PSPA Podcast

PSPA

The PSPA Podcast will provide discussions and information for people caring for someone living with rare brain diseases, PSP or CBD.

This podcast is brought to you thanks to the kind support of the Pavers Foundation in memory of Mary Youll.

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20 episodes
Updated July 10

Episodes20

Newest first

July 10 · 34 min
Preventing and Managing Falls
In this latest episode of the PSPA Podcast, we spoke with With Jade Donnelly, Specialist Physiotherapist and Ciara Baker, Clinical Specialist Neurological Practitioner on: Ways to spot changes in balance and coordination Practical steps to reduce falls Equipment that could support and more!
June 2 · 44 min
Carers Resilience
We spoke to Zubyda Azzam, who is a Psychotherapist at Rareminds, all about carers resilience. We discussed: Common challenges that families and carers face What signs to look out for when carers resilience is being stretched Lots of practical ways to help your family members and resources you can access
April 30 · 25 min
Accessing Financial Support
We spoke to Peggy Newton, PSPA Helpline and Support Services Manager, all about the different kinds of financial support that is available for people living with PSP & CBD and how the Helpline can support you.
April 9 · 49 min
Communicating with PSP & CBD
This podcast features a discussion between Helen Chapman, PSPA Communications Manager and Chloe Cripps, Speech and Language Therapist all about communicating whilst living with PSP & CBD. Chloe shared how she supports people with neurological conditions as their speech changes, the practicalities of attending an appointment, useful tips and more information around Voice Banking.
March 16 · 36 min
Brain Donation
To help bust the myth around brain donation and explain more about it, and the difference valuable donations can make, we spoke to Rory Turkmen-Smith, who works at the Parkinson’s UK Brain Bank at Imperial College, London.  
February 10 · 31 min
Driving and getting about after a diagnosis of PSP or CBD
Following a diagnosis, people commonly question how their day to day life will be affected. This can include how they might get about and whether they are still able to drive. Helpline Care Navigator, Dionne Ward, talks to us about what people should consider following a diagnosis, and help that maybe available in your community to help with transportation.
January 22 · 33 min
PSP & CBD Eye Care
Eye problems are common symptoms for people living with PSP & CBD. What are these symptoms and how can you manage them at home and with the support of your local care team. Dominic Burdon, Consultant Orthoptist joins us today to answer some of these questions and give handy hints.
Sep 2, 2025 · 37 min
The benefit of movement
In episode three of the PSPA Podcast, we talk to Laura Douglas from Neuro Heroes. Laura highlights what you might expect from any physiotherapy appointments you are referred for. And how movement, big and small, can help people who are living with PSP & CBD maintain functions and wellbeing.
Jun 10, 2025 · 34 min
Understanding support and care
In episode 2 of series 3 of the PSPA Podcast, we speak to Dr Bicky Marshall, Consultant Neurologist at Queen Elizabeth University Hospital in Glasgow. Dr Marshall helps to answer questions from the PSP & CBD community related to accessing support and care for a loved one living with the conditions, ensuring they remain at the centre of discussions and enough time is allocated to discuss everything you might want to know.
Feb 24, 2025 · 29 min
Dealing with diagnosis
In the first episode of series three of the PSPA Podcast, we speak to Anna from Rare Minds. Anna helps us to unpick the complexities of coming to terms with a diagnosis of PSP or CBD, for both the person diagnosed, and their carer. As well as looking at the different emotions you may experience, Anna also provides some insight and tips to help you understand and process your feelings.
Dec 19, 2024 · 18 min
Living with PSP
Paul Johnson shares an insight into his first PSP symptoms, his diagnosis and how his interests have changed since his diagnosis.
