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COPPADIS: Spain’s award-winning Parkinson’s study

Spain's COPPADIS study covers 700 people with Parkinson's, producing over 100 papers and abstracts to help us understand Parkinson's better. Here, we speak to its founder, Diego Santos García, and one of the study's members, Paqui Ruiz.
13 August 2024 By Laura Vickers-Green
Stories ResearchSpain

The Spanish COPPADIS study started eleven years ago, in 2013, and has quickly become one of Europe’s largest studies of Parkinson’s.

It began as a draft created during a large Parkinson’s conference by a group of neurologists, members of the Spanish Movement Disorders Group (GETM) and the Spanish Society of Neurology (SEN), who wanted to investigate subjects including the evolution of Parkinson’s, quality of life of people with the condition, the burden on caregivers, and Parkinson’s biomarkers and causes.

The name COPPADIS stands for Cohort of Patients with Parkinson’s Disease in Spain, and today the study covers almost 700 people with Parkinson’s, as well as over 250 caregivers and 200 controls.

What started as a conversation has turned into something of real magnitude: the study has produced over 100 abstracts and papers, with one particularly interesting study in the Journal of Clinical Medicine explore sex differences in motor and non-motor Parkinson’s symptoms.

We talk to the study’s co-ordinator, Diego Santos García, and one of the study’s members, Paqui Ruiz, about what the study has achieved for Parkinson’s in Spain.

Diego Santos García, co-ordinator of COPPADIS

What’s your background?

I’m a Spanish neurologist, and the Coordinator of the Movement Disorders Unit from the Department of Neurology in CHUAC (Complejo Hospitalario Universitario de A Coruña in Galicia) and also I work in Hospital San Rafael, A Coruña.

I am Head of Research Group on Parkinson’s disease and Movement Disorders at the Biomedical Research Institute of A Coruña (INIBIC), President of the DEGEN Foundation, and Member of the Advisory Committee of the Spanish Parkinson’s Federation.

As well as COPPADIS, I’m coordinator of different projects including SAFINONMOTOR, OPEN-PD, VOPARK, and INLEVO-LIFE PD.

Actions aimed to patients have always been a priority for me, such as CONOCE EL PARKINSON, among others initiatives.

How and why was COPPADIS created?

The project was born with the intention to evaluate very comprehensively a population of patients with Parkinson’s in Spain for studying in detail the natural progression of the disease. It is one of the most complete international cohorts, with almost 700 patients included.

What is your role in this group?

I have had the pleasure of being able to coordinate and lead the project. It has helped me learn the great importance of being able to carry out networking or group work, joining efforts. More than 100 researchers from 35 centres in Spain have participated and we have carried out international collaborations.

What are the key achievements that you would like to highlight?

More than 70 abstracts have been presented at congresses and more than 40 articles have been published, in addition to having received several awards.

We have observed very interesting findings on motor aspects of the disease but also on non-motor symptoms, quality of life and autonomy for activities of daily living.

For example, we have observed that there are sex differences in Parkinson’s, such as fatigue or depression are more frequent in women. We also published a paper finding that non-motor symptoms are very prevalent and impact on quality of life of patients, and that motor complications are very frequent even in the early stages of the disease and are associated with a greater non-motor symptoms burden.

We found that depression affects 50% of patients throughout the course of the condition, and is related to impulse control behaviours, which we presented at the MDS Congress in 2018.

We’ve also learned not only that the patient’s condition impacts on the caregiver, but also vice versa: the caregiver’s overload impacts over the patient.

You can find lots more information about the findings of our research here.

We currently have three articles under review, one of them very interesting about the importance of educational level as a protective factor in the development of cognitive impairment in patients with Parkinson’s.

What is the COPPADIS group currently working on? What can we expect in the future?

Recruitment of participants ended in 2023, but we are waiting for the resolution of a public convocation for a research project from the Carlos III Institute. We have already carried out part of the COPPADIS project thanks to a grant from this institution. If we obtain it, we will perform DNA and microRNA genetic analyses of patient samples from the COPPADIS cohort.

One of the objectives is to try to obtain a panel of microRNAs that could predict the outcome of the disease. On the other hand, the project contemplated a five-year follow-up but we are considering making a new cut assessment at 10 years (in 2026 and 2027).

I’d like to thanks the Degen Foundation and other institutions helping as to develop the Project and specially thanks to the patients, caregivers and other participants.

Paqui Ruiz, a person with Parkinson’s and member of the COPPADIS study

Please tell us about yourself.

Most of the people close to me know me as Paqui Ruiz. I am 59 years old and live on the island of Tenerife. I was diagnosed with Parkinson’s in July 2012. I am president of the association Con P de Parkinson for women with Parkinson’s disease. I am also an ambassador for the Degén Foundation and the Davis Phinney Foundation.

How did you hear about the COPPADIS study? And how and when did you get involved?

I found out through my neurologist at the University Hospital of the Canary Islands in 2015, who invited my husband and me to participate in the study.

Have you had previous experience in participating in similar studies?

Subsequently, I have participated in other studies, but not as large as COPPADIS.

Why did you participate in this study? What was your involvement?

I agreed to take part in the study because, knowing that I have such a complex and incurable disease, my contribution and that of other participants could help researchers to learn more about this disease. The study did not only take into account the physical state of the person, but also the cognitive state of the person.

Once a year for five years I had appointments of more than two hours with my neurologist. I had to go without taking any medication and I did all the tests and repeated them again with the medication. My husband also had to participate by answering questions.

What were the study’s outcomes? Do they make sense to you as a person diagnosed with Parkinson’s?

The results were very positive, both as a patient with Parkinson’s disease and as a woman with Parkinson’s disease, because the study confirmed that Parkinson’s disease affects men and women differently.

What were the benefits of participating in this study to you as a person with Parkinson’s?

Because the more you know about Parkinson’s the sooner you can find a way to reverse or control the disease.

Find out more about the COPPADIS study and learn more about Parkinson’s research

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9 new Parkinson’s books in English, Spanish, Dutch and more

From moving memoirs to a helpful handbook and a storybook to explain DBS to children, here's 9 NEW Parkinson's books for 2024 to read this summer.
09 August 2024 Laura Vickers-Green
Advice books

Back in the spring, we brought you a list of recently published Parkinson’s books. The response was absolutely fantastic: not only did many of you engage with the authors and enjoy reading the books, it also led to us receiving even more recommendations for new Parkinson’s books that have been published in 2024.

