A new study published today reveals a worrying trend: there are now 166,000 people in the UK living with Parkinson’s but a further 21,000 are estimated to be undiagnosed.. and unsupported.

The Parkinson's UK study, the largest of it's kind, also reveals more than a third (36%) were of working age when diagnosed.

Separately the number of people with a more complex form of Parkinsonism (e.g. Lewy Body Dementia, MSA, PSP) has increased to 28,000.

The study also finds stark differences in rates based on ethnicity.

Even more concerning, in some parts of the country people are waiting up to five years to see a neurologist. The charity has called it a “Parkinson’s diagnosis crisis.”

With someone in the UK diagnosed every 20 minutes, we ask: why are the numbers rising, what’s driving the crisis, and what needs to change?

Join us as we dig into the data, with 3 experts from Parkinson’s UK and explore what this means for the Parkinson’s community — now and for the future.

For more information:

Parkinson's UK News Article:

https://www.parkinsons.org.uk/news/thousands-are-living-parkinsons-undiagnosed-and-unsupported-our-new-research-finds

Read the Parkinson's UK Research Blog:

https://www.parkinsons.org.uk/research/research-blog/our-research/parkinsons-uk-what-do-we-know

Parkinson's UK Statistics:

https://www.parkinsons.org.uk/about-us/parkinsons-statistics

Research Paper:

https://movementdisorders.onlinelibrary.wiley.com/doi/10.1002/mdc3.70368

www.parkinsons.org.uk

UK Helpline 0808 800 0303

Join the Research Support Network:

https://www.parkinsons.org.uk/research/research-blog/our-research/parkinsons-uk-research-support-network

https://www.parkinsons.org.uk/research/race-equality-research

Join the Black, Asian, Arab and Mixed Heritage Support Group:

https://localsupport.parkinsons.org.uk/activity/black-asian-arab-and-mixed-heritage-support-group-meeting

Listen to Will I Die from Parkinson's:

https://www.2parkiesinapod.com/podcast/episode/1e8a6b26/will-i-die-from-parkinsons

https://ourfuturehealth.org.uk/

In this episode, we’re joined by specialist Parkinson’s nurse Becky Heslop, who recently starred in a film highlighting the vital role nurses play in supporting people living with Parkinson’s.

Becky talks us through what a Parkinson’s nurse actually does, from being a key part of your care package, to offering advice, reassurance, and hands-on treatments. We hear about some of the more practical – and sometimes challenging – aspects of her work, including giving Botox injections and helping people manage the Produodopa pump.

Please consider donating to the Nurse appeal at:

https://www.parkinsons.org.uk/donate/donate-great-care

We’ve hit a huge milestone – 50 episodes, and 2 Parkies in a Pod is celebrating in style!

In this special edition, we take you back through some of our most memorable moments:

✨ The inspiring Matt Eagles, who’s been living with Parkinson’s for more than 50 years, shares how he stays positive.

✨ Professor Tom Foltynie answers your questions at Queen Square and explains how to prepare for your consultation.

✨ From Episode 20, Canadian broadcaster Harry Forestell tells us what it was like to meet Michael J Fox.

✨ Dementia expert Rimona Weil on why she fell in love with neuroscience.

✨ The Top 10 symptoms

✨ Plus - The moments when things didn’t go quite to plan – including that fit of the giggles!

This week on 2 Parkies in a Pod, we’re joined by television producer and editor Rob Burley. Rob has worked with some of the biggest names in political journalism – from Jeremy Paxman to Andrew Marr, Laura Kuenssberg to Emily Maitlis.

Diagnosed with Parkinson’s in 2021, Rob talks openly about his journey and the challenges of balancing a demanding career with the condition. We also discuss his fascinating book, Why Is This Lying Bastard Lying to Me?, which explores the history of political interviewing and shines a light on how the toughest questions shape public life.

Send us your voice notes at [email protected]

Rob's Blog:

https://unherd.com/2025/07/you-cant-hide-parkinsons-forever/

Rob's Book:

https://open.spotify.com/show/7KLaSpzKqS5x9fKKgLFMQj?si=ef8c8e47cf804fa7&nd=1&dlsi=80ebdbbb704d4d14

https://www.amazon.co.uk/Why-This-Lying-Bastard-Searching/dp/0008542481

Balls to Parkinson's Bike Ride:

https://ballstoparkinsons.co.uk/

Parkinson's UK Brain Bank:

https://www.parkinsons.org.uk/research/parkinsons-uk-brain-bank

Parkinson's UK Walk for Parkinson's 7th Sept :

https://events.parkinsons.org.uk/event/walk-parkinsons-battersea-park/home

Walk to Cure Parkinson's 28th Sept:

https://cureparkinsons.org.uk/get-involved/walk-to-cure/

Par-Con 2025 Parkinson's UK Community Convention 24/25 Oct:

https://www.parkinsons.org.uk/get-involved/par-con

Please rate, review & subscribe if you enjoy the show.

Dave and Kuhan take you behind the scenes of the Parkinson’s UK Brain Bank at Imperial College London. They witness an incredible brain dissection led by a world-class neuropathologist — an unforgettable experience.

