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Improving care for people with advanced Parkinson’s

We speak to four experts from our recent advanced Parkinson's roundtable about how to improve care for people at this stage of the condition.
28 June 2024 Verity Willcocks Sponsored by AbbVie
Insights advanced parkinson'ssponsored

In January this year, experts in advanced Parkinson’s from around Europe attended a roundtable hosted by AbbVie and Parkinson’s Europe to discuss how to improve care for people in the advanced stages of the condition.

Including representatives from countries (France, the Netherlands, Spain, Sweden and the UK) where best practices are in place regarding Parkinson’s care, it discovered that even in these countries there are serious problems to overcome in order to improve care for people with advanced Parkinson’s.

Parkinson’s Europe spoke to four of the representatives who attended the roundtable meeting from France, Sweden and the UK to find out more.

Inadequate resources for advanced Parkinson’s

The availability of expert staff is a huge factor affecting the care of people with advanced Parkinson’s, and this overlaps with how access to care varies geographically within each of the above countries. For instance, all three countries report a shortage of neurologists and nurses.

Asked if Sweden has enough neurologists and nurses, Ioanna Markaki, Senior Consultant and Associate Professor in Neurology at the Karolinska Institute in Stockholm, Sweden, says: “No, no. The number cannot match the patients’ needs.”

Marie Fuzzati, Scientific Director at France Parkinson, says: “If you feel someone would really need to see their neurologist within a week because there’s a big problem, it’s impossible.”

She predicts that this will continue to be a problem in the future too. “Future generations [of doctors] are not turning to neurology,” she says.

Speaking for the UK, Katherine French, Head of Service Improvements and Grants at Parkinson’s UK, says: “Historically, I think we’ve got the lowest rate of neurologists,” adding that rural areas struggle to recruit.

This of course means that people with the condition do not see a neurologist or a nurse as often as they should.

Markaki says: “According to the Ministry of Health, the patients need to meet a specialist [a neurologist or a nurse] at least once per year. The goal is two times per year.”

However, she says, this goal is not usually met.

There is a similar situation in the UK. French says: “We have a huge issue with waiting lists across the UK. NICE [the National Institute for Health and Care Excellence which provides national guidance to improve healthcare] recommends [people are seen] every six to 12 months, but we’ve got some services where people are waiting anywhere from a year to two years to be seen for a routine follow-up appointment.”

Fuzzati says that in France the target is to see people with Parkinson’s at least once a year, with some people being seen twice a year. “The problem is it’s not dependent on how well their treatment is working. It’s just a set thing: ‘OK, I’ll see you in one year.’”

In these circumstances, making the best use of staff resources is key. At Markaki’s clinic, they try to prioritise seeing Parkinson’s patients according to need. “Most of the time we can meet patients that need it two times per year in person, but the resources are increasingly squeezed. We don’t have a set number of visits for each patient, so there is some flexibility to allocate resources according to need, but it’s becoming increasingly harder,” she says.

Sign our pledge for improved healthcare services for people with Parkinson’s in Europe

In the UK, some services are moving towards seeing everyone once a year rather than sticking to every six months, and allowing people with Parkinson’s to get in touch if they have an issue in the meantime. This allows neurologists and nurses to spend more time looking after those in the advanced stages of the condition.

Fuzzati would like France to adopt a similar practice. “Maybe for people with early-stage Parkinson’s, once a year, once every two years, may be enough – they may not need to see a neurologist that often. Maybe there’s a reevaluation to be done between seeing more advanced people more often,” she says.

This would allow staff to give better care to those in the advanced stages of the condition, she says. “I think a longer visit to the neurologist would be a good thing – often it’s 15-20 minutes; it’s not enough to really get the whole picture when people are more advanced.”

Ioanna Markaki, Senior Consultant and Associate Professor in Neurology at the Karolinska Institute in Stockholm, Sweden
Ioanna Markaki, Senior Consultant and Associate Professor in Neurology at the Karolinska Institute in Stockholm, Sweden

Geographical variations

In all three countries, whether you live in the countryside or a city will have an impact on what services you can access as a person with advanced Parkinson’s.

There is a concentration of expertise in urban centres, which means if you live in a rural area you will need to travel for treatment – which may be difficult if you have advanced Parkinson’s, although France and the UK have hospital taxi services.

Markaki says that care for people with advanced Parkinson’s is “very good” in Stockholm. “There’s a good network of general and private neurologists that have easy access to specialists in movement disorders, but this is not the case in the rest of Sweden,” she says.

Pia Rousu, a registered nurse at the Academic Specialist Centre of Neurology in Sweden, says: “Unfortunately, this means that those living in large cities are offered advanced treatment more often, as knowledge and resources are not available in smaller and remote cities.”

Markaki says that “a big barrier to referral is that in rural areas the neurologists in the smaller hospitals are not trained in advanced therapies and therefore do not have experience in them. So, they don’t feel that they can refer the patients [to advanced care] and care for them in their own clinic.”

This means that the care of advanced people with Parkinson’s is referred to a larger, tertiary hospital, which, Markaki says, causes a “bottleneck”, with the hospital unable to cope with the number of Parkinson’s patients.

On paper, it sounds like France caters well for people with advanced Parkinson’s.

Fuzzati says: “In France, we’re lucky to have 25 expert centres spread around the country, with neurologists specialised in Parkinson’s, and they also have specialised nurses, physiotherapists, speech language therapists, psychologists, so people who are cared for there have a complete team.”

The centres mostly look after those in the middle and more advanced stages of Parkinson’s but their staff also visit new patients. Advanced patients are referred to an expert centre by their local neurologist once their oral treatment is no longer working so that they can be considered for more advanced treatments like the apomorphine pump or deep brain stimulation.

But resources are squeezed. “There are still too many patients and not enough centres,” says Fuzzati.

“They have an emergency line at the 25 centres, but it’s often difficult to give an appointment rapidly.”

Furthermore, she says that not enough neurologists in France outside of the 25 centres specialise in Parkinson’s, and this affects the standard of care for those in the advanced stages of the condition. “They tend to just increase dosage of medication when they should be referring someone to a specialist. That’s where we feel that a Parkinson’s nurse should come into play, to say, ‘OK, that’s enough. Now you need to see a specialist who’s going to help you get your best quality of life.’”

The UK also has a huge amount of geographical variation – and not just between rural and urban centres.

French says in the UK there is a “huge postcode lottery” because healthcare is devolved in each of its four nations. “We have four very different health and social care structures that are funded very differently,” she says.

“Access to some services is better in some of the nations than others. For example, people can get DBS in Northern Ireland, but they have to travel to England [for treatment]. And sometimes the travel puts people off, so they’re not accessing a service because there’s other barriers in their way.”

She adds: “There are huge inconsistencies in the way services are delivered, and services are commissioned. One of our challenges here in the UK is that there’s a real misconception that Parkinson’s care fits under neurology, but actually, we have a huge percentage of the population who receive their care under what we call Care of the Elderly. So even just within one[hospital] trust, we can have a huge variation in a service. So, if you’re under neurology, you might be able to access A, B and C; if you’re under Care of the Elderly, you might actually get D, E and F.”

She gives another example of this in relation to Parkinson’s nurses. “We have some hospital-based nurses who are restricted to only seeing people under, say, Dr Smith or Dr Jones. So, if you see the other doctor, you can’t necessarily access that service. And then we have some community-based services where it’s based on a defined geography – if you happen to live a mile or two miles out of that defined geography, you can’t access that service even though it might be closer to you.”

Katherine French, Head of Service Improvements and Grants at Parkinson’s UK
Katherine French, Head of Service Improvements and Grants at Parkinson’s UK

Nurses

The report on the roundtable, Addressing barriers to care for people with advanced Parkinson’s, noted that Parkinson’s nurses are key when it comes to improving care for those with advanced Parkinson’s, stating that their involvement: “coordinates the care pathway, strengthens in-home support, facilitates patient communication and accelerates identification of disease progression and referral to specialists to consider advanced treatment options”.

For instance, Rousu says that her role means that she is more likely than a neurologist to refer someone for advanced care in Sweden: “The Parkinson’s nurse always keeps track of her own medication changes and often also the neurologists’. In practice, this means that we are the ones who can monitor the effects and side effects of medicines and also can make an assessment when it is time for a more advanced treatment.”

But there is a mixed picture as regards access to nurses’ services.

Referring to the provision of Parkinson’s nurses in the UK, French says: “Although we know there are huge gaps, we are probably exceptionally lucky compared to the rest of Europe for the coverage we have. At the moment, to some degree, most people can access a service.”

However, there are problems with heavy caseloads, says French: “A lot of nurses work independently; they are the only nurse in their area. And there’s a huge reliance [on them]. In the UK, the recommended caseload is one nurse per 300 patients, but we know that quite a significant number of nurses have massively in excess of that, which affects the quality of the service they can provide. A lot of the time they are just firefighting.”

The ability of advanced people with Parkinson’s to travel to see a nurse affects this: “If the patients were coming to the nurse or the consultant, they might be able to see as many as 10 in a day, whereas if you’ve got to travel [to the patient], like we see up in Scotland, you might only actually get to see two, because it’s two hours’ travel between each patient.”

There is also a problem looming in the future as approximately 40 per cent of Parkinson’s nurses in the UK want to retire in the next five years.

