2 Parkies in a Pod: a Parkinson's Podcast

In this special live video episode Dave and Kuhan chat to one of the world’s leading Parkinson’s experts, Bas Bloem, about living well with the condition. 

We talk about everything from exercise to cannabis, dystonia to diet and how some people get “chemical creative”  when using Parkinson’s medication. Plus the audience tell us what activities make them feel like they don’t have Parkinson’s.

This podcast was recorded live in front of a large audience at Parkinson UK’s Parcon conference at the Royal Armouries Museum in Leeds.

We hope you enjoy!

For the second year running Dave and Kuhan join a Walk for Parkinson's at London's Battersea Park, hosted by Parkinson's UK.

Along the way they hear from Geoff, Ruth, Matt and his lovely family about diagnosis, the importance of exercise and tips for living well with Parkinson's. They also bump into volunteer steward Tara who tells them about her promising work in gene therapy.

Dave has his annual neurologist appointment, tells us about his new Parkinson's pants (!) and rummaging around TK Maxx.

Kuhan shares his secret for managing dystonia pain, explains his chemical rollercoaster and comes up with a new jingle for the podcast!

Show links

www.2parkiesinapod.com

[email protected]

@DaveClarkTV

@morethanatremor (Kuhan)

Walk for Parkinson’s (UK)

Cure Parkinson’s October Walking Challenge

BBC Miracle Cure Documentary

Chefs Pants

Beech band

Spotlight

Bradford Neuro Rehab

Sign up for Parcon 2024

The boys are back after a summer break. Find out what happened when Kuhan went  “Med free” for the first time in 11 years as he contemplates major brain surgery.

Dave talks about the challenges of a long haul flight to Vietnam, getting caught in a typhoon and whether you should celebrate your birthday!

This week the 2 Parkie’s are joined by Nicola Wydenbach, a classically trained and experienced vocal coach. In 2014, she started working with people living with Parkinson's using singing as tool to help address some of the symptoms. Clinical studies have shown that regular singing can improve vocal volume/quality and breathing issues.

Singing Links

http://www.nicolawydenbach.com  

http://www.medising.co.uk

Online Sessions (Friday 12.30 twice a month)

Singing app

Kings College London session (Tuesday 11.30 twice a month)

Trinity Laban session (Friday 10.30 twice a month)

People With Parkinson’s Do Amazing Things

Poets with Parkinson’s

Parkinson's comic book

Charlie’s at the Cairns Cup (golf)

Gary’s challenges

Peckham to Penzance for Parkinson’s

Register for Parcon 2024

Organised by Parkinson's UK, Par-Con is the free 2-day in-person and online event for the Parkinson's community to hear from expert speakers, connect with others and learn more about living well with Parkinson's

https://www.parkinsons.org.uk/research/par-con-2024

This week we speak to retired PE teacher, Christine Stanley. Christine has always loved being active and despite being diagnosed with cancer and then Parkinson's she hasn't lost her passion for life. She's recently become a Nordic walking instructor and credits it with giving her a sense of hope. Christine shares her tips on positivity and battling against the odds.

Hosts

@DaveClarkTV

@morethanatremor (Kuhan)

Guests

@Stanner96187706 (Christine)

Links

Man uses sculpting as therapy for Parkinson’s

Jagdeep's Annapurna Trek fundraising

British Nordic Walking

Parkinson's Rugby article

DBS couple

Decathlon Nordic walking poles

This week the boys enter the world of dance! Not the opulent, spray tanned, sequin clad Strictly, but the life changing benefits of the dance for Parkie’s.

We chat  to Helen Gould who’s just been awarded an MBE for "charitable services to people with Parkinson’s"! 

Helen is the co-founder of LPM Dance, which has developed the transformational Neuro-Moves programme to help people with Parkinson’s.

We also chat about how lessons from Bruce Springsteen can improve your Parkinson’s.

Kuhan says goodbye to his Parkinson’s nurse and we talk about the mental impact of getting a blue badge..

Show Links

https://lpmdance.com/

Neuro-Moves Rossendale- Mondays 2pm-3.15pm

Neuro-Moves Preston- Wednesday 2pm-3.15pm

Neuro-Moves online- Thursday 12.15-13.15pm

Booking link: https://lpmdance.com/classes
Contact Helen at [email protected] for more information

Colin Wells - Walking for Parkinson’s

Alex Echo - One Wave At A Time

Ellie Finch - @PdMama

Eirwen - Sparky Samba

Are you struggling to get yourself heard because your voice is quiet, mumbled or you just cant get the words out?

Are your meds getting stuck in your throat?

Do you dribble or have a dry mouth?

We may be able to help!

This week the boys catch up with Tim Grover, consultant speech therapist in the movement disorders department at University College London.

