On the 19th September 5 weeks today Franck and myself have given ourselves the challenge of running 50km from Ham Hill to Lyme. That's a whopping 31 miles!! Training is getting there but these numerous heatwaves have not helped, still a minor hiccup compared to what people go through with PSP.

Ok so what is PSP? So many people haven't heard of it and when it crosses your path you will never forget it. It stands for Progressive Supranuclear Palsy a rare progressive neurological brain disorder and it attacks every part of you.

It affects eyes and vision, mobility, speech and swallowing. It can cause depression, anxiety, memory slowing.

Advanced stages cause severe rigidity and loss of mobility, profound impairment of speech and eye movement control. High risk of choking and inhaling food and chest infections and pneumonia.

The end of life stage takes everything you've ever had. Inability to eat or drink independently, vulnerability to severe infections and weight loss and complete loss of speech.

And because of all this the individual will need total physical care needs.

And this is where my actual second encounter with PSP arose as I had already looked after a lovely lady called Barbara who had PSP.

I was very privileged to be part of a great team and met Steve and his wife Sue probably when Steve was at mid stage diagnosis.

Steve was the most gentlest of men and never moaned or felt sorry for himself. He was always so dignified and together Steve and Sue rather than fighting PSP walked hand in hand beside it. It was a tough path to walk but they were always one step ahead of it and Steve always seemed to accept this. Everything was put in place to make Steve's life as easy and comfortable as possible and a big contribution to this was Sue's experience and expertise of being an OT for many years. Every single piece of equipment that would make Steve's life easier was put in place and gracefully accepted. The whole downstairs was completely adapted and even so this was the case it still felt like the most welcoming happy home when you walked through the front door. Steve loved music especially the Thomson Twins and also listening to Spike Milligan which he would laugh away to. Also he loved watching snooker especially his hero Ronnie O Sullivan.

We always seemed to manage to have laughter no matter how tough the day was. Steve and Sue were an incredible team with an amazing supportive family.

It was tough to watch Steve deteriorate and some days I found it so hard to walk through that front door

But this was not about me. It was about being there for Steve and Sue and it really was a privilege to be able to care for such a special, kind, brave gentle man.

This disease goes under the radar and needs desperate funding so hopefully by running this 50km we can do a little to help much needed research and care for such a debilitating cruel disease