Your experience – Our inspiration

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.

The Parkinson’s UK NWRIG is LAUNCHED!

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.

PASSCODE: q39S!R^f

Calling participants with Parkinson’s for a survey: How do people with Parkinson’s use music?

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 

https://www.parkinsons.org.uk/research/investigating-use-heard-and-imagined-music-mood-and-movement-management-among-people

Let’s talk about… going to conferences as a researcher.

The researcher’s perspective – Jude

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.

Jude Bek

judith.bek@manchester.ac.uk

@jude_bek

Let’s talk about… going to conferences as a person with Parkinson’s

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.

The North West RIG Launch meeting!

Meeting link:

https://parkinsons-org-uk.zoom.us/j/96483021915

Please Register for the event below so we can keep track on numbers

Schedule

May 14th 2021

1:30 Meeting opens

1:40 Introductory greetings from Nicola (chair)

2:00 Seminar style talk from Professor Monty Silverdale

Title: Diagnosing the Scent of Parkinson’s with Mass Spectrometry and Joy

Talk summary.

The chance of developing a cure for Parkinson’s disease will be massively improved if we are able to diagnose the condition at an earlier stage. Joy Milne, a ‘super-smeller’ from Edinburgh, noticed an unusual musky smell on her husband Les, 12 years before he developed Parkinson’s disease. This chance finding has enabled us to develop a test for Parkinson’s disease using a simple skin swab. Our test may be able to diagnose the condition more than 10 years before it is currently possible. This will speed up the development of a cure.

Professor Silverdale will tell the amazing story of Joy and how her nose may lead to a cure for Parkinson’s disease.

2:30 Informal Q&A

3pm Meeting close

Let’s talk about… constipation

World Parkinson’s Day (11th April) kicks off Parkinson’s awareness week, an annual opportunity to raise funds and increase awareness. To mark the occasion, the Parkinson’s UK’s North West RIG is publishing a series of blogs throughtout the week.

First up, let’s address a subject that people with Parkinson’s are often all too aware of: constipation.

Why are we talking about constipation?

First, it’s one of the earliest non-motor symptoms to emerge in Parkinson’s. Researchers at University College London have shown that constipation is one of the strongest predictors of developing Parkinson’s within 5 years. This is important for two reasons:

  1. Diagnosing Parkinson’s is incredibly difficult in the early stages. Symptoms that emerge before movements are affected offer the opportunity to reach an accurate diagnosis sooner. Importantly, this also means faster initiation of the treatments that will make people’s lives easier.
  2. As yet, there are no treatments that prevent or delay Parkinson’s. But, trials of new drugs are underway. However, even the most promising drug will fail if it’s not tested on the people it’s designed for (there is little point evaluating a disease-modifying treatment in people who have no disease to modify). So, while uncomfortable (on several levels), talking about constipation may be critical for the future of Parkinson’s medication. 

All that said, there are many reasons a person may be experiencing bathroom-related troubles, most of which are unrelated to Parkinson’s. This brings us to the second reason why we’re talking about constipation: how to identify the people with constipation who are in the early stages of Parkinson’s.

In a recent development, a team of researchers from Israel, Germany and Canada have uncovered the link between the very earliest stages of Parkinson’s and constipation. The team induced Parkinson’s-like pathology in the dorsal motor nucleus of the vagus in rodents. In humans, this is one of the earliest regions to develop Parkinson’s pathology. It also happens to connect with the gastrointestinal tract (the organs by which food and liquids make their way from one end of us, to the other, see image below).

After Parkinson’s pathology became established in the rodent vagus, its connections to the gastrointestinal tract became less active. Through a series of experiments, the authors confirmed that this drop in activity caused the rodents to pass bigger and less frequent droppings. Sound familiar?  

This work offers a new opportunity to use constipation as a predictor of Parkinson’s more accurately. Developing tools to detect changes in the vagus in people who are also constipated would help us predict who will develop Parkinson’s, and who may just need to hydrate more.

At Manchester Metropolitan we are using artificial intelligence analysis of medical images to measure the health of the vagus for the first time. We hope this will help us to identify people at risk of Parkinson’s long before they experience any motor symptoms.

In the meantime, for those of you who may be struggling with constipation, one of our members has some words of wisdom:

“The big P has several manifestations. One is certain muscles not responding to instructions from headquarters. As in my case, lips not being firm enough to stop drooling for one thing. At the other end of my languid body I have a more pressing problem. My rear end exit muscles have retrograded from automatic back to manual. Constipation is the word! The action required message just does not arrive and there is a pile up, luckily the police don’t turn out. It seems nothing can be done for the mechanism except the usual medication, but help is there in terms of softening the issue, if you get my meaning. A dose of CosmoCol each morning allows an easier passage, if not to India at least to somewhere useful nearby.”

THE GOOD DOCTOR

Doctor Parkinson was a funny man,

I know this as he makes me laugh at me

Walking slowly just as fast as I can,

My legs wobble and I can’t bend a knee.

I find it amusing very first thing

Missing my trouser leg time after time,

Falling back onto the bed then the floor.

Getting back up is a mountain to climb.

My eyes do not blink, my face just a stare,

 I smile when I can to disguise my drip.

 Did the good doctor make funny faces?

 Would I laugh or keep a stiff lower lip?

 Never mind it could be a lot, lot worse

 The Neuro Re-habituation team

 Has me exercising this way, then that.

 Now I feel like the cat that got the cream.

                                                       John Howarth      

DOG

Sitting peacefully in the spring sunshine

Up from the packhorse bridge at Wycoller

I watch a couple come over with their dogs.

Two were content to snap around their heels

The third, a golden haired setter made for me

At a run, tail down, a friendly approach,

It nuzzled me as I stroked its fine head. 

His large liquid dark eyes said I’m sorry;

Obviously he could smell my hidden disease.

 I smiled, thanking him for his sympathy.

 His owner called, reluctantly he trotted off

 Leaving me to enjoy the peace and beauty.

                                                                By John Howarth