As ever, this list contains books in multiple languages to try and serve as much of our European audience as possible, including English, Dutch, Spanish and Greek. If your language isn’t covered below, check out the original list (linked above) for more ideas.

Please do keep your recommendations of new Parkinson’s books coming – either tag us on social media, or send us an email with details to [email protected]

New Parkinson’s books in English

Running on Empty: 18,000 Miles Down Africa with Parkinson’s by Guy Deacon

This heroic and adrenaline-packed book recounts Guy’s 18,000-mile trip from his home in the UK to the tip of Cape Town, driving the full length of Africa through 25 different countries to raise awareness of Parkinson’s. Guy was diagnosed with Parkinson’s back in 2010, and the book tells the story of how he managed this monumental trip around his condition, with his adventures including “five breakdowns, one emergency evacuation and 3650 prescription pills”.

Buy Running on Empty for £6.40 (or equivalent currency) on Amazon

Starry Skies, Cosmic Shakes: An Astronaut’s Journey through Parkinson’s disease by Alexandra Boogers and Tine Van Bogaert

This charity children’s book explores the topics of Parkinson’s and Deep Brain Stimulation (DBS) surgery in a way that allows families to start a conversation with children about Parkinson’s in a friendly, non-scary and accessible way. Written by two Belgian neurology professionals, neurologist Alexandra Boogers and neuroscientist Tine Van Bogaert, Starry Skies, Cosmic Shakes is a story of an astronaut called Alex who gets diagnosed with Parkinson’s, begins to take medication, and eventually has DBS surgery.

Download a PDF for free on the book’s website, or buy a hardback copy for 20 Euros + shipping.

Running on Hope! My secret to manage Parkinson’s Disease by Marco Serrabulho

We wrote about this book’s original Portuguese version in our last books roundup, and now it has been translated into English. The book details Serrabulho’s struggles after being diagnosed with YOPD (Young Onset Parkinson’s) 14 years ago at the age of 34. Part of the book deals with how he has used running as a way to cope with his condition, and its inspirational story led to the original Portuguese book winning the Editor’s Choice prize for best non-fiction book of 2023.

Buy for £14.19 (or the equivalent in your local currency) on Amazon

Be Reet: A Life with Parkinson’s by Richard Parkin

Hailing from West Yorkshire in the UK, Richard Parkin has released a book about his life since being diagnosed with Parkinson’s nine years ago, hoping to help raise awareness for the condition. The often uplifting book details his diagnosis and how he has adapted to life with Parkinson’s, and what he does to ensure he doesn’t endure his life, he enjoys it.

Copies of the book are available by contacting Richard at [email protected]

A Son’s Journey: From Parkinson’s Disease Caregiver to Advocate by Dr George M Ackerman

George Ackerman is a well-known and beloved figure in the Parkinson’s community online, running the website Together for Sharon to honour the memory of his late mother, who died in 2020 after living with Parkinson’s for many years. His latest attempt to raise global awareness for Parkinson’s is this poignant and honest book, which tells the story both of his mother’s battle with Parkinson’s and George’s experience as Sharon’s caregiver.

Buy a Kindle edition of the book for £8.85 (or the equivalent in your local currency) on Amazon.

SHAKEN: In ten minutes my life changed by Mark Holt-Rogers

Wellbeing specialist Mark Holt-Rogers has been living with Parkinson’s for over a decade, and this book is his self-help guide to living with the condition, based on his own experiences. The book includes coping strategies, insights into life with Parkinson’s for caregivers and family members, and Mark’s own account of adapting to living with Parkinson’s.

Buy the paperback for £9.99 (or the equivalent in your local currency) on Amazon

New Parkinson’s books in Dutch (and English)

Handboek Parkinson Symptomen: Mensen met Parkinson beter begrijpen en daardoor beter begeleiden by Monique Thoonsen

Physiotherapist Monique Thoonsen has spent much of her career working with people with Parkinson’s, and in 2021 she was diagnosed with the condition herself. This book is the result of her in-depth knowledge of Parkinson’s, raising awareness of the many possible symptoms of the condition, and how to deal with each one.

Buy the book for € 19,99 on Uitgeverij Abessijn here in Dutch and here in English

New Parkinson’s books in Greek (and English)

Parkinson’s Faces Project by Nikolas Koukoulakis

As well as being a power lifter and person with Parkinson’s, Nikolas Koukoulakis is also a talented photographer, and he has created this book of captivating black-and-white portraits of athletes with Parkinson’s from around the world. The photographs give a striking glimpse into the subjects’ personal stories with Parkinson’s, from diagnosis to the current day, and also feature uplifting quotes (in both Greek and English).

Buy for € 7.80 from Fylatos

New Parkinson’s books in Spanish

A La Sombra Del Parkinson: 15 Relatos Llenos de Vida by Various

This book was put together by 15 friends with early-onset Parkinson’s, telling their individual stories of what it was like to be diagnosed with Parkinson’s at such young ages, from struggling to get a diagnosis to finding companionship in the Parkinson’s community. Indeed, the book itself came out of a WhatsApp group of people with Parkinson’s in Spain, and is full of the positivity of friendship and camaraderie.

To buy the book (€ 15 + shipping), contact the authors on Facebook or Instagram

Not-so-new Parkinson’s books still worth reading!

We’ve also been recommended two other books since our last article which were published in previous years but still well worth looking up:

Kopfbahnhof: Leben mit Young Onset Parkinson by Gerald Ganglbauer

This latest book from Austrian-Australian writer Gerald Ganglbauer, who was diagnosed with Parkinson’s almost 20 years ago at 48 years old, was published in 2020. It’s a personal account of his life with Parkinson’s, detailing his travel adventures, reunions and personal relationships in an open, honest and understated way.

