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12 new Parkinson’s books in English, Spanish, French and more

22 April 2025 By Verity Willcocks
Advice booksCroatiafranceGermanyGreecePortugalSpain

Our fourth round-up of books with Parkinson’s themes is a bumper one! Reflecting our broad audience across Europe, we have listed 12 books in Croatian, Greek, French, German, Spanish and Portuguese as well as English.

The topics covered include how to live well with Parkinson’s as well as inspiring personal accounts written by people with the condition.

If you’ve read a great new book about Parkinson’s or know about one that is due for release, please let us know – either tag us on social media, or send us an email with the details to [email protected].

Parkinson’s Books in English

A Protest Against Parkinson’s by Lucas S. Kanigan

A Protest Against Parkinson’s by Lucas S. Kanigan

In A Protest Against Parkinson’s, Kanigan delivers an unfiltered, deeply personal account of living with the condition.

Although he explores the frustrations, he also offers hope. Drawing on personal experience and the latest research, he discusses how carefully selected supplements, lifestyle changes and exercise have helped him reduce his symptoms.

A Protest Against Parkinson’s is also a rallying cry for those living with Parkinson’s to take control of their health, explore new possibilities, and find hope.

Buy a Kindle edition of the book for £9.99 (or the equivalent in your local currency) on Amazon

Elegance in Motion: A Parkinson’s Diva Journey of Faith and Perseverance by Maria De León

Elegance in Motion: A Parkinson’s Diva Journey of Faith and Perseverance by Maria De León

In this book, De León (aka the Parkinson’s Diva) shares her journey of perseverance and reinvention after facing a Parkinson’s diagnosis at the height of her career as a movement disorder specialist.

With this book De León wants to empower women with Parkinson’s and other chronic illnesses to embrace life fully.

Buy a Kindle edition of the book for £7.71 (or the equivalent in your local currency) on Amazon

Miles to Go Before I Sleep by Melissa Livingston

Miles to Go Before I Sleep by Melissa Livingston

In this collection of essays, Livingston, who has Young Onset Parkinson’s, highlights the challenges she faced after receiving her diagnosis. In sharing her struggles and triumphs, her words are a testament to hope, joy, the importance of community and the human spirit’s ability to shine in the face of hardship.

Buy a paperback edition of the book for £15.68 (or the equivalent in your local currency) on Amazon

Policing and Parkinson’s by Dr George Ackerman

Policing and Parkinson’s by Dr George Ackerman

In this book, Together For Sharon Parkinson’s advocate Dr George Ackerman highlights the need for training and awareness of the condition among the US police force.

Drawing on Ackerman’s unique perspective as a former police officer with a doctorate in criminal justice and from his experience caring for his mother, Sharon Riff Ackerman, who died from Parkinson’s in 2020, it includes accounts from both police officers and people with Parkinson’s.

Buy a Kindle edition of the book for £12 (or the equivalent in your local currency) on Amazon

This Is Me by Mark Edward Fuller

This Is Me by Mark Edward Fuller

A former journalist, Fuller was diagnosed with Parkinson’s 18 years ago at the age of 50. This Is Me is a collection of his poems. Fuller describes his poems – which cover a range of subjects – as “quirky and political”, adding that “poetry sustains the brain and the heart.”

The book’s artwork was created by Rene van Helsdingen, a jazz pianist and good friend of Fuller’s who also lives with Parkinson’s.

To buy a copy for €12.50 (including postage in the Netherlands), contact [email protected]

Parkinson’s Books in Croatian

Kreni Sad i Odmah (Start Now and Immediately) by Dejan Đuran

Kreni Sad i Odmah (Start Now and Immediately) by Dejan Đuran

After cycling almost 20,000 kilometres in four years on his electric bike, Đuran, who was diagnosed with Parkinson’s when he was 48, has written this inspiring 240-page book about the challenges of life on two wheels. He says of cycling: “It is not just a physical activity but a way to fight the progression of the disease and preserve my quality of life.”

Buy a paperback edition of the book for €18.50, plus postage, from Duran’s website Zivjetis Parkinsonom

Parkinson’s Books in French

Cartache by Bertrand Degreef

Cartache by Bertrand Degreef

This novel tells the story of Walter Rongbuck, a son caring for his father who has Parkinson’s.

Gradually, Walter sees his life transform, consumed by the delusions and hallucinations of a father who is disintegrating before his eyes.

***Readers should be aware that this novel includes plot points that some people in the Parkinson’s community may find highly controversial and distressing.***

Buy a paperback edition of the book for €24.50 from Librel

Parkinson a 30 ans: La course contre le montre d’un jeune pharmacien pour trouver une traitement revolutionaire by Guillaume Brachet

Parkinson a 30 ans: La course contre le montre d’un jeune pharmacien pour trouver une traitement revolutionaire (Parkinson’s at 30: A young pharmacist’s race against time to find a revolutionary treatment) by Guillaume Brachet

When Guillaume Brachet, a young father and pharmacist, learnt he had Parkinson’s when he was just 30 years old, his world was turned upside down.

After a period of denial, he decided to take action and set up his own research company dedicated to finding better treatments and even a cure for the condition. To finance this, he decided on a punishing physical challenge: kayaking up the Loire River. This is his inspiring story.

Buy a Kindle edition of the book for €12.99 from Amazon

Parkinson’s Books in German

Jetzt erst recht: Positiv leben mit Parkinson (Living Positively with Parkinson’s) by Kathrin Wersing and Claudia Eyd

Jetzt erst recht: Positiv leben mit Parkinson (Living Positively with Parkinson’s) by Kathrin Wersing and Claudia Eyd

Is it possible to live positively with Parkinson’s? Yes! Jetzt erst recht: Positiv leben mit Parkinson (Living Positively with Parkinson’s) features the updated life stories of 50 people with Parkinson’s and their families who have featured on Kathrin Wersing’s podcast Now More Than Ever – Living Positively with Parkinson’s.

The book also contains supplementary information on Parkinson’s, coping strategies and a comprehensive overview of self-help initiatives.

Buy a Kindle edition of the book for £6.49 (or the equivalent in your local currency) from Amazon

Parkinson’s Books in Greek and English

25 Years Living and Lifting with Parkinson’s by Nikolaos Koukoulakis

25 Years Living and Lifting with Parkinson’s by Nikolaos Koukoulakis

Drawing on personal experience and scientific research, Koukoulakis has written an 84-page, black-and-white illustrated guide to managing Parkinson’s through exercise, as well as providing a personal perspective to inspire resilience and hope. An English translation is presented alongside the Greek text.

Buy an e-book or printed edition of the book for €7.80 from Fylatos Publishing

Parkinson’s Books in Portuguese

Estratégias Para Viver Ativamente com Doença de Parkinson (Strategies for Living Actively with Parkinson’s Disease) by Júlio Belo Fernandes, Josefa Domingos, Cidália Castro, Diana Vareta, Catarina Bernardes and Catarina Godinho

Estratégias Para Viver Ativamente com Doença de Parkinson (Strategies for Living Actively with Parkinson’s Disease) by Júlio Belo Fernandes, Josefa Domingos, Cidália Castro, Diana Vareta, Catarina Bernardes and Catarina Godinho

This comprehensive guide – co-written by Parkinson’s Europe President Josefa Domingos – focuses on how people with Parkinson’s can achieve the best possible quality of life.

Topics covered range from the causes of Parkinson’s to the importance of nutrition and the benefits of physical exercise. Subjects including ageism, sexuality, violence against the elderly, integrated and person-centred care, as well as spirituality and depression are also explored.

It aims to present practical and achievable strategies to promote the wellbeing and independence of people with Parkinson’s despite the barriers they face, so that they can live the fullest lives possible.

Download the book for free

Parkinson’s Books in Spanish

Viajando con Párkinson (Travelling with Parkinson’s (Or How to Trust Strangers) by Paqui Ruiz

Viajando con Párkinson (Travelling with Parkinson’s (Or How to Trust Strangers) by Paqui Ruiz

In this personal account, Spanish Parkinson’s advocate Paqui Ruiz uses humour and sarcasm to describe what it is like to live with Parkinson’s, touching on topics including diagnosis, the lack of research on women with Parkinson’s and the importance of advocacy and community.

Commenting on her book, Ruiz says: “Writing Travelling with Parkinson’s has been a whirlwind of emotions: a liberation, a reflection on my ability, a laugh in difficult moments and a way of accepting what life has put in front of me.” It includes a prologue by Spanish neurologist Diego Santos García and illustrations by Maria Osori, who also lives with the condition.

