There could be up to 10,000 people in the UK living with PSP & CBD. Each person has their own story to tell. Stories of the first signs of the conditions, diagnosis journeys, symptom progression, hobbies found or lost, and planning ahead.
Sharing and reading similar experiences people are living, can help you to feel less alone. Although your stories may differ in some ways, there will be elements that are all too familiar.
By sharing peoples’ different experiences, we aim to aid understanding of the conditions, not only for those of you living with the conditions, but for family and friends, and healthcare professionals too.
To aid understanding of PSP & CBD and help create a community, we’ve gathered a range of experiences you can read below.
WRITTEN EXPERIENCES
Following a misdiagnosis of Vertigo Migrainosus, Lisa was finally told she had Corticobasal Degeneration. Although initially reluctant to accept the diagnosis, Lisa talks to the cast of the Movers and Shakers Podcast, how despite the changes she’s making, she still lives life to the fullest.
It was a shock when Graham was diagnosed with PSP in January 2025 after living a healthy and active lifestyle for many years. Once the shock subsided, Graham and his wife, Ruth, set about preparing for the future and upholding relationships to keep them busy and positive.
VIDEO EXPERIENCES
PODCAST EXPERIENCES
HELP SUPPORT OUR COMMUNITY
Help support other families living with PSP & CBD. Share your own personal experience of PSP or CBD to help support other here.
To share your experience, please complete our Share your PSP or CBD experience form and email it back to [email protected]