Buy for € 29,90 by emailing [email protected]

Just Wobbling Along: My First Five Years with Parkinson’s Disease by Helga Mellor Macfarlane

Published in 2020, this hilarious and heartbreaking read tells Helga’s deeply personal and honest account of daily life during the first five years of having Parkinson’s, after being diagnosed in her early fifties. It’s disarmingly honest and full of Helga’s determination and joyous personality.

Buy as a paperback for £15.99 or e-book for £4.99 on Amazon

Not Afraid to Fall by Brian Hall

Brian’s Parkinson’s symptoms appeared at just 14 years old, and this book recounts how his Parkinson’s has been a formative part of his life in New England, USA over the past five decades. It especially focusses on how he has used physical activity and exercise to help treat his Parkinson’s symptoms, from mountain biking and sailing to golf and ocean swimming, and is also filled with advice for living with Parkinson’s.

Buy a paperback for £15.93 or Kindle edition for £6.28 on Amazon

If you’ve got any recommendations of Parkinson’s books, email us at [email protected]

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Parkili: Moving Mountains for Parkinson’s heads to the Himalayas

16 people with Parkinson’s from Belgian organisation Parkili will climb the Himalayas in Nepal this October.
07 August 2024 Verity Willcocks
News BelgiumclimbingParkilisummer of sport
The Parkili expedition to Kilimanjaro in 2017

A group of people with Parkinson’s from Belgium will scale new heights and raise awareness of the condition when they climb the Himalayas in Nepal this October. The challenging expedition has been arranged by Parkili, a Belgian organisation which provides regular sporting activities for people with Parkinson’s.

The 16 participants with Parkinson’s, whose ages range from 39 to 67, will be accompanied by nine ‘buddies’ who will provide medical and moral support during the gruelling trek, which will take place from 19-30 October.

Covering 10 to 15 kilometres each day, and overnighting at lodges, the group will walk through the Himalayas via the Langtang Valley to their final destination, the Tsergo Ri, at 4984 metres altitude. Along the way, they will encounter challenges including altitude sickness on top of their Parkinson’s symptoms.

A photo of the Parkili team 2021 expedition at the top of the the M'Goun in the Atlas Mountains
The Parkili team’s 2021 expedition took them to the top of the the M’Goun (4071m) in the Atlas Mountains in Morocco

Describing the expedition, Parkili says: “Moving mountains for Parkinson’s together is a unique experience, creating friendships and a feeling of personal empowerment for life. Those who participate will be faced with an intense and unforgettable adventure and a sense of achievement, which will not only boost their own mental and physical resilience but will also inspire others to make dreams come true and keep moving.”

The participants have been training and preparing for the trip since last autumn, as well as publicising and fundraising for it and raising awareness of Parkinson’s in the process.

Some of the participants outlined what they hope to get out of the trip:

Dominik Selleslag, 64, is looking forward to experiencing “the beautiful nature and different culture in Nepal with fellow people with Parkinson’s”; Greet van Ighem, 65, wants the trip to show that she is “more than a Parkinson’s patient”, while Johan van Steenberge, 67, wants to “push his boundaries” alongside fellow people with Parkinson’s.

Eline Verriest, the youngest 2024 expedition member with Parkinson’s, states, “I wish to demonstrate through my participation that Parkinson’s can also affect young individuals, including those with school-age children and those still building their careers. I advocate for increased attention to this condition and aim to raise awareness of its psychological and non-visible motor symptoms. I have already secured several sponsorship contracts through my social network, but our non-profit organization could always benefit from additional financial support to enable our members to enjoy the benefits of taking up challenges and participating in sports together.”

A photo of the Parkili team on top of a rock formation in Jordan
The 2023 trek took the Parkili team through the Jordanian desert

The expedition is the fourth such trip undertaken by Parkili. The organisation was formed in 2017 after a mixed group of people with and without Parkinson’s fulfilled a dream to climb Mount Kilimanjaro while also raising awareness about Parkinson’s.

Previous expeditions include climbing the highest mountains in Morocco in 2021 and trekking in Jordan in 2023.

Wini D’Hooge described her experience: “Joining Parkili was like coming home, and participating in Expedition ’21 to Jordan felt like a fresh start. Shifting the focus from fear of failure to achieving goals gave me new courage and zest for life. Now, I volunteer at Parkili because I want all fellow sufferers to know about similar initiatives that can improve their quality of life.”

Johanna, who participated in the Kilimanjaro expedition in 2017, says:

“This wonderful experience made me realize that quality of life is not so much determined by what happens to you, but rather by how you choose to deal with it. The story of setting big goals and achieving them was inspiring even for people facing setbacks other than Parkinson’s. The story was even shared in a prison, where it was greatly appreciated. And now I can say: ‘Thanks to my Parkinson’s, I climbed Kilimanjaro.'”

Find out more about Parkili and read our previous article about their trek up Kilimanjaro in 2017.

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Parkinson’s and coughing: is coughing a symptom of Parkinson’s?

If you're wondering if Parkinson's and coughing are related, or if coughing is a Parkinson's symptom, read our quick guide to find out more.
02 August 2024 By Laura Vickers-Green
Advice coughparkinson's symptoms

If you’re curious about whether there’s a link between Parkinson’s and coughing, you might be wondering things like whether Parkinson’s makes you cough more (if you’ve already been diagnosed), or whether a cough can be considered a symptom of Parkinson’s in people searching for a diagnosis. Here, we take a look at the facts behind coughing and Parkinson’s, and answer these two questions.

Is coughing a symptom of Parkinson’s?

The short answer to this is no. Having a cough is not linked to early signs of Parkinson’s, so if someone does have a cough it would not be used as a diagnostic factor.

There are around 40 medically acknowledge symptoms of Parkinson’s, including tremor (shaking), slowness of movement (bradykinesia), muscle rigidity or stiffness, and walking and balance problems. These are known as “motor” (or movement) symptoms, and there are also a range of non-motor symptoms such as anxiety, sleep issues, and bowel and bladder problems.

While coughing is not a symptom of Parkinson’s, it can sometimes occur as a result of other Parkinson’s symptoms, such as eating, swallowing and saliva issues, which can for example cause you to cough or clear your throat a lot. Treatment for this can include Speech and Language Therapy and Occupational Therapy.

Does Parkinson’s make you cough more?

