Poet’s moving experience of young onset Parkinson’s

Dr Kimberly Campanello has penned a moving poem about living with young onset Parkinson’s.

Headshot of Dr Kimberly Campanello alongside a separate image of Dr Campanello performing poetry.

Kimberly, an accomplished poet and Associate Professor of Creative Writing in the School of English at Leeds, has now spoken about her experiences to mark World Parkinson’s Day, which takes place on 11 April every year to raise awareness of the condition.

Moving Nowhere Here’ was written whilst Kimberly was awaiting diagnosis and focuses on the feeling of being stuck as she was undergoing various tests, waiting for clarity and treatment.

Kimberly has young onset Parkinson’s – a neurological condition that causes problems, mainly with movement, that get worse over time. 

She was diagnosed in 2021 after several years of her symptoms being associated with other issues, such as nerve damage and stress, partly because it's uncommon to see Parkinson’s in people younger than 50.

About 145,000 people in the UK have Parkinson’s and it’s the fastest-growing neurological condition in the world. Currently, there’s no cure but drugs can treat some of the symptoms – though they can come with side effects.

Kimberly said: “One of the things that’s difficult with any invisible illness or disability is that nobody knows what you’re experiencing. 

“Sometimes, it can be excruciating for me to cross a room – my legs become stiff and it’s like I’m walking through cement. My tremor is the least of my problems, but people often assume otherwise.”

Sleep disturbances

In a passage of the poem, Kimberly describes the sleep disturbances she experienced that are an early sign of Parkinson’s:

begins with shouting
in sleep I am naked
on the carpet in a power stance
sensing an army nearby
I am charging the ghost
hanging on the back of the door
I am trapped inside the Shimmer
of a spice cupboard
boxed into fetal position
between jars filled with dried Leaves

Excerpt from ‘Moving Nowhere Here’ by Dr Kimberly Campanello, published in the major literary magazine, Granta

Kimberly said: “After an intense marking period during the pandemic that was affected by my undiagnosed Parkinson’s symptoms, I began to feel like I’d lost my touch at work and in day-to-day life.

“I eventually saw a neurologist and he told me, ‘If you were 70, I would diagnose you with Parkinson’s right now, but because of your age and your gender, I need to do some more tests first’.”

Diagnosis and support

After two months of further tests, Kimberly’s diagnosis was confirmed. She said the additional stress of further testing is a common problem faced by people with young onset Parkinson’s.

When Kimberly returned to work, The University’s Staff Counselling and Psychological Support Service helped her to work through the difficult feelings that came after diagnosis, and Kimberly said support from her line manager, colleagues and her trade union representative have been invaluable .

She also sought support from the charity Parkinson’s UK. Her neurologist assigned her a Parkinson’s nurse to help with day-to-day life and advise on medication. 

This year, the charity marked World Parkinson’s Day by celebrating everything ‘bright and brilliant’ within the community and beyond.

For Kimberly, this includes her writing. She said that “it has always been important to me because it helps me understand and express complex ideas, feelings and states of being. It makes sense that I would grapple with my experience of Parkinson’s in my work.”

Parkinson’s UK offers support to everyone affected by Parkinson’s and campaigns for fair treatment and better services for them. You can find out more about Parkinson’s UK by visiting the charity’s website.

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