Markaki says that Sweden has a similar problem, with an ageing nursing workforce, and, like the UK, they are finding that not enough nurses are choosing to specialise in Parkinson’s.

The situation in France is completely different. “There’s no such thing as a Parkinson’s nurse in France,” says Fuzzati. Instead, there are nurses in advanced practice, but they do not specialise in neurology or Parkinson’s. France Parkinson is currently involved in a study to investigate how using nurses who are specialised in neurology can improve care for people with advanced Parkinson’s.

“We’re doing a pilot study in the north of France, where we have nurses specialised in neurology, so they’re not only trained in Parkinson’s, but they’re also trained in caring for people with multiple sclerosis and/or people with epilepsy.”

In the trial, which is being conducted in Brittany, where it can be difficult for people with Parkinson’s to access neurologists and hospital care, the nurses are coordinating with the hospital, the local neurologist, and others involved in caring for a person with Parkinson’s, such as physiotherapists.

“They go to people’s homes, and they get to know the people better. So, they are better prepared, ready to listen to people and to detect when it’s urgent for the person to have an appointment with a specialist neurologist,” says Fuzzati. “The hope is that when people truly need a visit with the specialist neurologist in advanced care, then they don’t have to wait for six months, they can be referred more rapidly because the nurse has identified this need.”

If the trial is found to work well, it is possible that these more specialised nurses could be introduced across France, which would improve care for those with advanced Parkinson’s.

In France, access to care in rural areas is more difficult, and volunteers from France Parkinson, who have Parkinson’s themselves, call or visit people with Parkinson’s – particularly if they are isolated – to check that they are OK.

Pia Rousu, a registered nurse at the Academic Specialist Centre of Neurology in Sweden
Pia Rousu, a registered nurse at the Academic Specialist Centre of Neurology in Sweden

Multi-disciplinary teams for advanced Parkinson’s

The roundtable identified that access to a multi-disciplinary team can improve quality of life for those in the advanced stages of Parkinson’s.

Asked what the most important thing to change to improve care of people with advanced Parkinson’s is, Fuzzati replied: “A nurse coordinator in contact with the person at home and the various specialists. The person with Parkinson’s is connected to a multi-disciplinary team that can really, really help the person – that will be the priority.”

However, Fuzzati says: “We also have a lack of specialised [staff] – physiotherapists, speech therapists and psychologists. Often, people who try to find a therapist have trouble finding one, or finding one who understands the disease, and that can actually do something. So, all those resources are lacking.”

Referring to the UK, French says this sort of team can relieve some of the burden on nurses: “Whilst the nurse can coordinate everything, she doesn’t necessarily have to be the person who does everything.”

In the UK, French says there is a lack of data on access to multi-disciplinary care for advanced people with Parkinson’s. “We know when we talk to health and social care professionals, a lot of them are working in that way, but it’s not commissioned or funded in that way. They are working in that way, but in a more informal way.”

She gives examples of multi-disciplinary teams in the cities of Derby and Hull and the north of England that are providing a good service for people with advanced Parkinson’s.

“In South Tees, there is actually quite an innovative service – a multidisciplinary team for advanced Parkinson’s. So, the clinic just sees patients with advanced Parkinson’s.”

In Sweden, again Stockholm has great provision. As for the rest of the country, a recent survey by the Swedish Parkinson’s Association showed that access to a multi-disciplinary team varies hugely, and that many people with Parkinson’s have no access at all.

Markaki says that advanced people with Parkinson’s are able to access specialised rehabilitation clinics where they receive an intensive rehabilitation programme for five weeks, once a year. At these clinics, advanced people with Parkinson’s receive a lot of education about Parkinson’s, and they get access to a psychiatrist, as well as rehabilitation physicians. Alternatively, they can do a lighter, residential programme or follow an exercise plan at home.

Marie Fuzzati, Scientific Director at France Parkinson
Marie Fuzzati, Scientific Director at France Parkinson

Telemedicine

After it took off during the Covid pandemic, telemedicine is listed in the report as being one of the ways to effectively overcome some of the barriers to care for people with advanced Parkinson’s.

In France, Fuzzati says: “It’s not used as much as it should be probably. It can be improved, but certainly since Covid it has increased.” However, Fuzzati believes that while it is fine when a person with Parkinson’s is stable, for others it cannot replace an in-person appointment. “If they have true difficulties, I think face-to-face is better,” she says.

In Sweden, “telemedicine helps a lot,” says Markaki, when discussing how they can offer patients an appointment if they request one.

Also, she says that nurses only make home visits in “exceptional cases” because of the long distances involved. “It can take a nurse two hours at least when she can most of the time do exactly the same job in 20 minutes with telemedicine.”

They also use telemedicine when treating advanced patients, which means they can be treated at home.

Rousu says: “As a Parkinson’s nurse, I am able to change existing Parkinson’s medicines, and I am the one titrating advanced treatment. Almost all titrations with advanced processing are done via video or phone.”

Markaki’s team are also helping to spread how telemedicine can make better use of resources and have acted to bridge the knowledge gap between rural Parkinson’s services and those in tertiary hospitals in the cities.

For instance, Markaki’s team showed staff from a rural hospital how they use telemedicine to help treat advanced patients. “We showed them how we work, and it increased their confidence. They reached out to their tertiary hospital and now they have started titrating at the home clinic.”

For Rousu, telemedicine has helped her provide improved care for patients. She says: “Since the pandemic, we have more video meetings than before. This is good because there is a lack of resources and therefore time. Video meetings allow us to give more patients the opportunity to get the right symptom relief.”

French gives an update on the use of telemedicine in the UK: “Telemedicine was used during the pandemic as a way to provide support to patients to keep them safe. However, it was acknowledged by Parkinson’s services that for some groups of patients it is still important to see them in person, especially where there may be a deterioration.”

As well as the above areas, the roundtable report highlighted an additional problem relating to gaps in patient home support systems. It also recommended an increase in the use of wearable technology and stated that the implementation of “harmonised but tailored accreditation systems” to set standards and drive improvements could enhance care.

Finally, the report recommended that its solutions be replicated in other countries, and the impact of these changes measured so that this evidence could be used to back up calls for an increased workforce and more funding for improved care of people with advanced Parkinson’s.

Read our full report of the advanced Parkinson’s roundtable

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Ocean Globe Race: Bertrand Delhom becomes first person with Parkinson’s to sail around the world

Frenchman Bertrand Delhom took part in a round-the-world trip in the good ship Neptune, completing the Ocean Globe Race just four days after World Parkinson's Day 2024.
26 June 2024 Adrien Moyroud
Stories francesailingsportsummer of sport

On 15th April 2024, Bertand Delhom and his crewmates docked their ship, The Neptune, at Cowes in the Isle of Wight, the finishing line for the 2024 Ocean Globe Race. This momentous event cemented Bertrand’s place in the history books as the first person with Parkinson’s to sail around the world – and he’s not finished there.

In this interview, we talk to Bertrand about his momentous, awareness-raising journey on the Ocean Globe Race and beyond, and why he wants to change the way the world looks at Parkinson’s.

Hello, Bertrand! Tell us a bit about yourself.

I’m Bertrand Delhom, I live in Plabennec, Finistère, near Brest. I’m from a region that’s called ‘Le Pays pagan’, known to be the home of legends and shipwreckers. I’m 60 years old, I’m married, I have three children and seven grandchildren.

What has your Parkinson’s journey been like so far?

I got diagnosed randomly at age 57, it was my birthday present! Unfortunately, I have a heavy track record of health issues. Among these issues I was diagnosed previously with cervical dystonia. Treating cervical dystonia requires botulinum toxin injections but with my doctor we wanted to stop these injections and try a deep brain stimulation. So I went to Rennes to do a pre-operative assessment and following this assessment, the neurologist asked for a DAT-scan. Upon results of this DAT-scan, the neurologist told me that I had Parkinson’s.

Now, looking back at it, I did have precursory symptoms like fatigue and on/off episodes that I couldn’t explain at the time. I had symptoms pre-diagnosis that I can now put a name on.

Receiving the news was really an uppercut for me. My grandmother, an amazing woman, had Parkinson’s and it considerably affected her life. So when I received the news, I got her image straight away. I told myself: “I’m in for a long and painful ride”. It took me at least a month to digest the news.

I had two choices: to make do or to not make do. Not making do with my disease, is to, without beating around the bush, basically let go and killing yourself. For having previously experienced suicidal ideation, it was something that was unimagineable for me as it leaves your family broken. So after a month, I told myself: “what can you do and what do you know about?”. So I signed up to HandiVoile Brest [an organisation which helps people of all abilities to take part in sailing] and after a short initiation period, I got assigned to one boat with only blind people onboard.

The crew aboard The Neptune during the Ocean Globe Race
The crew aboard The Neptune

Can you tell us about the Neptune sailing project – how and why did you get involved in the Ocean Globe Race?

Sailing and furthermore the sea has always been a passion of mine. My first experience off the coast was on a fishing boat and since then, it has always been a part of me.

In 1985, I had asked Eric Tabarly to join the Whitbread Round the World Race but at the time he let me know that there weren’t any spaces left, unfortunately for me. So this time around, when I heard about the Ocean Globe Race (OGR), I took a little bit of a revenge on life. I contacted all the French boats from the OGR, I received four replies including two negative and two positive replies. And I chose Neptune and Tanneguy.

