As some people are aware in 2023 my dad was diagnosed with Progressive Supranuclear Palsy (PSP) a rare neurodegenerative condition, caused by the progressive death of nerve cells in certain parts of the brain. In the UK it is estimated that around 5,000 people are living with the condition, however neurologist believe the figures could be more around 10,000. This is just an estimate as PSP is extremely hard to diagnosis correctly, with 60% of people having a misdiagnosis or taking up to 3 years to receive the correct PSP diagnosis - this is exactly what we experienced as a family.

Dad was diagnosed in 2019 with Parkinson and due to COVID, he didn’t see a neurologist till 2023, when we found out he had PSP.

Life has significantly changed for dad. Firstly starting with multiple falls, progressing to not been able to walk, communicate or swallow which now required him having 24 hour nursing care.

PSP doesn’t affect memory meaning my dad knows and understands everything going on around him, but he cannot communicate how he is feeling, his worries or if he is in pain.

There is currently no cure or treatment for this horrible disease that has taken so much away from my dad. It has been absolutely heartbreaking to watch his deterioration throughout his journey, especially over the last couple of years.

Due to the lack of knowledge and awareness of this condition I have decided to run Manchester marathon to raise awareness and funds for future research. Any donations are greatly appreciated 💙