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In this episode of 2 Parkies in a Pod, we’re talking about one of the most frustrating and sometimes confusing parts of living with Parkinson’s - ON and OFF periods.
What does it actually mean to be “ON”? What does being “OFF” feel like? And why can Parkinson’s symptoms sometimes seem to change throughout the day?
We’re joined by Professor Camille Carroll, Professor of Clinical Neuroscience at Newcastle University, whose work focuses on Parkinson’s, personalised care, digital monitoring and motor fluctuations, including “wearing-off.”
Please remember that the podcast is not a substitute for individual medical advice. If you’re experiencing changes in your Parkinson’s symptoms or medication response, speak to your Parkinson’s team or healthcare professional.
https://www.parkinsons.org.uk/research/get-involved
https://www.ejsactpd.com/
https://www.researchplusme.co.uk/join-parkinsons-research/
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Having witnessed her younger brother being diagnosed with Parkinson’s at the age of just 20, Anne had seen Parkinson’s first hand - but in a cruel twist of fate she was herself diagnosed more than 30 years later. How they have both dealt with their diagnosis is a truly inspiring story.
Listen in for a powerful conversation about family, resilience, exercise, friendship and finding a positive way forward with Parkinson’s.
Plus Dave gets an unexpected visitor...
Richard Brocklesby Sailing Fundraiser
https://gofund.me/704a90bee
Walkies for Parkinson's
https://events.parkinsons.org.uk/event/walkies-for-parkinsons/home
Par-Con 2026
https://www.parkinsons.org.uk/community/par-con
Submit your video questions for Par-Con 2026 at [email protected]
What happens when you’re told you have Parkinson’s — and years later, you’re told you don’t?
Mike Bells talks about the first signs, how the diagnosis affected both him and those around him, and the impact the Parkinson’s medication had. Then came the shock.. Mike was de-diagnosed almost a decade later.
Mike opens up about what it felt like to discover the news and what life looks like now.
Plus, Dave hits 60… and Kuhan gets back behind the wheel!
Mike Bell Maps
https://mikebellmaps.com/
Par-Con 2026
https://www.parkinsons.org.uk/community/par-con
Parkinson’s UK Nurse Appeal
https://www.parkinsons.org.uk/donate/parkinsons-uk-nurse-appeal/our-bbc-radio-4-appeal
Parkinson’s UK Walk Battersea Park 5th Sept 2026
https://events.parkinsons.org.uk/event/walk-parkinsons
Cure Parkinson’s Walk Battersea Park
https://cureparkinsons.org.uk/events/walk-to-cure-parkinsons-the-london-walk/
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2parkiesinapod.com
Guest: Dr Ashwini Oswal
For many people living with Parkinson’s, Deep Brain Stimulation (DBS) is one of the biggest treatment decisions they’ll ever face. But when is the right time to start thinking about it? Should DBS be viewed as a last resort, or could earlier intervention offer greater benefits?
In this episode of 2 Parkies in a Pod, we’re joined by Dr Ashwini Oswal, Honorary Consultant Neurologist at the John Radcliffe Hospital in Oxford. His clinical work and research focus on Parkinson’s disease, Deep Brain Stimulation and the next generation of adaptive DBS technology.
Together, we unpack the evidence behind DBS, explain how it works, discuss who is most likely to benefit, and explore whether the 5-2-1 rule is a useful guide for referral. We also talk about the role of medications such as Entacapone, Opicapone & Amandatine, ask whether DBS could one day prove to be neuroprotective, and look ahead to the exciting future of adaptive DBS.
https://www.parkinsons.org.uk/information/treatments/deep-brain-stimulation
How to get involved in table Tennis
https://tabletennisengland.co.uk/news/2025/table-tennis-england-and-parkinsons-uk-announce-partnership/
The advert that made Dave Cry
https://www.youtube.com/watch?v=-GEpT3e7Dfg
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2parkiesinapod.com
Guest: David Dexter, Director of Research, Parkinson’s UK
There’s a real sense of optimism in Parkinson’s research right now! In this episode we’re asking whether we’re closer than ever to treatments that can slow, stop, or even reverse the disease.
David Dexter joins us to discuss exciting developments including breakthrough stem cell research, the promising results from a drug called Syntara, why reducing brain inflammation could be a game changer, and how Parkinson’s UK decides which research to back.
We also chat to Yorkshireman Andy Cassy who’s had millions of Stem Cells “planted” in his brain. Two years on from his 12 hour operation, is it working?
We also explore whether stress affects Parkinson’s, if an apple a day really can help keep the neurologist away, the science behind fatigue and NAD+ a cheap energy boosting supplement
We finish with a fun quick-fire round to discover the person behind the scientist.
Plus- how Dave managed to skip into Wimbledon for semifinals day.
Parkinson’s UK Research
https://www.parkinsons.org.uk/research
Par-Con 2026
https://www.parkinsons.org.uk/community/par-con
Symprove
https://shop.parkinsons.org.uk/pages/partner-symprove
NAD+
https://amzn.eu/d/0aA8NY3s
Why am I so tired?
https://www.2parkiesinapod.com/podcast/episode/223d81c7/why-am-i-so-tired
Ask the professor
https://www.2parkiesinapod.com/podcast/episode/2da15954/ask-the-professor
2parkiesinapod.com
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This episode celebrates some of the incredible people making a difference in the Parkinson’s community through creativity, courage, sport, music and innovation.
