Podcast: Lessons learned from the pandemic

How has Covid-19 impacted the global Parkinson’s disease community? In a new podcast episode, sponsored by Kyowa Kirin International, four people with the condition reflect on how life has changed since the pandemic – and the lessons they’ll be taking forward

The Covid-19 pandemic has been an unsettling time for everyone. But for people with Parkinson’s – likely to be at greater risk of severe illness from the virus – there was an added layer of uncertainty.

“The first reaction from my side was ‘I have to protect myself and my family from getting infected,’” says Jens Greve, a 53-year-old CEO based in Germany who was diagnosed with Parkinson’s in 2013. For Jens, protecting himself from Covid-19 was serious matter. “One of my symptoms is when I have bradykinesia, the slowness of movement,” he explains. “This affects my breathing as well.”

The risk the virus poses to people with Parkinson’s was something Clare Addison, a nurse based in Surrey, UK, was also very aware of in the early days of the pandemic. Clare was working at her hospital as “part of the team that was preparing the hospital for what was anticipated as a tsunami of very sick people.”

Clare’s vulnerable status meant she had to adapt her role to “deliver support and help in a different way: remotely.”  But she admits to feeling guilty while her colleagues “were out there, fighting the war, so to speak.”

“It was all this continuous state of alert, of anxiety,” says Fulvio Capitanio, a coordinator for United Against Parkinson’s, based in Barcelona, Spain. He faced a hugely challenging time when his wife contracted Covid-19, leaving her hospitalised: “That made me feel more anxious and more nervous about what it’s like for people with Parkinson’s.”

For Dr Maren Neumann-Aukthun, a former veterinarian based in Germany, isolation had an impact on her motor symptoms in particular – and social distancing became a struggle. “If you are locked down and stay calm, your symptoms get much worse,” she explains. “For your head it is better, but not for your movement.”

Learning to live in lockdown

Despite this period of immense anxiety, our podcast guests acknowledged that the last two years have had some unexpected silver linings. Clare says she discovered “a whole opportunity to revisit home life” when the UK went into lockdown.

“We were very fortunate because we live in a beautiful rural area,” she says. With her family, she spent her time creating a new daily exercise routine, walking in the countryside, and planning quiz nights with friends online. Having this structure in place meant the family “took a lot more time planning our lives and enjoying ourselves.”

“We experienced the same thing,” says Jens. “All of us were more focused on ourselves as a family, and we rediscovered ourselves”. Like Clare, he says group exercise became an important feature of lockdown life: “We learned from each other and watched out for each other, so this was quite a nice time.”

For Maren, the pandemic was an “opportunity to think just about what I need. And that was the first time in my life I was focused on myself.” Her passion for art inspired her to pursue a ‘virtual’ career – which led to being named as an ambassador for non-profit organisation, Parkinson’s Art. “That pushed me up again,” she adds. “I was so happy about that.”

Motivation also became crucial to Fulvio, when the pandemic halted the progress of his Parkinson’s support groups’ in-person initiatives. Walking his dog every day became an escape, but Fulvio struggled to maintain a weekly routine. “You have to find the motivation to restart again at any moment,” he says. “It’s kind of a daily battle.”

He tells Maren that he had to be careful about the hobbies he took up at home, joking that his wife banned him from singing, “because I’m very bad at it. She said, ‘I’m going to file for divorce if you start singing’.”

“We’re seeing a much more cohesive and growing Parkinson’s movement”

Looking to the future, the group agrees that remote communication will likely continue to be a part of their Parkinson’s care – especially as technology advances.

For Fulvio, this change provides an opportunity to help those without easy access to a healthcare professional, as doctors can “reach the more inaccessible [and connect them] to the mainstream.”

The value of technology in connecting with others was a key lesson Clare learned during the pandemic. “The geographical barriers started to break down,” she explains. “Now you could meet with people who were on the other side of the world.”

Yet while some barriers have been broken down, she argues that this shift has “created a bigger divide within Parkinson’s community, because there are still a lot of people who haven’t got access to technology.” Moving forward, she says people need to “do a lot more now, to support members of our community who aren’t connected in the way that they need to be to benefit like we’ve been able to benefit.”

The quick development of Covid-19 vaccines gives the group hope for what can be achieved in Parkinson’s research, and Jens says he hopes that there will be “the chance to invest more money and time and resources.”

“We’re seeing a much more cohesive and growing Parkinson’s movement internationally,” adds Clare. “With a louder voice, surely we can start to galvanise this.”

Maren agrees: “One year is not enough to change the world. But we can change us… and so that makes me happy and optimistic.”

This article is sponsored by Kyowa Kirin International. The information in this article is given for information purposes only and does not represent an endorsement by Parkinson’s Europe of any particular treatments, products or companies. This article is not a substitute for advice from your doctor, pharmacist or other healthcare professional. Parkinson’s Life makes no representations or warranties of any kind, express or implied, about the completeness or accuracy of information provided.

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