Paperback edition for €15 coming soon from Bubok

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Parkinson’s Europe advocates for improved healthcare at European Parliament event

17 April 2025 By Christy McGhee
News advocacyEuropean parliamenthealthcare

Parkinson’s Europe shared key statistics and advocated for improved healthcare for people with Parkinson’s at a recent event in Brussels.

The working group event, “Europe’s leading role in healthcare”, was hosted by The Parliament magazine and Croatian MEP Tomislav Sokol. Critical challenges facing European healthcare systems, such as workforce shortages and rising chronic diseases, were among subjects discussed.

Amelia Hursey, Strategic Director for Parkinson’s Europe, addressed around 20 attendees at the event. These included MEPs such as German politician Oliver Schenk (pictured), policy advisors and key stakeholders.

She spoke of the importance of Parkinson’s Europe’s joint call to action for enhanced Parkinson’s care in Europe. The call was created with Abbvie, European Federation of Neurological Associations (EFNA) and the International Parkinson and Movement Disorder Society European Section (MDS-ES).

Need for improved Parkinson’s healthcare

Amelia also explained the expected rise in the number of people with Parkinson’s globally, and the impact on healthcare.

“Around 2010, the approximate number of people with Parkinson’s globally was thought to be 6.3 million,” she said. “In 2021 it was 11.9 million, and it is estimated that in 2050 it will be 25.2 million people. As there are not enough healthcare professionals currently to serve this population, something needs to change now.”

Parkinson's Europe's Hildur Kristjana Önnudóttir attended the event in Brussels

The event took place at the European Parliament in Brussels in March, as part of a series on healthcare run in partnership with AbbVie.

Parkinson’s Europe’s Campaigns and Advocacy Manager Hildur Kristjana Önnudóttir (pictured above) also attended. She said: “There is no health without healthcare professionals. Amelia’s contribution at the event ensured the complex needs of people with Parkinson’s was a prominent part of the discussion. Which is beneficial not only to the European Parkinson’s community but also to a wide range of persons who live with conditions that require access to a diverse team of healthcare professionals.”

Amelia added: “It was great to to bring the patient voice to this conversation, highlighting how much real-world data is already out there. I hope this will be part of what the MEP’s take forward into bigger discussions in this area.”

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10 highlights from World Parkinson’s Day events in 2025

Our roundup of photos and videos from the biggest World Parkinson's Day events, campaigns and fundraisers from 2025
14 April 2025 Laura Vickers-Green
News europeglobalWorld Parkinson’s Day
A fountain lit up for Spark the Night in Rome, Italy

Last Friday 11 April we once again saw the Parkinson’s community unite to raise up each other’s voices for the 2025 edition of World Parkinson’s Day, with events, campaigns and other special awareness-raising activities taking place across the globe in solidarity with people with Parkinson’s everywhere.

2025 truly seemed like the biggest World Parkinson’s Day ever, with social media coming alive with organisations and individuals sharing their World Parkinson’s day messages, events, photos and video – it was almost impossible to keep up with you all!

We’ve rounded up some of the best moments from World Parkinson’s Day 2025 so you can look back at the major events that happened on the day:

Worldwide events for World Parkinson’s Day

1. Spark the Night

This year’s Spark The Night campaign was bigger than ever, with volunteers from dozens of countries across the world contacting their local councils and district representatives to ask them to light up notable buildings and landmarks in blue to raise awareness for World Parkinson’s Day. From the Netherlands to New York, Germany to Ghana, Slovenia to Saskatoon and beyond, the night sky was lit up in blue for people with Parkinson’s.

Here’s just a few of the highlights shared on social media:

 

 

Društvo Trepetlika (the Slovenia Parkinson’s organisation) trip to Gasilska brigada in Ljubljana, Slovenia:

A photo of a World Parkinson's Day event in Slovenia, featuring the old fire house lit up in blue for Spark the Night

Rome, Italy

 

 

View this post on Instagram

 

A post shared by SkyView de pier (@skyviewdepier)

 

 

View this post on Instagram

 

A post shared by Paqui Ruiz (@by_pruiz)

2. The Sit-to-Stand Challenge

 


Stand Up To Parkinson’s was back for another year with its global exercise challenge, encouraging people around the world to collectively complete as many “sit to stand” exercises as possible for Parkinson’s awareness. Their website counter current sits at almost 1 million sit-to-stands completed worldwide – with groups like the North Carolina branch of Rock Steady Boxing submitting over 12,000 reps between them!

3. Insight into Parkinson’s conference (Australia)

 

 

View this post on Instagram

 

A post shared by PD Warrior (@pdwarrior4parkinsons)

This mammoth three-day virtual conference from PD Warrior in Australia had expert-led sessions giving insight into exercise, living well with Parkinson’s, Parkinson’s research updates and much more. Around 6,000 people tuned in live from across the world to listen to speakers including Professor Michael Okun, Professor Ray Dorsey and Dr Laurie Mischley.

World Parkinson’s Day events in 2025 across Europe and beyond

4. The history of the tulip, as told by Parkinson’s Europe

We took a touching trip back in time to the first ever World Parkinson’s Day with our co-founder Lizzie Graham, who told the story of how the tulip became the symbol of Parkinson’s across the world in both a special podcast episode and an article for Parkinson’s Life.

5. Birdie Belgium releases “It’s Hard to See” single – Belgium

World Parkinson’s Day was also a special day for singer-songwriter Birdie Belgium, who released her single “It’s Hard to See” in honour of her mum Hilde’s 14-year struggle with Parkinson’s. We interviewed Birdie about her song earlier this month – and half of all proceeds from CD sales go to Prof. Bas Bloem’s research on the benefits of art for people with Parkinson’s.

6. Pesticide-Free Day demonstration at The Hague, the Netherlands


Over 1,000 people from 100 organisations (including Parkinson Vereniging) marched through The Hague in the Netherlands to call on politicians to do more to tackle pesticides (some of which have been linked with Parkinson’s) and work towards a pesticide-free future.

It wasn’t just the Netherlands taking a stand against pesticides on World Parkinson’s Day – France Parkinson also released a statement joining the call for the EU to reconsider its approval of the pesticide glyphosate, a pesticide which research has shown may be a cause of Parkinson’s.

 

7. “Big Sing” event by the Movers and Shakers podcast at the Houses of Parliament, UK

This goosebump-giving moment shows hundreds of people gathered outside the Houses of Parliament in London, UK singing a special Parkinson’s-themed version of Gloria Gaynor’s 1970s classic “I Will Survive”, all to raise awareness of the Movers and Shakers podcast’s petition to adopt their “Parky Charter” and increase funding for people with Parkinson’s in the UK.

8. National Parkinson’s Congress, Portugal


Portuguese Parkinson’s association APDPk celebrated World Parkinson’s Day with its annual conference in Porto, featuring lectures on the latest developments in Parkinson’s diagnosis and research, workshops on physiotherapy and music therapy, and the above performance by the tulip choir.

9. World Parkinson’s Day event in Poland

In Poland, the Brain Disease Foundation hosted this hybrid conference at the Polish Press Agency in Warsaw, featuring a range of neurology experts, representatives from the Ministry of Health, and people with Parkinson’s. They addressed Parkinson’s care in Poland in comparison to the rest of Europe, considering what treatments are available and what systemic change is needed to improve the quality of life for people living with Parkinson’s in Poland. You can watch the entire hour-long broadcast above.

10. World Parkinson’s Day procession, Kenya

Among several events taking place across Africa, the Parkinson’s Support Group of Kenya held an impressive programme of events to mark World Parkinson’s Day in Nairobi (as well as further afield in Kilifi), including a march for Parkinson’s awareness, musical and dance performances, and free eye tests for people living with Parkinson’s. Parkinson’s advocate Dr Tash Fothergill-Misbah from Transforming Parkinson’s Care in Africa was also present to help raise awareness of the needs of people with Parkinson’s across Kenya and the wider continent.

Did you join in with any World Parkinson’s Day events in 2025? Keep up the good work by signing up to our mailing list and Engagement Network so you never miss the latest news, events and opportunities.

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Parkinson’s Europe and the history of the tulip

11 April 2025 By Christy McGhee
Stories World Parkinson’s Day
In 1981 JWS Van der Wereld, a Dutch horticulturist with Parkinson’s, created a prize tulip to honour the International Year of Disabled Persons. He named the flower – pink, with a white feather on each petal – the Dr James Parkinson’s tulip, after the British surgeon who first identified the condition.
But how did it come to be known as a global symbol for Parkinson’s, and the official logo for Parkinson’s Europe? We spoke to Parkinson’s Europe co-founder Lizzie Graham to find out more about Parkinson’s Europe and the history of the tulip.