Neptune had the advantage of being close to where I live but most importantly, when I went to Tanneguy’s for dinner for the first time, he told me that his step-dad had Parkinson’s and that one of his closest friends had Parkinson’s and committed suicide so he felt very close to the condition. It finalised my decision and I joined his team.

My role went crescendo. From Tanneguy’s words, I was really the connecting element in the team to bond them around a common theme, Parkinson’s. On a more practical aspect, I was a ‘normal’ team member meaning I would take two watches a day. I also helped with the cooking and with the stewardship on board.

The Neptune Gagner Avec Parkinson social media account says you want to “change the way we look at Parkinson’s” – can you tell us more about why you want to do this? And how you feel the project is achieving this?

In the general public’s eyes, Parkinson’s is an old person’s disease and furthermore a disease that makes sense as you approach your end of life, without anyone paying attention to it. And finally no, Parkinson’s is not that! Parkinson’s is a disease that touches people that are working and it even touches children – it impacts everyone. There is a lot of work to do on that aspect.

Additionally, the diagnosis phase can be so isolating and lonely that we need people to say to the new diagnosees that they can do things and make their dreams come true with this condition. How you act enormously affects your Parkinson’s and its progression, hence why it is important to fulfil one’s self. For me it was sailing on a world tour but for others it could be dancing or drawing – regardless of the activity, everyone diagnosed with Parkinson’s needs to find something that will help them fulfil themselves. This also counts for people diagnosed later on in their life, doing this will also help counteract the ageing process.

The crew celebrates World Parkinson's Day
The crew celebrates World Parkinson’s Day (Photo: Pierre Maxime)

What has the experience of the Ocean Globe Race been like for you? What have been the highlights, and what have been the challenges?

Starting on the departure day, I was a little bit sceptical of my capability of lasting the entire race even though I was listed for its entirety. So it started with a cautious mindset on my part. And day by day, I noticed that I could do it, and that I was feeling good on the boat. In a race like this one, a great advantage for me is the flexibility – if I’m feeling tired in the middle of the day and it’s not my watch, no one is going to complain that I’m going to take a nap.

Prior to this adventure, I went through a year of mental and physical training. Physically it involved a lot of adapted gymnastics, a lot of swimming with fins, of cycling and of windsurfing. And mentally, I took lessons of self-hypnosis to allow my mind and body to evade myself a little bit.

Something important to note is that, for this race, I decided with my doctors to stop all of my medication that I was taking for my psychic problems. So all of these were stopped, something very positive for me.

What was quite striking for me was to have an entire crew pushing and supporting me, doing everything they could to allow me to face the problems that I needed dealing with in the best environment possible.

The biggest problem I had to face on the boat was in fact not Parkinson’s, but my cervical dystonia. To a point where Parkinson’s would be pushed back a little bit to the background, as the cervical dystonia had such a strong grip on my body. My priority was to deal with the pain from this cervical dystonia. For the race, I decided to not take the botulinum toxin injections that I usually take to treat my symptoms as it could cause pulmonary aspiration on the boat, and I didn’t want to pose this risk to the crew. So I had to grit my teeth.

On the fourth stage, a nurse joined the crew and she was of great help to me with my self-hypnosis. Self-hypnosis really helped me on board to control my symptoms for my various diseases.

Otherwise, controlling the disease with the medication was fairly straightforward. What caused me trouble was the loss of balance aboard. I didn’t go in certain parts of the boat due to this and due to the fact that I kept on repeating to the crew that I did not want to be a burden to them. Hence, I limited myself on certain aspects so that the rest of the team could go on with their lives without having to worry about me and my health/security aboard.

My role on the boat was essentially at the wheel and at the back manoeuvring in the cockpit.

What has it been like working with the rest of the Ocean Globe Race team on the Neptune, as the only crew member with Parkinson’s? Have you been able to do everything you wanted to?

I did less than I would’ve ideally liked to – such as manoeuvring at the front of the boat. I decided on my own to draw a red line on what I could and could not do, not necessarily for my safety but rather for the rest of the team to not have to worry about me. Likewise, I was the only one to have my own sleeping berth as I had a special system to keep me in a position where I could sleep comfortably.

What were your favourite places to visit during the race, and why?

Something that instantly comes to mind for me is the sea. Some people find the sea boring, but I find it fascinating as it constantly changes. I am in ecstasy at the beauty of this element. So I was able to take my time in valuing and appreciating the beauty of the sea.

Otherwise, a specific place/moment that comes to mind is the arrival at the Cape Horn. After being at large for more than three weeks without seeing any other humans, it was a confusing feeling when the first human contact at the VHF was the coast guards asking us what we were doing here. Even at the far end of a continent, the world reminded us of its obligations. It’s a bizarre contrast to enjoy the wonderful scenery whilst something else reminds you of the material elements of this world.

Departing towards the Indian Ocean from Gqeberha (Port Elizabeth) in South Africa, we were faced with a gigantic storm. It was grandiose to see the power of nature taking place in front of our eyes – and the beauty of it. It’s something very hard to describe in words. That was probably the highlight that comes to mind when thinking about the world tour.

Otherwise, the stages that I preferred were in South Africa. The beauty of its landscapes combined with the warmth and kindness from its people was very touching. Arriving in Oakland in New Zealand was also very pretty! Uruguay was another marking stage as well.

Bertrand aboard The Neptune during the Ocean Globe Race
Bertrand aboard The Neptune during the Ocean Globe Race (Photo: Pierre Maxime)

How did you manage your Parkinson’s while on the trip? Were your symptoms better / worse than usual on the boat?

The main symptoms that bothered me were the on/off periods. When you’re at the wheel at two in the morning and you suddenly switch off, your teammate better be informed of this possibility! So I had told the rest of the crew that these on/off symptoms would happen in advance.

Intense fatigue was also an issue, although it was harder to know if this was linked to my Parkinson’s or simply due to the fact that I was participating in a world tour!

How do you feel now it’s over? Did you achieve everything you wanted to? What are your main takeaways from the experience?

There’s always takeaways in any given experience. In this case and although I set the bar high, I managed to reach my goal so there’s a little bit of pride for sure in that. Another takeaway is that the disease is here with us, but we can do great things with it.

On the other hand, I’d like to add that I’m not judging anyone. Everyone reacts differently to a diagnosis and to Parkinson’s. For me, my vision is the best way of dealing with the condition but I totally understand that others may see it differently.

What would you like to do next?

Firstly, I’d like to continue talking about my experience and my vision of Parkinson’s, as I think that it could help people. On a sailing aspect, I’d like to participate in the ‘Transat Jacques Vabre’ – sticking to my vision of being able to realise great things with my condition.

And furthermore, as I’ve got a heavy background with a variety of health issues, I think that I can address a range of different people with my message. When I say to someone with depression or with pancreatic cancer that they can do this or that, I have this right and legitimacy because I’ve been through all this myself first.

If the message that I’m conveying finds echo in only two or three percent of the people that I’m addressing, then I’ve won.

Find out more about the Ocean Globe Race on their website and Neptune Gagner Avec Parkinson

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New blood test for Parkinson’s could detect it years before symptoms appear

Researchers have developed an AI-assisted blood test for Parkinson's which could predict the condition seven years before symptoms begin.
21 June 2024 Laura Vickers-Green
News blood testdiagnosisResearchSwedenUK

Researchers have developed a simple blood test for identifying Parkinson’s which could predict the condition seven years before symptoms begin. This exciting research was co-funded by one of our Member Organisations, Parkinson’s UK.

Using machine learning – a form of AI (artificial intelligence) – researchers from University College London in the UK and University Medical Centre in Goettingen, Sweden, screened blood samples from 99 people with Parkinson’s and 36 people without the condition, and this led them to identify eight key proteins or “biomarkers” common to those with the condition.

The team then analysed blood samples taken a decade ago from 72 people with a sleep condition called Rapid Eye Movement Disorder, who are known to be at higher risk of developing Parkinson’s. By identifying the presence of these eight proteins, the AI tool has so far been able to correctly predict which of these people would go on to develop Parkinson’s – in some cases, up to seven years before their symptoms began.

What could a blood test for Parkinson’s mean for the Parkinson’s community?

One of the lead researchers, Professor Kevin Mills, explains:

“As new therapies become available to treat Parkinson’s, we need to diagnose patients before they have developed the symptoms. We cannot regrow our brain cells and therefore we need to protect those that we have.

“At present we are shutting the stable door after the horse has bolted and we need to start experimental treatments before patients develop symptoms. Therefore, we set out to use state-of-the-art technology to find new and better biomarkers for Parkinson’s and develop them into a test.”

Dr Michale Bartl at UMC Goettingen in Sweden added: “By determining eight proteins in the blood, we can identify potential Parkinson’s patients several years in advance,” said “This means that drug therapies could potentially be given at an earlier stage, which could possibly slow down disease progression or even prevent it from occurring.”

What are the next steps for this research?

Larger trials are now needed to validate this blood tests’ accuracy for predicting Parkinson’s, and develop a version that could be easily used in a clinic. Prof Michele Vendruscolo from the University of Cambridge has said the blood test for Parkinson’s could be performed with equipment already in major hospitals, and Kevin Mills is hopeful that this might even be possible within two years. This would replace the invasive lumbar puncture that is currently used to diagnose Parkinson’s.

Read the research paper in full in the Journal of Nature Communications.

