We’re very excited to announce that we have set a date for a new North West Research Interest Group event. It will be on January 21st from 12:15 – 3pm. As before, we will cover your travel, even if you need to come by taxi.
The focus of the event is to get together and have fun (there will be food and drinks, and most importantly, more dancing with Lewis!).
We also want to celebrate Research Involvement. Think of this event as a toast your role in changing how we do research, and an invitation to contribute more (or for the first time) in 2023.
Some of the activities will include:
Remember those movement rehabilitation games we played at our last event? We’ll hear about how your feedback helped us make them even better. If you didn’t make it last time, this is your invitation to come and take part.
Patsy Cotton will tell us about the Get It On Time campaign and how you can contribute to new research on Parkinson’s medication in hospital
Parkinson’s UK and Ellen Poliakoff (University of Manchester) will tell us more about “involvement” in research. After hearing from them, you can decide if you’d like to be involved in some of our future projects – we need your help to make sure we’re asking the right questions in the right way.
Whether you came to the last event or not, and whether you have been involved in research before or not, we really hope to see you there.
To help us cater for the right number of people, please book here:
Registration and abstract submission is now open for the 6th World Parkinson Congress, which will take place in Barcelona on 4th-7th July 2023.
As a Science Ambassador for the World Parkinson Congress (WPC), I want to encourage researchers and people with Parkinson’s to attend this important conference, which offers a truly unique opportunity for scientists, clinicians, health professionals, and people living with Parkinson’s to come together and share knowledge and ideas.
Abstract submission is open until 13th January – only a few days left to submit!! Abstracts on original scientific work or living with Parkinson’s are welcomed. A limited number of travel grants are available to support early career researchers and people with Parkinson’s to attend the WPC.
Why submit an abstract to the WPC?
WPC is an international, interdisciplinary conference dedicated entirely to Parkinson’s research, treatment, and care. The program includes a range of sessions spanning basic science, clinical science, treatment options, comprehensive care, and living with Parkinson’s, as well as workshops, roundtables and networking opportunities. The Congress takes place every 3 years, with previous locations in North America, Asia, and Europe. With this year’s conference taking place in Barcelona, it is easier for many delegates from the UK to attend.
The WPC places great importance on the experience of researchers in sharing their work with colleagues and advocates. The exchanges that take place during the poster sessions, poster tours, and throughout the conference are crucial to building collaborations and developing relationships between researchers and advocates that is unique in the Parkinson’s community and has had a profound impact on many community members.
Please see the WPC website and this short video from the WPC Ambassadors for more information.
For a personal perspective, you can also read the blogs written by myself and Colin about our experiences of attending WPC as a researcher and a person with Parkinson’s:
‘Off’ is a word with a particular meaning for people with Parkinson’s who take medication to control their symptoms. ‘Off’ happens in-between scheduled medication dosages. It is not just an unwelcome return of motor symptoms; it can also be painful and frightening, as described here by a person with experience.
That being ‘off’ is a feature of Parkinson’s tells us something important: Parkinson’s medication is time critical. While ‘Off’ periods can happen unexpectedly, they happen most often when medications are missed or delayed. Just as insulin is time critical for people with diabetes, dopamine replacement is time critical for Parkinson’s. When someone with Parkinson’s doesn’t get their medication on time, the consequences can be severe, even life changing.
There are some situations that put people with Parkinson’s at risk of losing access to their medication. If you don’t have Parkinson’s, you might be surprised to learn that one of these situations is simply: being in hospital.
Patsy Cotton, a Parkinson’s nurse specialist and Chair of Parkinson’s UK’s Time-critical Parkinson’s Medication (‘Get It On Time’) Steering Group, tells us more:
“We know from the 2019 UK Parkinson’s Audit that just 53% of people with Parkinson’s say they get their medication on time, every time when they’re in hospital. This is despite the well-established ‘Get It On Time’ campaign and a handful of areas where we see excellent practice. In other words, we’re still some way from ‘cracking’ this problem”
Patsy told us more about the work of the Time-critical Parkinson’s Medication group:
The most visible aspect of our work is the extraordinary campaigning efforts of Dr Jonny Acheson, Clare Addison and fellow NHS professionals who live with Parkinson’s. This group has approached Chief Executives at every NHS organisation to ask them to sign the Time-critical Parkinson’s Medication (‘Get It On Time’) pledge. At the time of writing:
69 (out of 144) NHS organisations in England have signed up
5 (out of 14) have signed up in Scotland
4 (out of 7) have signed up in Wales
5 (out of 5) have signed up in Northern Ireland.
