Stuart Sives Having been diagnosed with ocular myasthenia gravis in February of this year, it was to say the least a shock to the system. I had never heard of this in any shape or form, and it came from absolutely nowhere. Going back to the day it happened, I remember I had been on a week’s holiday in Fife which is about a 90-minute drive from home. This particular morning I faced one-off-proper-horrible Scottish wind and rain, where the water was pooling on the roads and the window wipers were in full speed for the entire journey. When I arrived home, I emptied my car. My wife had made lunch as I was heading out to the Scotland v England rugby match. I left home 90 minutes later and got no more than 30 yards down the road when everything became slightly blurred - number plates on cars were pointing up at an angle and I couldn’t see properly. This was a scary moment. I tried to walk it off (not sure now how that was going to work but there we go.) I went to the game and watched it through one eye, but it was not ideal. In the morning I went to the local optician who kindly ran some tests, and after a short time gave me a letter for the Eye Pavilion in Edinburgh where I was treated very quickly with a series of tests including bloods. That night was the first time I was told that all signs look like myasthenia, which was a new word. I just nodded and thought, oh well let’s get on with it. When the results were confirmed, I was then seen by a neurologist who was happy that it was purely ocular. Again, I thought, ok let’s deal with this. Little did I know on my next appointment that I would be told there is no real cure and it can only be managed through medication, which at the time of writing I am on 20 different tablets a day. So life then changed for me and I decided to attack this by really trying to get myself back up and running. Initially this was a real low blow and I’m not scared to admit it played havoc with my emotions. Mentally it was tough, and still is from time to time, but I’m getting to grips with it as the weeks and months go on. When I was advised by my consultant to look at myaware, it was a step in the right direction. Myaware was loaded with useful information and there was an opportunity to join a Zoom call with fellow sufferers. This was a shot in the arm to talk with and listen to others who had a similar or more progressive type of myasthenia - the struggles they faced and how they deal with it. It was also well organised by myaware’s National Support Co-ordinator and Benefits and Welfare Advisor. They were both very informative and offered loads of help and advice. I have also had a one-to-one with myaware’s Benefits and Welfare Advisor about Personal Independence Payments forms and the DVLA, about which he is very much the expert. These sessions gave me a renewed vigour to try and do something and get the word out there regarding myasthenia, and that’s what I have done. I have had meaningful discussions in my golf club and there is now plenty of information on all noticeboards and in the pro shop where it’s visible to all. I even put some leaflets in beside the magazines while on a plane flying to Greece. I shall continue to look for opportunities locally to promote awareness about myasthenia in the hope that the word can spread.