“You keep moving until something stops you.” — Sue Goldie
Sue Goldie is
- A Harvard professor.
- The director of a research center and a teaching center at the school.
- A recipient of a MacArthur Foundation Genius Grant for “applying the tools of decision science to evaluate the clinical benefits, public health impact, and cost-effectiveness of alternative preventive and treatment interventions for viruses that are major public health problems.”
- A triathelete — something she took up in her late fifties.
I’m guessing she’s smarter than most of us, more disciplined than most, and has connections we can only dream of.
Parkinson’s doesn’t care about any of that.
According to a powerful piece by John Branch in the New York Times, Sue Goldie first noticed symptoms and received her diagnosis in 2021.
Since that diagnosis, Parkinson’s has put her through her own unique version of the same challenges the rest of us face.
A constantly changing potpourri of symptoms — some visible, some not. Stress, which can make the symptoms worse, which can cause more stress. Agonizing questions about who to tell, and when. Fear of professional repercussions when her employer and colleagues find out. And the realization that the disease is, as she put it, a “one-way train.”
The article is sometimes uplifting, sometimes depressing. In spite of all of her intelligence and resources, the disease is, as she put it, a “one-way train.”
But there are useful lessons scattered throughout the story.
There’s no one right answer to the question of who to tell, and when. I told my employer and co-workers within a couple of weeks of diagnosis. Goldie held off for four years, worried about the impact the news would have on her reputation and professional opportunities.
The Michael J. Fox Foundation recently released a podcast episode on navigating the workplace with Parkinson’s. It’s worth a listen. One piece of advice stuck with me — consult an employment lawyer to get a handle on what your rights are before telling your employer.
Adapt your approach when necessary. She now “she draws and writes less than she used to during her lectures and videos, relying instead on a cache of prewritten, predrawn cutouts that she can move around in front of her.”
Change the equipment. We are lucky to live in a world where helpful tools abound. I’m a big fan of the left-handed mouse and voice-to-text typing. For Goldie: “Pink tape on her hands to provide visual clues of her swim stroke. Special gear shifters and a long tube rigged as a straw on her bike’s water bottle because she no longer has the dexterity and balance to take a hand off the handlebars.”
It’s okay to change your goals. Initially, Goldie insisted on completing full Ironman triathalons. Over time, she and her coaches conclude that a race that can take up to 17 hours is too risky, given her physical and medication challenges. So she switches to “half Ironman” competitions.
Exercise is beneficial, but there are limits.* Goldie trains for and competes in triathalons — a grueling sport for any age, but perhaps especially so for person in her 60’s with Parkinson’s. Branch says Goldie believes that this is benefiting her:
It’s difficult, if not impossible, to measure the effect of her exercise against the silent creep of Parkinson’s. There are so many variables, and she is just one person. But she has little doubt that she would be much worse off without triathlon.
But her symptoms are getting worse, and she’s been injured several times.
Overtraining can cause serious health problems for any athlete. And Parkinson’s researchers have found that too much exercise “can lead to weight loss, fatigue, and an increase in off episodes, periods when symptoms return between treatment doses.“
So this passage from the Times piece is troubling:
Sue is struggling to manage wild dopamine swings with medications and dosages. She is recovering from a string of serious injuries she endured in 2023 from falls and collisions — a broken clavicle, a broken rib, an orbital fracture from smashing into a two-by-four sticking out of a truck bed during a training run. Most of them, she thinks, would not have happened without Parkinson’s.
Goldie’s doctors don’t appear in the article; we don’t get any sense of what they think. I hope the risks of overtraining are at least an occasional topic of conversation within her care team.
It’s our game, but Parkinson’s writes the rules — and can change them without notice at any time. Goldie is often struggling behind closed doors to perform tasks that once were simple and natural for her. Her students and many of her colleagues only see the final performance, and are unaware of the sweat and strain necessary to make the performance happen.
Like many of us, Sue Goldie fights each day to maintain the things that brings meaning to her life and career — and to make it look easy. As she tells John Branch, “You have no idea how hard it is to trick you into thinking I’m OK.”
Keep moving.
*Special thanks to Sharon Krischer, writer of the Twitchy Woman blog, whose post got me thinking about this issue.
Bonus for Those Who Read to the Bottom
A very enthusiastic rendition of “If You Knew Susie.”
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Reggae Pink Floyd, by Alpha Blondy.
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I heard the Clash’s rendition of “Police on My Back” at the gym the other day (thanks, Dave!). Here’s the original by The Equals, featuring a very young Eddy Grant.
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