Meet wildlife photographer, filmmaker and now gardener David Plummer, one of the talented people who helped Arit Anderson create the stunning Parkinson’s UK Garden at the Chelsea Flower Show:
https://www.instagram.com/davidplummerimages
Kuhan reflects on his DBS 1 year on with DBS specialist nurse John:
https://youtu.be/gCkyRdcNgbg
Ciaran and Lucy share their remarkable story of cycling around the world to raise money and awareness for Parkinson’s:
https://www.instagram.com/ciarandoesthings_
FA Cup Final Ian Moorehouse:
https://www.youtube.com/watch?v=zwus8-XDxMY
Rock Choir - over 400+ local choirs across the UK and Ireland:
https://rockchoir.com/
BURT - The Movie:
https://www.joeburke.net/burt
Ever fancied appearing in a film? A former Coronation Street actor explains how you could become a star of the silver screen:
https://www.instagram.com/108a_films
Sam reveals how he’s using artificial intelligence to help compose, create and produce new music:
https://www.instagram.com/samuelsmithmusic
And two Emmas tell us all about a festival designed especially for Parkies:
https://bigskyhideaway.com/parky-in-the-park
Twelve amazing people with inspiring stories. One uplifting episode celebrating the people who are making a real difference in the Parkinson’s community.
Plus Dave tries out a expiratory muscle strength trainer:
https://www.cuh.nhs.uk/patient-information/expiratory-muscle-strength-training-emst/
https://www.amazon.co.uk/EMST150-Expiratory-Muscle-Strength-Trainer/dp/B0094ME5BA
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In this special episode, Dave and Kuhan head to the world-famous RHS Chelsea Flower Show to explore one of the most moving and meaningful gardens of the year: Parkinson’s UK’s Garden for Every Parkinson’s Journey.
We’re joined by acclaimed garden designer and broadcaster Arit Anderson, who shares the deeply personal story behind the garden she created. Arit opens up about her family’s connection to Parkinson’s, how that experience- and the experiences of the Parkinson’s community - shaped the design, and why gardens can become spaces for reflection, resilience and hope.
Plus we meet Raymond the Chelsea Pensioner with Parkinson's
This week 2 Parkies in a Pod chat to former BBC technology correspondent Rory Cellan-Jones - a man who’s interviewed the likes of Steve Jobs and Elon Musk. He’s a Mover and Shaker launching an award-winning podcast, and is now one of the most important voices on tech and Parkinson’s.
He talks about his career at the BBC, his Parkinson’s diagnosis and the pros & cons of Tech.
Plus - The latest on Sophie the Romanian rescue dog, Dave gets hacked and Kuhan experiments with voice cloning
Links
https://rorycellanjones.substack.com/
https://www.moversandshakerspodcast.com/
https://www.ejsactpd.com/
Wispr Flow voice to text special offer
https://wispr.ai/pwp
What type of Parkinson’s do I have?
Featuring Prof Alastair Noyce
You’ve heard it a hundred times: “everyone’s Parkinson’s is different.” But what does that actually mean?In this episode, we unpack the main subtypes of Parkinson’s and what sets them apart clinically. Are you tremor-dominant or more rigid and stiff? Have you lost your sense of smell? How does young-onset progress? And in this clip we discuss if having a genetic type means your children will inherit Parkinson’s ? To help make sense of it all, we’re joined by one of the leading minds in the field: Professor Alistair Noyce, clinician, researcher, and a driving force at the cutting edge of Parkinson’s science.
Elsewhere, Kuhan boards a plane to Spain for the first time since his brain surgery, while Dave heads to the Yorkshire coast in search of puffins. And we spotlight a powerful awareness campaign - the “rose without a smell”- highlighting one of Parkinson’s lesser-known symptoms.Listen and follow at 2parkiesinapod.com or on Spotify / Apple Podcasts
Parkinson's Resilience Rose
https://www.roses.co.uk/product/780299/rose-parkinsons-resilience-4l-pot-ngw
PD Frontline (Genetic Testing)
https://mantal.pdfrontline.com/en
EJS ACT-PD Trial
https://www.ejsactpd.com/
Parkinson's UK Get Involved in Research
https://www.parkinsons.org.uk/research/get-involved/take-part-hub
We take a look at the use of pump technology (Produodopa) in battling the symptoms of Parkinson’s..
A small pump delivers a continuous dose of medication under the skin through a small needle.
How will it improve 'off' periods ?
How difficult is it to manage the pump and change the infusion site?
Can you lead a normal life with it?
Parkinson’s patients Anna Jewell and Helga McFarlane together with 'Professor AI' tell us the pros and cons of pumping it up!
Plus- Find out what happened when Kuhan turned off his DBS to play tennis…
Dave starts his brain surgery journey…
And Billy Connolly gets a new job as a museum tour guide…
More information
https://www.parkinsons.org.uk/information/drugs/produodopa
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