Europe-wide charter for people with Parkinson’s

Just over ten years after the Parkinson’s tulip was created, Parkinson’s Europe (known then as the European Parkinson’s Disease Association  or EPDA) was established. The organisation, set up in 1992 with just nine members, was building connections across the globe. Co-founder Lizzie Graham says they began to notice that many national Parkinson’s organisations around the world, from Europe to Australia and New Zealand, had incorporated a common symbol in their logos – a tulip.
One of the EPDA’s first projects was to conduct a survey of both its European members and others they were in touch with worldwide, in 1994. The results revealed they were all working to the same criteria, inspiring the EPDA to create a five-point charter, to be promoted on a worldwide day to raise awareness about Parkinson’s.
The charter stated that people with Parkinson’s should have the right to:
  • be referred to a doctor with a specialist interest in Parkinson’s
  • receive an accurate diagnosis
  • have access to support services
  • receive continuous care and
  • take part in managing the disease.
Keen to advocate for these rights, the EPDA got in touch with the World Health Organisation (WHO). “At this point the WHO were interested in neurology, and when EPDA contacted them they were interested in taking forward the charter for Parkinson’s,” says Lizzie.

A day to unite across the globe

The EPDA then asked member organisations around the world if they would support a World Parkinson’s Day (WPD), suggesting 11th April, as it was Dr James Parkinson’s birthday. The response was a resounding yes, with organisations keen to unite and support the launch of the charter with the WHO.
Branko Šmid Parkinson’s disease society of Slovenia – Trepetlika co-founder
Having learned about the Parkinson’s tulip, the EPDA decided to adopt the flower to help promote the launch. “So the EPDA connected with a Lincolnshire, UK-based tulip grower, Robert, who was really keen to help,” Lizzie recalls. “We had all these tulips delivered, our whole office was covered in tulip bulbs. The EPDA then contacted all its members to see if they would be interested in planting these tulips in their countries to celebrate WPD. In the UK, supermarket chain Tesco agreed to sell the tulips for EPDA to help raise awareness, they were very supportive.”

Royals support WHO-backed launch

As the flower became a symbol of the hard work being done, the inaugural World Parkinson’s Day was set for 11 April, 1997. The awareness-raising day, and the charter, were launched with a prestigious event.
Royals including UK royals HRH Princess Margaret support inaugural World Parkinson's Day event
Co-sponsored by the WHO, and held at Kensington Palace, London, the launch won support from high-profile people around the world including UK royals HRH Princess Margaret and Princess Diana, UK prime ministers John Major and Tony Blair, Pope John Paul II, Italian opera singer Luciano Pavarotti and US boxing legend Muhammad Ali.
Around the world, member organisations held their own events to mark the day. “Europe was awash with tulips,” Lizzie says.
Out of that first WPD day, a new WHO working group on Parkinson’s was formed, which ran between 1997-2004.
Lizzie adds: “And so the message spread. Remember, this was all before the days of email. This was the start of WPD and the tulip.”
A new WHO working group on Parkinson’s was formed, and ran between 1997-2004
The symbol endures today, not only as a logo for Parkinson’s Europe and other organisations, but also as an inspirational theme. For example, Czech Republic organisation Spolecnost Parkinson’s activities for WPD 2025 include planting tulip beds in various locations, accompanied by signs to raise awareness. Meanwhile, Parkinson’s UK is asking supporters to knit or crochet a blue tulip and to send it to them to create a striking, symbolic display to mark the day.

A symbol of growth and strength

So what was it about this small, vibrant flower that saw it organically adopted by so many Parkinson’s organisations across the world, and led to it becoming the EPDA, and Parkinson’s Europe’s, official logo?
For Lizzie, it lies in what the tulip represents to people, and a desire to connect with a global community. “People feel it shows hope and optimism,” she says. “At that time, people wanted to work together. All the countries had been independent, but with the formation of Europe it was something we could all work on together, and have a symbol. People were so keen to work together to raise awareness about Parkinson’s.”
Parkinson’s Europe Operations Director Dominic Graham adds: “It is a colourful vision of hope for a community that really needs it. I cannot think of anything better – it is something that grows, blossoms, inspires joy. The following year it wilts and dies, but then comes up again.
“So a flower seems such an apt metaphor for what we’re all trying to do as Parkinson’s advocates. It’s really hard and challenging to generate change, there are always ups and downs, but the hope will continue to rise up and blossom, just like the tulip.”

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Podcast: World Parkinson’s Day – an idea that blossomed and bloomed

09 April 2025 Anthony Zahra
Podcasts Lizzie GrahamParkinson's Life PodcastpodcastsWorld Parkinson’s Day

As the Parkinson’s Life podcast marks World Parkinson’s Day 2025, the latest episode speaks to Lizzie Graham, co-founder of Parkinson’s Europe and former Secretary General.

Lizzie was one of the key driving forces behind the creation of Parkinson’s Europe, then called the European Parkinson’s Disease Association (EPDA), back in the early 1990s.

She was also instrumental in launching the very first World Parkinson’s Day in 1997, recalling how they gained support from the likes of Princess Diana, Muhammad Ali, and Pope John Paul II.

Lizzie remembers the poignant moment that she says has spurred her on to continue working in the field of Parkinson’s, recalling: “I realised then what a horrible condition it is.” Lizzie’s son, Parkinson’s Europe’s Operations Director, Dominic Graham, also appears on the episode, sharing how proud he is of his mum’s “selfless” work.

As well as raising awareness about Parkinson’s, the first World Parkinson’s Day saw the launch of the Parkinson’s Europe Charter, a document which sets out the rights of people with Parkinson’s.

Lizzie says those original five principles have formed the basis for all the work Parkinson’s Europe has done since.

Sharing plans for World Parkinson’s Day

We also meet Jessie Duncan, European Outreach and Engagement Manager at Parkinson’s Europe, who tells us what’s happening across Europe to mark World Parkinson’s Day.

We would love to hear about your plans for World Parkinson’s Day. Parkinson’s Europe has launched an interactive map, highlighting the many events that are taking place on and around April 11th. To get your event added, let us know about it by emailing: [email protected].

And we would love to hear your Parkinson’s stories, too. Get in touch via social media to share your story, or email [email protected]. As Parkinson’s Life podcast host Amelia puts it: “World Parkinson’s Day is for everyone, not just people with Parkinson’s.”

Meet your hosts:
Amelia Hursey is Strategic Director at Parkinson’s Europe. She has a master’s in cognitive neuropsychology and has been involved in the neurodegenerative research world for 15 years.

Anthony Zahra is a broadcaster and journalist with more than 20 years’ experience in radio, digital and podcasting.

Listen to the full episode on Spotify, or on your podcast provider of choice. If you like what you’ve heard, please rate and review – it helps make sure others can find us.

Explore more of our Parkinson’s Life podcasts, with episodes covering Parkinson’s research, how to deal with “off” periods, sex and intimacy in Parkinson’s, and women and Parkinson’s. Never miss an episode by subscribing to the Parkinson’s Life podcast on Spotify, Apple Music, or your streaming service of choice.

Parkinson’s Europe is sharing this article for information purposes only; it does not represent Parkinson’s Europe’s views and is not an endorsement by Parkinson’s Europe of any particular treatments, therapies or products.

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“I hope to bring awareness, and open up a safe space to talk”: Birdie Belgium on why she is releasing a new song for Parkinson’s

07 April 2025 By Christy McGhee
Stories BelgiumfundraisingperspectivesWorld Parkinson’s Day

Belgian singer-songwriter Birdie Belgium is launching a new song on 11 April, to raise awareness and funds for Parkinson’s.

A heartfelt tribute to her mother, Birdie wrote “It’s Hard to See” after seeing the effects of her mother’s 14-year battle with Parkinson’s. After sharing the track with Professor Bas Bloem, the song is now being released for World Parkinson’s Day 2025, to raise awareness, offer comfort, and help fund vital research.

Parkinson’s Life spoke to Birdie and her mother Ilde, to hear their different perspectives of the new song.

Birdie (Berdien) Belgium, 36, is a singer-songwriter who splits her time between her home in Belgium and Australia. She tells Parkinson’s Life about her experience of seeing her mother living with Parkinson’s, and how she came to write the song.

