PSPA Podcast: Recent Episodes
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.
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.
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.
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 fourth episode we talking about caring for a parent. Claire Wells joins us to share her experience of her mum’s CBD diagnosis, her care routine with her mum and gaining Essential Care Giver status after her mum moved into a care home.
In our third episode we talk about delayed diagnosis. Denise Hunt and Navin Sewak share their experiences of their mums receiving a delayed diagnosis, the impact this had on the family and the care they received. They also share why raising awareness is so important.
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.