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Podcast: exploring Parkinson’s devices, apps and other technology

In our latest podcast episode, three guests discuss whether wearable Parkinson's devices and other innovative digital technology can help people manage their symptoms.
20 June 2024 Laura Vickers-Green Sponsored by Charco Neurotech
Podcasts sponsoredtechnology

“I can now handwrite, I actually wrote my husband’s Christmas card this year — the first time in three years,” Elaine Paine explains in the latest episode of our Parkinson’s Life podcast, speaking about the difference it has made wearing a CUE1 Parkinson’s device designed to alleviate symptoms like freezing and slowness.

In the episode, Elaine — who was diagnosed with Parkinson’s in 2015 — speaks to movement disorder specialist Dr Alistair Mackett and Lucy Jung, CEO of Charco Neurotech (the company behind the CUE1 Parkinson’s device) about how technology can improve the lives of people with Parkinson’s.

Elaine is a self-confessed technophobe, but since her Parkinson’s diagnosis, she’s found herself adapting to a wide range of technology-based assistance, from running remote support groups over Zoom during the pandemic to learning how to use the CUE1 and its accompanying app, and more recently trying an apomorphine pen, which injects a dose of the dopamine agonist apomorphine directly under the skin.

The key to Elaine is simplicity: “The more complicated it gets, the less likely it is I’ll continue to use it.”

How technology should help — not replace — a face-to-face approach

“I’ve literally had to break up fights between a couple!” Dr Alistair Mackett describes, when talking about how frustrating it is to assess a patient in the small time window of an appointment when that doesn’t give an accurate picture of their day-to-day life. “They start walking, and I say ‘oh that’s pretty good’, and then that patient’s wife says ‘You never walk like this! You never swing your arms, you never pick your feet up… and now you’re walking perfectly!’ And I’m not quite sure what to do, because the person I’ve seen in clinic looks like they are managing well, but their partner at home is seeing a different picture.”

This is where technology can make a difference, Dr Mackett explains. A Parkinson’s device like a monitoring device worn on the wrist could give the clinician information about how symptoms like slowness of movement and tremor are affecting someone day to day.

“That would have been amazing,” Elaine agrees.

But both Dr Mackett and Elaine also agree that technology can’t replace a face-to-face consultation. And in fact, their discussion on the podcast shows that one of the best things technology can do is actually connect communities, from chatting on online forums to the potential for using technology to connect people who are at the same stage of their Parkinson’s, or maybe to set up a mentoring service.

And these face-to-face communities are what is helping people with Parkinson’s encourage each other to try new Parkinson’s devices and other technology.

“In my support group, we talk about them,” Elaine says, “This is how we find out about things. What we do is we say ‘Right, who’s using the apo [apomorphine] pen?’ So we can actually speak to the people who are doing it, rather than a clinician who’s doing their best for you, but might not really knowing how you might feel about it.”

Listen to the full episode on Spotify via the link above, or on your podcast provider 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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New study shows people come to terms with Parkinson’s even before diagnosis

A new research paper on the lived experience of people with early-stage Parkinson’s (co-authored by Parkinson’s Europe Research Manager Amelia Hursey) has revealed new insights into how people adapt to their condition.
19 June 2024 Laura Vickers-Green
News amelia hurseyearly-stage Parkinson'sResearch

A new study has been published in the international journal Neurology and Therapy which challenges the conventional assumption that people in the early stages of Parkinson’s only begin coming to terms with their condition after a formal diagnosis – showing instead that the process of acceptance can actually begin much earlier.

The paper, titled An Ethnographic Study of Patient Life Experience in Early-Stage Parkinson’s Disease in the United States and Germany, was co-authored by Parkinson’s Europe’s Research Manager, Amelia Hursey, alongside researchers from Swiss pharmaceutical company Novartis and growth strategy firm Gemic.

The study involved interviewing 30 people in the early stages of Parkinson’s from across Germany and the USA – as well as 10 relatives and 10 neurologists – about their lived experience of the condition so far, in order to get a better understanding of how symptoms in the early stages of Parkinson’s impact people’s daily lives and treatment choices.

These interviews provided five key insights:

  1. People often begin to come to terms with Parkinson’s before being diagnosed
  2. Acceptance of Parkinson’s is an ongoing process
  3. People with early-stage Parkinson’s value living in the moment
  4. People with early-stage Parkinson’s see slowing the worsening of the condition as an important goal
  5. Learning from the first-hand experience of others can be more valuable than scientific information.
Parkinson’s Europe Research Manager, Amelia Hursey

Why does acceptance of Parkinson’s begin before diagnosis?

Researchers explained that acceptance begins before a formal Parkinson’s diagnosis, this can be attributed to two main factors: firstly, greater awareness of Parkinson’s has made it easier for people to recognise the symptoms, and secondly, the long journey to diagnosis (an average of 18 months among the study’s participants) gives ample time for people to begin coming to terms with having Parkinson’s.

Todd Carmody, one of the co-authors of the paper, explains:

“For many people we spoke to, getting a Parkinson’s diagnosis felt less like a revelation than a confirmation – they had already long suspected it. This was true both in the US and Germany. And in both countries, participants described the process of coming to terms with their Parkinson’s as a process of grieving.”

Why do people from diverse backgrounds find it harder to adapt to their Parkinson’s?

Another key (and rather damning) insight provided by the study concerned how much harder it was for people from minority groups to adapt to their Parkinson’s diagnosis.

Women and ethnic minorities in particular expressed difficulty finding healthcare practitioners who made them feel “heard,” and described feeling that they were not always “taken seriously” by healthcare professionals.

It was also noted that people with Parkinson’s from disadvantaged or minority backgrounds found it harder to become more actively engaged in their healthcare needs, noting that this more proactive, self-advocating approach “required a sense of confidence in one’s ability to improve one’s life, a mindset that was easier to inhabit for participants who were not marginalised as a result of socioeconomics, gender, or race.”

Amelia Hursey, our Research Manager and co-author of the paper, explains:

“Using robust scientific methodology to show the Parkinson’s healthcare and research community that people are already building their knowledge base about their condition before they are diagnosed should now help improve conversations about research and treatment options; helping people with Parkinson’s to grow their wisdom, not educating them like they know nothing. This is especially true for women and racially marginalised participants, who struggle to find healthcare professionals who make them feel ‘heard’ .”

The team behind the paper will present an abstract about some of the data collected during this year’s MDS Congress, and lived experience-based research is now being recognised as an important research focus across all conditions.

Read the research paper in full in Neurology and Therapy journal or on our website

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Walking football: the sporting craze taking over Europe’s Parkinson’s community

As UEFA Euro 2024 kicks off, walking football for people with Parkinson’s is starting to take off in Europe. In the Basque Country, Jesus Etxebarria, president of the Basque Country Walking Football Association, tells us how he set up the ASPARBI team, one of the first regular walking football teams for people with Parkinson’s in mainland Europe.
14 June 2024 Verity Willcocks
Stories exercisefootballSpainsummer of sportwalking football

In the UK, walking football has taken off since it was first introduced to people with Parkinson’s from around the UK at Watford Football Club training ground in May 2021; now there are at least 25 Parkinson’s teams in England and Wales, and the sport is growing in Scotland too.

However, while European countries often enter national teams with Parkinson’s to play walking football in tournaments such as the Ray Kennedy Cup and the UK’s Cure Parkinson’s Cup, there aren’t many teams playing the sport on a regular basis in mainland Europe – but the ASPARBI team of walking footballers with Parkinson’s in the Basque Country is one of the first. It was set up just over six months ago by Jesus Etxebarria, president of the Basque Country Walking Football Association.

Jesus, 69, also plays walking football and although he does not have Parkinson’s, he was keen to get people with the condition playing it. To drum up interest, he showed members of ASPARBI, the local Biscay Parkinson’s Association, a video of Joe Gregory, an English walking footballer with Parkinson’s who plays for England, Fighting Fit Football, and Berks and Bucks Neuro walking football group, doing keepy-uppies. Joe is famous for doing a record number of these during various challenges. Jesus then encouraged the members of the Association to give walking football a go and was pleased by the turnout for the first Parkinson’s walking football session.

“Something like 13 people appeared. Three of them were women, for which I was glad because I did make it clear that it was mixed gender. And it was great. None of the three women and quite a few of the men had never played football. Amazing.”

Members of the ASPARBI walking football club play a match

“Some of them had played football at quite a high level. There was one who told me that this would open a window in his life that he thought was closed forever. Wow, I was choked up when he embraced me and said that to me because I love the sport so much. I didn’t think people who had not played football would sign up for it. And they did.”

Now the ASPARBI team is made up of around 16 people with Parkinson’s ranging from 50 to 75 years old, who play a six-a-side game of walking football every Friday. “Someone may have had a rough night or someone’s not feeling well, but you know, they’ll still come just to watch their colleagues,” says Jesus.

Playing walking football appears to have had a beneficial effect on the team members’ Parkinson’s symptoms, improving balance in particular. “When we first began this project, it was a bit frightening to see them falling and tripping over all the time, losing their balance and, you know, hitting the floor. And now that doesn’t happen,” says Jesus.

Jesus also says that many who had a problem walking backwards at the beginning have now overcome that issue.

Another important bonus is the social side. Jesus says that although the ASPARBI footballers may have previously known each other by sight, they had never spoken to each other. But walking football has changed that. “They have become like brothers and sisters these people. It’s amazing,” says Jesus.

