The North West RIG Launch meeting!

Meeting link:

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


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.”


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      


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 

The first NWRIG open meeting

Dear NWRIG members,

It was wonderful to see so many of you at our first open meeting via Zoom. This is just a quick update re: discussions and how we’ve followed-up.

  1. After a few introductions, we discussed whether the group needed a social media presence. There was a mixed response (some prefer Facebook, some Twitter, some neither!). We agreed that Facebook was most used, and Twitter has its uses. But, we’ll also make sure that important information is communicated here on the website and via email.

Our Facebook and Twitter groups are now ready to use, and you can join via the buttons on the top right of this page.

2. The main discussion was around the format of the online event planned for Friday May 14th. The group are really keen for the event to happen, and think there will be a lot of interest in attending across the region and beyond.

However, in my enthusiasm to showcase some of the brilliant research going on in universities and NHS trusts across the North West, I had planned a too-full schedule. Instead, many in the group felt the launch event should focus on one or two speakers, with plenty of time for Q&A. This makes a lot of sense to me (I’m now well accustomed to screen fatigue), and we’ve re-thought the event along those lines.

I will send out a poster to advertise the event when we’ve finalised the speakers.

3. We had a few offers from members who would like to contribute to the group by writing blogs, speaking about their experiences at meetings, and even running online dance taster sessions! We’re really grateful for all these responses, and please do feel free to get in touch if you’d like to get involved too.

4. Finally, it was stressed that our group should focus on making sure there are opportunities for people with Parkinson’s to be involved in research from the earliest stages. We’re very lucky to have some experts on Patient and Public Involvement among us, and we were happy to hear they’re keen to share their ideas at future meetings.

As always, please feel free to contact me: if you have any thoughts


Parkinson’s: The Funny Side

Paul Mayhew-Archer is a British writer (The Vicar of Dibley), producer, script editor and actor. He recently wrote a documentary called “Parkinson’s: The funny side”, which made us laugh. We thought you’d enjoy it too. It is available on iPlayer (search for Parkinson’s: The Funny Side), and can be viewed here along with other short films about Parkinson’s. ‘The Funny Side’ starts at 46 m 45 s.

In the documentary, Mayhew-Archer takes us to the University of Oxford’s Department of Anatomy and Physiology, where research is being undertaken to develop a phone app that can diagnose Parkinson’s using voice recordings.

He also tells us about exciting new research, funded by Parkinson’s UK, that’s identifying new targets for treatment. You can hear more about this research from the principle investigator, Professor Richard Wade Martins.

Quizzing On

Running out of quiz questions for your Zoom meet-ups with friends and family? Fear not, we’ve put together some entertaining quiz rounds to keep you going.

If you’re able, we’d love it if you made a donation to Parkinson’s UK, who are providing critical support throughout the Covid-19 crisis. If you’re not in a position to give at this time however, that’s fine too; quiz on!  

The Movie quiz

We dragged some children (kicking and screaming from their homeschooling lessons) into re-enacting some classic movie scenes for us. Can you name the movie titles?

Due to highly iconic instant-give-away theme tunes in some of the movies, some of the the clips – such as the first one – don’t have any sound. Others do however, so make sure you click “share computer sound” if you’re hosting the quiz via Zoom.

Question 1: Name that movie

Question 2: Also, name that movie

Question 3: You get the picture…

Question 4

Question 5

Question 6

Question 7

Question 8

Question 9

Question 10

Question 11

Round one complete!
If you’re the quiz master, now is a good time to stop sharing your screen. The answers and bonus questions can be accessed via the Get The Answers button bellow.