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2020 has been a challenging year for the Parkinson’s community – but at Parkinson’s Life we’ve been inspired by the countless stories we’ve heard from readers, researchers and advocates around the world. We share seven of our favourites
The coronavirus crisis has disrupted many aspects of our lives – and has been particularly concerning for people with Parkinson’s disease who face a high risk of severe illness if they are infected by the virus.
To mark World Parkinson’s Day in a difficult year, we asked our readers and contributors the world over to share how they’d been impacted by the pandemic.
We received incredible responses from members of the global Parkinson’s community, from Barbados to Finland and Ireland to New Zealand. This feature brought together their experiences, advice and messages of hope for the future.
Did you know that an estimated three million women around the world live with Parkinson’s disease? As part of our #WomenAndParkinson’s series, we talked to four women with the condition, including blogger Allison Toepperwein and comedian Kitty Fitton, about their experience of the pandemic.
From sharing how they coped with lockdown, to ways of staying in touch with friends virtually, to managing working from home – each of our interviewees offered an honest account of the challenges they’d faced during Covid-19.
In July, Dayne Beccano-Kelly, a career development fellow in Neurobiology at the University of Oxford, UK, shared his experiences working in Parkinson’s research – and highlighted that a lack diversity in clinical studies is failing black people living with the condition.
“In certain parts of the world, it’s common for black patients to not get as much time with doctors, and for their symptoms to be deemed milder than somebody of Caucasian descent,” he said.
“We need more global information about Parkinson’s in those underserved groups. It’s important for the black community that we’re informed enough to notice these non-motor symptoms and seek help.”
As the Tour de France drew to a close, we spoke to Davis Phinney – the inspirational retired professional cyclist and non-profit founder, who discovered he had Parkinson’s at the age of 40.
He shared his experience of diagnosis and what had motivated him to set up the Davis Phinney Foundation to help others with the condition.
“I don’t spend much time, if any, musing about things like a cure for Parkinson’s,” he said. “I prefer to focus on the areas that I can positively affect – here and now. I love the Parkinson’s community and there’s too many of us out there who are struggling. My ultimate hope is to reach out to them and be part of a solution for those in need.”
Could a focus on the individual experiences of people with Parkinson’s be the key to finding a cure? Sohini Chowdhury, deputy CEO at the Michael J Fox Foundation, discussed some of the most fascinating areas of Parkinson’s disease research – and told us that traditional ideas of what a cure could look like may need to be reassessed.
She explained: “I think it’s important to remember that a cure can mean different things to different people […] There’s a recognition now that Parkinson’s disease is not one disease experience. It is a disease experience that is very variable, so we have to be open minded because a cure for one person could be very different than a cure for another person.”
This November, we were delighted to find out that the Parkinson’s Life podcast – a space for people with Parkinson’s to talk honestly about life with the condition – had been named the ‘Best Global Audio Campaign of the Year’ at the Global Content Awards.
We took the opportunity to revisit each of the six episodes, which tackle topics including parenting, work and creativity – and reflect on the contributions of the guests who brought the podcast to life.
As the end of the year approached, Veronica Clark, the new president of the European Parkinson’s Disease Association (EPDA), spoke to us about her first few months in the role – and her personal connection to the Parkinson’s community.
Telling us what a day at the EPDA looks like and her experiences supporting her mother, who has Parkinson’s, Veronica shared her passion for improving the lives of people living with the condition.
And, despite the challenges the Parkinson’s community has faced in 2020, she explained that she remains hopeful about the future, saying: “People with Parkinson’s deserve to know that people are fighting for a better future and that, yes, there is hope if we continue to work together in a united way. We need to keep people with Parkinson’s at the centre of everything we do.”
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