This 2021 article in Brain Sciences journal confirms that coughing is one of a few respiratory issues observed in people with Parkinson’s.

This can be for a variety of reasons, including as a result of certain Parkinson’s medications, and also later on in the condition when people with Parkinson’s may move around less, so rarely encounter respiratory distress, which can make them more susceptible to coughs.

The paper cites an earlier study from 2007 which found that 17.9% of people with Parkinson’s reported a cough as one of their symptoms.

The paper also references a 2009 study, which showed that coughing in Parkinson’s can be eased with a treatment called Expiratory muscle strength training (EMST), which uses a device to exercise and increase the maximal pressure of the expiratory muscles.

In conclusion

While coughing is sometimes observed as a symptom in Parkinson’s, it isn’t a symptom of Parkinson’s. A cough would be a resulting effect from other symptoms linked to the changes in the body that are happening due to Parkinson’s as it progresses – coughing is not considered a ‘symptomatic feature’ in itself.

Find out more about the symptoms of Parkinson’s and Parkinson’s treatment options.

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What does Parkinson’s feel like? Call for submissions for new comic book

A new illustrated book by Barbara Salsberg Mathews, an artist living with Parkinson's, gives a visual answer to the question "What does Parkinson's feel like?"
01 August 2024 Laura Vickers-Green
News artbarbara salsberg mathewsbooksCanadaComic

The author of a new Parkinson’s comic book is calling for people with the condition to submit descriptions answering the question “What does Parkinson’s feel like?”, with their answers set to be turned into illustrations for the book.

Barbara Salsberg Mathews, a Canadian artist who was diagnosed with Parkinson’s in early 2020, is behind the new comic book, called What Parkinson’s Feels Like: More Than 40 Symptoms, which she hopes will build empathy, inform and raise awareness about Parkinson’s. She explains:

“This project came about after many people with Parkinson’s noted that when they shared their diagnosis, often family, friends and clinicians reacted by looking at us for a checklist of symptoms (e.g. a hand tremor). This often left people with the condition feeling unseen as a person. But we are much more than our symptoms, we are people with Parkinson’s aiming to go about living our best lives.”

Barbara shared a post to the social media platform X (formerly Twitter) asking her followers “what does Parkinson’s feel like for you?”, and received some creative and insightful responses. One user, @SethGillman, from the UK, responded:

 


Barbara has already transformed Seth’s description into an illustration for the book as an example of how the book can bring the truth of what Parkinson’s feels like to life:

“Parkinson’s feels like I’m on 1% and can’t find my charger” Seth Gillman. Illustration: Barbara Salsberg Mathews

Another submission provided by Nina, from Berlin in Germany, described Parkinson’s as:

“Sometimes when I look calm on the outside, there’s a storm going on inside me which people can’t see.”

Barbara has turned the above quote into this powerful illustration for the new comic book:

An image illustrating the answer to "What does Parkinson's feel like?"
“Sometimes when I look calm on the outside, there’s a storm going on inside me which people can’t see.” Nina. Illustration: Barbara Salsberg Mathews

The proposed comic book has already had enthusiastic backing from clinicians who work with people with Parkinson’s. Professor Jane Alty, neurology staff specialist at the Royal Hobart Hospital, University of Tasmania wrote:

“I’m a very visual learner and these images really help me understand the personal perspective of living with Parkinson’s. I think a book or short movie of these would be very powerful training for us clinicians too.”

Barbara hopes to make What Parkinson’s Feels Like: More Than 40 Symptoms available free to download in as many languages as possible to help people around the world understand what it’s like to live with Parkinson’s. When published, the book will be available to download on the Parkinson’s Europe website, with the option to leave a voluntary donation to Parkinson’s Europe, Parkinson’s Canada or other Parkinson’s charities.

Barbara previously created another comic book during the coronavirus pandemic called Kid Covid Fights Back, which helped to explain why Covid prevention measures were important in a gentle and fun way to alleviate children’s fears about the pandemic. Available in five languages and free to download, it helped to raise $500 in donations for a local arts council.

Call for submissions: what does Parkinson’s feel like for you?

If you would like to offer your own description of what Parkinson’s feels like, to be turned into an illustration for the book, please either:

Find more information about Parkinson’s and the symptoms of Parkinson’s

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Parkinson’s research trial numbers remain “remarkably” consistent, annual report finds

An annual report shows 136 drugs trials taking place in the Parkinson's research community, but moving to phase 3 trials remains a challenge.
26 July 2024 Laura Vickers-Green
News drug trialmedicationResearchThe Cure Parkinson's Trust

For the fifth year in a row, the Michael J Fox Foundation, Cure Parkinson’s and Parkinson’s research advocates have released an annual report on Parkinson’s drug therapies currently undergoing clinical trials, with the 2024 report showing numbers of trials have remained “remarkably” consistent with previous years.

Parkinson’s research trials in numbers: three key facts

  • The 2024 report, published in the Journal of Parkinson’s Disease, revealed there were 136 active clinical trials registered on ClinicalTrials.gov as of January 31 this year, compared to 139 trials the previous year.
  • Of the 136 active clinical trials this year, 56% were for “symptomatic treatments” – drugs which improve or reduce Parkinson’s symptoms – compared with 44% for “disease-modifying treatments” (DMT), which aim to slow down the progression of Parkinson’s. This is almost identical to last year’s 55/45 split.
  • There are three phases to a drug trial, and this year’s report showed 58% of the trials were in Phase 2, 30% were in Phase 1 and only 12% were in Phase 3.

There were also more trials of drugs to help non-motor symptoms (symptoms not related to movement) this year.

Speaking of the consistency of Parkinson’s research trial numbers of the last five years, Cure Parkinson’s Director of Research, Dr Simon Stott, said:

“One of the truly remarkable features of the last five years of these reports is that the number of active clinical trials has stayed relatively stable. This is ‘remarkable’ because we had a global pandemic in the middle of this period of time. It is a testament to the participants and the researchers involved that activities were not more disrupted.”