“In August 2018, I left Belgium to travel for a year in Japan, Australia and New Zealand. In Australia I picked up the guitar for the first time and started songwriting. I always loved singing and it was my dream since I was a little child to sing. This became reality, just by making time for my passions at the age of 30. Australia is a great place to play music and travel and so my one-year trip became four years, as Covid extended my stay even more than intended.

“I returned home for the first time in 2022. I was speechless and shocked to see my mum’s decline in real life. The video calls and the moments we would call – weekly if possible – had been when she was “on” (not “off”). This had contributed to a somewhat distorted image.

“I remember after a few weeks back home, I was triggered by seeing my mum so helpless. I went into my childhood bedroom, and once my emotions were settled enough I felt able to write about it. So I sat down feeling the need to write and play, and in one hour I wrote this song. I felt so much lighter afterwards. Like therapy.

Birdie wrote the new song for her mother

“Since then I’ve been travelling between Belgium and Australia mostly. Trying to find a balance between spending time with my mum and following my dream. I felt like I needed to stay home and take care of my mum, who I love more than anything in the world. But after talking about this with my mum, many times, she made it very clear that she didn’t want me to give up my dreams – she would rather give up now if that was the case. Seeing me chasing my dreams gives her strength and makes her proud.

Understanding Parkinson’s

“Even after my mother’s diagnosis I was very ignorant – most likely a bit in denial, but I also didn’t know much about the disease. It took me years to understand this was a very nasty disease that slowly takes away the things we all take too much for granted. Not being able to go to work, later she couldn’t drive a car. Before you knew it she had moments she would freeze and couldn’t walk.

“These days she cannot speak when she is off, or process what you tell her. She is a strong, independent and proud woman who had to swallow her pride a lot over the last 14 years. Having to ask for help does not come easy for her and it breaks my heart to see her so helpless.

“I had written about my mum before, but not about Parkinson’s. I played this song for her the first time outside in the garden at home, on a sunny day. It was a very emotional moment. In 2023, I was reading one of Bas’s books and I loved how he saw the benefits of art for people with Parkinson’s. I could feel a connection with him through his visions. I immediately sent him an acoustic recording of the song. Wondering if he would even respond, as he is a very busy man, making a difference every day. But he did reply. He was emotional and enthusiastic about how we could do something meaningful together in the future.

Birdie Belgium and Professor Bas Bloem

“In June 2024,  I performed my song at the Parkinsonnet Congress. The event was organised by Bas, and I met him in real life for the first time. My mum came along on the trip. They organised everything to make it possible for her to be a part of it, which I’ll be always grateful for. It meant the world to my mum and myself.

Bringing people together

“At first I wrote it for me and my mum, about my mum and myself and this ugly disease. When I started to play this song for my audiences over the next year, I realised people connected with it.

“Either they have lost or know someone with Parkinson’s, or someone who is sick. They felt like they could talk about it with me afterwards. I was vulnerable enough to share this with them, so now they could share their story with me.

“Maybe it opens up space or takes away a barrier, allowing people to start a conversation about something that is not easy to talk about. People often feel alone and do not know that many of us carry the same burdens.

“I hope this song will bring awareness, make people feel understood, and open up a safe space to talk to one another. And hopefully the song can contribute to Parkinson’s research. Bas and I decided that half of the proceeds will go to the research into the health benefits of art, focused on people with Parkinson’s disease.”

Ilde (Hilde) Vander Elst, 68, lives in Oosterzele, Belgium. She spoke to Parkinson’s Europe about her Parkinson’s journey, and how she feels about the song her daughter Birdie has written for her.

“I always worked as an executive secretary, alongside raising my three children Tijl, Dieter and Berdien, along with social commitment and hobbies. My diagnosis came about when I visited neurologists Professor Dr De Reuk, Ch. Vander Linden, and Professor Comhaire in October 2011.

“My symptoms were of loss of smell, difficulty when walking, slowness, coordination problems, stiffness and trembling. I became afraid of my own body, and experienced problems and comments when performing my job. I had noticed a slow dragging in my left leg. The NMR (Nuclear Magnetic Resonance) scan of my brain resulted in the effective diagnosis of Parkinson’s disease, in addition a coincidental discovery of three meningiomas tumours.

“In January 2012, my neurologist requested a more targeted scan – an injected tracer was followed by a scan of the brain, to detect the dopamine deficiency that is the basis of Parkinson’s disease. This research confirmed the diagnosis.

“At the age of 56, the verdict was Parkinson’s. What I feared became reality. It hit hard. I became afraid of the future and the further progress of our family. My world was turned upside down. My close family and friends sympathised enormously. Their shared energy and drive ensured we would work together to deal with this disease.

Visible and invisible symptoms

“Parkinson’s is drastic and is a daily battle together with your loved ones. Coordination and balance problems affect you in everything you do. Without a break, non stop, without improvement.

“However, many people hardly know what it means to have this incurable disease. There are many external characteristics, but also invisible symptoms that plague the patient and determine the further life of Parkinson’s sufferers.

“I am currently in an advanced phase, with irregular on-off moments and loss of multiple functions. My message is to remain positive; be patient and get to know your body again and again. Parkinson’s is a piece of new identity, which you have to reconcile with the identity you know.

Mother and daughter

“The love and care of my children, grandchildren and partner, strengthen me again and again. I also find peace in nature and the performance of my still feasible hobbies.

Fighting isolation

“When I heard Birdie’s song, I was touched – happy and sad. It is so striking, the exact wording of the disease, presented in a beautiful song, and now with beautiful, atmospheric images we made together. I am so grateful to her and hope that through this song we can make a difference.

“I am fading away while I am still here. That is the hardest thing about the disease. Not the pain, not the physical limitations, but still trying to be part of society, which you used to be a part of.

“The world around us is not at all tolerant of what deviates. You no longer belong and are pushed to a side track. I experience the contrast between my ever-increasing delay and the ever-faster advancing world, but I no longer externalise it. I am trapped in my own body and only very slowly find bits of a way out. The disease makes your social circle smaller and causes isolation, if you don’t put the effort in to prevent it.

“That is why the following message is conveyed through this song: Keep moving, draw strength from nature and develop yourself creatively and keep yourself artistically occupied.

Breaking the taboo

“Berdien’s song contributes to the awareness of the world’s fastest-growing brain disorder. It brings the message to still be part of society as a valid member and to make Parkinson’s more discussable. It is our mission to work together to make known the impact of this disease on your family, relatives, your friends, and ultimately on your entire existential social life.

“How proud I am of her and happy with such a talented and determined daughter. With the release of this song, I hope the invisible symptoms, which are so serious for Parkinson’s patients, are better known and understood, and that the funds can contribute to research.”

“It’s Hard to See” by Birdie Belgium will be available on all good music platforms from 11 April 2025. You can pre-save the song on Spotify and pre-order on Apple Music. A CD is also available. 

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World Parkinson’s Day 2025: what’s happening this year?

02 April 2025 By Verity Willcocks
News eventsNewsWorld Parkinson’s Day

Wherever you live, join in with the rest of the Parkinson’s community and raise awareness for World Parkinson’s Day 2025 by taking part in one of the special events on or around 11 April.

Find out what is happening near you by consulting our handy interactive Parkinson’s map or explore the World Parkinson’s Day 2025 events highlights around the UK, Europe and the world below.

There are plenty of Parkinson’s events to get involved with online, too – you could take part in a Sit to Stand challenge, discover the latest developments in Parkinson’s research by tuning into a webinar, or sign a petition against pesticide use.

And do not miss the special episode of our Parkinson’s Europe podcast where our founder, Lizzie Graham, and our Operations Director Dominic, tell us some fascinating stories from Parkinson’s Europe’s past, including how the history of the tulip symbol is linked to World Parkinson’s Day. However you choose to mark it, enjoy the day!

World Parkinson’s Day 2025 events: Europe

All of Europe

Spark the Night 2024: Kennedy Bridge - Tampa, FL

Spark the Night
US-based advocacy organisation the PD Avengers is holding its Spark the Night event, lighting up landmarks in blue all over the world on the night of 11 April. Partnering with AbbVie, the event will see iconic buildings, bridges and towers lit up in a powerful display of hope, solidarity and visibility for the Parkinson’s community. In the US, this will include the One World Trade Centre in New York, while in Europe, Lisbon’s Cristo Rei will be lit up in blue, as will Turin’s National Museum of Cinema, Cardiff Castle in Wales, and many more.

