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Personal Experiences

There are thousands of people around the UK living with PSP and CBD. You can read some of their personal experiences here.

If you would like to share your personal experience of PSP or CBD, please complete our Share your PSP or CBD experience form and email it back to

Imogen’s story

“The lack of knowledge and understanding of PSP has inspired me to pursue a career in research.”

Bradley’s story

“Since it took so long to get to the bottom of dad’s illness, he was really keen on raising awareness of PSP.”

Dawn’s story

Dawn’s dad, Noel MacCoombe,  was a really athletic and active man, having played rugby and boxed when he was younger.

Karen’s story

“We continued to live life to the full.”

Austin’s Story

Austin, 78, was something of a local hero in his native Belfast, having played rugby for Ulster and been a member of the Irish rugby squad.

Theresa’s story

Theresa, 57, spent many years volunteering with organisations including Oxfam, DIAL Kent, and her local volunteer bureau.

Mick’s Story

Mick, from Somerset, hasn’t let CBD stop him from enjoying a safari in South Africa.

Lynette’s story

Lynette, from Wokingham, explains how she copes with daily life with CBD

Chris’ story

Chris lives in Orpington, South London with his wife Margaret and was diagnosed with PSP in March 2015.

Susie’s Story

Mum’s immobility inspires physiotherapist daughter to take on 10k challenge