09-05-2025
Why Wrexham family have donated man's brain to research
Peter Taylor was diagnosed with overlapping Progressive Supranuclear Palsy (PSP) and Corticobasal Degeneration (CBD) after years of experiencing unexplained symptoms such as forgetfulness and muscle stiffness – which led to a foot becoming claw like.
Both conditions are terminal – with no treatment to slow the progression and no cure available.
That is why, after all the tests, appointments and chasing Mr Taylor's family experienced, they were keen to raise funds in his name, while also aiding research by donating his brain after he died last year.
His partner Pat, along with children Katie, Leisa, Anna and Tim have been inspired to donate their father's brain in recognition of the challenges the diseases have posed.
Katie says she noticed changes developing in her dad, Peter, over around a year. The changes included incontinence, forgetfulness and a foot that had turned in on itself to be almost claw like.
She: 'Dad was generally fit and well throughout life. He was very active, playing football and squash regularly, and cycling. I started to notice a variety of subtle changes stacking up. The final straw, which triggered me to contact Dad's GP, was when I saw him without socks one day – all toes on the left foot were contracted like a claw.
'I spent weeks chasing the GP for answers. Eventually, the GP thought Dad could have Parkinson's disease and referred him to the local Neurology Team.
"Straight away, the Neurologist suspected a diagnosis of Corticobasal Degeneration, overlapping with traits of Progressive Supranuclear Palsy (PSP). Both suspicions were confirmed following a later brain scan at Walton Hospital.
"This diagnosis was devastating for us all. It was very difficult to comprehend what it all meant, and what the future would hold'
Due to a lack of awareness and understanding of Corticobasal Degeneration, Katie wasn't sure what support Dad was entitled to, so ended up ringing around different local professionals for help.
She added: 'I chased everything up myself. I found a neurology nurse specialist, district nurses, physio, OT, dietitian, hospice. I just called and asked what these people could do, then pestered the GP to refer accordingly, and I didn't stop pestering them until they had! It was frustrating and exhausting.'
Pat and Peter Taylor. (Image: PSPA)
As a result of the difficulties Peter and the family experienced during his illness, Katie is keen to raise awareness of Corticobasal Degeneration (CBD), and Progressive Supranuclear Palsy (PSP).
This included the decision by the family to offer the ultimate gift of donating Peter's brain to aid research into the condition.
Katie said: 'Sadly, we lost Dad in August 2024, just three years after his diagnosis. His passing was thankfully quick and very peaceful. Dad's brain is now stored in Manchester Brain Bank, it will be used to help advance research both in the UK and overseas.
"This gave us as a family something positive to focus on after all the challenges we had faced during Dad's illness. We also set up an In-Memory JustGiving page for Dad with proceeds going to PSPA.'
If you would like to support research into Corticobasal Degeneration and Progressive Supranuclear Palsy, like Peters' family have, you can learn more about PSPA's Understood Appeal at:
The Understood Appeal aims to raise £2 million to help progress research into Corticobasal Degeneration and PSP. In particular, the charity wants to fund research which will help to unlock quick and accurate diagnosis, immediate treatment and consistent care.
MORE NEWS
PSP and CBD are two rare neuro-degenerative diseases.
They are caused by the loss of neurons in certain parts of the brain. Over time, this leads to difficulties with balance, mobility, speech, vision, swallowing and cognition.
Both conditions are life limiting. There is no treatment and no cure.
Currently, around 60 per cent of people living with either disease, are initially misdiagnosed with other conditions including Parkinson's, stroke and depression.
PSPA is the only UK charity dedicated to creating a better future for every affected by PSP and CBD.
