I was not going to say anything more about today, 23rd August 2025. The twelfth anniversary of my (initial) diagnosis with Multiple Sclerosis. But it really has turned out to be a Celebration Day! I will explain why, hopefully showing why standing still can be positive progress.
Results Day
I had mentioned in my previous post that I was due an MRI to review the status of lesions and understand where Ocrevus was having the desired impact. That MRI happened yesterday, 22nd August and I was able to see the results the same day. There is a lot information contained in a relatively short report but it can be summarised quite simply.
No new lesions. No lesion growth. Stability. Literally, this is just what the doctor ordered. Or neurologist. Doesn’t matter and it’s celebration time for me at least.
Caveats
Before getting too delirious, some caveats. This still needs a review from my (new) neurologist in September. The MRI report also focuses on T2 lesions, the white matter spots that are typical in MS. There was no mention this time of T1, or ‘black hole’ lesions. Those represent areas of more permanent brain tissue damage and loss, not just temporary inflammation, and they are still there. The main purpose of this MRI, though, is to check whether there are any new T2 lesions, since new growth can eventually develop into T1 lesions. This is what Ocrevus is working to stop and, on initial review, it looks like this is the case.
Celebration Day!
Enough caveats. Enough technical stuff. Today, the anniversary of something that, let’s face it, is not so nice turned out to be nicely normal! Previously, Anniversary Day was always a day of fighting back, resistance via a huge bike ride. This started in 2018 with an epic 214 kilometre ride. Today? Well, 35 kilometres with a lot of stops. I was happy with it and did the usual thing and named it after a song. ‘Celebration Day’ by Led Zeppelin seemed appropriate and also quite good!
After that? Cooking, relaxing, watching cycling on TV (Renewi Tour and Tour of Spain) and indulging one of my new pastimes with a bit of drawing. Currently learning about Negative Space on the latter. I would explain that but it is a whole other blogpost! Obviously I wrote this as well, keeping nice and short. Finish the day with a barbecue which hasn’t happened yet so, lazily, the pictures of barbecued mushrooms below are from last week’s efforts!
Celebration day is just normal, no fuss. No giant cycling expedition. Just, relaxed. Happy. Finished with a barbecue. Relaxed.
Perspective
I do need to keep a sense of perspective. What this hopefully means is stability, perhaps the influence of Ocrevus. It does not mean I am getting better because that is not going to happen. What I hope it means is a base to build on. The clock will not be rewound and all the issues I have are not going away. Unfortunate but there it is. I can’t pretend that I accept that. Still that stubbornness that I need to work. This conclusion is mine and needs review and comment from my neurologist and MS nurse, as well as my physio.
The Joy of Standing Still
But it is also something to grab hold of. It can get so tiresome to list the setbacks. Necessary but also joyless. Stability means I can hopefully keep building with my physio, improve my walking and balance. It also means I can carry on my wider life. The active hobbies, such as cycling and going to concerts or museums. These keep me going. Also the new pastimes like drawing, mentioned above, and painting. The creative stuff that the right hemisphere of the brain can handle. Keep living.
After twelve years I need to learn that some things are gone and I am going to be sad about that. Today is not a day to be sad. Standing still is actually progress and I will take it.
Certainly cause for a beer (or knowing you, wine) with the barbecue
So many thanks: to medical science for creating breakthroughs, for your Neurologists and therapists for helping you to stabilise and open new directions for your energy, for you friends, who I hear about and who are so important to you, and to you, who would not accept decline without a battle, even though it was a one sided battle,
But now that battlefield has levelled off a little, and you can dare dream of, maybe, a slightly different future.
But your post is full of honesty and optimism and that alone is worth celebrating. So I hope you enjoyed the BBQ, even if you cheated with the photo.
You are an inspiration Steve, for what you have achieved. And what you have achieved was always down to your own personal strength, in all its guises, but also always with the love and support of your partner and wife Petra alongside.
Quite a dynamic duo.
Good luck Steve