As  some of you may know I was diagnosed with Ocular Myasthenia in 2018, which is a rare muscle wasting disease affecting my face. It has given me double vision, which is currently under control through a combination of steroids and a prism fitted to my glasses. I am raising money for Muscular Dystrophy who are carrying out research into improved treatments for this condition.

Our team, Myasthenia Who? plan to carry out our Santa Walk on Saturday 5th  December, as lockdown will have finished on the 3rd December, rather than walk on the 1st December when I understand the majority of the Santas will be running.

We plan to start at Westminster and get as many photos of us
as possible standing outside London's iconic buildings. Houses of
Parliament, Westminster Abbey, RICS HQ, Buckingham Place, Trafalgar Square etc. These photos will be used for personal Christmas cards to friends and family.

I also plan to send them to the Intensive Care Units who looked after me in 2020 following me contracting Covid-19. The utterly amazing staff there never wanted thanks for what they did and in any case, I ran out of “thank you's” after about the 200th one. All the staff wanted in return was to know that I was able to enjoy the life they gave back to me. The Santa Walk has given me a golden opportunity to do just that and say thank you in a way that is more than mere words. They asked for it. They're going to get it. 

In the afternoon by way of a rest from our exertions we hope to have
Afternoon Festive tea at Fortnum and Masons (Having heard my story they have confirmed we will be allowed to take tea still in Santa gear.) Again, a photo opportunity. 

In the early evening we plan go to Canary Wharf to see the Christmas
lights there. We went last year and we thought it was excellent. We are
looking forward to getting photos of Santa silhouettes against the
lights.  

My reasons for doing the walk are several. In addition to the Myasthenia I contracted Covid-19 in March 2020, which attacked my  lungs, necessitating a tracheotomy and being kept alive by a ventilator. I spent 2 months in intensive care and 25 days in a coma, complete with hallucinations of multiple forms of terrible torture. My heart rhythms went out of sync and I had stage 2 kidney failure. Why I did not die I do not know. A nurse later, tearfully said, that of all the patients she looked after I was the only one to make it.

My muscles wasted away whilst in the coma and I found I was unable to move when I came out of it. I have had to learn to walk all over again. The steroid treatment used made me diabetic. The tracheotomy meant I could not speak and left me with swallowing problems making it too dangerous to eat food, so I was fitted with a PEG (stomach tube through which my food is fed by syringe).  

I was readmitted into intensive care and my life saved for a second time in September 2020 when I caught Pneumonia. My treatment involved being given another Tracheotomy and put on another ventilator. I was discharged from intensive care in October. The team and I hope to use the Santa Run as motivation to get fit and I hope sufficiently so that I can return to work in the New Year. Oh yes, and it just might be good fun as well.  

The photos I want to take will not just be a picture of a man dressed in a Santa suit stood beside a London landmark but a way of showing my depth of appreciation for what the medical staff have done for me. When they see those photos, they will remember just how ill I was and the journey I will have had to take in order to be in the photo. I hope that those amazing people will feel some job satisfaction and think that the  12 hour, back breaking shifts, standing on their feet, monitoring and recording my vital signs for hours on end and wiping my bum was worth it. I have been searching for a way to say thank you and I believe the Santa walk is going to do it for me.  

A  further reason for doing the walk is a little darker. Whilst in hospital you are surrounded by equally seriously ill patients.  A number of those patients were unable to cope with the treatment they were given and they gave up the fight. If there was time the families made a final visit and the curtains were drawn for the last time. Watching these harrowing moments unfold sorely tests your own resolve to continue the fight. I would like to give patients images to cling to that will help them survive their darkest moments of despair. There are current sufferers of Covid who need that support. They are lying in intensive care wards, and who, like me, find themselves unable to move, unable to breath and unable to speak. It's important they have the reassurance that it won't always be like that. Given time they too will be celebrating Christmas, by running around in a Santa suit, dining out at Fortnum and Masons and marveling at Christmas lights.

Finally, my main reason for doing this is because thanks to the help and support that surrounds me from my wife, family, friends, colleagues and all the marvelous medical staff, I can. Many thanks to all of you too.

As an alternative to supporting Muscular Dystrophy, should you wish to support the Intensive Care teams at the two hospitals who saved me, their justgiving Covid appeal pages are below. (You will need to copy and paste them into your browser or alternatively just go to their main hospital websites.)

Croydon University Hospital:

https://www.justgiving.com/crowdfunding/croydoncovid19

St Georges University Hospital, Tooting

https://www.justgiving.com/campaign/thankyouappeal

P.S. Lets hope you never get to meet them. But, if you do, stay calm you are in safe hands. Trust me. I should know.