” she says, “and I was, too…but I figured there’s no way you could have Parkinson’s disease. It didn’t add up.”
“Maybe not,” I say, “But I’m keeping my appointment with Dr. T….”
[1] https://www.parkinson.org/Understanding-Parkinsons/Diagnosis/Conditions-that-Mimic-Parkinsons
[2] https://jnnp.bmj.com/content/73/5/529
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Photo by Ken Treloar on Unsplash
Allan Cole is a professor in The Steve Hicks School of Social Work at The University of Texas at Austin. 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 @allanhughcole