The 2024 report included this pie chart showing the different Parkinson’s drug trials taking place:

A pie chart showing all the drugs currently undergoing Parkinson's research trials

 

Phase 3 trials remain a challenge

Drug trials are split into three phases:

  1. Phase 1 assesses the drug’s short-term safety
  2. Phase 2 assesses short-term safety and begins to explore how effective the drug is at treating the condition it’s designed for (in this case Parkinson’s)
  3. Phase 3 investigates the drug’s long-term safety and how well it works on a large group of people with the condition it’s supposed to treat.

This year, just 16 Parkinson’s drug trials were in Phase 3, and only three of these were disease-modifying therapies (DMT), designed to slow down Parkinson’s progression. This number has halved since last year’s report.

As a result, the 2024 report concludes that “the drug development pipeline for Parkinson’s is robust, but more progress needs to be made with late-stage testing of treatments to slow the disease”, with Cure Parkinson’s adding:

“With the importance of disease-modifying therapies for an eventual cure for Parkinson’s, there is a clear need for further initiatives that will facilitate the progression of drugs through the clinical trial pipeline and into subsequent phases of testing.”

Read more about Parkinson’s research here.

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6 documentaries and films about Parkinson’s exercise and sport

These films about Parkinson's sporting achievements tell powerful stories, and come from across Europe, including France, Germany and the UK.
24 July 2024 Laura Vickers-Green
Stories Documentaryexercisefilmfrancesummer of sportUSA

There are many inspiring films about Parkinson’s, from Michael J Fox’s Emmy-winning Still to the BAFTA-winning Isabella, but for our Summer of Sport we wanted to focus on films that tell powerful stories of Parkinson’s sports and exercise.

We’ve selected six examples from across Europe and beyond, in a variety of European languages, including English, French, Dutch and German, covering everything from dancing to climbing mountains! Let’s get inspired:

1. Ma Vie Est Défi (France)

French

Released in 2022, this poignant film follows former professional golfer Yves Auberson, who was blindsided by a Parkinson’s diagnosis at the age of 35. Despite struggling badly with dyskinesia (involuntary movements), Yves sets himself a challenge: to walk 1,000km through the Swiss Alps. This is a moving film about how Parkinson’s doesn’t condemn you to a life of inactivity, showing how Yves has fought to overcome so much in the 15 years since his diagnosis.

Find out more about Ma Vie est un Défi and purchase the DVD on the Jupiter Films website.

2. Outrunning Parkinson’s (USA)

English

This moving short film from 2015 tells the story of Michael Westphal, who despite being diagnosed with Parkinson’s in 2003, is determined to run a marathon to raise funds and awareness for Parkinson’s. Michael had been an elite runner prior to his diagnosis, and the film shows how his Parkinson’s symptoms ease while he is running, but it also shows the immense strength and courage needed to reach his goal. As films about Parkinson’s go, this one is particularly touching.

You can watch the full 12-minute film above, followed by a Q&A with Michael himself.

3. Together Against Parkinson’s (Germany)

German with English subtitles

Centring on the 2020 ITTF Parkinson’s Table Tennis World Championship in Berlin, this film tells the story of the Yuvedo Foundation, the German charity who organised this event and have developed a community of people with Parkinson’s who are determined to fight for a cure. What’s clear throughout this film is the team’s determination and the strength they get from being together as a community – Together Against Parkinson’s is a great example of the social and communal benefits of exercising with Parkinson’s.

Find out more about the Yuvedo Foundation‘s work.

4. Ride with Larry (USA)

English

This award-winning documentary from 2013 tells the incredible story of how retired police captain Larry Smith embarks on a 300-mile bike ride across his home state of South Dakota to show just how much you can achieve with Parkinson’s. Larry had been living with Parkinson’s for 20 years by the time this film was made, and the documentary gives an intimate insight into his life with the condition, exploring the stigma of Parkinson’s, and Larry and his family’s incredible spirit in fighting against this and showing just what is possible.

You can watch an 8-minute clip of Ride with Larry here or rent the full 90-minute film on Amazon Prime.

5. Parkfit: Leven met Parkinson (The Netherlands)

Dutch

The film shows the impact of the Parkfit study at the Radboud University Medical Center in Nijmegen, The Netherlands between 2008 and 2012. During the study, 600 people with Parkinson’s undertook an exercise trial, with half only receiving specialised physiotherapy, and the other half receiving both physiotherapy and the Parkfit program, which encouraged people to gradually increase their exercise and live a more active lifestyle. The results showed the participants in the ParkFit group exercised more often, were fitter and more safe when they exercised, without an increase in falls. This film tells the story of some of the participants and their journey to becoming more active, and how this has impacted their overall quality of life.

Watch the full 18-minute film in the video above.

6. Cursed2Move (USA)

English and German, with English subtitles

While many of the films about Parkinson’s in this list are about extreme sporting feats, Cursed2Move is universally relateable, exploring how dance affects the lives of people with Parkinson’s. Filmmaker Bettina Rotzetter follows Dr Ines Debove, a neurologist from Bern University Hospital, as she visits Parkinson’s dance classes, beginning in Switzerland, before travelling to New York to visit David Leventhal and explore his famous Dance for PD programme. Like Parkfit: Leven met Parkinson (above) this film also includes useful testimony from renowned neurologist Professor Bas Bloem about the science behind why dance is so beneficial to Parkinson’s.

Watch the 25-minute film in full above.

Find more films about Parkinson’s here and visit our Sports & Exercise hub for more information about becoming more active with Parkinson’s

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Parkinson’s Europe Engagement Network passes 500 subscribers milestone

As the Parkinson's Europe Engagement Network surpasses 500 subscribers, we share stories about how it has helped the European Parkinson's community so far.
17 July 2024 Laura Vickers-Green
News engagement networkeuropeParkinson's EuropeResearch

We are thrilled to announced that, in just over six months since launching at the end of 2023, the Parkinson’s Europe Engagement Network has already surpassed 500 subscribers. This is a huge milestone for us and the European Parkinson’s community, who continue to come together to share resources and knowledge to support the 1.2 million people living with Parkinson’s in Europe, and help shape the future of Parkinson’s care.

We launched the Parkinson’s Engagement Network to help deliver tailor-made opportunities direct to the inboxes of the European Parkinson’s community, including knowledge-building webinars and workshops, the chance to share experiences and opinions in surveys, community-building sports, leisure and creativity activities, and of course the ability to take part in and shape Parkinson’s research trials.