Now the ASPARBI team is going from strength to strength. Just four months after starting out, on World Parkinson’s Day this year they played the England walking football Parkinson’s team, who travelled to Berango in the Basque Country specially.

The ASPARBI team also recently entered the first-ever local Biscay Football Federation’s mixed-age and gender, non-Parkinson’s, league and cup walking football tournament and reached the cup semi-finals, coming a respectable fourth out of six teams.

The ASPARBI team will also take part in the Parkinson’s walking football and traditional football event the Ray Kennedy Cup, which will be held in Norway in September.

Three of the ASPARBI players were picked to play with the Basque Country’s over-50s (non-Parkinson’s) team at a tournament in Biscay in early June, against England and France’s non-Parkinson’s national teams.

Furthermore, three members of the over-50s and one of the over-60s ASPARBI team, are likely to be selected for the Basque Country national squads to take part in July’s Challenge Christian Poirier Walking Football international tournament in France. They will play against national teams from France, England, Wales, Republic of Ireland, Jersey, Switzerland, Italy, Spain, Morocco and the Caribbean.

“I’m not picking them because they have Parkinson’s disease, I’m picking them because they are good footballers,” says Jesus.

Find out more about walking football on our Parkinson’s Sports & Exercise Hub, and download our FREE guide to overcoming barriers to exercise in Parkinson’s.

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Parkinson’s fitness: 10 steps to becoming more active with Parkinson’s

If you want to try a new sport or exercise regime but aren't sure where to start, read our top tips from a range of Parkinson's experts about the best way to begin your fitness journey.
13 June 2024 Laura Vickers-Green and Fiona Montague
Advice exercisesummer of sport

One of the first things you learn after receiving a Parkinson’s diagnosis is that exercise can be hugely important both for slowing the progression of your condition and helping with symptoms. But when it comes to starting a Parkinson’s fitness regime, it can still be daunting to know where to begin, and what you’ll be able to achieve.

We’ve consulted a range of experts and compiled a list of 10 Parkinson’s fitness tips to help you become more active safely and in a way that you might even enjoy!

IMPORTANT
We strongly encourage you to consult a healthcare professional before beginning to exercise, to find out what is safe for you, and whether your medication is at the correct level to support your physical activity.

1. Keep safety a top priority

Neuro physiotherapist and President of Parkinson’s Europe, Josefa Domingos, has this advice:

“Ultimately, when engaging in physical activity, especially with Parkinson’s, safety should be a top priority.

“For someone already physically active and regularly participating in sports or exercise before their diagnosis, continuing an active lifestyle could require some adaptations and precautions to ensure safety and effectiveness. I would recommend regularly assessing their capabilities and progression of symptoms with the help of qualified professionals or a physical therapist who specializes in Parkinson’s. This will help the person understand when and how to adjust their exercise routine, keeping it safe and effective as the condition changes.

“Depending on the status and progression of their symptoms, the intensity of the workouts might need to be adjusted. High-intensity exercises or certain types of exercise might become more challenging, so they must adapt them to continue them safely.

“People with a background in sports may be prone to overexerting themselves. So, it’s important to remember that Parkinson’s can impact autonomic functions, including regulating body temperature and energy levels. It is crucial to stay well-hydrated, especially during and after workouts, and to allow for sufficient rest and recovery time between exercise sessions.

“Choose well-maintained and populated locations for workouts to ensure access to assistance if needed. It’s also beneficial to time your exercise sessions to coincide with when your medication is most effective, allowing for greater stability and energy during workouts.”

2. Adjust your expectations

It’s not about running a marathon, or even reaching the fitness levels you had before your symptoms began, but simply about finding a way of maintaining physical activity that is meaningful and achievable to you. Try to set reasonable goals, and just get started as best you can. Who knows where you might end up?

3. Make exercise a social activity

Josefa says:

“Consider adopting a buddy system for more strenuous exercises, which adds an extra layer of safety and support. Also, some communities offer high-intensity or sports groups specifically for people with Parkinson’s. These specialized groups not only provide a supportive environment but also accommodate the unique needs of individuals with Parkinson’s, creating a safer setting for exercise and physical activity.”

To find a group or exercise buddy near you, contact your national or local Parkinson’s organisation, and browse our interactive map to see what is happening in your country.

4. Start small and build up your Parkinson’s fitness regime – and listen to your body.

Josefa has this advice:

“Start with low-intensity exercises and short sessions, and gradually increase the intensity and duration of your workouts as you gain physical capacity and confidence. It’s important to listen to your body and pay attention to how you feel, as Parkinson’s symptoms like tremors, stiffness and balance issues can vary day-to-day, so adjust your exercise intensity and duration accordingly.

“It’s important not to push through any pain or extreme discomfort, as this could lead to injuries or worsening symptoms. Exercise is supposed to be enjoyable if it is going to be maintained. Some days might require lighter or different types of exercise than planned.”

5. Count every victory – even the small ones

60-year-old Rui Camilo has lived with Parkinson’s for 22 years, and has been exercising with the Portuguese charity APDPk for the last fifteen years. He has this advice:

“Believe in yourself and your abilities. Take small steps each day towards your goals, and celebrate every victory along the way. Remember that progress is more important than perfection, so keep moving forward”.

6. Find a sport or exercise that you actually like:

Finding a fitness activity you enjoy doing can be half the battle! The good news is, there’s a huge range of options for people with Parkinson’s, from walking football and cycling to surfing and dance.

Discover the different types of sports that people with Parkinson’s enjoy doing in our sports and exercise hub.

7. Consider a therapeutic activity holiday.

Organisations such as the European Parkinson’s Therapy Centre and FuertaVida Parkinson No Limits offer a range of therapeutic and well-being activities which can be enjoyed at their scenic locations across Italy, the Canary Islands and more.

Alex Reed, President of the European Parkinson’s Therapy Centre, explains:

“We started to offer therapeutic holidays soon after we launched our page describing excursions from our centre. Therapy must be FUN and EXPLAINED – these are the fundamental principals of our approach. Many people come, from 45 different countries, just for the therapy, but at the end of the week often feel they had a holiday as well! So therapeutic holidays is a natural progression bringing the best of both worlds in an all-inclusive package.”

8. Download a Parkinson’s fitness app

There are a variety of apps for people with Parkinson’s, and that includes Parkinson’s fitness apps! For example, the University of New South Wales in Australia last year released the Walking Tall app to help people with Parkinson’s improve their gait and gain more confidence moving around, and the 110 Fitness app features Parkinson’s-friendly exercise classes for a monthly fee.

9. Check whether you are entitled to a free gym membership

Some local councils and organisations partner with gyms to offer free memberships for people with Parkinson’s, so it’s worth enquiring locally. For example, Parkinson’s UK work with Everyone Active to offer free gym memberships at almost 200 sites across England for both people with Parkinson’s and their carers.

Tom Ingram of Parkinson’s UK says:

“Developing a regular physical activity habit can make a person feel more in control when living with the condition. Quality of life can be enhanced and independence and confidence maintained. We hope that with the support of Everyone Active, the Parkinson’s community can enjoy physical activity to make a real difference to their lives. ”

10. Try some virtual Parkinson’s fitness classes

If you’re worried about visiting a local group, park or gym to exercise, you can start from the safety and comfort of home thanks to an amazing range of online videos, workouts and fitness programmes. For example, here at Parkinson’s Europe we have three series of exercise videos, including our partnership with Bial’s Keep ON Moving programme, and you’ll find plenty more on YouTube.

Discover more information and resources on Parkinson’s fitness on our physical activity and exercise page.

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5 unconventional exercises for Parkinson’s

From popping and padel to surfing and mime, find out what makes these more unusual activities such popular exercises for Parkinson's
11 June 2024 Verity Willcocks
Advice danceexercisemimepadelsummer of sportsurfing

How about introducing something a little out of the ordinary to your exercise regime? More than just a novelty, there are unusual sports and activities that can have real benefits for people with Parkinson’s. Give these five unconventional exercises for Parkinson’s a try:

1. Popping

Trained professional dancer Simone Sistarelli of Popping for Parkinson’s was inspired to teach popping – a form of dance – to people with Parkinson’s because his grandfather had the disease.

“Popping is a form of dance originating in California in the late 1970s, involving rhythmic contractions of the dancer’s muscles to accent the beat,” explains Simone, who is Italian. “Michael Jackson was one of the most famous popping dance students: all of his robotic movements were directly taken from popping dance.”

Simone has been teaching Popping for Parkinson’s classes in London for nine years and also runs live online classes in English and Italian so people can join in wherever they are. He says: “The key concept of our Popping for Parkinson’s classes is to use popping dance techniques as an innovative therapeutic tool for improving the lives of people affected by Parkinson’s disease. The dance technique does not differ at all, but it is provided in a safe, dedicated space and in an accessible way for people with this condition.”

So why is popping among the good exercises for Parkinson’s? Simone explains how performing the ‘pop’ can help to relieve symptoms: “The contraction and release of the muscle to the music, which is the main technique of the dance, allows most students to lessen their tremor,” he says.

Simone points out that dancing has mental as well as physical benefits for people with Parkinson’s. “Psychologically, dance helps with stress, depression and loneliness; it boosts mood and confidence. Socially, dance is a great platform to connect with people in a non-Parkinson’s based way, which can be tremendously valuable.

“Participants not only see improvement in their natural movement capacities, but also gain confidence, feel less socially isolated and have fun. To some, this is the only chance they have during their week to feel ‘normal’ and to have fun!”

