‘A different type of fatigue’: One woman’s Parkinson’s diagnosis is a test of flexibility and gratitude

“Living With” explores the contours of life with chronic illness, from the prelude to diagnosis to new patterns of living, to wrestling with big questions about illness and health.

In 2020, Sandra Coplin, now 66, moved her life from her native New York — at the time, an epicenter of Covid’s devastation — to North Haven, Conn., to be close to family. She had retired earlier that year from a 42-year career as a legal records manager for seven law firms in the city. And she had been diagnosed with Parkinson’s disease, which left her with flagging energy levels and an unsteady gait.

But before the big move, Coplin said a small, symbolic goodbye — to her many high heel shoes. Her toes had begun to curl, a symptom of her illness, so she could no longer stride in her preferred footwear: four-inch heels. So she packed the gently worn size nines into a bag, and gave them away to her apartment building’s doorman, who sent them to family abroad. “I have to admit a little vanity,” she said. “I was like ‘Oh, my beautiful heels!’”

Coplin traded in pumps for “orthopedic-looking shoes,” and the city for the suburbs, and has been navigating life with Parkinson’s with a generous dose of faith and gratitude. STAT interviewed Coplin about her path to a diagnosis, knowing when to retire (“The message was clear on the wall: you need to stop working now”) and how her life has shifted since then. 

This interview was edited for brevity and clarity.

What did your day-to-day look like as a legal records manager?

Well, it changed, of course, once everything became electronic and automated. But prior to that, it was all papers. I did not do a 9-to-5 day, even though my hours were supposed to be 9-to-5. I could very well be there till 9:30, 10 o’clock in the evening. That wasn’t because someone asked me to; that’s just my work ethic, to finish what I started. My son was already grown by that time, my husband had retired in 2010 and so he was very self-sufficient. So it was a busy day but I loved what I did, so it wasn’t a chore.

You got all of the good secrets and legal education by managing so many legal documents.

That’s one of the pluses, one of the advantages. But I’m happy to be retired now. Things happen for a reason. When I found out in 2017 I was diagnosed with Parkinson’s, it was never a thing to say, “Why me?” Because I felt I had been blessed in my life.

Before your diagnosis, what were some of the first signs that made you notice that something was off?

Fatigue was one of the first, because I could work very late hours and manage on four or five hours of sleep, get up the next day and be raring to go. So something I knew was off. And it was a different type of fatigue. It wasn’t just something that I could say, “I’m sleepy,” or, “I had 4 hours sleep, so I need some more.” This was just where the body just felt like it was shutting down completely. As I learned, with Parkinson’s, we tend to have an on-off time. And that was what was basically happening. At a certain time, it would be my “off” time. So by the time I would be getting home, I could barely walk to be able to get off the express bus. And I only had a half a block to get to my building. And that was almost impossible.

They had cameras up on the building — they had 28 cameras, it was a huge building — and the super viewed the footage of who was entering, and he actually asked my sister, who lived in the same building, “Is your sister all right? Because she looks like she can barely make it up the driveway.” And that’s just how I would be by that point in time in the evening. A couple of other people thought maybe I had a stroke. So it became very obvious. And I said, OK, now I definitely have to stop working. 

I had a loss of appetite. (Not that I was ravenous when I ate normally, but it seemed like the desire to eat was not there.) I had to say to myself, “OK, you need to eat something.” The sense of smell was waning and disappearing. I felt my skin become awfully dry. This wasn’t all at once, this was over a period of time. 

And then the balance. That was the worst part, even more so than the fatigue, because it was like a combination of the two: you feel like you’re going to fall and sometimes you’re so fatigued, your balance is off. I just thought, “I’m going to go down at some point.” And psychologically, I was just really stressing over that.  [The drug Selegiline] has been successful in helping with that balance. I have been very blessed. I had never fallen. And I hope not to. 

Why did you think, at first, that you might have multiple sclerosis?

Because I knew a couple of people who had MS. And I had quickly done a Google thing, and I did match some of the symptoms, so I had asked my primary care doctor at the time and she had said no. I had passed the age where I would just be getting symptoms. So she referred me to a neurologist. And then I thought maybe I had a tumor, a brain tumor.

How did it feel to get the Parkinson’s diagnosis?

