Sue Goldie, the Roger Irving Lee Professor of Public Health at Harvard T.H. Chan School of Public Health, spoke in March about her experience living with Parkinson’s disease and her decision to share her story publicly. Goldie was diagnosed with Parkinson’s in 2021 and allowed journalist John Branch from The New York Times to follow her life for over two years.
Goldie said it was a difficult decision to let someone into the private aspects of dealing with an incurable illness. “It was not uncomplicated,” Goldie said. “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 is caused by a loss of dopamine in the brain, leading to motor symptoms such as tremors, rigidity, slowness of movement, balance problems, and changes in gait. Goldie noted that the disease affects each person differently: “The one thing about Parkinson’s that is absolutely true is it plays out differently in everyone,” she said.
Goldie first noticed symptoms while training for an Iron Man competition introduced by her son. She continued athletic training even after diagnosis, adapting routines as needed when new limitations arose—such as using a long straw on her bike or switching gear-shifting methods due to finger mobility loss. “There’s something about problem-solving that feels like you’re moving forward,” she said.
Professionally, Goldie faced anxiety over how cognitive effects might impact her academic career at Harvard. She found new ways to teach despite challenges caused by tremors—preparing visual materials ahead of time instead of drawing live—and discovered these adaptations could be innovative for teaching others.
After The New York Times article appeared, Goldie received hundreds of letters from patients who felt understood or from people who gained new perspective on loved ones’ experiences. Reflecting on this response she said: “The best way I can respect the fact that these individuals took time to write to me is to read every one and try listen and learn in terms of what I want do next.”
