World Parkinson’s Day is celebrated on 11 April every year to raise awareness of the condition across the world. The day marks the birthday of James Parkinson, a surgeon and political activist who published ‘An essay on the Shaking Palsy’ in 1817, which established Parkinson’s as a recognised medical condition. Find out more about the history of Parkinson’s here.
Parkinson’s and the pandemic: your hopes and fears this World Parkinson’s Day
Author: Simge Eva DoganPublished: 9 April 2020
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To mark World Parkinson’s Day 2020, we asked our readers around the world to share a video highlighting how they’ve been impacted by the coronavirus pandemic and rally together to support each other at a very challenging time. The response was overwhelming – read on for some of the highlights
April 11 is World Parkinson’s Day – an annual event to raise awareness of the condition which affects more than 10 million people across the globe. This year, amid the coronavirus pandemic, we invited people in the Parkinson’s community to shed a light on how they’ve been affected, what coping strategies are helping them get through this challenging time – and their hopes for 2020.
The response has been overwhelming, with readers from Barbados to Finland and Ireland to New Zealand sharing how their lives, routines and Parkinson’s symptoms have been affected by Covid-19 – and sending messages of support and unity.
“We’ve been told we’re at a high risk”
Coronavirus is particularly worrying for people living with Parkinson’s, who are considered at high risk of severe illness if they are infected by the virus. So, we asked our readers to explain how they have been affected mentally and physically, what their fears and concerns are – and to share their attitudes toward the year ahead.
Julie Walker, a UK writer with Parkinson’s who’s currently self-isolating, said: “I worry if I had to go to hospital, about Parkinson’s disease being misunderstood, and so I carry my prescription medication and wear a medical ID bracelet. I worry that I’m not getting enough exercise by staying inside and spending a lot of time on the computer.”
Asked about her hopes for the year ahead, she said: “Obviously, a cure for Parkinson’s … but that’s a no brainer.”
Kitty Fitton, a comedian, blogger and business owner who was diagnosed aged 41 and lives in New Zealand with her husband and four children, said: “I think it’s quite concerning because we’ve been told that we’re at a high risk and then we’ve been told that if you’re healthy, you should be okay. I’ve got young onset Parkinson’s, so I’m kind of hoping that I’ll be okay, but I don’t really plan on finding out.”
Soania Mathur, a physician from Canada, who was diagnosed aged 27, said: “The coronavirus pandemic really hasn’t affected me physically but more mentally, because of the fear of the unknown and what the future holds, and also self-isolation. What’s getting me through this time is strong family support and a real strong adherence to my self-care routine.
“My hope for the Parkinson’s community in 2020 is first, we come out of this pandemic happy and healthy, second that we continue to improve our quality of life and third, we get one step closer to a cure.”
Richelle Flanagan, a dietician from Ireland who has Parkinson’s and is self-isolating with her family, said: “One of the hardest things about the coronavirus has been being cooped up in a two-bed apartment with four of us. Everyone has their needs to be met, so stress levels can be quite high. We might be considered at higher risk if we do get the Covid-19 virus and my biggest concern is with regard to swallow muscles and dealing with being on a respirator if that was needed.
“One of my hopes for the Parkinson’s community is that out of this Covid-19 pandemic, we can see what research can be done and how much can be done when all minds are put to the task. I think it really is very inspiring for research for Parkinson’s, that we really need to apply the same principles and drive forward for a way to slow the progression or cure it.”
“Stay in your routine as much as possible”
As many people are self-isolating during the pandemic, our readers shared why looking after your mental health and wellbeing should be a priority – and their top tips on how to stay active, social and healthy.
Amy Mallett, a UK musician and composer who runs creative initiatives for people living with Parkinson’s, explained that her classes have been suspended due to the pandemic, and said: “The best piece of advice I would give to the Parkinson’s community right now would be to keep singing, keep moving, keep your creativity going with whatever resources you have at your disposal.”
Emmi Nuppula, a communications responsible at The Finnish Parkinson Association, shared how her team have been providing support through online resources: “My colleagues have started ‘Tip of the Week’. We send a message to all our members once a week sharing tips about what kind of exercises you can do at home, baking tips and more. The idea is to send positive messages and make sure they know we are there for them and that they are not alone.”
John Dean, a US speech-language pathologist who specialises in helping people with Parkinson’s to communicate, said: “I know we’re all doing what we can to flatten to curve for Covid-19 but for many of us that means staying indoors, not going to your exercise classes and practicing social distancing. That’s all really important and we need to continue doing that. As a speech-language pathologist, my concern is that you might not be communicating as much as you were before. So, I want you to take a moment to pick up your phone and find some people to talk to.”
Jonny Acheson, a UK doctor living with Parkinson’s, who has been working at home due to the increased risk between the condition and Covid-19, said: “My advice is, if you’re at home, to try to stay in your routine as much as possible, especially your exercise routine. And it’s important that although we are socially distancing, that you keep social with the online community.”
It’s time to “loudly turn the focus of the world onto Parkinson’s”
Looking beyond the coronavirus pandemic, our readers emphasised the need to increase public and political awareness of Parkinson’s as an urgent health challenge.
Cherry Vogt-Ward, founder and president of The Barbados Parkinson’s Trust and Support Group, who diagnosed with Parkinson’s 13 years ago, said: “My hope is that governments in the developing countries, especially in the Caribbean and Latin American nations, take more responsibility in spreading Parkinson’s awareness and commit to offering the best possible care for people suffering from these challenges.”
Dominic Graham, operations director at the European Parkinson’s Disease Association said:
“I think the Parkinson’s community needs resources to help them manage the social and physical restrictions currently in place across the world. Fortunately, this seems to be happening with all sorts of exercise programmes, webinars, videos etc being made available. But it also needs a political voice to move the needs of the Parkinson’s community further up the agenda. This won’t be easy with parliaments the world over in chaos, but it’s vital our community is heard.
“If a pandemic like this doesn’t make us question how we live our lives – and support vulnerable people better – then I struggle to think of what will.”
Larry Gifford, a Canada-based radio broadcaster who has been living with Parkinson’s since 2017, said: “When we are through with Covid-19, when we have figured out how to get past this and emerge on the other side, I really hope that we can quickly and passionately and loudly turn the focus of the world onto Parkinson’s.”
How have you been affected by the coronavirus?
We will be doing all we can to share useful information about Covid-19 with you as the situation develops – and we need your help. To share your experience or tell us the topics you want Parkinson’s Life to cover during the pandemic, please leave a comment or email firstname.lastname@example.org.
For more information about Covid-19 please visit the EPDA website.
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