Adjusting to the reality of an incurable disease is hard, never mind talking about it. Even so, Sue Goldie, the Roger Irving Lee Professor of Public Health at Harvard’s T.H. Chan School of Public Health, decided to share her journey with a stranger.

In October, Goldie, who was diagnosed with Parkinson’s disease in 2021, was the subject of a New York Times feature by John Branch, whom she allowed to follow her life for more than two years. This month, she spoke at the Chan School about fighting the disease and her decision to make that fight public.

“It was not uncomplicated,” Goldie said of her decision to open her life to Branch. “I think it requires a lot of mutual trust to let someone in your life to see you at those raw moments and you really don’t know what they are going to write … I just felt this sheer responsibility to try to speak out loud and to try to give voice to what is so difficult.”

Parkinson’s disease stems from a depletion of dopamine in the brain. Motor issues include tremors, rigidity, and slowness of movement. As the disease worsens, it can cause problems with balance and gait. But the condition runs much deeper than visible symptoms, Goldie noted.

“The one thing about Parkinson’s that is absolutely true is it plays out differently in everyone,” she said, pointing to wide variability in onset of symptoms and timeline.

For her, some initial symptoms appeared while she was training for her first Iron Man competition — a challenge her son had introduced her to.

“I couldn’t put my finger on it, but I just wasn’t feeling well,” she said.

Working with a coach, she continued to bike, run, and swim — all while juggling her regular courseload. Her coach started to notice some weakness on her left side. At the same time, Goldie noticed that her motivation at work was slipping. She was also experiencing a slight tremor.

“Just little signs,” she said. “That was what brought me finally to a neurologist.”

“There’s something about problem-solving that feels like you’re moving forward.”

Sue Goldie

After her diagnosis, Goldie kept training. She and her coach agreed: When the disease started to impose limits on what she could do, they would figure out case-by-case solutions.

In time, she added a long straw on her bike to save herself having to lean over to reach her water bottle. When she lost some mobility in her fingers, she switched to electronic shifting.

“There’s something about problem-solving that feels like you’re moving forward,” she said. “And it leaked over into my work world as well.”

The diagnosis brought deep anxiety over the potential impact on her academic endeavors.

“It’s really frightening to me to have cognitive effects from Parkinson’s,” she said. “I think when you’re at an academic institution, where the currency of your value is your thinking, the fear I had was about: What does this mean for my identity? What will people think?”

The antidote to her anxiety has been discovering new ways to do what she loves. One example: lectures. While Goldie always took pride in distilling complex ideas for students, her tremor started to get in the way.

“So I got an iPad, and I would draw ahead of time, and then I would cut pieces out,” she said. “I would move the pieces around instead of drawing.”

When she showed the technique to a group of high school teachers who had come for a workshop, they were impressed. “And it was just this example where something that was a workaround actually became this sort of pedagogical innovation,” Goldie said.

After the Times story was published, Goldie received hundreds of letters from patients who said they felt seen, and from others who told her that her story had helped them see loved ones better. She continues to be inspired by the response.

“The best way I can respect the fact that these individuals took time to write to me is to read every one and to try to listen and learn in terms of what I want to do next,” she said.