Belgium

World Parkinson’s Day Conference
Action Parkinson is hosting a conference in Ixelles, which will include a lecture by neurologist Dr Priscilla Van Meerbeeck, tips for your living space from local occupational therapists, and a lecture on acupuncture by physiotherapist Aurélie Schils. Registration is 10 euros – see full programme and payment details here. The conference is at Chaussée de Vleurgat, 109, 1050 Ixelles, between Place Flagey and Avenue Louise.

Denmark

SparkTheNight and dinner
Danish Parkinson’s association Cure4Parkinson is marking World Parkinson’s Day by taking part in Spark The Night in Copenhagen, as well as holding a two-course dinner at 7pm at Café Du & Jeg, Vedbæk, with entertainment by local singer Jeanette Debb. Price per ticket is DKK 125 excluding drinks. For a ticket, email [email protected]. Tickets are subject to availability.

France

World Parkinson’s Day events
To mark World Parkinson’s Day, France Parkinson has organised more than 60 events throughout France until 31 May. Find out what’s happening near you by clicking on their map.

Germany

German Parkinson’s Foundation virtual information event
German Parkinson’s foundation Parkinson Stiftung is hosting an online conference on 11 April from 3-7pm focusing on sport and sleep. Contributing will be Wolfgang Wendlik, a person with Parkinson’s who is training for a triathlon, and Andreas Moroff, who discusses the benefits of table tennis. The topic of sleep and how to improve it will be tackled by Professor Claudia Högl from Innsbruck University Hospital in a live episode of ‘Moving Matters – The Parkinson Foundation Podcast’. As in previous years, three medical experts will present various topics and answer questions from the audience.

PingPongParkinson World Parkinson’s Day event
Join PingPongParkinson in Hanau, near Frankfurt, from 2pm on 11 April for an afternoon of dancing, table tennis and boxing in Hanau marketplace and the town square, as well as lighting the Brothers Grimm Monument blue for the SparkTheNight campaign.

Ireland

Parkinson's Ireland: A Walk in the Park for Parkinson’s’ campaign

Walk for Parkinson’s
Parkinson’s Ireland is marking World Parkinson’s Day by holding a series of walks in its ‘A Walk in the Park for Parkinson’s’ campaign. From 5th April onwards, the walks are taking place in the following locations: Dublin, Meath, Kildare, Laois, Offaly, Tipperary, Wexford, Waterford, Cork, Limerick, Roscommon, Mayo, Sligo and Donegal. Find out about dates and exact locations here.

Italy

Parkinson’s conference
On 11 April, a Parkinson’s conference concentrating on the practical, legal and bureaucratic aspects of the condition will take place at Hotel Barrage in Pinerolo, organised by initiative group I Tremolini, the Italian Association of Young Parkinson’s Patients (AIGP) and the Waldensian Diaconate – Health Services. Attendance is free but places must be booked. Find out more here.

The Netherlands

Parkinson Vereniging: Pesticide-free campaign

Pesticide Free Day
Support Parkinson Vereniging and the Pesticide Action Network Netherlands in their battle to reduce pesticide use – believed to contribute to the development of Parkinson’s – in the Netherlands. You can do this by signing the Call to Action petition and manifesto they will present to members of the Netherlands’ House of Representatives in the Hague on World Parkinson’s Day. You can also join in their march and watch the Call to Action handover – all taking place from 1-3.30pm on 11 April. Find out more here.

Portugal

National Congress for Parkinson’s Patients 2025
Portuguese Parkinson’s association APDPk will celebrate World Parkinson’s Day with a whole day of activities in Maia near Porto from 10:30am-5pm on 12 April. These will include lectures on the latest developments in Parkinson’s diagnosis and research, and workshops on physiotherapy and music therapy. Register for the free event at Auditório Manuel Correia, Rua Joaquim de Vasconcelos 174, Águas Santas, Portugal – Maia, by email: [email protected]t or by telephone: 939 053 378.

Spain

World Parkinson’s Day 2025
Parkinson Madrid is holding a free World Parkinson’s Day event with talks from experts including Pablo Rábano, Olga Mateo Sierra and Pilar Sánchez-Pobre Bejarano from 10am-1:15pm on 7 April at the city’s CaixaForum auditorium. Topics include second-line treatments for Parkinson’s, surgery for Parkinson’s, and improving Parkinson’s care in Madrid. The event ends with the presentation of the Parkinson Madrid 2025 Awards. Register your attendance by email: [email protected] or by telephone: 914340406.

Switzerland

Art, creativity and Parkinson’s event
Parkinson Schweiz is holding a conference focusing on art, creativity and Parkinson’s at Università della Svizzera italiana, Aula Magna USI, West Campus, Lugano, from 2-6pm on 11 April. Topics covered will include dopamine and creativity, dance as a cure, and experiencing art from the viewpoints of the artist and patient.

UK

Movers & Shakers ‘Big Sing’ London event
Take part in The Big Sing, an interactive singing experience with the ‘Movers & Shakers’ of the podcast of the same name – including former UK TV broadcaster Jeremy Paxman, journalist Mark Mardell and comedy writer Paul Mayhew-Archer – as well as Parkinson’s UK, Cure Parkinson’s and Spotlight YOPD. On 11 April, go to Old Palace Yard, Westminster – opposite the Houses of Parliament – at 12pm for a 12:15pm start – no singing experience required! It will last for 30-45 minutes and culminate in the Movers & Shakers’ Parkinson’s anthem ‘We Will Survive’. Afterwards, enjoy refreshments and entertainment at the new Parkinson’s UK offices. If you would like to join in, fill in this Cure Parkinson’s form.

Parkinsongs with Impropera and Emma Lawton

Parkinsongs with Impropera and Emma Lawton
Enjoy improvised opera and a lot of laughs at this evening show on World Parkinson’s Day in London. Impropera describe themselves as ‘the world’s only and probably best’ improvising opera company, who respond to live requests from the audience. “We are always trying to do proper opera,” explains Artistic Director David Pearl. “It just never quite happens.” Featuring special guest, artist, keynote speaker and stand-up comedian Emma Lawton. Time and location: 11 April, 7:30–9pm at Guy’s Chapel, Henriette Raphael House, London SE1 1UL. Tickets cost £16.96.

Free Parkinson’s gym membership in Carshalton
Everyone Active at Westcroft Leisure Centre in Carshalton is holding a special World Parkinson’s Day afternoon event on 11 April – including the chance to register for FREE Everyone Active Parkinson’s membership. From 12:30-1:30pm, watch their popular Parkinson’s Circuits Class. Then, from 1:30-3pm, you can learn about Everyone Active’s GP Exercise Referral Scheme, get free advice from Sutton Health & Care’s Neuro-Physio Team and apply for a free Parkinson’s membership.

World Parkinson’s Day 2025 events: rest of the world

Africa

Cultural Parkinson’s event
Parkinson’s Support Group of Kenya is holding a World Parkinson’s Day event at Visa Oshwal Community Centre, Nairobi, from 10am-2pm on 12 April. It will feature a band, performances by the Sarakasi Acrobats, a play ‘What I Didn’t Say’ and screenings of ‘Shaking Hands with the Devil’ and ‘Uhuru’, as well as information stalls. Buy tickets to attend from Nadia Butt on 0768747948.

United States of America

One-hour punchathon
Rock Steady Boxing is holding a Fight Back Fundraiser with a one-hour ‘punchathon’ on 11 April. The event will take place from 1-2pm at 6847 Hillsdale Court, Indianapolis, IN 46250.

Step it up
Senior living provider the Heritage Community of Kalamazoo in Michigan is joining Indiana’s National Institute for Fitness and Sport (NIFS) in Pump it for Parkinson’s from 1:30-10:30pm on 10 April to raise awareness of the condition and highlight how exercise can ease its symptoms. The Heritage Community will host a NuStep-A-Thon at Kalamazoo’s Memory Care Learning Center (300 Golden Dr, Kalamazoo, Michigan, US, 49001) using the NuStep cross trainer, challenging its residents and staff to contribute to America’s nationwide goal of 25 million steps!

Canada

Take part in a Sit ’n Stand Challenge!
The Parkinson Association of Alberta wants you to dedicate April to Stand Up to Parkinson’s by taking part in its Sit ’n Stand Challenge! Aiming for 100,000 Sit ’n Stands in April, the Association is inviting people with Parkinson’s, their carers, families and friends to its Stand Up Events in Calgary (7 April) and Edmonton (11 April), when they aim to complete 10,000 Sit ’n Stands in 24 hours, as well as providing fun mental and speech activities. Track your Sit ’n Stands on their tracking log.