If you want to give popping a try, register for Popping for Parkinson’s’ free weekly live online classes. They will also run in-person classes from September this year in Wimbledon, London.

2. Surfing

Surfing offers a range of benefits for people with Parkinson’s at all levels of physical ability – as demonstrated by the Fuerte es la Vida Parkinson No Limits Association based in Fuerteventura in the Canary Islands.

Surfing is included in the Association’s specially created protocol of complementary therapies and sports they provide for both local people with Parkinson’s in Fuerteventura, as well as those with the condition who visit the island for the therapeutic holidays they run.

Francesca De Bartolomeis, Parkinson No Limits’ coordinator and psychomotor therapist, says: “Surfing is an absolutely fascinating discipline that gives a sense of deep freedom and harmony with the ocean. But that wasn’t enough for us. We have incorporated surfing techniques with a team effort to create a technique specifically for people with Parkinson’s.”

At Parkinson No Limits, that team, who use surfing as a therapeutic and rehabilitative sport, includes a psychomotor therapist, neurologist, physiotherapist, clinical psychotherapist, psychologist and researcher, a speech therapist and a surf instructor, as well as surfers with Parkinson’s.

Francesca outlines the physical benefits for those who practise surfing regularly – from those who are only able to lie down on the board to those who are able to stand: “It stimulates a total body workout, improving coordination, balance, fitness, and posture, as well as improving circulation of the blood and lymph.”

There are also psychological benefits, including improving self-esteem, confidence, independence, and counteracting the depression, anxiety and apathy that can affect some people with Parkinson’s. It is also cognitively stimulating.

“Each of them is practising and giving their best, improving day by day, based on their starting point – age, level of Parkinson’s and aptitude for sport and fitness. In all of them, we see immediate improvements and improvements that last a long time, evolving and expanding all the time,” says Francesca.

“One of the women with Parkinson’s we have helped didn’t even know how to swim. At 76 years old and after 10 years of Parkinson’s, and despite suffering panic attacks, she started to get to grips with the water and the surfboard while being supported by the multidisciplinary team that is always present at every surfing session. Today, for her, lying on the board and surfing a wave half a metre high, with the team close by, is as great an achievement as that of the 50-year-old man – a former skating champion – who has had Parkinson’s for 14 years, and who manages to stand on the board, making use of his body’s muscle memory.”

Francesca says that surfing helps to change the outlook of people with Parkinson’s, including increasing their courage and determination: “They say their way of living life has changed, in which Parkinson’s is a cumbersome part, but it is not the only component. Many have rediscovered energies and aspects of themselves that were already in them, but were hidden, forgotten, or which they had not allowed to ‘bring to the surface’.”

Find out more about water sports as exercises for people with Parkinson’s, as well as tips for swimming with Parkinson’s.

3. Drumming

Based in Elgin, Scotland, Jo Holland, who has Parkinson’s, started Parkinson’s Beats, a drumming class for others with the condition, 18 months ago.

Drummers are seated and use drumsticks to drum on a Swiss exercise ball to music which sits in a bucket in front of them for stability. “Those who are physically able will sing too as this is good for people living with Parkinson’s,” says Jo.

She explains more: “Parkinson’s Beats is a form of cardio drumming encompassing aerobic activity, flexibility, balance and strength exercises combined with rhythmical drumming. It engages all muscle groups, improves muscle tone and helps coordination, while the singing strengthens the vocal chords and can enhance voice levels.

“Parkinson’s Beats also aids cognitive abilities as you match rhythm to movement and learn and repeat patterns of rhythm. In addition, it promotes a feeling of wellbeing, reduces stress and counteracts anxiety. The community aspect of exercise drumming is remarkable even when conducted online. It is a LOT of fun! People always leave the session with a smile on their face.”

Here are some of the comments from Jo’s class members: “I feel energised, and it lasts the rest of the day;” “I am not sure if it is because of the drumming, but I have noticed my handwriting has improved recently, and my medication has not changed;” “On drumming days I’m a lot more [chilled] because I don’t have the pain and the stiffness;” “You’re concentrating on the drumming and forget about your tremor.”

Jo and Sharon Finlay teach two live drumming sessions in Elgin a week – one face to face on Monday mornings and one on Thursday afternoons – with the option to live-stream the class and take part wherever you live. “We have had people join us online from as far away as Portsmouth in the UK, Ireland, Toronto and Andalusia,” says Jo. “We hope to bring Parkinson’s Beats to other communities in the near future.”

To find out more about drumming exercises for Parkinson’s, visit the Parkinson’s Beats Facebook page.

4. Mime

This performing art has plenty of benefits for people with Parkinson’s, offering practical help with everyday tasks from getting dressed to walking down the street – as well as being pure fun.

Based near Toronto, Canada, artist and person with Parkinson’s Barbara Salsberg Mathews, 65, has made it her mission to pass on the benefits of mime to others with Parkinson’s – for free.

Barbara toured with her own theatre company before becoming an art and drama teacher and later a corporate trainer. When she was diagnosed four years ago, Barbara was not moving her right arm and was dragging one foot. She read about a man with Parkinson’s who improved his gait using a method that reminded her of mime, and it inspired her to do the same.

Barbara used the techniques she learned as a mime artist: “I was taught how to do a mime stationary walk, like Michael Jackson’s moonwalk, but with the illusion of moving forwards, not backwards. For posture, I use imagery a lot; for example, I picture ‘swallowing a coat hanger’ and that helps me to keep my shoulders back, and I visualise a marionette wire [lifts arm, with the other arm above as if lifting it on a wire] and I do that for my right arm. I also use internal cues such as concentrating on feeling my right heel touch the ground versus dragging my right foot. I now appear to walk normally.”

Barbara’s classes have a practical focus. “What I have my students do is find something that they have difficulty with, an everyday movement, like brushing their teeth, putting on clothes. And we break the movement down and look at where to compensate so that you can do it correctly.”

She uses music and tools such as flow rings – a set of large bracelets that you can move up and down your arms and legs – to help people learn large, fluid movements. “A lot of people say this type of movement [stretching arm out] is what we do to put on a jacket or trousers [stretches out leg and moves hands as if putting on trousers]. Afterwards, the students perform the same movement without the flow ring. “It really wakes up new neuro pathways,” says Barbara.

Another one of Barbara’s exercises for people with Parkinson’s involves balancing the base of a peacock feather on your hand, focusing on the colourful feathers at the top, while walking across the room with it. “What always seems to happen is someone whose hand is shaking, like mine sometimes does, they stop shaking because their brain is somewhere else.”

Barbara says that her pupils get a lot of fun out of her mime classes: “They love the play, and the sense of fun and engagement.”

In the future, Barbara hopes to produce classes that people will be able to access free through an online platform.

Find out more at mimeovermind.com.

5. Padel

Padel is a lesser-known racquet sport, but it’s taken off among Copenhagen’s Parkinson’s community, with a wealth of benefits to be had.

Diagnosed with Parkinson’s in 2012, Morten Gunvad, who lives in the Danish capital, took up padel around six years ago, and this year organised the very first Unofficial Parkinson Padel World Championship 2024, which took place in Copenhagen in May.

So what makes padel one of Denmark’s best-loved exercises for Parkinson’s? Padel is similar to tennis in that it uses the same scoring system, but it is played in a court that is half the size, with walls which the balls can bounce off, so you can easily achieve longer rallies, and it requires less physical strength.

Having played both tennis and squash, Morten gave padel a try and was instantly hooked: “This is the best thing since sliced bread,” he says. Now he plays doubles in two-hour sessions twice a week with other people who have Parkinson’s.

After playing padel, he says “I feel so tired I can’t walk – in a good way! I’m sore all over, my muscles are aching. But I’m in a good mood.”

He thinks padel has helped relieve his Parkinson’s symptoms. “It helps my Parkinson’s symptoms quite massively, I would say, especially with my balance, with my walking, the fast movements, going backwards. You use the walls, and as soon as you approach, someone tries to lob the ball over you, and you have to run backwards. That’s quite a challenge, I can tell you that. The first couple of months I played, I was just falling over, and it wasn’t good. But that has improved quite a bit. I don’t fall over anymore.”

He thinks it has cognitive benefits too.

“It’s a fast-moving, fast-paced game – you constantly have to adjust and move and think about whatever is thrown at you. You’ve got to strategise all the time. You’ve got to react to your opponent’s next move. And that keeps you going – you can’t fall asleep.”

Padel has become so popular among his local Parkinson’s community that they have decided to set up a club and devote two days a week where people can come and play padel. “The number of people who want to participate, it’s growing on a weekly basis,” says Morten.

Watch Morten and his friends play padel.

Find out more about overcoming barriers to exercise with Parkinson’s, and for more information about exercises for Parkinson’s, explore our Parkinson’s Sport & Exercise Hub.

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National Plan to End Parkinson’s Act: what can Europe learn from the USA’s historic bill?

As America celebrates passing the National Plan to End Parkinson's Act, we ask how the Parkinson's community can replicate this in Europe?
07 June 2024 Laura Vickers-Green
News EUpoliticsUSA

Last week, the National Plan to End Parkinson’s Act was passed unanimously by the US Senate — and having passed through Congress, this historic bill now heads to President Biden’s desk to be signed into law. This milestone event was unsurprisingly celebrated enthusiastically by the Parkinson’s community across America, making headlines across the world, and will undoubtedly benefit people with Parkinson’s throughout the USA.

