Irish-American with early-onset Parkinson's speaks about living with the condition at 42

York-based Irish-American Kimberly Campanello, 42, who was diagnosed with early-onset Parkinson’s in 2021, says not knowing “what the future holds” has been one of the hardest things about living with the condition. 

“You really don’t know how exactly it’s going to manifest, because Parkinson’s has so many symptoms," she said. "You don’t know whether medication will work for you – and if it does, for how long? You don’t know if you’re going to need something like deep brain stimulation [a surgical treatment option].

“So, you’re kind of like, what’s the next 10 years going to look like? It changes everything about loads of things. How you plan, how you think about what you might be doing.”

How it would impact her work as a poet and associate professor of creative writing at University of Leeds was a big concern.

“And that’s a continuous fear,” she said. 

“I teach and give poetry readings and I get in front of hundreds of people, and Parkinson’s can be really hard to control – you lose control of the nervous system – and I have a tremor.”

When returning to in-person teaching and events after lockdown, she was initially fearful about getting back out there. “And I still am – but I’m doing it anyway,” she shares.

“I am very open with my students about it, and with the public when I give a live poetry reading. There’s no point trying to conceal it. And my students have been brilliant, my colleagues, my head of school, my trade union, everybody’s been really supportive.” 

Campanello is keen to emphasise the importance of managing her Parkinson’s beyond medication. For example, being assigned a Parkinson’s nurse has been “invaluable”, and taking up an exercise regime that includes strength training and neuro-physiotherapy has been transformative – both for managing symptoms and providing a psychological boost.

These are largely things she’s had to reach out for herself. She knows “not everybody’s able to do that”, and postcode lotteries mean services can be hit and miss.

“I do feel I’m really privileged, in a way, I have a really good job, a lot of support. And I’m a noisy American academic, who uses language for a living. Not everybody has that. Part of why I want to do Parkinson’s advocacy is because I can do that.”

Creativity isn’t new for Campanello, but since her diagnosis, it’s taken on even greater meaning.

“Parkinson’s can have a clarifying factor – it makes you realise what’s really important – so it’s just made me love poetry even more,” says Campanello, who recently had a poem about her Parkinson’s, called Moving Nowhere Here, published in literary magazine Granta.

“I already loved it, but now it is this wonderful elixir, a bit like exercise.”

Image: Kimberly Campanello with husband Jon Hughes (Kimberly Campanello/Handout/PA)