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

https://denpruexeter.nihr.ac.uk/wp-content/uploads/2025/05/DeNPRU-Exeter_living-alone-with-a-progressive-neurological-condition_policy-brief.pdf

Par-Con 2025 mental health video

https://www.youtube.com/watch?v=r-PwOYRSe4Q&list=PL1ixQpbHed3Y9_jS-WuZePcFa7N_O7aNi&index=7&pp=iAQB0gcJCSkKAYcqIYzv

Hear Me charity

https://www.parkinsons.me/hearme

Nutrition PD

http://prksn.uk/47RAlmu

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

https://www.ejsactpd.com/

Watch 2 Parkies at Par-Con

https://youtu.be/H7IFQfcp2os

Neuro Heroes

https://www.neuroheroes.co.uk/

Parkinson’s Europe Work Survey

https://parkinsonseurope.org/parkinsonslife/careers-cut-short-financial-loss-and-fear-of-stigma-new-survey-working-with-parkinsons/

Parkinson’s UK Nurse appeal

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

Neuralink

https://www.ucl.ac.uk/news/2025/oct/first-uk-patient-uses-thought-control-computer-hours-after-neuralink-implant

hello@2parkiesinapod.com

10 Tips for a Better Day

You can watch this episode at:

https://youtu.be/H7IFQfcp2os

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

brainbank@imperial.ac.uk

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