This leaves one major question: how can Europe learn from the National Plan to End Parkinson’s Act, and bring about something similar for the European Parkinson’s community? We’ve asked some key figures from within Europe for their thoughts.

What is the National Plan to End Parkinson’s Act?

The National Plan to End Parkinson’s Act is the USA’s first-ever federal legislation dedicated to ending Parkinson’s disease. It directs the U.S. Department of Health and Human Services to develop and maintain a plan — which will be known as the National Parkinson’s Project — to prevent and cure Parkinson’s disease, treat its symptoms and slow or stop its progression.

Its core purpose includes things like increasing research funding, improving early diagnosis, creating better treatments and care pathways, and enhancing public awareness of Parkinson’s.

While celebrating the news of the Act’s passing through Congress, the Michael J Fox Foundation thanked its grassroots advocates, revealing they had sent over 70,000 messages to their members of Congress, as well as thanking the 215 senators and representatives who championed the bill, including its lead sponsors, Senators Shelley Moore Capito and Chris Murphy.

What can Europe learn from the USA?

We asked senior figures from key European Parkinson’s patient organisations for their thoughts on how this milestone bill could inspire Europe to approve a similarly official plan to help our own Parkinson’s community.

Parkinson’s Ireland CEO, Shane O’Brien, said:

“We at Parkinson’s Ireland feel that at EU level, a similar plan should be adopted to end Parkinson’s. Such an act would create measurable objectives and would in turn be another way to hold key decision makers to account. We have witnessed the benefits of the UN Convention on the Rights of Persons with Disabilities. We have seen from the COVID pandemic, the impact that international cooperation can have on complex health issues. The Parkinson’s community across Europe deserves a renewed focus on improved treatments and the search for a cure.”

Alex Reed, President of the European Parkinson Therapy Centre, said:

“The rapid growth of Parkinson’s over the next 20 years will put an unbearable burden on economic budgets of European Governments”. The USA government have recognised this and recent research shows that with extra funding to stop progression and reverse the devastating effects of Parkinson’s will decrease the costs long term to the economy and massively impact the lives of thousands of people. It is essential and the moral duty that European countries are seen to be taking action based on economic and humanitarian realities, keeping more people in the labour market, lowering health costs and improving lives. This is the core role of any government and we strongly believe the USA legislation will help make this happen.”

Here at Parkinson’s Europe, our Director General, Russell Patten, said:

“We were delighted to hear the news that Congress has Passed the National Plan to End Parkinson’s Act. It is an amazing achievement and demonstrates what can be accomplished when people living with Parkinson’s, organisations and political champions rally together to demand change.

With European election week finally here, we will soon have a set of newly appointed MEPs. This provides us with an amazing opportunity for us in Europe to ramp up our campaigning efforts to ensure that decision makers address the priorities and needs of people living with Parkinson’s. Whilst we know there are many differences between US and EU health structures, systems and legislation, there are clear parallels between what this Act aims to achieve and what the European Parkinson’s community have said that they want in our recent Manifesto i.e greater access to care, better treatment pathways, improved diagnosis, and increased awareness.

There are valuable lessons that we can learn from the process which our friends in North America have been through and I am keen to see if we can take on a similar challenge in Europe.”

Find out more about the National Plan to End Parkinson’s Act on the Michael J Fox Foundation and Parkinson’s Foundation websites.

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“After exercise you see this aura, this change within them.” The Parkinson’s charity changing lives in Nigeria

John Korede Akinola from The Adewunmi Desalu Parkinson’s Foundation tells us how their exercise programme is helping people across Nigeria.
04 June 2024 By Laura Vickers-Green
Stories ADPFafricaexercisenigeriasummer of sport

John Korede Akinola is Programs Manager at The Adewunmi Desalu Parkinson’s Foundation (ADPF), a non-profit supporting people with Parkinson’s and their families across Nigeria. He spoke to our Insight and Engagement Manager Fiona Montague about why their Parkinson’s exercise programmes are having such a big impact on the community, as well as discussing the biggest challenges faced by people with Parkinson’s in Nigeria, including accessibility and the rising cost of medication.

“For people with Parkinson’s, we have just one centre in the whole of Nigeria,” John reveals at the beginning of his call with Fiona.

This shocking fact is even more staggering considering Nigeria has a population of over 220 million people, with estimates of Parkinson’s prevalence potentially in the hundreds of thousands, but this only makes the sheer breadth of the services offered by The Adewunmi Desalu Parkinson’s Foundation (ADPF) all the more impressive:

“First and foremost, we provide a pathway for diagnosis to referral,” John explains. “We reach out to people with Parkinson’s that are yet to confirm their disease diagnosis, through community outreach, and once they come to us we refer them to a neurologists at the teaching hospital just to ensure that they get the right diagnosis. We also have a physiotherapy service that will give an assessment and prepare a treatment or a rehabilitative care plan, which is tailor-made for each individual. Then we have other programmes, that we call rehabilitative programmes, like dance therapy, non-contact boxing, table tennis, walking football, a low-impact gym. And we have support groups.”

John Korede Akinola, Program Manager at The Adewunmi Desalu Parkinson’s Foundation

The ADPF also runs an “Overcoming Micrographia” group, which helps people with their handwriting, and is about to launch some speech therapy and occupational therapy services using materials from the global LSVT (Lee Silverman Voice Treatment) organisation.

Without their foundation, there would be virtually no rehabilitative care and support for people living with Parkinson’s in Nigeria. But this doesn’t put John and his team off their ambitions to extend their Parkinson’s exercise programme even further.

“As time goes on we want to engage in biking, across the vicinity where we are… and we are hoping that once we get some other evidence-based sporting activities that we can incorporate into the programme.”

The foundation has also recently hosted a table tennis tournament, which was very popular, and last year they and Parkinson’s Africa co-hosted the Walking Football Parkinson’s Cup 2023, the first walking football and Parkinson’s awareness tournament in Nigeria. But while walking football has proven hugely popular for both men and women who take part in the centre’s Parkinson’s exercise programmes, funding issues are currently preventing them from running full walking football sessions.

Participants at the Parkinson's Walking Football Cup 2023
Participants at the Walking Football Parkinson’s Cup 2023

“For now, we only have a small pitch where we do warmup exercises,” John says, “It’s one of our major activities at the centre, and while both males and females participate in these warm-ups, they’re hoping that one day we’ll kickstart full sessions.”

“From day one, once they see people like them doing exercise, they are encouraged.”

While there’s certainly no lack of enthusiasm for the Parkinson’s exercise programmes offered by the ADPF, it can of course be difficult initially to motivate people who are struggling with their diagnosis.

“At the ADPF, there’s always one thing we observe,” John says, “Anybody that comes to the centre for the first time, they always have this apathy. They don’t want to do anything. They’re like ‘let me just go and see what’s going on there’. But from day one, once they see people like them doing exercises, engaging in different activities, they are motivated… they are encouraged.”

The centre also employs various techniques to spur on less confident attendees to participate, such as Parkinson’s exercise buddies, encouraging caregivers to take part in the sessions, and offering classes grouped by different stages of Parkinson’s so participants have similar physical abilities. And when the barriers are more in the mind, verbal affirmations work wonders:

“We try as much as possible to motivate people, to make them see that okay, yes, Parkinson’s doesn’t have a cure yet, but you can actually slow down the progression if you adhere to your medication and you adhere to an exercise regime, based on what your body can carry. So that gives them the motivation to want to do more.”

The results speak for themselves. The centre uses the MDS-Unified Parkinson’s Disease Rating Scale to conduct an assessment when participants make their first visit, and then repeat a followup assessment after they’ve been taking part in the Parkinson’s exercise programme to show participants how far they’ve come.

“They see tremendous improvement, and they’ve been able to manage their symptoms, the psycho-social aspect of the disease. The willingness and motivation to want to do more is one major thing that we’ve observed with all the members that are attending the facility.”

The centre’s boxing couch, Mr. Ibrahim, teaching a class

“We’re doing our best to change the narrative”

Inspiring as it is to hear about these achievements, there are two major barriers standing in the ADPF’s way: accessibility and the cost of medication.

“Some people just can’t get to the centre,” John explains. “And we don’t have the means to help, we don’t have a mobile centre. Sometimes members help each other by giving some form of transportation to our sporting activities. If we had structured funding for that, it could help.”

The ADPF tries to offer hybrid exercise sessions and support groups so people can take part virtually, but it’s not the same, and some of the activities need sporting equipment that people wouldn’t have at home. And in some rural areas of Nigeria, people don’t even have access to a phone or the internet to be able to take part remotely.

John explains that the Foundation also uses modern technology to bridge the gap of not having enough physiotherapists to help the growing number of people with Parkinson’s in Nigeria.

“We have a physiotherapist that does assessments, but sometimes they get overwhelmed, because of the number of people we have coming in. We need additional hands. That’s why we always leverage the use of social media the internet to transmit some of the interventions that we provide. It might not be the most appropriate means, in terms of how physiotherapy services should be rendered, but we hope that it will help people with Parkinson’s who do not have access to physiotherapy in some rural areas in Nigeria.”

Sadly, another major challenge is the price of Parkinson’s medication, which is rapidly growing in Nigeria.

