This year I will be running the marathon for PSPA, the charity provides support and information for people living with PSP and CBD. It has a really special meaning to me and my family as my Dad was diagnosed with Progressive Supranuclear Palsy (PSP) in the summer of 2018. In short PSP is a progressive neurological condition where a protein builds up around nerve endings in your brain, this leads to a slow progressive chronic disease that can affect everything from balance, speech, vision, movement and swallowing.  The way I always describe it to people is that it is a severe version of Parkinson’s sprinkled with a little bit of Multiple Sclerosis and Alzheimer’s.

Little is known about PSP, there is no cure, no treatment and it is often misdiagnosed. From a personal perspective it is a difficult one to comprehend, with no treatment, PSP can often be a lonely and dark place for those suffering from it.  Each person has a unique experience, where symptoms vary in severity and chronology, making it difficult to prepare for the next step. My Dad’s symptoms started with a constant dizziness, he spent a number of years going for check-ups with specialist who scratched their heads about the cause until he was finally diagnosed in June 2018. Over the past few years he has slowly worsened. I have always looked up to my Dad so much, he was always doing something, the king of faffing, constantly fixing, cooking and shouting and his love of adventure has certainly rubbed off on me, he cycled everywhere (rain, wind and snow), sailed and skied always with huge sense of adventure and passion. However, PSP has taken all that away, while Dad carries on and enjoys a slower pace of life, mainly through reading and shit jokes, I know everyday is more and more of a challenge for him.

PSPA is really important to the 4,000 people estimated to be living with PSP in the UK. Although raising money is not going to find a silver bullet anytime soon, critically it will raise awareness about this rare disease, provide support and knowledge to sufferers and their support networks as well as contributing to a much needed and underfunded area of research. Whilst research won’t help my Dad it will provide hope for others that those they love will not be robbed of their faculties by this cruel disease. The last year or so has been extremely difficult for everyone and small charities especially, who worked through the pandemic need as much support as possible. I would really appreciate any pounds, pennies, euros, buttons and stamps you can afford to donate. My target is £2,000 but personally I would like to be able to double that. Save yourself a night at the pub, you’ll only end up getting tracked and traced and give me a tenner!

You can find out more about PSP here: https://pspassociation.org.uk/information-and-support/what-is-psp/