Walk and raise funds for Parkinson’s
Parkinson Canada is running a 50km walk challenge in April to raise funds, with more than £36,000 raised already! Join in here.

India

Dancing to My Truth event
India’s Parkinson’s Disease and Movement Disorder Society is inviting the Parkinson’s community to its dance event, Dancing to My Truth, starting at 2pm on 7 April at Mumbai’s Swatantryaveer Savarkar Auditorium.

World Parkinson’s Day 2025 events: global/online

Birdie Belgium is releasing ‘It’s Hard to See’

Tune into Birdie Belgium’s Parkinson’s song
On World Parkinson’s Day, Birdie Belgium is releasing a beautiful song in English called ‘It’s Hard to See’, about her mum’s journey with Parkinson’s. Pre-save the song on Spotify or iTunes.

Sit to Stand for Parkinson’s
Join in with the Stand Up to Parkinson’s Sit to Stand challenge from your own home on 11 April. The aim is to collectively complete two million sit to stands in 24 hours. See how many you can do and log your total on the Stand Up to Parkinson’s website.

INSIGHT into Parkinson’s Online Conference
Discover the latest research, treatments, medical advancements and strategies to live well with Parkinson’s with PD Warrior’s free, three-day online INSIGHT into Parkinson’s Online Conference, taking place from 11–13 April. Register for free live access.

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Jessie Duncan: meet Parkinson’s Europe’s new Outreach and Engagement Manager

31 March 2025 By Verity Willcocks
Insights Parkinson's Europe

We chat to Jessie Duncan, new Outreach and Engagement Manager at Parkinson’s Europe, to find out about the hard work she is doing for our organisation.

As Outreach and Engagement Manager at Parkinson’s Europe, what does your job involve?

The role is very much about engaging with and building on the variety of stakeholders we work with. There’s quite a diverse range of members. Some very small organisations with quite limited resources, and also some very large organisations with big teams who are able to do lots of exciting things.

It’s about empowering all of these organisations, bringing them together and sharing knowledge, and strengthening the Parkinson’s community.

I also try to increase our membership. Part of the plan further down the line is to target academia, healthcare professionals, and engage with other areas where we want to build our network.

What sort of background do you have, career-wise?

My most relevant experience is the eight years that I worked in a political communications organisation in Brussels, working with European institutions and various organisations, including NGOs.

Being in the political sphere showed me the context in which Parkinson’s Europe works and how decisions are made in the EU.

Why did you want to work for Parkinson’s Europe?

I wanted to do something that was worthwhile. And the fact that we’re a European umbrella organisation brings with it a really unique perspective of what is happening across Europe. Also, I enjoy working in different languages and across different cultures. I speak French and I understand a little Italian and German.

What are you working on at the moment?

World Parkinson’s Day is coming up, and we’re going to record a podcast for that. I’m trying to capture the diversity of the activities our members are hosting. There’s a really impressive range – lots of campaigns, conferences and events. But also plenty happening on a very small scale at local level, which is equally as important.

I’m also in touch with the organisations we partner with on a European level, such as the European Patients’ Forum, so I’m working on the bigger-picture activities too.

What do you hope to achieve this year?

Over the next few months, I’m having individual meetings with all of our members to get to know them better. For instance, this morning, I was talking to [Dutch organisation] Parkinsonisme Vereniging. And later today, I’m talking to Društvo Trepetlika (Trepetlika Association) in Slovenia. We also have members in Central and Eastern Europe and also further afield, in Israel and Ukraine.

Making sure that all of these voices are heard and that we’re connecting with everybody is a really important part of my job. I’m trying to understand the context in which each organisation is operating, the number of staff they have, the resources they have. What are their challenges? How can we help them?

Something I’m really keen to do in the next year or two is to organise face-to-face meetings once again. Members enjoy the human connection, and it’s quite hard to replicate that online. I would also like to connect more directly with people with Parkinson’s, and I’m trying to do that as the role evolves.

How will you be involved in growing the Parkinson’s Europe Engagement Network?

It’s been doing really well. Lots of people have signed up to it and lots of opportunities have been shared. Part of my role will be to develop that and increase uptake. It’s got so much potential to, again, be part of this empowerment of increasing knowledge and connecting the different groups within the Parkinson’s community.

How does your role support Parkinson’s Europe’s new strategy, which was unveiled earlier this year?

The strategy has three pillars. The first is data and innovation – so, getting a clearer picture of Parkinson’s across Europe. There are definitely gaps in data. The second pillar is empowerment, which is a big part of my role – helping the community grow together. And the last pillar is awareness and visibility.

Under each of these pillars, we will have steering groups that include the Parkinson’s community as well as other stakeholders from research and industry. I’m really looking forward to being involved in the steering groups. It is incredibly valuable to have the insight of different stakeholders helping to guide us over the next four years. We’re now looking to recruit 9-10 people for each group. For people who might be interested, the role descriptions are available on our website.

What are the benefits of being a member of Parkinson’s Europe?

The obvious things are bringing people into a broader discussion and allowing them to learn from other organisations around Europe. Gaining greater visibility at European level and at global, international level is a big part of why you would want to be part of Parkinson’s Europe. My intention is to try to join the dots for people, to connect them with other organisations, all with a view to increasing their knowledge, their strengths and their visibility.

If people are interested in learning about membership, and what it takes to become a member, that’s something I would be keen to discuss with any organisation.

 

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“You need to change your goals – but we still need to push ourselves”: ZWAP cycling club founder Rune Vethe on adapting with Parkinson’s

27 March 2025 By Christy McGhee
Stories cyclingexerciseNorway

Motivation, determination and solid team values are all attributes you might expect to find in a lifelong sports enthusiast such as Rune Vethe. These are also exactly the qualities that shine through when the 50-year-old Norwegian shares his journey of receiving a young-onset Parkinson’s diagnosis, and going on to set up a cycling club that spans 12 countries.

A campaigner, Rocksteady boxing coach, and the co-founder of ZWAP (Zwifters Against Parkinson’s), Rune lives in Sandefjord, Norway, with his wife and two teenage sons. The former family therapist speaks to Parkinson’s Life about adapting your goals, and how indoor cycling can benefit everyone with Parkinson’s, regardless of their age or experience.

Family values

Rune was diagnosed with Parkinson’s in 2009, after experiencing symptoms for three years. “I first noticed it on my left side. For example, in my wrist – it became hard to turn a fork. Or when jogging, I noticed my left foot sounded different,” he says. A GP visit led to an assessment, a DaTSCAN, and a diagnosis of Parkinson’s at just 34 years old.

“At that point my boys were one and three years old. So I was worried about how my role as a father would be, 10-15 years ahead. Would I be able to be physically active, would I be the father I’d like to be? That was a heavy thought,” he recalls. “But I am still jumping around with my kids and I have been a good father. I am very proud of how they have grown up. My relationship with my wife and our journey has also been very important. Figuring out how to be with this new thing in our family, in our own way.”

Growing community connections

In the years following his diagnosis, Rune began to make connections with other people with Parkinson’s. “In 2011 or 2012, I took part in a seminar run by the Norwegian Parkinson’s Association, to get some information about how to adapt my working situation. From there I connected with my local Parkinson’s branch, and met up with other young people such as [Norwegian photographer] Anders Leines. Five of us then started Parkinson’s Boxing, and turned it into Rock Steady Boxing Norway, which is now huge.”

Rune had been cycling outdoors for some years before discovering Zwift in 2020. The online cycling training programme allows multiplayers to connect virtually, while riding indoors. Riders can splash out on a full-package smart bike or opt for adaptive accessories that replace the rear wheel of a regular bike. For a more immersive experience, you can buy accessories such as a fan to simulate headwind.

Discovering a compact, indoor exercise option that connected with a community could not have come at a better time for Rune. “I had Deep Brain Stimulation surgery (DBS) on 11 March 2020, and Norway went into complete lockdown the next day. So I was lucky to have the surgery, which had a huge impact on me. But it meant I could not have any visitors,” he explains. “With time, I found I had lots more energy, and was looking for more ways to exercise. So I removed the back wheel of my road bike, added the trainer and plugged it in, and connected it to the Zwift app on my computer.”

Being able to replicate famous – and challenging – routes opened the door to a new, highly motivating world of exercising at home. “I discovered I could choose different routes in Zwift, for example the last leg of Tour de France, where it is a bit hilly leading up to the Arc De Triomphe and feels heavier to cycle. It really motivated me, and meant I could do really high-intensity training at home.”