Have you ever wondered how you can make a real difference to Parkinson’s research? Find out how you can donate your brain to science and help unlock the mysteries of this condition.  

https://www.parkinsons.org.uk/research/parkinsons-uk-brain-bank

http://imperial.ac.uk/brain-bank

[email protected]

Find out if Kuhan’s DBS surgery has improved his tennis as the boys play their first post-surgery match….

Par-Con 2025 the Parkinson’s UK community convention, is our free, 2-day event for the Parkinson's community. Join us in-person or online for talks, activities and to connect with others. 

https://www.parkinsons.org.uk/get-involved/par-con

AMAZING THINGS 

Adam Roberts the author of The Amateur Gourmet has gone public about his Parkinson’s … 

Every Silver Lining Has a Cloud - by Adam Roberts

https://amateurgourmet.substack.com/p/every-silver-lining-has-a-cloud

Jimmy Choi American Ninja

https://www.facebook.com/share/v/1ALSbWFLiW/?mibextid=wwXIfr

And we take a moment to pay tribute to fellow Parkie and rock legend Ozzy Osbourne, whose honesty and grit continue to inspire.

[email protected]

In this powerful episode, Kuhan takes us on an intimate journey through his life-changing deep brain stimulation (DBS) operation. From the moment he arrived at the hospital, through the intense experience of surgery, to the emotional moment the device was switched on. He opens up about the challenges, the breakthroughs, and how life has transformed since the procedure. It’s an honest, moving story of resilience, hope, and the impact of modern medicine.

Watch Kuhan's moment of DBS switch on

DBS Quiet Miracle Article

⁠Parkinson's UK DBS information⁠

⁠Stay Cool USB Fan

This episode is a big one for us. Kuhan is preparing to undergo Deep Brain Stimulation, or DBS — a life-changing surgery that could help manage his Parkinson’s symptoms. Joining us is a very special guest: a member of the surgical team who’ll be operating on his brain.

Harith Akram is a Consultant Neurosurgeon at the National Hospital for Neurology and Neurosurgery at Queen Square, London.

He tells us how he escaped from Saddam Hussein's regime in Iraq, started medical school at 16 and invented the equipment that’s going to drill a hole in Kuhan‘s head!!

He also tells us what to expect when you’re having deep brain stimulation.

It’s personal, it’s powerful… it’s 2 Parkies In A Pod

Links:

Parkinson'a UK DBS information

Stay Cool USB Fan

Kuhan Hope Message

We can be Weirdos Podcast with Harith

Balance in Parkinson’s is a complicated thing but the good news is, help is on hand. We talk to expert neuro physiotherapist Laura Douglas, co-founder of Neuro Heroes and an expert in gait and balance. An informative chat, packed full of great advice to make your Parkie life a little easier.  

[email protected]

www.neuroheroes.co.uk

Neuro Heroes live classes over Zoom are for people based in the UK. People outside of the UK can follow along to these pre-recorded videos made with Parkinson's UK:

Low intensity workout with Neuro Heroes

Moderate intensity workout with Neuro Heroes

High intensity workout with Neuro Heroes

2 Parkies in a Pod Spotify playlist:

https://spotify.link/J7GX0gC40Tb 

Walk with Me by The Wells:

https://thewellsparkinsons.bandcamp.com/track/walk-with-me

An Interesting Detail by Kimberly Campanello:

https://guardianbookshop.com/an-interesting-detail-9781526680594/

Mime Over Mind by Barbara Salsberg Mathews:

https://mimeovermind.com/videos/

The boys are back after a short break. Kuhan shares his sleep secrets, Dave takes a tumble, Ryan Reynolds speaks out about his dad‘s Parkinson’s and Steph has a positive take on sleeping in separate bedrooms, plus the pain of a PIP review.

AbbVie sleep video

https://youtu.be/1S6GauUXVec?

PD nurses attend St James palace event

https://www.bbc.com/news/articles/c2lzzjgvvw1o

Cure Parkinson’s ‘Question of Time’

https://youtu.be/bSyVviLug7c

Parkinson’s UK PIP Information

https://www.parkinsons.org.uk/information-and-support/personal-independence-payment-and-adult-disability-payment

Parkinson’s UK PIP Campaign

https://www.parkinsons.org.uk/news/what-latest-disability-support-reforms-mean-people-parkinsons

Pavilion Dance South West

https://www.pdsw.org.uk/

Lee Silverman Voice Treatment

https://www.parkinsons.org.uk/information-and-support/speech-and-language-therapy

Tom Finch Fundraising

https://www.justgiving.com/page/tom-hulme-1734256927282?utm_medium=FR&utm_source=CL&utm_campaign=015

Sports Parkinson's

https://www.sportparkinsons.com/

Ryan Reynolds Hallucinations video

https://www.moretoparkinsons.com/

Parkinson’s UK Helpline 0808 800 0303

[email protected]

Sleep problems can be a major issue when you have Parkinson’s. This week we talk to Jane Alty a professor of neurology at The University of Tasmania, Australia. She’s an expert in Parkinson’s sleep disorders. Her goal is to transform the brain health of adults globally - through research to detect the critical earliest stages of degenerative brain disorders.

She also reveals whether she thinks AI will solve the Parkinson’s conundrum.

Also this week.. The boys are full of the joys of spring, Kuhan nearly gets run over, Dave does a rap

And Hamming it up…. How a piece of Donald Trump ended up in a sandwich!

Sleep & Parkinson's