Highlights from the first six months of the Parkinson’s Europe Engagement Network

Since January 2024, our Engagement Network has already shared over 20 opportunities with subscribers.

We’re delighted with the positive feedback we’ve received, from both the professionals submitting opportunities and the participants themselves. Three highlights from this feedback include:

1. The sign-up process is “quick and easy”

In February one of our early subscribers, Veronica from Malta, shared this feedback:

“Signing up to the engagement network was quick and easy. I was able to specify my areas of interest as well as add my contact details. Since I have signed up, the opportunities I have been notified of have been of interest to me and it has been great to receive this information directly in my inbox. I would recommend signing up to the Engagement Network so as not to miss out on any opportunities that may be relevant to you.”

2. Sharing your experiences of Parkinson’s is “rewarding” and “incredibly beneficial in shaping research”

In March, Tanya* from the Netherlands attended a Servier workshop via the Engagement Network, and sent this feedback:

“Being invited to participate as a stakeholder felt valued. The online workshop was clearly prepared, and everyone had a chance to share their thoughts. The feedback I received was positive. It felt good to know my insights as a stakeholder were valued.

“I’m absolutely interested in remaining a member of Parkinson’s Europe’s Engagement Network and getting involved in future activities. Having an engagement network to contribute to is important, and being called upon to use my experience is rewarding.

“The activity was highly relevant to my interests and knowledge. I’m passionate about improving Parkinson related research, and the feedback session directly addressed that. It was also beneficial to connect with others across Europe facing similar challenges.

“Additionally, I strongly believe it’s valuable for Parkinson’s Europe to actively leverage its members’ knowledge base. People with Parkinson’s have a wealth of experience and insights that can be incredibly beneficial in shaping research and initiatives.”

3. As a researcher, it’s “very easy” and “extremely valuable” to share opportunities with our Parkinson’s Engagement Network

Researcher Julia Hirschwald circulated a research project with the Engagement Network in January, and was pleased with how easy it was to submit her project to the network:

“It was very easy. I sent an email to Parkinson’s Europe and received an answer already the following day. I then simply signed up for the Engagement Network, completed a quick form and the team at Parkinson’s Europe did the rest. Having the opportunity to share my research opportunity with Parkinson’s Europe is extremely valuable for me as it can be difficult to reach people living with Parkinson’s online. Therefore, I highly appreciate this opportunity.

“If you are looking for help to reach people living with Parkinson’s then I can highly recommend reaching out to the Parkinson’s Europe Engagement Network. It is very straightforward and the people working for Parkinson’s Europe are extremely friendly and supportive.”

As a next step, we’re committed to take our subscriber base from the hundreds into the thousands as quickly as possible, so we can continue helping the European Parkinson’s community to connect with and benefit each other in new and exciting ways.

Learn more and sign up to the Engagement Network, or find out more about sharing your work with the Engagement Network.

*Name changed to remain anonymous

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Cycling with Parkinson’s: “Riding my bike is when I feel closest to normal”

With many cycling enthusiasts tuning into the Tour De France, we talk to three keen cyclists with Parkinson’s who reveal what benefits travelling on two wheels gives them.
15 July 2024 Verity Willcocks
Stories Croatiacyclingexercisesummer of sportUK

With the 2024 Tour de France well underway and thrilling as ever, watching the coverage on TV might have made you wonder about giving cycling with Parkinson’s a try. We’ve spoken to three people with Parkinson’s about their love of cycling to find out how it benefits their condition, and why they find cycling so rewarding.

Dejan Đuran: “Riding my bike is when I feel closest to normal functioning”

Dejan Đuran from Croatia is in his early fifties and was diagnosed with Parkinson’s at 48. For him, cycling combines exercise with his love of the outdoors.

“Although I have been riding a bicycle since childhood, I started taking cycling more seriously after the symptoms of Parkinson’s prevented me from actively engaging in hiking and mountaineering,” he says. “I have always loved spending time in nature and going on long, demanding hikes, but due to health problems, I had to find an alternative that would allow me to stay active.”

However, it got to the point where his Parkinson’s symptoms meant that he could no longer ride a regular bike.

“A friend visited me and suggested I try out his electric bike. The moment I pedalled that bike, I knew it was the solution I was looking for.

“Riding an electric bike, whether due to the reduced effort or the different muscle activation compared to walking, I don’t experience symptoms like muscle cramps or my legs freezing in one position, and the tremors in my hands are much less. The only symptom I struggle with while riding is maintaining balance,” he says.

Dejan’s passion for cycling – and for raising awareness about Parkinson’s – is such that he has been on much longer rides across Europe. At the end of April, he began riding a shorter version of the EuroVelo 13, and expects to reach his final destination, the Baltic Sea, at the end of July.

Dejan has also set up an organisation called Living with Parkinson’s – Cycling – with the slogan “start now and immediately” – through which he undertakes short cycle rides with other people with Parkinson’s, as well as those who don’t have the condition.

Describing why cycling is so important to him, Dejan says: “Riding my bike is when I feel closest to normal functioning, without the constant reminder of my Parkinson’s symptoms. It is not just a physical activity but a way to fight the progression of the disease and preserve my quality of life. In those moments, I feel like I can overcome the obstacles Parkinson’s imposes on me, which is incredibly motivating and essential for my daily life. Cycling has become my new way of coping with the challenges brought by the disease and continuing to live a fulfilling and active life.”

Keith Wilson: “The adrenaline I get from downhill cycling turns the clock back”

Keith on the turbo trainer

Keith Wilson, 73, from Darlington in the UK, was diagnosed with Parkinson’s in 2020, just as the Covid-19 lockdown began.

“I’ve always done a little bit of cycling, but my main sports were running and climbing. Before Covid, I cycled twice a week with Darlington Cycling Club, normally 60 miles or so each day.”

Like Dejan, Keith has been on long-distance cycling trips with some of his friends. “This year, we completed a tour of the Zeiderzee in Holland. We cycled from Newcastle to North Shields and caught the ferry to Ijmugen near Amsterdam,” he says.