There is real momentum behind this work and the group’s efforts have meant we’ve managed to hold a number of meetings with high-profile figures across the UK – including the Chief Nursing Officers in all four UK nations and Henrietta Hughes, the Patient Safety Commissioner for England.
Alongside this work, sub-groups are developing three new toolkits:
A toolkit aimed specifically at NHS staff.
A toolkit aimed specifically at hospital pharmacists.
An ‘advocacy toolkit’ for people with Parkinson’s.
We think these new toolkits can make a real contribution to improving on that 2019 Audit figure. All three toolkits are in draft and our intention is to publish them in mid-2023.”
What else can be done?
We recognise there is a long way to go before all people receive all of their medication on time while in hospital. At Manchester Metropolitan University therefore, we are carrying out research that aims to reduce the impact of missed medication for the people who report not always getting their medication on time.
We have been working with people with Parkinson’s in our local community and Parkinson’s UK’s Time-critical Parkinson’s Medication campaign. Together, we have designed a new study that aims to measure the long-term impact of missed medication dosages while in hospital. This is important because the impact of missed/delayed medication does not just go away once medication is reinstated: delayed or missed medication can lead to longer hospital stays, slower recovery times, and adverse health outcomes, including falls.
Importantly, because we know very little about the long-term impact of delayed or missed medication while in hospital, there are currently no policies or interventions that are designed to reduce this impact. Our study will measure many aspects of health over a 6-month period in people with Parkinson’s who have been in hospital, whether they have taken 100% of their medication on time, or whether they experienced delays or omissions to some (or even all) doses.
“We will work together with the Time-critical Parkinson’s Medication campaign group to use the data from this study to inform future policy on managing the impact of missed/delayed medication while in hospital, with potentially transformative implications for Parkinson’s healthcare both nationally and internationally.”
We hope, in time, the biggest concern about going into hospital for a person with Parkinson’s is the worry about which PJs to pack.
Get involved
If you are living with Parkinson’s and are expecting to go into hospital within the next year, are currently in hospital or have been discharged from hospital in the past 4 weeks, please find further information about how you can take part here.
If you have any questions, please contact Dr Chesney Craig via email (c.craig@mmu.ac.uk) or telephone (0161 247 5538).
What a day! It was brilliant to see so many of you at our event in Manchester earlier this year. We had some really positive feedback about the day, and some brilliant suggestions for what we should do for the next event.
We’re pulling together some plans for another research-focused meet-up in December, and will let you know what we come up with very shortly. We can say however that the next event will be about research involvement: how can you shape what researchers do, so that it is more relevant for you and your family?
In the meantime, I hope you can spot yourself on the photos below.
The Body Eyes and Movement lab (University of Manchester) are collaborating with artist Antony Hall to explore movement and sensory experiences in older autistic adults and people with Parkinson’s. Older adults with Parkinson’s or autism (>40 years of age) are invited to an artistic experience to help shape future research. At our interactive art-science session you can meet scientists and artists who will help you to explore and share your experience of movement and the body. You are welcome to bring a friend or partner.
4th, 7th or 9th May 2022
Venue: Manchester Art Gallery, Mosley St, Manchester M2 3JL
The research group of PD Avengers needs your help to develop Sparks of Experience. Parkinson’s research needs a breakthrough idea and it may just be your idea that we are looking for.
No-one knows the condition better than those living with it day in day out. It is complex and very variable, both between patients and within patients. Even the experts are puzzled. Living with Parkinson’s means making significant changes to life as we learn strategies and tactics to make life as easy as possible. We are constantly alert to any factors that seem to make a difference. Living with this pesky and perplexing condition demands a great deal of self awareness and self education and many give a lot of thought to their experiences. You may think to yourself “I wonder why my symptoms are worse in the winter.”, or “How would it be different if I were left-handed?” or “Why is it I am always at my best when I go to see the consultant?” When you try to find the answers you think “Why isn’t anyone researching this?!” We want to collect these sort of thoughts from around the globe and highlight them to researchers and funders.