I was shocked. Shocked. Like I said, never in the sense of “Why me?” or anything like that. I was happy, in a way, that it wasn’t a brain tumor. I know that people can live for X amount of years with Parkinson’s. It’s no guarantee that I couldn’t have a massive heart attack before, and that would be my demise, as opposed to a symptom of Parkinson’s or a side effect or Parkinson’s.

Had you known anyone who had Parkinson’s?

No. I didn’t really start hearing about it until the celebrities — Michael J. Fox, Muhammad Ali. I would see people that might’ve had tremors or issues with walking or something like that, but I didn’t really know what they had. And the people that I did know had MS, and they were all women.

How did you break the news to your family?

First person I told was my sister, because we’re very, very close. My husband, he’ll hear what you’re saying but he won’t comment a whole lot. My sister would get to the point where she was annoying, calling me. We talk twice a day anyway, but she was calling me more frequently than that. I knew it would be upsetting to her, but we’ve been through worse, because her daughter was hit by a bus when she was 12 years old and died. To me, we will never experience anything worse than that. We lived and managed to come back from that, but you never get over that. So to me, if it’s something with the children, there can be nothing worse than that. So this was manageable. People were going to be shocked because no one thought… my boss, right up until the day I left the job, she said, “I still can’t believe that you have Parkinson’s.”

Were you afraid when you first got the diagnosis?

I’d say shock was first and then there was fear. But I had not heard of anyone just immediately dying from Parkinson’s. My fear came more from the side effects that come from this disease and, even though there are multiple side effects, I was obsessed with the fear of falling. Not everybody with Parkinson’s has the same symptoms, necessarily. Some people may never experience it. But I experienced where it seemed like my body wanted to go backwards, walk backwards, which, of course, if you’re already unsteady, walking backwards certainly is not an ideal thing. It seemed like the body wanted to do what it wanted to do. 

You kept working for a few years after your diagnosis. How did your symptoms play out at work, and did you have to make any adjustments?

Walking was the issue that I realized if anyone noticed anything, that would be what they would notice. So a couple of times when a partner would be walking behind me, I would stop as if I had to adjust my shoe because by a certain time of the day, around four o’clock, I was starting the wind down. That “off” period was coming. It affected my right side more. I would be dragging my right foot and leg. By five o’clock, my voice would have a quivering to it. I didn’t want anyone to basically feel that I wouldn’t be able to do my job. And then the typing. I would find that even though I didn’t have regular, steady tremors, I could have an involuntary tremor that would come, and hit just the wrong key. 

Do you have any advice for others who are just getting started navigating a Parkinson’s diagnosis or have been going through it for years?

Definitely make sure that you are very comfortable with your neurologist — with all the doctors, really, but I have found with Parkinson’s, it’s the neurologist who’s going to be the lead on that. Ask the questions. There’s no question that’s ridiculous. And if you’re made to feel that way, I suggest getting another neurologist. 

How has Parkinson’s shifted your relationship to your own body, especially when you’re not able to predict its movements or rely on it in the same way that you could before? Has that been difficult for you?

Oh yeah, like I said, especially the walking. That has really been almost traumatic because of the associated fear of falling, because I can’t walk as far as I used to. I can walk for a good long time in the supermarket because I have the cart and I’m holding on to the cart, so I feel secure. I have a cane that I’ve used a number of times, especially when I did travel, before I stopped traveling. But that didn’t seem to give me the same type of security and feeling of security that a shopping cart does. So for me that’s been the most difficult adjusting to — and I know it won’t get better, it won’t improve, but we try to stabilize.

It seems to me you’re a very practical person, and you have a sense of peace about these things. Is that true?

That’s one of the biggest things: my faith. I don’t fear death. Would I like to live another 10 years? Yes, but I’d like that to be with some modicum quality of life. I know that many people with Parkinson’s, the speech eventually goes, and they’re not home unless you have private care. I realize the deterioration that comes with it. But I’m 66. Do I want to be 96? I think I could honestly say no, considering all the things that I have. It’s not just about living to be this age, it’s about how long can I live with some type of quality of life? 

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STAT’s coverage of chronic health issues is supported by a grant from Bloomberg Philanthropies. Our financial supporters are not involved in any decisions about our journalism.