To train for these longer trips – or when it’s too wet to ride outside – Keith cycles his bike in his garage while using a turbo trainer (which keeps the bike stationary). At the same time, he wears a VR set and uses Beat Sabre, a program where you ‘drum’ with your arms in time to music.

“You hold a ‘light sabre’ in each hand and have to split blocks coming towards you with the right colour sabre, in the direction indicated, and on the beat while dodging obstacles. I have The Rolling Stones and a rock soundtrack – Nirvana, Foo Fighters – and the combination of music with an upper body workout while pedalling is very enjoyable. I credit Beat Sabre with restoring my sense of balance and coordination,” he says.

Asked what he enjoys about cycling, Keith emphasises the high it gives him.

“The adrenaline rush I get from fast downhill cycling is almost priceless and was one of the key turning points in making me feel I could battle the condition. I joke that in Back to the Future the DeLorean car turns into a time machine at 88mph and that I can achieve the same effect at 38mph. The adrenaline I get from downhill cycling turns the clock back and makes me feel ‘normal’. It’s not endorphins but adrenaline, which my consultant says is chemically very similar to dopamine.”

Katherine Buttfield: Cycling “helped me forget I even had Parkinson’s”

Katherine and her partner on their tandem bike, Bluebell

When Katherine Buttfield, who lives in Nottingham in the UK, was diagnosed with Young Onset Parkinson’s at the age of 46 seven years ago, one of the things she worried about was that she might no longer be able to ride a bike.

“But that didn’t seem to be the case. Sitting on a bike helped me forget I even had Parkinson’s,” says Katherine, who has loved cycling since the age of seven.

“I’m a commuter cyclist – I cycle every day, sometimes several times a day – riding in short, fast bursts to get me to various places, whether it’s to meet a friend for coffee, go to the cinema, get to the gym, or do my job as a part-time carer in the community. Sticking to the cycle paths and cut-throughs is quicker and safer than taking the car.”

On top of this, she often goes on long rides with her partner on their specially made tandem, Bluebell. They have even cycled the 196-mile Lakes and Dales Loop cycle route on it.

Apparently, riding in tandem can push people with Parkinson’s harder, which can reap benefits. Katherine quotes a study called Neurorehabilitation and Neural Repair (Ridgel et al., 2009), which found that riding in tandem with a physiotherapist/trainer setting the pace in the front seat pushed people with Parkinson’s in the back seat to work harder than a control group who were on single bikes and cycling at their own pace.

“The results showed that people with Parkinson’s on tandem bikes performed better than the other group and significantly improved their motor symptoms (by 35% on the Unified Parkinson’s Disease Rating Scale),” says Katherine. “The scientists concluded that forced exercise enhances neuroplasticity in the brain.”

Since being diagnosed with Parkinson’s, Katherine has become more active, also going Nordic walking and doing Pilates on top of cycling. “Since having Parkinson’s, I now enjoy all sorts of exercise. I urge everybody with Parkinson’s to keep moving and keep exercising!”

Find out more about cycling with Parkinson’s – and plenty of other ideas for staying active – on our Sports & Exercise hub.

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Exercise and Parkinson’s: 6 key resources for health professionals

These handy exercise resources for Parkinson's healthcare professionals come from the Michael J Fox Foundation, Parkinson's UK and more.
09 July 2024 Fiona Montague
Advice exerciseresourcessummer of sport

As part of our Summer of Sport campaign, we’ve been looking at tips and guidance to help people with Parkinson’s get active and find the right exercise for them.

Whether you are a health professional wanting to include physical activity into your consultations or looking to signpost patients to ideas on getting started with exercise, we have found six key resources for health professionals and people living with Parkinson’s.

1. Move for medicines

This UK-based organisation provides clinicians and allied health professionals with accessible, evidence-based, condition-specific information to help give advice on physical activity at all stages of treatment pathways. They also provide toolkits for hospitals to help people be more active during and after their time in hospital. The project has been developed in collaboration with experts, professional bodies and charities representing patients and healthcare professionals in each disease area. Check out the Parkinson’s specific step-by-step guides.

2. Exercise framework for professionals

Developed by Parkinson’s UK, this framework includes key messages for professionals and examples of exercises. The framework is aimed at helping people with Parkinson’s choose exercise styles that are right for them and their symptoms.

3. Guide to overcoming exercise barriers in Parkinson’s

This recent guide was developed by Parkinson’s Europe President, Josefa Domingos, who is a neuro physical therapist specialising in Parkinson’s and other movement disorders. The downloadable 10-page guide outlines the common exercise and fitness issues faced by people with Parkinson’s – and how to overcome them. Currently this is available in four languages but watch this space as we aim to translate it into further European languages in the future. (Think you can help us translate the guide into another language? Email us!)

4. Guidance for professionals delivering exercise remotely to people with Parkinson’s

Another great guidance document from Parkinson’s UK contains helpful tips and hints for health professionals for professionals delivering physical activity remotely to people with Parkinson’s.

5. Make your move: exercise for brain health and life with Parkinson’s

The Michael J. Fox Foundation has created this comprehensive guide to answer questions such as: “How hard should I work?” “How many times a week should I exercise?” “How do I work out with symptoms, as disease progresses, as I get older and have more aches and pains?” “How can I motivate my loved one with Parkinson’s to move more?” This resource answers these questions and more and offers practical tools and tips for exercise, wherever you are in life or life with Parkinson’s.

6. Parkinson’s exercise recommendations

A downloadable fact sheet developed by the Parkinson’s Foundation. This short and easily digestible fact sheet is now available in nine languages (English, French, German, Italian, Korean, Mandarin, Portuguese, Russian and Spanish)

And finally, don’t forget to signpost your patients to the wide range of resources available on the Parkinson’s Europe website.

In addition to the information and resources on our Physical Activity and Exercise page, we have also created a Parkinson’s Sports and Exercise Hub with listings, contacts and useful information on a wide range of physical activities, from cycling to powerlifting.

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Treasured memories: how to create a collaborative family art project

Art and other forms of creativity can be very therapeutic for the Parkinson's community. Canadian artist and person with Parkinson's, Barbara Salsberg Mathews, gives her tips for making treasured memories by creating a family art project.
08 July 2024 Barbara Salsberg Mathews
Advice artcreativityfamily

Scrapbooks, photo albums and videos are the usual methods for tracking treasured memories, but this can also be done by creating a family art project: a work of art that families can collaborate on together. It’s a way of recording significant memories with loved ones.

