Season's Greetings from 2 Parkies in a Pod !
Dave and Kuhan get in the festive spirit as they open the postbag and share some truly inspiring stories from the community ..including the challenges of running a nuclear power plant with Parkinson's, more remarkable DNA stories and we hear from friends.. old and new.
Plus 2 Parkies in a Pod receives its own community award !
As always - honest conversations, real lives, and a bit of festive cheer along the way…
We hope you have a wonderful Christmas and a Happy New Year!
Please rate, review and subscribe!
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Many people living with Parkinson’s struggle to talk about their diagnosis. Fear, stigma, and uncertainty can keep people silent for years. Even Michael J. Fox kept his Parkinson’s diagnosis private for almost a decade.
This week on 2 Parkies in a Pod, we meet Scott and Paul, who share powerful, deeply personal coming out stories — not just about Parkinson’s, but about identity, isolation, and finding the courage to be seen.
Paul reflects on how closely his Parkinson’s journey mirrored his experience of coming out as gay:
“I guess I dealt with Parkinson’s in the same way I dealt with realising I was gay… by not talking to anyone about it for many years"
Scott speaks honestly about living with Parkinson’s while single, gay, and without family support:
“Being single, gay, with no family support, I did feel very isolated — and there weren’t many people I could see in the community that I had anything in common with.”
In one of the episode’s most raw moments, Scott also opens up about experiencing suicidal thoughts and explains how the helplessness he felt during tests for deep brain stimulation treatment resurfaced memories of past sexual abuse. His honesty shines a light on the complex mental health challenges faced by many people with Parkinson’s — challenges that often remain unspoken.
This is a story about vulnerability, survival, and connection. A story of adversity, community and ultimately ...gratitude.
Parkinson’s and The Invisible Man (Scott’s YouTube channel)
https://www.youtube.com/@Parkinsonsandtheinvisibleman
Parkinson’s UK Mental Health
https://www.parkinsons.org.uk/information/symptoms/behavioural/mental-health
Podcast Club
https://localsupport.parkinsons.org.uk/activity/young-onset-parkinsons-online-group
LGBTQIA+ Network
https://localsupport.parkinsons.org.uk/activity/lgbtqia-network-meeting-online
DBS Network
https://forms.gle/ApDHqGaDF38n6wYa7
Join our yoga group
https://dawnwilliamsyoga.co.uk
1 in 3 living alone research insights
Par-Con 2025 mental health video
Hear Me charity
https://www.parkinsons.me/hearme
Nutrition PD
Please rate, review and subscribe to the podcast
Contact us at:
hello@2parkiesinapod.com
In this episode, we meet Lucy (not her real name), who shares her extraordinary Parkinson’s journey.
Lucy discovered she has a genetic form of Parkinson’s known as LRRK2. What started as a simple Ancestry DNA test to explore her family roots soon led to life-changing revelations — uncovering far more than she ever expected.
Before releasing this episode, we sought advice from Lucy’s counsellor, and we’ve taken every step to protect the privacy of everyone involved in this remarkable story.
If you’ve been affected by the topics discussed, or want to learn more about genetic Parkinson’s, you can contact the Parkinson’s UK Helpline for confidential advice and support:
📞 0808 800 0303
📧 hello@parkinsons.org.uk
Donor Conceived Support
https://donorconceiveduk.org.uk (peer led support)
https://www.uhliverpool.nhs.uk/services/service-finder/donor-conceived-register (national register)
EJS ACT PD Get Involved
Watch 2 Parkies at Par-Con
Neuro Heroes
https://www.neuroheroes.co.uk/
Parkinson’s Europe Work Survey
Parkinson’s UK Nurse appeal
https://www.parkinsons.org.uk/donate/donate-great-care
Neuralink
10 Tips for a Better Day
You can watch this episode at:
In this special live episode from Parkinson’s UK’s Par-Con event in Birmingham, Kuhan and Dave are joined by a buzzing audience of more than 1000 people in person and online and the incredible Laura Douglas, neuro physiotherapist and founder of Neuro Heroes.Laura shares her expert advice from getting out of bed, stretches for dystonia and tips for getting dressed.Packed with practical tips, uplifting moments, and plenty of fun, this episode will help you start and end each day feeling stronger, steadier, and more confident — no matter what.
Neuro Heroes Tips
Plus a couple of special announcements.