We all know stories of important scientific moments, like Fleming’s discovery of penicillin. It may appear to have been accidental and leaving the petri dish on the window sill may not have been planned, but it was no accident that Fleming’s curious mind made a breakthrough. We believe that there are curious minds that will set new directions to work towards a cure or novel treatments for Parkinson’s and yours might be one of them. Your experiences could provide the inspiration for a new direction for research and that so far elusive key to unlocking the mystery of Parkinson’s.
There are already good, well known examples of inspiration in the Parkinson’s world too, including an observation by a patient back in 1969 who noticed that her Parkinson’s symptoms improved while she was taking the prophylactic Influenza drug Amantadine. The drug was redeveloped as a Parkinson’s treatment. More recently we heard about PD Avenger Joy, with a sensitive nose, and how she noticed a change in the way her husband smelled long before his PD diagnosis. She brought it to the attention of a researcher and the resulting projects have provided exciting developments working towards a simple diagnostic test.
What do you ponder about? No matter how quirky, off the radar or even boring and obvious it may seem to you, please send us a couple of paragraphs describing your thoughts and ideas in your own words. We will collate the list, see if there are common threads, highlight the most frequently occurring and make sure that researchers and funders around the world get a copy. We’ll try to find researchers who work in appropriate fields and send them collected thoughts. Who knows where your curious ponderings may lead.
We’ve already had many different experiences and observations sent to us but we are still getting new ones. We’ll keep on collecting until no new ideas come up and we can be sure we’ve got most of them. Please e-mail, we’ll be pleased to hear from you.
We’re now offically a Parkinson’s UK RIG. Our launch event was a huge success thanks to your engagement and involvement. Special thanks also go to Prof Monty Silverdale for telling us about his work on the ‘smell test’.
If you missed the event, or would like to watch again, just click the “Click here to watch the event” button, and enter the following passcode when you get to the Zoom page.
Dr Ellen Poliakoff (Body Eyes and Movement BEAM Lab, University of Manchester) is collaborating with researchers at the Royal Northern College of Music, Lucerne (Switzerland) and University of Exeter to explore how people with Parkinson’s use music to manage their movements and mood and movements. The survey should take approximately 30-45 minutes (or you can request to complete it via phone or video link). We will ask you to name pieces of music that you listen to for different reasons, so you might like to be close to your musical collection (iPod, CDs, records etc.), as well as about your music and dance experience. We will be recruiting until 28th June 2021. If you are interested, please follow this link
The World Parkinson Congress (WPC) is an international conference, held every 3 years, that provides a unique forum for researchers, clinicians and patients from across the world to meet and share knowledge about the latest developments in Parkinson’s research and treatment. The WPC’s goal is “to advance an all-encompassing approach to the treatment of Parkinson’s by bringing together the full spectrum of those who serve the Parkinson’s community and those who live with PD”.
My first WPC experience was Portland 2016, and as an early career researcher I was lucky to be awarded a travel grant to attend the congress. What first struck me was the number of people with Parkinson’s who had travelled to be there, and I immediately realised that WPC was going to be different to any of the other international conferences I’d been to. As much as I enjoyed hearing about the latest advances from world-leading experts, I also had the opportunity to gain insights directly from people with Parkinson’s, whether through discussing my research at the poster session or just chatting in the coffee breaks. This was a something I had not experienced before at a conference, and it reinforced the importance of our efforts as researchers to try and improve understanding of Parkinson’s and outcomes for those living with it.
I had met Colin, a person with Parkinson’s and research advocate, in the North West of England where we had begun to explore potential collaborative links, and was pleased to hear that he would also be going to the congress in Portland. It turned out Colin was already a WPC veteran, and when we met up again (in the Northwest USA this time) he introduced me to some of his contacts. Both Colin and I were also very fortunate to be able to attend the next WPC in 2019, in the beautiful city of Kyoto. By now we had discovered a shared interest in dance (mine from a scientific perspective; Colin’s as an aspiring tap dancer) and had worked on a research project together in Manchester. There is increasing interest among the Parkinson’s community in non-medical, widely available options such as dance (among others) to improve everyday life with the condition, and it was good to see this well represented in the 2019 program.
