Leeds academic shares her life-changing Parkinson's diagnosis at the age of just 41

Dr Kimberley Campanello, an accomplished poet and Associate Professor at the University of Leeds, was diagnosed with the neurological condition in 2021 at the age of 41.

As today marks World Parkinson's Day she has penned a moving poem about her experience, focusing on feeling 'stuck' while awaiting tests and treatment.

Dr Campanello, an Associate Professor of Creative Writing at the University's School of English, said the diagnosis at such a young age had been a "lot to take in".

And as she shares her story today, she said: "I want to be the person I wanted to see, when I went through it. I wanted to see a young, professional woman, who is upfront about the difficulties it brings.

"It does shock you. It does take away from you. It makes simple things really difficult."

Young onset Parkinson’s is a neurological condition with many challenges, primarily with movement, that progressively worsen with time.

Parkinson's is uncommon in people younger than 50, and for several years before her diagnosis Dr Campanello's symptoms were put down to stress or nerve damage. Then lockdowns hit, and appointments with a neurologist were delayed.

"Everybody was experiencing so much," she said. "The symptoms I had were put down to stress or working from my kitchen table at home. But I wasn't bouncing back - something was really wrong.

"It was a lot to take in," she added. "I was coming out of restrictions, into a diagnosis that was challenging."

With invisible illnesses, she said, nobody knows what someone else is experiencing. People may see a tremor in her hand, but not the "excruciating" pain that can come just from crossing a room when her legs become stiff.

Dr Campanello's wrote ‘Moving Nowhere Here’ while she was awaiting diagnosis, with excerpts published in the major literary magazine Granta.

She said: "So many people with chronic illness do creative things. It's part of what makes us human, it gives us the power to make something."

And as a self-professed 'child of the 80s', Dr Campanello said that while she knew of the condition, having long followed Michael J Fox's journey after he was diagnosed at age 29, she wasn't as aware of it as she could have been.

She is now calling for more awareness and research. She said she is always upfront with students and colleagues. They are "brilliant", she said, and she is fortunate in her profession, with the university also offering a counselling service.

On returning to work, she had sought support from Parkinson's UK, with a nurse to help with day-to-day life and advise on medication.

This World Parkinson's Day the charity is calling on people to be "bright and brilliant" and write their own short poem about the impact of Parkinson's.

Fundraising director Paul Jackson-Clark said: "A Parkinson’s diagnosis can feel like the rug has been pulled out from under you and be an isolating experience, but sharing experiences like this shows just how supportive, inclusive and creative the community is.”