“Some people don’t have the funds to get the medication they need. Without it, they can’t participate in any sporting activities, and that’s very critical for us. And some people that visit us are very vulnerable; for instance, we have a single mother, without any help, catering for children and living with Parkinson’s, and she needs to go to work, to manage, so those are some of the challenges that people with Parkinson’s in Nigeria face. We’re doing our best to change the narrative.”

Participants take part at a warmup class at Move 4 PD 2023

“The Parkinson’s community in Nigeria, they are willing, they are ready!”

But alongside these significant challenges, the people who work at the ADPF are kept motivated by the results they see in the people who visit their centre.

“I remember someone saying ‘Parkinson’s doesn’t stop, so I won’t stop,'” John says, “After coming to the centre and doing the exercises, they want to keep moving. Someone said to me: ‘Exercise brightens my day. I know that after exercising, I’m able to carry out all my daily activities.'”

This joy after exercising is palpable:

“There’s this thing that we see with people after they participate in the walking football, there is this aura that we see around them, the excitement, the joy to want to do more — even though we do it maybe for 30 or 40 minutes, in that period, there’s this light that is shining on somebody’s face, somebody that has not been smiling, has not been active, after exercise you see that aura, this change within them.”

These results spur the team on to push forward with more fundraising activities. In June, the ADPF is once again hosting its annual “Move 4 PD”, a two-kilometre walk for people with Parkinson’s to raise awareness and sponsorship, which they hope will have a large media presence from across Nigeria.

“We are limiting the number of people that can access this because of funding,” John explains, finishing our call with a rallying cry that we want the whole Parkinson’s community to hear.

“There are so many programmes that we have in the pipeline that we cannot even implement! For instance, the walking football — I’ve explained how excited the members are when they play walking football. It’s something that they would want to do over and over again.  Once we have funding for all of this, there is a lot we can do with the programmes — and the Parkinsons community in Nigeria, they are willing, they are ready! They want to participate in all of this.”

For more information about Parkinson’s exercise and sport, visit our Sports & Exercise Hub. Find out more about the Adewunmi Desalu Parkinson’s Foundation (ADPF) on their website, where you can also make a donation to help continue their work.

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European Elections 2024: how does it impact people living with Parkinson’s in Europe?

Here's how the 2024 European elections could have a major effect on Parkinson's issues like healthcare policies, research funding and patient rights.
30 May 2024 Fiona Montague
Insights advocacyEuropean parliamentEuropean Unionpolitics

Between 6-9 June, the 2024 European Elections will take place, and many of us across Europe will cast our vote for members to represent us at the European Parliament (MEPs).

The elections hold significant implications for people living with Parkinson’s on issues such as healthcare policies, research funding to cross border healthcare and patients rights, so this is a great opportunity to support those candidates that are aligned to the needs and priorities of the Parkinson’s community.

As the time to vote draws close, we’re looking at how the results might impact those living with Parkinson’s in Europe.

We start by asking Gary Boyle, Vice President of Parkinson’s Europe, for his perspective:

Gary Boyle

1. Why do you think the European Elections 2024 are important to the Parkinson’s community in Europe?

With respect to promoting awareness, providing information and increasing education on life with Parkinson’s. The European elections are the most opportune time to bring our needs and wants to a very wide geographical and political audience. We need to get into the hearts and minds of decision makers and politicians who will decide the next key objectives for Europe. Politicians will be calling to all doors across the continent looking for our No.1 Vote. If we have a strong message and a strong network to support, we can influence the direction of European policy, hopefully in our direction.

2. Why is it important for people living with Parkinson’s to vote/engage with politics?

We need as many advocates as possible to champion the lives of people living with Parkinson’s, as otherwise we will not be a priority for the next assembly of MEPs in Brussels. Casting our votes in the upcoming EU Election is our individual opportunity to influence EU policy. We cannot have a situation whereby Parkinson’s is the fastest growing neurological condition on the planet, yet it is not seen as a key priority for the European Parliament.

3. What does a new Parliament mean to people living with Parkinson’s?

A new Parliament is a new opportunity for all of us living with Parkinson’s. If we get our message straight and we all get on message, we will enhance our chances of being ‘top of mind’ with policy makers and decision makers when it comes to allocating EU resources. We need to emphasise that resource allocation is an investment in our future, which will significantly reduce future costs.

4. What key changes would you like to see the new Parliament bring about after the 2024 European Elections?

It would be great to see the new Parliament take action to reduce the bureaucracy that exists in the EU. If it could only reduce the antiquated process of bringing new drugs to the market, that in itself would be a wonderful win for many, many people across the continent, not just us living with Parkinson’s.

Elisabeth Ildal

Next we speak to Elisabeth IIdal, founder of our latest Member Organisation Cure4Parkinsons and also running as a candidate for the European Parliament.

1. Why did you decide to run for European Parliament?

I am running for a seat in the European Parliament as I want to raise awareness and strongly argue for the needs of research funding for this incurable disease.

2. Why is it important for people living with Parkinson’s to vote/engage with politics?

It is extremely important that People vote in order to get the right politicians into the European Parliament, who will argue for further research funding and quality of life for people with Parkinson’s.

3. What does a new Parliament mean to people living with Parkinson’s?

A new Parliament means new people in the seats in the European Parliament. If the Parkinson’s Movement shouts higher and stronger, we have a chance to raise awareness and a new focus on Parkinson’s. To argue for establishment of further European corporations programs, in order to speed up the treatment.

4. What key changes would you like to see the new Parliament bring about?

As Parkinson’s is the fastest growing brain disease in the world, I will fight to bring Parkinson’s to the top of the agenda in the European Parliament.

Russell Patten, Director General of Parkinson’s Europe

And finally we asked Director General of Parkinson’s Europe his thoughts on the upcoming European Elections 2024 and how this might impact on Parkinson’s community in Europe:

‘The upcoming European Elections 2024 are both a threat and an opportunity for Parkinson’s Europe and Parkinson’s. On the one hand, there is a deep concern that health policy will decrease in importance in the new EU-Brussels environment due to the expected shift to the political right, who will likely be more interested in immigration and powers back to the national level. We therefore need to do everything possible to mitigate this threat and build a stronger profile for Parkinson’s and build awareness amongst the new EU decision-makers.

But it is also an opportunity as there will be a massive change in decision-makers in Brussels not only because of the elections but also a new Commission – the Executive body of the EU – coming in at the end of the year. This change allows us to re-introduce ourselves and develop new friends and contacts with health-minded decision makers to keep health policy alive for the coming next 5 years.

Parkinson’s Europe is looking to establish a Parkinson’s parliamentary interest-group with Members of the European Parliament which would act as a solid platform to raise our profile and educate and influence EU decision-makers. We will continue to call upon our friends in Brussels, namely EFNA – the European Federation of Neurological Associations) and EPF (the European Patients Forum) as well as the Word Health Organization (WHO)in Europe Chapter to continue to put pressure on the EU to speed up an action plan within the NCD platform to undertake specific-disease related actions’

To find out more about how the elections work, how many MEPs are elected, what are the main political groups and most importantly how you can vote, visit the European Elections 2024 website. And if you are interested in getting more involved, there are election toolkits created by both the European Federation of Neurological Associations (EFNA) and the European Patients Forum (EPF).

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Ray Kennedy Weekend 2024: European Parkinson’s football tournament heads to Norway

Are you a person with Parkinson’s who plays football? The Ray Kennedy Cup is your chance to play against other European teams
29 May 2024 Verity Willcocks
News exercisefootballNorwayRay Kennedy Cupsummer of sport

The 13th edition of the Ray Kennedy Weekend, an international football tournament for people with Parkinson’s, will take place in Moss in  Norway in September – and it’s not too late for teams to enter!

The event will take place from 7-8 September, with social events for participants on 6 and 7 September. On the Saturday, there will be traditional ‘running’ football matches with teams of seven players, while the Sunday will feature walking football only, with six players in each team.

One of the organisers is Terje Jensen, who will also play for the Norway team in the tournament. He says: “It’s for people with Parkinson’s, and it’s organised by people who have Parkinson’s. It’s a good way for us to share our knowledge and experiences with other people with Parkinson’s from other countries.”

“I was part of this for the first time last year and it was really great. I play as a defender. Our team came in second place – but this year we’re aiming for first place!”

The matches will be refereed by professionals from the Norwegian Football Association, which is also helping to organise the tournament.

There are also plans to hold an ‘all-stars’ game on the Sunday, where a team of famous Norwegian football players will play against the best players from the tournament.

Currently, around 10 football teams from Norway, Sweden, Denmark, England, Wales and the Basque Country are taking part.

“There are both single-sex and mixed teams taking part – we really want to encourage more women to play football,” says Terje.

The Ray Kennedy Cup was set up by Danish physiotherapist Finn Egeberg Nielsen and Eigil Sabroe in memory of the English football player Ray Kennedy, to support physical activity, wellbeing and networking among people with Parkinson’s. Kennedy played for Arsenal and Liverpool football clubs, but his career was cut short when he was diagnosed with Young Onset Parkinson’s in 1984 at the age of 32. He died on 30 November 2021, at the age of 70.

The deadline for teams to compete in the Ray Kennedy Weekend is 31 May, although late entries will also be considered. Teams will need to make their own travel and accommodation arrangements, and players’ families are also welcome.

To find out more, email Terje Jensen or contact the organisers through their Facebook group, Ray Kennedy Weekend Norway.

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