I would really encourage fellow researchers to attend the WPC for the opportunities it provides to make connections and gain insights from others working across different sections of the Parkinson’s community. However, WPC is more than an academic meeting. There is a great mix of talks, exhibitors, and creative projects to immerse yourself in, and the atmosphere is truly inspiring.
I’m looking forward to the next WPC in Barcelona in June 2022, which I hope will see a greater presence from across the Parkinson’s community (scientists, clinicians and patients) in Europe. Starting in May 2021, there will also now be a virtual congress in the years between the triennial event, providing an opportunity to keep up to date with the latest developments.
Colin’s experience of the World Parkinson’s Congress
What do the following cities have in common: Washington, Glasgow, Montreal, Portland and Kyoto?
Answer: they have all hosted meetings of the World Parkinson Congress. The Congress meets every three years, attracting delegates from all over the world. It brings together the very best researchers, clinicians, healthcare professionals and therapists. However, it is not simply a conference for those with scientific or professional interest. It is equally focused on the involvement and engagement of people with Parkinson’s and their carers, plus the voluntary organisations that support people who are living with the condition on a daily basis.
I was diagnosed with Parkinson’s in 2001 at the age of 54 and within a year, I had taken early retirement. I knew that Parkinson’s was progressive and I had seen others with the condition go into a rapid decline. I therefore waited with some trepidation to see how it was going to affect me. Meanwhile, having no paid work to do, I began to get involved in Parkinson’s UK as a volunteer, at first in my local Branch and eventually as a Trustee. This is when I first came across the WPC.
When the second World Congress took place in Glasgow, Parkinson’s UK were involved as the main host organisation. As a Trustee, therefore, I found myself in Glasgow as part of the Parkinson’s UK’s meet and greet team. I had been to many large conferences in my working life, but the WPC was a revelation. What made it unique was its accessibility to anyone with an interest in Parkinson’s. For example, a person with Parkinson’s could listen to an account of the latest developments in brain surgery in one lecture room, and then move to the room next door for a class teaching yoga for Parkinson’s.
The range of issues covered in the 5 days was mind boggling. Everyone I spoke to at, or after, the conference felt that the quality of the engagement between the participants was really valuable, and really stimulating. I could understand why people were prepared to travel from every corner of the globe to be part of it, including my contacts from Parkinson’s New South Wales in Australia who I had met previously during a personal trip. But for the Congress, that link would have simply remained a pleasant memory, whereas it developed into a more enduring relationship.
What’s in it for me?
There are probably as many reasons for people to attend the Congress as there are delegates. Here are just some of the reasons that might be relevant in coming to a decision. Next year the location of Barcelona may put attendance more within reach for many whose home base is in Europe.
The researcher:
Interaction with people with Parkinson’s, which sets a context for the researcher’s task and provides a link between the research challenge and its potential outputs.
Cutting edge research – to update one’s knowledge of the latest developments from some of the world’s leading experts.
Presenting results – an opportunity to raise the profile of completed research projects and their conclusions in a poster display hall visited by hundreds of delegates.
Sharing thinking – learning about what other research teams are doing and how their projects may relate to yours.
The clinician and other health care professionals:
Interaction with researchers and identifying priorities for research.
Engagement with patients to explain and gain support for clinical trials.
To learn about the latest medical, surgical and other treatment options.
The person with Parkinson’s:
Knowledge and understanding to enable you to maximise the opportunities and resources available that can support you to live well independently. This knowledge and understanding can be acquired not only through engagement with the professionals but also from other people with Parkinson’s.
Confidence is a critical attribute in managing the condition and making treatment choices. This can be enhanced through engagement with others. Patients should not feel they have to face Parkinson’s alone.
Would I go again?
Like a shot! I enjoyed the Glasgow event so much that I made myself a promise to attend every subsequent Congress that I could. Since then my wife and I have managed to adjust our holiday schedule to take in the meetings in Montreal, Portland and Kyoto. And what’s not to like about Barcelona in June…?
Colin Cheesman
You can read more about WPC 2022 here, and register for the virtual congress (17-21 May 2021) here.
Parkinson's North West Research Interest Group 