The birth of Parkinson’s cycling club ZWAP

Rune began to meet up with other people with Parkinson’s for Zwift riding sessions. “I started doing rides with the Parkinson’s Exercise Group Zwift (PEGZ)  on Zwift, along with people with Parkinson’s in Norway. That was the start of our group,” he says. “Fellow cyclist Rune Bjerke joined the group and wanted to join the Barcelona bike trip we had planned, which we did a lot of preparation for on Zwift. As our friendship developed, we discussed the idea of a cycling club.”

Before long, the cycling group was formally created, incorporating the PEGZ group and facilitating a mix of outdoor and indoor riding sessions. “I came up with the name ZWAP – Zwifters Against Parkinson’s, and Rune (Bjerke) was experienced in creating startups. From there we founded the club, which is now a registered organisation here in Norway.”

The ZWAP Parkinson’s cycling club grew slowly and steadily, from around 15 registered members to a group that now boasts around 130. The club initially organised between one and three meet-ups per week, but now runs sessions almost twice daily.

Welcoming everyone

The range of timings allows people in different timezones, such as North America, to join in. But this is not the only way in which the club aims to make everyone feel welcome.

“We ride as a group and can see our avatars on screen. Zwift has a function to keep everyone together during the group ride – even a world champion alongside a much slower rider. That’s a really important feature for people with Parkinson’s, as your symptoms can feel huge on some days but you can still be part of the group. We couldn’t have this inclusive aspect on an outdoor ride.”

‘Tour de ZWAP’ outdoor challenges help raise awareness of Parkinson's

In addition to the indoor sessions, the club is known for its challenging awareness-raising ‘Tour de ZWAP’ rides. These outdoor missions include last year’s 635km ‘Parktic Race’ across Norway, and a 10-day, 850km event set to start in Portugal in June. There is also still space to sign up for Team West Coast, which will see ZWAP members cycle from Seattle to the WPC 2026 congress in Phoenix, USA.

However, Rune is keen to stress the inclusive nature of the club. “Anyone can join, regardless of fitness level. You are very welcome, whether you can pedal like (professional racing cyclist) Mark Cavendish, or just pedal for five minutes. As long as your pedals are moving, you are in the group.”

Connecting cyclists across the globe

As well as cycling together, riders can connect via a Zoom call during the session. “I have two screens during a ride – one with Zwift, one with Zoom,” says Rune. “Most people join both, as then you get the discussion, the jokes, we talk about whatever comes to mind during the ride.”

ZWAP cycling together, riders can connect via a Zoom call during the Zwift sessions

Discussing Parkinson’s, and related research, is also an important part of the ZWAP experience. “It builds a community inside the club. That’s the real difference for me – to know I have a group of people with Parkinson’s to exercise with me in my basement. In Norway, people live in very remote rural areas, and can quickly become isolated. This makes it possible to be a part of a community and get high-intensity exercise.”

People with Parkinson’s have joined the club from across the globe, with members in Norway, Canada, the US, and UK. They range from those in their forties to their seventies. “We have people who have had Parkinson’s for six months and found us quickly, and some who have had it for 20 years. As well as the bike, you can be part of Zwift on a tricycle, and so some members are doing this,” says Rune. “There is room for everyone with Parkinson’s, and their supporters. You do need some equipment, but we have a lot of experience so can help people get set up.”

Empowering the community to adapt and grow

With a masters degree from the Norwegian School of Sport Sciences, it is perhaps no surprise Rune’s lifelong passion for exercise has influenced his response to his diagnosis. And while community is at the heart of ZWAP, there is plenty of space to set individual targets.
“I have always been very good at many sports, but it is not that easy to be very good with Parkinson’s,” Rune says. “In cycling, to adapt with the diagnosis, you need to change your goals. But we still need to push ourselves, even while moderating our goals – you have to find a balance.”

Boosted motivation, fun and convenience are some of the benefits given by ZWAP members who enjoy exercising this way. For Rune, the effects are both immediate and forward-looking. “For myself, to know that I’m doing something that research says is good for me is important. After a hard workout on Zwift, I feel better, looser, and symptoms like bradykinesia and stiffness are reduced. Endorphins play a part, but I believe it is connected to improving my symptoms. Also, I really believe exercise that raises my heartbeat like this will really benefit me in the longterm. Believing in that really helps me here and now.”

Many ZWAP members also appreciate the steadiness of a Zwift bike, compared to an outdoor ride. “Some may say it doesn’t challenge your balance as much,” Rune says. “But what we with Parkinson’s need as well as cardio, are strong and quick feet. That is what will help prevent falls now and in the future.”

Looking to the future

Be it inside or out, the club’s goal is for “everyone with Parkinson’s to get into a saddle and ride a bike.” While it is an ambitious aim, this “working target” is underpinned by Rune’s characteristic determination.

Campaigner, Rocksteady boxing coach, and the co-founder of ZWAP (Zwifters Against Parkinson’s), Rune Vethe

“It is possible for everyone to start,” he says. “I will not get rid of Parkinson’s in the near future, my symptoms will develop. But I am still going to ride. Be it indoors on Zwift or outdoors, I will adapt. I am already thinking I will get a trike at some point, when it’s no longer safe to ride a two-wheel bike any more. I train hard to delay the development of Parkinson’s, and I truly hope to grow to be so old that I get to sit in a wheelchair.”

Are you interested in joining the ZWAP online cycling group? Membership is free and you can find out more here.

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Have your say: opportunity to join Parkinson’s Europe’s new steering groups

24 March 2025 By Christy McGhee
News steering groupsstrategy

Parkinson’s Europe is calling for volunteers from across the Parkinson’s community to join new steering groups designed to support its 2025-2028 strategy.

The opportunity to become part of a Parkinson’s Europe steering group is open to all people diagnosed with Parkinson’s.  Partners, friends, family and supporters, healthcare professionals and Parkinson’s professionals (both industry and academic) are also all welcome.

The new steering groups will guide Parkinson’s Europe’s new strategy, focusing on its three strategic pillars: Data and Innovation, Empowerment, and Awareness and Visibility.

The role descriptions for each group are now available on Parkinson’s Europe’s website. Each one outlines the purpose, requirements and benefits for joining, as well as the time commitments expected from volunteers.

“Volunteers I have worked with in a number of steering groups previously have said they benefited from being part of the work in ways that they never imagined, and made invaluable connections. You can be part of this connection too,” says Parkinson’s Europe Strategic Director Amelia Hursey.

Seeking all volunteers with an interest in Parkinson’s

Everyone with an interest in Parkinson’s is encouraged to step forward, Amelia says. She adds: “We welcome interest from simply everyone who wants to give their time and support people with Parkinson’s. There are more details within each role description – such as an interest or background in data collection, or social media skills. So, people may be drawn towards a specific route, but it really is the more the merrier.”

Some of the skills and interests the groups are particularly seeking include:

  • Data and Innovation Steering Group (DISG): Experience or interest in advocacy and campaigning activities; an interest in data collection and analysis, and a passion for turning data into actions; an awareness of data sets, health data, research and health innovations
  • Visibility and Awareness Steering Group (VASG): Interested in social media, communication channels, platforms and methods; interest or experience of awareness raising, advocacy or campaigning activities
  • Empowerment Steering Group (ESG): Confident or interested in doing public speaking or being a publicly visible person, talking to many different people; knowledge of Parkinson’s and an understanding of, or interest in, the different stakeholders working in the field; experience or interest in advocacy and campaigning activities

Process for selecting and inviting members to the groups

Expressions of interest can be sent to Amelia, who will then determine the best matches for each group.

“Anyone who is interested in joining a steering group should start by reading through the role descriptions,” says Amelia. “If you would like to put yourself forward, email [email protected] a short explanation of which steering group you are interested in and why.”

The process will consider the attributes each person can bring to the group, as well as what the group can offer them.

“I will review everyone of interest and make sure that each member we invite is the best fit for what we, and they, are looking for,” says Amelia.

Each application will be followed up with an email or phone call to understand more about the individual. “We want to make sure we get the right fit, so we will have a good chat with people who are interested, to learn about knowledge and passion they bring and how they could best benefit from being part of the group,” she adds.

The groups will then be established, and Amelia will contact people throughout April. “There will be more opportunities for others to join the group in future,” she adds. “So if you are not invited to join now, it does not mean you won’t be asked later. Everyone will be contacted personally by me to let them know.”

Members of the Steering groups will then be featured on the ‘Meet the Team’ section of the Parkinson’s Europe website.