He tells us why people with Parkinson’s suffer speech problems, offer some tips on swallowing and explains the right time to seek specialist help.

More information can be found on the Parkinson's UK website:

Speech & Communication problems in Parkinson's

Eating, Swallowing & Saliva control in Parkinson's

We also reflect on the impact of our last episode about life expectancy with Parkinson’s.

And doing AMAZING things this week .. A Parkie swimming the channel, the Premier League referee going public about his diagnosis, and a Parkie taking part in the 2024 Olympics.

We hope you enjoy it…

This week we talk about the “The Elephant in the room“ - mortality rates amongst people with Parkinson’s. Our special guest is Professor Bas Bloem, one of the world’s leading Parkinson’s experts. Bas has written a paper on the subject of life expectancy with the condition.

In recognition of his outstanding work in the field of Parkinson’s, the professor has recently been knighted in his native Netherlands. He’s one of the most engaging and eloquent speakers in the Parkie world.

https://www.parkinsonnet.com/about-parkinsonnet/our-team/

Please don’t be scared to listen to this episode, we also talk about how to stay strong for long with the condition using exercise, diet and a positive mindset.

Also in 'People with Parkinson's Do Amazing Things' we feature Sean Stillman's BBC radio documentary 'Parkinson's and Me' where he reflects on his condition and his life since his diagnosis.

And Dave reflects on his day out at the Cure Parkinson's Cup

https://www.instagram.com/babbelbloem/

@basbloem (Bas Bloem)

@morethanatremor (Kuhan)

@DaveClarkTV

Joining Dave & Kuhan for a game of Fact or Fiction are Claire & Simon from Parkinson’s UK who help dispel some of the common myths about Parkinson’s.

Show links

Go to 2parkiesinapod.com or reach out to us on social media 

email us at [email protected]

Parkinson’s UK Helpline 0808 800 0303

Parkinson’s UK Research Network

Parkinson’s UK Become a Member

Parkinson’s UK Information Resources Catalogue

Parkinson’s UK World Parkinson’s Day

Economist Article

Association of British Neurologists Workforce Survey

Parkinson’s Diagnosis stats

Dept of Work & Pensions Benefits Data Portal

NHS Workforce Statistics

Free Gym Membership: 

https://www.everyoneactive.com/promotion/parkinsons/

[email protected]

Where to send your Parky smells: https://www.medicaldetectiondogs.org.uk/neurological-diseases/

In this episode Kuhan gets his tremor wired for sound, taking part in a ground breaking research study at University College London. The team created 5 unique songs from the tremors of 5 unique people with Parkinson’s. The album ‘Tremors vs Tremors’ is available to listen to on Spotify, Apple Music & Amazon… there’s even a limited edition vinyl record. All royalities are being donated to Parkinson’s UK. We’re joined by the man behind the project Dr Christian Lambert and two of the other study participants, Clare and Stephanie.

Tremors vs Tremors

https://tremorsvstremors.com/

Listen on Spotify https://open.spotify.com/album/5Q514xQ7lfQPT2s6GpT5jm?si=z-OMxr9IRYaSzWoIVrdQHA

Listen on Apple https://music.apple.com/us/album/tremors-vs-tremors-ep/1733686264

Listen on Amazon https://music.amazon.de/albums/B0CWS4RWBV?marketplaceId=A1PA6795UKMFR9&musicTerritory=DE&ref=dm_sh_RoHkhmu4xjztd3igINdcA2XcY

UCL movement disorder https://www.ucl.ac.uk/ion/research/research-centres/movement-disorders-centre/research

Parkinsons UK Research https://www.parkinsons.org.uk/research/get-involved-research

Del Amitri Parkinson’s documentary https://www.bbc.co.uk/programmes/m001x49y

Kuhan’ Blog they made a song from my tremor https://medium.com/@kuhan4/they-made-a-song-from-my-tremor-fefe7011d863

In this episode, we explore grooming and self-care.

There’s an old saying..

No matter how you feel

Get up

Dress up

Show up

Never give up

Shafaq @Dr_SF_Hussain⁠ a dentist with Parkinson’s shares her tips on mouth and tooth care

Anne Marie Booth @annieconmonkey talks ditching killer heels, Dr Martyn’s, hair and nail care.

Joe Gregory @JoeGregory100 tells us about slip on brogues and picking up a fashion bargain.

Plus doing amazing this week…

Richard Dunning, The shakey photographer @Richardpud1977

The cardigan wearing guitar playing Andrew Wright from Nottingham… @apwright

@Peacefultaino  56 year old Puerto Rican man with Parkinson’s pulling off some killer dance moves..

Stylish reading glasses at reasonable prices …

https://www.izipizi.com/ww_en

Comfortable, stylish gym, leisure clothing (pricey, but lovely)

https://vuoriclothing.co.uk

Parkinson's UK Mouth and Dental issues