Subscribe to 2 Parkies in a Pod
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 hello@2parkiesinapod.com
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
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.
hello@2parkiesinapod.com
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
Parkinson's UK DBS information
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:
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.
hello@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
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
PD nurses attend St James palace event
https://www.bbc.com/news/articles/c2lzzjgvvw1o
Cure Parkinson’s ‘Question of Time’
Parkinson’s UK PIP Information
Parkinson’s UK PIP Campaign
https://www.parkinsons.org.uk/news/what-latest-disability-support-reforms-mean-people-parkinsons
Pavilion Dance South West
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
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!
In this episode we head to Scotland and the Centre for Regenerative Medicine, University of Edinburgh. We chat with Professor Tilo Kunath one of the world’s leading experts in stem cell research. The hope is that one day, implanted cells can reverse Parkinson’s. Just how close are we to that elusive cure? What’s happened to the people who’ve been given stem cells? How freezing cockroaches in his mum’s fridge kicked off his scientific career…
Getting Involved in Research
https://www.parkinsons.org.uk/research/get-involved-research
Deep Brain Stimulation
https://www.parkinsons.org.uk/information-and-support/deep-brain-stimulation
Dave’s new shoes
https://www.nike.com/gb/easyon
Amazing Things
Ozzie Osbourne / Black Sabbath mega gig
Aloha to Island living Lisa on Insta
In this episode, Dave and Kuhan explore the differences between men and women when it comes to Parkinson’s.
We hear from Clare Bale (associate director of research at Parkinson’s UK), Dr Clare Lehman (a General Practitioner who was diagnosed aged 37) and Jo Tosh (a retired nurse and star of the award winning DBS and Me series).
Together we discuss the unique challenges that women face with Parkinson's including getting diagnosed, the impact of hormonal changes and medication-related dyskinesia.
We also have a special announcement about our new partnership with Parkinson's UK.
People do amazing things:
The Parkinson’s raver
https://www.bbc.co.uk/news/articles/cp3j988jkwno
Judo for Parkinson's
https://www.bbc.co.uk/news/articles/czepkeexw4xo
Walk for Parkinson's 2025 is now open for sign ups!
https://events.parkinsons.org.uk/event/walk-parkinsons/home
A letter to my newly diagnosed Parkinson’s self
We’ve reached a milestone on the podcast, our 40th episode, so we thought we’d celebrate with you the listeners. We dip into the mail bag and share some of your Parkinson’s stories.
Plus Dave walks into a tree, Kuhan reveals who inspired him to stay out until one in the morning dancing and drinking tequila and hear about a real life STAR of the community - a young woman who travelled half way around the world to share her experiences of the condition.
Brisk walking tunes 120 Beats Per minute
Dave Clark Independent article
AMAZING THINGS
Springsteen raises $ for Parkinson’s
Why 2 parkies in a pod loves Leah Forster
We take a trip to Parkinson’s UK’s new office, learn about their recent brand refresh and talk to the boss Caroline Rassell. She gives us the low down on all things Parkinson’s UK, shares her plans for the year ahead and reveals how Parkinson’s has got more personal for her recently.
Parkinson UK helpline on 0808 800 0303
https://www.parkinsons.org.uk/
https://www.parkinsons.org.uk/get-involved
https://techguide.parkinsons.org.uk/
People With Do Amazing Things
Michael J Fox award
https://www.bbc.co.uk/news/videos/c2dx6gd0k66o
Kayaking scientist Guillaume Brachet …
https://parkinsonseurope.org/2024/12/13/person-with-parkinsons-is-developing-new-drug-
The Parky Blinders - Boxercise classes
In this festive episode we talk to illustrator, mime artist and educator Barbara Salsberg Mathews @SalsbergMathews She’s the perfect person to put you in a great mood for 2025. Barbara has created and illustrated an amazing book about What Parkinson’s Feels Like' with contributions from the Parkinson’s community around the globe.
What Parkinson's Feels Like (free ebook)
What Parkinson's Feels Like (Amazon)
Doing Amazing things ..
The story of one man and his dog
Michael J. Fox CNN Heroes Legacy Award
Larry Gifford honored with King Charles III Coronation Medal — PD Avengers
Meet the amazing Joy Milne who has the nose to diagnose Parkinson’s.
She first noticed the smell of Parkinson's on her husband Les. Years later a chance encounter made her realise that she could smell Parkinson’s on other people too.
Find out how her superpowers have changed the face of diagnosis, how scientists are using this amazing discovery and what Parkinson’s smells like.
Plus joy tells us the famous t shirt story about how the nose really did diagnose…
The Woman who can smell Parkinson’s BBC Documentary
Audrey’s 2025 Calendar: Dawn Diaries from Orford Quay