Interested in joining one of the new steering groups? Find out more about Parkinson Europe’s steering groups here.
Think you might know someone who would be a great member of Parkinson Europe’s steering groups? Please share the steering group role descriptions with your colleagues, friends and networks, and ask them to spread the word.

 

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“There is a lot of confusion about Parkinson’s”: Parkinson Italia’s role in the Preserving the Brain: A Call to Action initiative 

18 March 2025 By Verity Willcocks
News ItalyParkinson Italia
Image credit: Giovanni Diffidenti

Parkinson’s Europe member association Parkinson Italia (ONLUS) is playing a prominent supportive role in Preserving the Brain: A Call to Action. The initiative by the Prada Foundation focuses on the importance of prevention and early treatment of incurable diseases including Alzheimer’s, Huntington’s, ALS, and Multiple Sclerosis, as well as Parkinson’s.

Its goal is to bring together different stakeholders including research centres, academics, brain health organisations, patient associations and politicians to promote ways in which people can protect their brain health.

It began in October last year with a two-day scientific conference and has continued with an exhibition and a series of talks taking place at the Prada Foundation in Milan until 7 April.

Preserving the brain

In mid-December last year, as part of the Preserving the Brain initiative, Parkinson Italia led a one-day event about Parkinson’s.

Valentina Margio talks about being pregnant and living with Parkinson’s
Image credit: Giovanni Diffidenti

During this event, it shared images of four people with Parkinson’s. Photographed by photojournalist Giovanni Diffidenti, these were: Carla Ardau, a computer scientist who developed a love for climbing following her Parkinson’s diagnosis; Valentina Margio, a pregnant woman who is living with Parkinson’s; Paolo Rota, who has learned to fly everywhere with his flight simulator; and Massimiliano lachini, president of AIGP (Associazione Italiana Giovani Parkinsoniani) since 2024, who has presented a weekly poetry and music show called Alta Voce (Loud Voice) on radioparkies.com since 2020.

Massimiliano lachini, president of AIGP (Associazione Italiana Giovani Parkinsoniani)
Image credit: Giovanni Diffidenti

The event, presented by Italian actor Claudio Beccari and available to watch on YouTube, also featured two roundtable discussions moderated by journalist Nicoletta Carbone. Subjects covered during the day included the importance of early diagnosis and how Parkinson’s affects daily life. Treatment-wise, the roles of integrated therapies and multidisciplinary teams were discussed.

The event also highlighted the importance of community support and the role of family members in managing the disease, as well as the need for comprehensive approaches that take both the physical and emotional aspects of caring for a person with Parkinson’s into account. Advanced treatments like deep brain stimulation, and the role of research in advancing treatments, were also explored.

Paolo Rota has learned to fly everywhere with his flight simulator
Photo credit: Giovanni Diffidenti

Parkinson’s Disease: A disease that is a 100 diseases

The stories of Carla, Valentina, Paolo and Massimiliano were first shared during Parkinson Italia’s ‘Parkinson: una malattia che è 100 malattie’ (‘Parkinson’s Disease: A disease that is a 100 diseases’) press campaign, which was launched on Italy’s National Parkinson’s Day on 30 November and is supported by pharmaceutical company Zambon S.p.A.

This campaign was created by Roberto Caselli, who has been living with Parkinson’s for 16 years, and Elisa Roncoroni, who said: “There is Carla, who challenges the limits of height and Parkinson’s with sport climbing, while Paolo uses the flight simulator to soar ever higher. Valentina caresses her belly during pregnancy, while Massimiliano looks straight into the eyes of the disease without fear. To bring to light the true, multiple faces of Parkinson’s and dispel the false myths that accompany it, we have chosen to focus on what unites them all. We have therefore focused on true stories of courage and patients’ reactions to show the true nature of the disease and restore its complexity.”

Carla Ardau, a computer scientist who developed a love for climbing following her Parkinson’s diagnosis
Image credit: Giovanni Diffidenti

Giangi Milesi, the President of Parkinson Italia, who lives with Parkinson’s, said: “Even today there is a lot of confusion about Parkinson’s, and people think that its only consequences are tremors, movement and balance problems – false beliefs that I myself came up against when – after the diagnosis – I experienced the many different manifestations of the disease. Yet, in these various situations there is an essential common denominator: the desire to react and pursue one’s life goals and passions. Hence the choice to give life to an institutional campaign that, thanks to the telling of true stories of reaction, can reveal the many different faces of Parkinson’s and thus dispel the clichés that characterise it.”

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Europe and the world face challenge as neurological diseases rise, says EAN President

To mark Brain Awareness Week, Parkinson’s Europe spoke to the President of the European Academy of Neurology Elena Moro about its Brain Health Mission and advocacy work
12 March 2025 Verity Willcocks
Insights brain awareness weekEANeurope
Elena Moro

Europe and the rest of the world are facing a “pandemic” of neurological diseases, says Elena Moro, the President of the European Academy of Neurology (EAN), with the economic burden of neurological diseases in Europe alone estimated at €1,7 trillion in 2020.

This figure – covering the costs of medical care, rehabilitation, lost productivity, and caregiving for individuals with neurological diseases including Parkinson’s – is more than the combined costs of cardiovascular disease, cancer and diabetes, according to the EAN.

“That is a massive cost that we cannot afford because the same neurodegenerative diseases are increasing, and the number of neurologists is decreasing,” says Moro. “How can you treat or manage all these people living with their neurological disorder if you don’t start thinking about prevention or managing the diseases a little better?”

Keen to help tackle this immense challenge, the EAN decided to play a more proactive role in improving brain health in Europe.

Moro explains that the idea came to fruition around four years ago, when Claudio Bassetti was EAN president. “He wrote a paper in which he stressed the need for a holistic approach to the brain,” she says.

“We decided to start in a very structured way, with people dedicated to developing a specific plan, which has been published and has five pillars,” says Moro.

The EAN’s Brain Health Mission plan

The EAN’s strategy for improving brain health was published in the European Journal of Neurology in January this year, in an article called “A roadmap toward promoting and improving brain health in Europe and closing the awareness and funding gap”. Its five pillars were listed as: “advancing a global brain health approach; supporting policymaking; fostering research; promoting education; and raising awareness of prevention and treatment”.

Of these, Moro highlights the need for more brain research as particularly important: “There’s a lot of areas that we don’t understand very well. We need to pin down all these determinants of health, and especially brain health, and how to be more effective in dealing with that.

“If we invest a little more in research, in understanding these basic areas, we will take the advantage in preventing and in making neurodegenerative disorders, including Parkinson’s disease, less disabling.”

Brain health matters

“What is written in the roadmap is the framework, right now we are starting to fill the framework with initiatives that we think are the preliminary important action to build further on it,” says Moro. “We have established quite practical initiatives, and we are building on this.”

One of the EAN’s activities, Moro explains, is to work very closely with Europe’s 48 national neurological societies and support them in persuading their respective governments of the urgent need to develop and implement a brain health plan for every European country.

“In Europe, only three countries have a brain health plan. One is Norway. One is Italy, and the other is Switzerland. So, you can imagine that there’s a lot of work to do,” she says.

Moro also adds that each country will need a different plan according to their specific characteristics and population.

“It is different if you live in Norway, or if you live in Egypt, for example. Some cultural factors such as religion, and environmental factors will be different. Several factors have to be taken into account.”

The EAN is also working hard to get global governments to pay attention to brain health. “We went to the G7 last year in Italy; we are going to the G7 in Canada [in June]. We are working with the American Academy, and with the World Neurological Federation, the main international neurological society, to stimulate this area at a political level.”

The message to governments is this, says Moro: “The brain is an investment. You have a treasure, you have to invest in your citizens, and the best way to invest is to preserve their brains, because without the brain, there’s nothing, no economy, nothing.”

The EAN will also spread this message at the EAN Congress in Finland this June. “We have 9,000 people coming, all the neurologists in the societies in Europe. We have several initiatives during the Congress, especially concentrating on the younger generation.”

The EAN, along with partners in the Brain Health Mission, is also working to support the WHO’s 10-year Intersectoral Global Action Plan for Epilepsy and other Neurological Disorders (iGAP), which aims to address the burden of epilepsy and other neurological disorders and improve access to care and treatment for affected individuals, families, and communities worldwide, as well as raise awareness and reduce stigma.

Asked if governments are realising the urgency of the need to improve brain health, Moro says: “I think they’re realising that this is very serious, because the costs [of neurological diseases] are increasing, the number of people living is increasing, and we are not increasing as neurologists. There’s no other solution visible to cope with this neurological pandemic.”

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