Aug 7, 2024 · 21 min
Episode 6: Research update with Dr Ed Jabbari
In this episode, PSPA Research Coordinator, Megan Hodgson talks to Dr Ed Jabbari. Dr Jabbari has been working in the field of PSP & CBD research since 2016, when he became the Sara Koe Research Follow. Ed talks about his different research projects, study outcomes and hopes for the future.
Jun 17, 2024 · 21 min
Episode 5: PSP & CBD Awareness Week with Rebecca Packwood and Mark Jackson
In this episode, CEO Rebecca Packwood talks to PSPA's new Director of Policy and Influencing, Mark Jackson. Mark shares what his role is and the launch of the #WeCare campaign and how people can help amplify our voice in PSP & CBD Awareness week, and beyond.
Jun 14, 2024 · 16 min
Episode 4: Becoming a PSPA volunteer with Lavonne McCormack and Sally Reynolds
PSPA Volunteer Coordinator Lavonne McCormack speaks to volunteer Sally Reynolds. Sally shares details of how she become a Support Group volunteer ten years ago. And also how she increased her volunteering support to include being a Link Volunteer.
Jan 2, 2024 · 15 min
Episode 3: PSPA's 30th Anniversary with CEO Rebecca Packwood
2024 is a milestone year for PSPA - it marks 30 years since the charity was registered. In this episode of the PSPA Podcast, CEO Rebecca Packwood shares an insight into what we have planned for this important year. Highlights of the year include: Telling 30 stories for 30 years of PSPA in our interactive timeline – new stories will be released each month. Circulating four themed editions of our magazine, PSPA Matters Enabling you to share special moments and dates via our Celebration Wall Opening the PSPA 30th Anniversary Awards nomination period Launching our 30 for 30 challenge with PSPA supporter Kelly Hooper Holding a 30th Anniversary Party in London Building the biggest Walk of Hope to date And much, much more.
Nov 30, 2023 · 22 min
Episode 2: Diagnosing PSP & CBD with Dr Boyd Ghosh
As rare diseases, we know diagnosing PSP & CBD can be difficult. In the second episode of series two of the PSPA Podcast, we talk to Dr Boyd Ghosh about how PSP & CBD are diagnosed, what the challenges can be and what he hopes are for the future to improve diagnosis of the conditions.
Nov 7, 2023 · 19 min
Episode 1: Living with CBD
In the first episode of our second series of the PSPA Podcast, we talk to Gilda who has been diagnosed with CBD. Gilda talks about her symptoms, her diagnosis and how she has adapted her home and hobbies to ensure she remains active and independent, for as long as possible. Tune into Gilda's personal experience and planning tips today!
Sep 30, 2022 · 39 min
Episode 14 - How the Helpline can help
Today we’re joined by Jules Brown, PSPA Helpline Manager to talk about the support we can offer to your and your family.
Aug 11, 2022 · 27 min
PSPA Podcast Episode 13 - Support for Young People
In our 13th episode we speak to Kathryn Embree, the PSPA volunteer who runs our Youth Support Group. Here Kathryn talks about the importance of peer support and the benefits of the group.
Jun 8, 2022 · 49 min
PSPA Podcast Episode 12 - Carers Week with Jacqui Ede
PSPA Carers Support Group facilitator, Jacqui Ede joins us as we celebrate Carers Week and our podcast being live for one year! Jacqui also shares a ten minute relaxation session with listeners at the end of the podcast.

PSPA Podcast

Preventing and Managing Falls

Carers Resilience

Accessing Financial Support

Communicating with PSP & CBD

Brain Donation

Driving and getting about after a diagnosis of PSP or CBD

PSP & CBD Eye Care

The benefit of movement

Understanding support and care

Dealing with diagnosis

Living with PSP

Episode 6: Research update with Dr Ed Jabbari

Episode 5: PSP & CBD Awareness Week with Rebecca Packwood and Mark Jackson

Episode 4: Becoming a PSPA volunteer with Lavonne McCormack and Sally Reynolds

Episode 3: PSPA's 30th Anniversary with CEO Rebecca Packwood

Episode 2: Diagnosing PSP & CBD with Dr Boyd Ghosh

Episode 1: Living with CBD

Episode 14 - How the Helpline can help

PSPA Podcast Episode 13 - Support for Young People

PSPA Podcast Episode 12 - Carers Week with Jacqui Ede