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Description
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.
This podcast is brought to you thanks to the kind support of the Pavers Foundation in memory of Mary Youll.
24 Episodes
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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.
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.
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.
Paul Johnson shares an insight into his first PSP symptoms, his diagnosis and how his interests have changed since his diagnosis.
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.
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.
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!
Today we’re joined by Jules Brown, PSPA Helpline Manager to talk about the support we can offer to your and your family.
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.
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.
In this episode we talk to Scott Smith about the inspiration behind his Ed’s Lace Awareness campaign and how he feels about it relaunching in 2022.
In this episode we speak to PSPA’s Director of Engagement, Carol Amirghiasvand, about PSPA’s new carers support groups. PSPA Volunteer Caroline Woodcock also joins us to speak about how her granny inspired her to volunteer for PSPA and host carer pamper sessions.
Katy Butterill joins us for this episode to share why she chose to take on a walking challenge in honour of her mum, who is living with PSP.
Ewan Phillips joins us to share his experience of Advance Care Planning with her mum, who was living with a diagnosis of PSP.
OT Julie Cummins joins us for the seventh episode of the PSP podcast to advise about making adaptations in your home. Julie draws from her experience as an OT but also from her personal experience of PSP too.
Samanta and Chris join us to chat about their experience of voice banking with SpeakUnique.
In this episode we chat to Sue Wilsea who shares details about her husband Mike, his PSP diagnosis and how they explained the condition to their friends and family.
In our second PSPA Podcast we talk to Julia Tickridge. Julia shares details of caring for her husband Laurie who is living with a diagnosis of evolving PSP. Julia also talks about where she has found support in her role as a carer.
Find out more about Beth’s personal experience of PSP and how support from the Pavers Foundation for the podcast came about.
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.
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