With a global pandemic causing lockdowns, social distancing and major disruption to daily life, you could be forgiven for expecting this year’s World Parkinson’s Disease Day (WPDD) to be a little quieter than usual.
However, the European Parkinson’s community rallied together to mark the day on 11 April 2020, despite the challenges faced, raising funds and awareness.
The usual live events, celebrations and conferences marking WPDD may have been postponed or cancelled this year due to COVID-19, but organisations rose to the occasion by delivering festivities and support virtually to ensure people with Parkinson’s (PwPs) stood united.
Parkinson’s Europe discovered how some of its member organisations marked the day this year:
In Belgium, the Vlaamse Parkinson Liga VZW teamed up with Medinet.tv to hold a virtual conference on 11 April, in collaboration with Parki’s Kookatelier and Parkili.be. The event covered a range of topics, including Parkinson’s in times of the coronavirus: psychosocial aspects, COVID-19: a special medical challenge for people with Parkinson’s? and healthy eating.
Switching from its usual live celebrations in major city squares, Croatia’s Udruga Parkinson I Mi (Parkinson and Us) association launched an online campaign called #parkinsonimiudokorone, to celebrate their first virtual World Parkinson’s Day. The campaign – meaning ‘Parkinson’s and us in corona-time’ included educational articles, tips and videos for home exercise, singing, drawing, dancing, relaxing and positive thoughts posted on the association’s Facebook page and website.
“It is essential for Parkinson’s patients to keep their mind and body fit at home in conditions of COVID-19 pandemic and isolation. We need to be positive (this will pass) and creative,” said Vladimira Vuletic, president of the Parkinson and Us Association. “This period should be used to remind ourselves of our core values, of helping one another and of our fellowship, and the association is here to help.”
In Finland, Parkinsonliitto ry postponed its samba competition until next year, but still shared a number of videos showing various dance classes taking part in the dance challenge.
The association also shared a photo message of hope and support on Facebook, saying: “Today is the day we remember everyone affected by Parkinson’s around the world. There are about 16,000 people with Parkinson’s in Finland alone. April 11 was the birthday of James Parkinson, who described the illness. Happy World Parkinson’s Day”.
On the day, association France Parkinson held a video conference with neurologist professor Philippe Damier and physiotherapist Hélène Souty, now available on YouTube. The pair answered questions about the impact of COVID-19 on Parkinson’s, and spoke about practising physical exercises for Parkinson’s and the neuroprotective effect this has on slowing the progression of Parkinson’s.
The association has also developed a new website, Dopamine.care, to help its members throughout the COVID-19 crisis. Regularly updated with new ideas from members, the website features ways to stay active and to keep in touch with the community. Suggestions include artistic and cultural activities, creative workshops and exercises such as gymnastics and yoga.
Iceland’s Parkinsonsamtökin marked the occasion by offering PwPs online occupational therapy, online and phone support meetings with a social worker and family therapist, plus online meetings and chat groups throughout April. On the day itself, they reposted last year’s interview with Parkinsonsamtökin’s chairperson Vilborg Jónsdóttir on Facebook.
The Israel Parkinson Association organised a series of webinars on different topics throughout April.
Parkinson Italia ONLUS also took their activities online, marking the occasion with a free Dance Well project event for all PwPs, called #citofonareDanceWell. The event involved several national Parkinson’s associations, including Parkinson Italia ONLUS, in collaboration with the Italian Young Parkinsonian Association (AIGP). Participants were invited to dance at home, connecting virtually via Zoom, with the Dance Well dancers.
In Lithuania, the Lietuvos Parkinsono Ligos Draugija association shared a moving poem written by Liucija Samkuviene to celebrate the occasion.
Also marking the day with online activity was the Malta Parkinson’s Disease Association (MPDA) in Malta, posting photos of their committee and members dressing in grey on social media to raise awareness of the condition.
In the Netherlands, Parkinson Vereniging joined Prof Bastiaan Bloem and ParkinsonNet for a special online event on World Parkinson’s Day. A special edition of ParkinsonTV, in which video messages from several PwPs and carers were created to share how they cope with the circumstances due to COVID-19. The association also made a special page on their website with links and articles related to WPDD.
Norway’s Norges Parkinsonforbund celebrated on social media, posting a special message of unity from federation leader Trygve Andersen on World Parkinson’s Day. The association told their followers: “We are still here for each other, we stand together against Parkinson’s, together against loneliness, together against uncertainty. Together, we should all come out stronger at the other end of the corona situation.”
In Portugal, a video to raise awareness of Parkinson’s and celebrate World Parkinson’s Day 2020 was created by the Associação Portuguesa de Doentes de Parkinson (APDPk) with the Sociedade Portuguesa de Neurocirurgia, Sociedade Portuguesa das Doenças do Movimento (SPNC) and Campus Neurológico Sénior Academy (CNS).
Slovenia’s Parkinson’s organisation, Društvo Trepetlika, offered support sessions over the telephone throughout April. The association’s president, Cvetka Pavlina Likar, also appeared on national television via Skype, to talk about the condition and activities at Trepetlika. The organisation said a 13-minute video of their activities will also be broadcast on TV.
In Spain, the Federación Española de Párkinson (FEP) complemented its #INVISIBLESIGNS campaign, with a video message from the organisation’s president, who read the Federation’s manifesto on World Parkinson’s Day.
In Sweden, ParkinsonFörbundet marked World Parkinson’s Day with a virtual seminar for PwPs on 3 April. The event took place in collaboration with Parkinson Västerbotten, featuring lectures and a gym session.
A television interview with ParkinsonFörbundet chairperson Eleonor Högström was shared on social media.
A photo contest was held by Parkinson Schweiz to mark the day in Switzerland. Participants were asked to send in a picture of something representing their own personal strength, and the three best photos will be published on the association’s journal in September.
Swiss young-onset Parkinson’s group Move4YPD ran a social media awareness campaign for World Parkinson’s Day, asking people to share images of their ‘Parkinson’s Disease Athletes’ for 24 hours. The images, created by an artist whose mother has Parkinson’s, show five different sports known to help PwPs, including running and boxing.
Parkinson’s UK worked together with The Cure Parkinson’s Trust to create a map of stories, featuring different people’s experience of Parkinson’s from around the UK. The project included testimonies from a variety of locations, ranging from the Scottish Isle of Skye to Ashford, Kent. It has also launched an emergency appeal to give critical support to people with Parkinson’s, their families, friends and carers during the coronavirus crisis.
Online community Parkinson’s Concierge launched an appeal to raise funds for The Cure Parkinson’s Trust, working with poet and PwP Shelley Edwards, who recently underwent deep brain stimulation (DBS) surgery. Shelley wrote the lyrics for a song, which Parkinson’s Concierge promoted with a video to mark the day.