I recently led a collaborative family art project by tapping into a family’s treasured memories. This project uses acrylic paint and collage.

Here are some steps to guide you in making your own family art project:

1. Begin by exploring what acrylic paint can do.

If mistakes are made, it’s easy to paint over and start again. Make different textures by pressing various items (see the supply list at the end of this article for examples) into paint, then transfer this onto paper.

2. After playing with the paint, participants collaborate on an acrylic painting with ’treasured memories’ as the theme.

Collage images of printed family photos and / or treasured objects (see the supply list at the end of this article for examples), such as dried flowers, can be used. If using photos it helps to print them on standard copy paper. It’s helpful if these images can be resized to fit onto a canvas. They are cut out and glued onto the painted canvas using polymer medium. Polymer medium is similar to white glue, which dries clear.

3. Decide on an overall mood for the artwork.

The example above shows an uplifting feeling. This was created with warm ochre earth tones and a brilliant blue sky with a splash of sunlight. Textures are added on top of the base colours by using the various printing techniques explored earlier.

4. Next, examine possible focal points where the centre of attention would be.

It helps to first discuss how different elements can attract the viewer’s focus. For example: contrast, placement and size of objects.

5. The family members are ‘the stars’ in this painting.

The artwork above shows the family placed in the centre of the composition. Other key images are placed around the canvas then re-positioned as ideas became more defined. Painters tape is used to temporarily position the images and objects before gluing them in place.

Barbara working with her friend Margie Johnson, who lived with advanced ALS, on a family art project

6. If a participant’s arms are too weak to lift up to the canvas, a long cooking spoon, or ruler can be used to tape on a paintbrush to extend its reach.

In this photo our artist holds a retractable back scratcher with a paint brush taped to it, allowing her to reach the canvas while I hold the artwork on her lap.

7. It’s helpful to use paint to blend the cut-out collage images into the surroundings.

Here is an example of before and after doing this:

8. Once the painting is finished, add a layer of polymer medium over the surface of the painting.

This protects the artwork from damage and keeps collage pieces in place. Next, paint the edges of the canvas and add a wire for hanging.

I hope you enjoy the process of creating this artwork together, celebrating treasured memories while creating new ones.

List of useful family art project supplies:

  • Painters tape, scissors, polymer medium (or white glue with a small amount of water to make it the texture of yoghurt)
  • Items used to print textures, e.g. stencils, bubblewrap, sponges, mesh bags and crumpled plastic bags
  • Acrylic paints (e.g. non-toxic, fluid paint), paint brushes of various sizes
  • Collage images, small keepsakes such as movie tickets, a feather, map, dried flowers and a lock of hair
  • Large pre-stretched canvas
  • To clean brushes use small containers with water, paper towel or rags

Find out more about creativity and Parkinson’s. Photos supplied by the Baskin-Johnson Family

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Parkinson’s sleep issues: 96% of people with Parkinson’s affected, survey finds

The results of a global sleep survey by advocacy group PD Avengers is a wakeup call about how universal Parkinson's sleep issues are.
03 July 2024 Laura Vickers-Green
News globalPD Avengerssleepsurvey

A new worldwide survey about Parkinson’s sleep issues has highlighted the significant impact of nighttime symptoms on people with Parkinson’s and their caregivers.

The PD Avengers, a global Parkinson’s advocacy group, conducted their Surveying Late Evening Effects of Parkinson’s (SLEEP) survey in collaboration with pharmaceutical company AbbVie, and the results revealed a staggering 96% of respondents reported that Parkinson’s affects their sleep quality.

Running from March to May 2024, the survey received over 1,500 responses from 27 different countries, with 80% of respondents being people with Parkinson’s and the remaining 20% Parkinson’s caregivers.

The five most common Parkinson’s sleep issues reported in the survey were:

  1. Frequent awakenings (53%)
  2. Insomnia (50%)
  3. Bradykinesia, or slowness of movement (41%)
  4. Rigidity or stiffness (38%)
  5. Nocturia, or needing to get out of bed to urinate too frequently (38%)

Movement difficulties were particularly widely reported among Parkinson’s sleep issues, with 65% of respondents with the condition saying they found it difficult to turn over in bed at night. For people in the advanced stages of Parkinson’s, this figure rose to 84%.

And while men suffered more with nocturia and drooling, women more frequently reported issues with insomnia and joint stiffness.

The impact on caregivers was also clear, with 88% of those responding to this survey reporting some level of sleep disruption due to their partner’s Parkinson’s. Four in ten caregivers experience significant emotional burdens, while a third report significant sleep disruptions to assist with movement or medication.

Despite the survey revealing a clear and significant impact of nighttime symptoms on people with Parkinson’s, nearly a third of people with Parkinson’s reported their healthcare professionals did not engage in discussions about sleep, and only 20% have received a diagnosis for a sleep disorder. In Europe, the figure for people receiving a sleep disorder diagnosis comes down to just 13%.

PD Avengers President, Larry Gifford, said:

“The nighttime struggles of people with Parkinson’s and their caregivers are a silent crisis that demands attention. It is not just about acknowledging these challenges but taking actionable steps to address them.”

Indeed, PD Avengers has also recommended five specific actions to address Parkinson’s sleep issues:

  1. Improve communication about sleep issues between people with Parkinson’s and their healthcare professionals
  2. Support caregivers with things like respite care, support groups, and counselling services
  3. Promote the rapid adoption of assistive devices that enable people with Parkinson’s to manage nighttime symptoms
    independently, reducing caregiver intervention and improving sleep quality.
  4. Drive education and awareness among healthcare providers about the critical importance of diagnosing and managing sleep disorders in Parkinson’s.
  5. Advocate for policy change, such as flexible work arrangements and financial assistance programs for caregivers who are financially strained due to their responsibilities.

Update 9 July: PD Avengers hosted a webinar about the sleep survey results on Monday 8th July over Zoom – you can view the recording here.

Read the sleep survey results in full, and find more advice about Parkinson’s sleep issues on our Living Well pages

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