My Story for the MS Society
I recently had a Zoom meeting with Stuart Milne, the press and PR officer for the MS Society Scotland. Stuart had discovered this here blog and was interested in a chat to find out more about my story. Here is a transcript, with a few additional comments and clarifications in square brackets. Be sure to visit the MS Society Scotland Instagram account to see more photos of my story.
Scott was diagnosed with MS in 2018.
I was about two weeks away from starting a new job and in the weeks before experiencing symptoms. I felt fine, I was running and doing martial arts training. Then I woke up on a Saturday morning and my balance just felt ‘off’.
The room wasn’t spinning or anything, but my legs didn’t feel secure under me [I’ve always found it hard to describe the initial symptoms, not sure I’ve quite captured it].
I had already made a doctor appointment for something totally unrelated on the Tuesday [a pesky sore throat that wouldn’t shift. That would be the least of my issues!] so I went to that expecting them to say something like I’d injured my back as I’d had no notion of symptoms prior to this.
To the Hospital
I was sent with a letter to the hospital and initially there was a suggestion that I had suffered a stroke because I was struggling to walk, almost dragging of my left leg behind me [this was a terrifying thought at the time].
I had many checks over five weeks in hospital to determine if it was a stroke, a brain tumour or even Lyme disease. Then, after about three weeks [as an in-patient], the possibility of it being an ‘unusual presentation’ of MS was raised [of all the things I could pick to be unique!].
When MS entered the conversation, I was floored. It wasn’t something I’d given any thought to whatsoever. I’d gone from a position where I was healthy, training for half marathons [about two months away from the Great North Run and three from the Great Scottish Run] and generally in a very good place in life to being told I had this condition and it felt like the bottom had fallen out of my world.
To use one of my favourite phrases, it hit me like a sack of wet hammers [I love this phrase, but whether wet hammers hurt any more or less than dry hammers is unknown].
Getting Back to Exercise
Most of my hobbies are based around physical activity. There was an initial doubt of whether I’d be able to do any of them ever again.
However, I started back at martial arts training about three months after being in hospital and then had a break for treatment [in February 2019]. About two months after treatment, I was able to start running again which was good.
Generally, training is OK [I probably understated things here. All things considered, it’s much better than ok] but certain things do feel quite strange. Kicking with my left leg, for example, is an odd feeling. It’s one of the things I notice on a day-to-day basis [the tingling feeling in my left leg and back is the main, most noticeable symptom of my MS so far].
It’s an odd dull sensation, like wearing a welly boot, and it feels like my movements with that leg are slower [I probably should try kicking with a welly boot sometime to see if this analogy is accurate].
The martial art I do [Shoto Budo] has its roots in karate and has elements of grappling and wrestling as well. It’s a mix of punching, kicking, sparring, wrestling and grappling.
I started in 2007 and I think it was maybe my version of a midlife crisis [probably safer than buying a motorbike]! I’ve been training a few times a week since then and I got my first dan black belt four years ago [hard to believe – it simultaneously feels like yesterday and a lifetime ago].
I help run the club with some of the other black belts and we run lessons and training for other members and the junior section – we have 35 adults and about 60 juniors [newcomers are always welcome].
The things you see in karate movies with guys doing ‘dance moves’ – these sequences are called kata and it is a form of training you can do by yourself [apologies for simplifying kata to “dance moves”. It was the best way I could think of to describe it to someone with no background knowledge of karate].
I found myself in hospital using kata as a way of testing my own balance and movement and using it as barometer of my progress [see here for a more detailed description of this process].
It’s something that I’ve kept going since then and I’ve found it’s been a useful benchmark for me to say that this has improved, that is better or that’s getting further away [in addition to training, I do a lot of kata in my kitchen].
I feel like the breathing, [especially] balance, core control and coordination has been really helpful for my recovery and, of course, there are the fitness and social aspects as well.
My Support Network
I had a lot of support from friends and family in terms of encouraging me and talking to me. I was going through this rollercoaster of meltdowns – going from ‘I’m OK’ to ‘No, I’m not’ over and again. Sometimes they would just listen to me, which is what I needed.
It’s not necessarily something people have answers for but just having people there that I could talk to. Just walking through the steps in my mind of what actually is this condition really helped me.
My wife has been tremendous in helping me through it and my club has helped me too. Just being there [at the club], seeing them and them encouraging me to train, do what I can and looking after me during training to make sure nothing untoward is happening [whilst still beating me up, but in a friendly way, obviously].
It’s having those proverbial shoulders to cry on. That was absolutely invaluable in getting through that first phase until it was something I could accept.
Like a lot of people, I didn’t know a great deal about MS. I’ve got a friend whose wife has MS and that was the only person I knew who had it.
Generally, she’s mobile and gets around and has been able to over the 20 odd years that I’ve known her [she suffers fatigue more than I do].
That gave me some hope but as I started to research what it really meant it was quite difficult.
There was a story on the news about a chap who had MS whose condition had progressed a lot and at that point I freaked out [not an exaggeration, I had a meltdown and a feeling of absolute dread]. At that stage I couldn’t handle that as a possible destination of what I was going through.
As my experience of MS was someone who had always seemed relatively healthy, I wasn’t ready to see such possiblity.
As I get further away from my diagnosis, that aspect doesn’t have the same effect on me. I can deal with that kind of information much more rationally than I could in the first few weeks.
It’s about learning both what this condition is and [perhaps more importantly] what it’s not. It’s about taking your time and not trying to understand everything about MS immediately because, like me, you might come across something that you’re not ready to see [some more comments on this are here. I can’t emphasise enough about taking your time to understand this weird new reality].
Predict the Unpredictable
Because of the nature of my job in IT [technically my previous jobs, due to Covid-19 layoffs] I like the facts of things – the definitive ‘if this happens, then that happens’ but because MS is so unpredictable it does make it hard [but probably not as hard as something like MND. It is predictable and there is no positive outcome].
Conversely that unpredictability made me focus on my own symptoms while trying not to worry about it. I didn’t want to suddenly find I’d turned seventy and spent twenty-five years worrying about disability that never happened.
If it does come then I’ll have to deal with it [not to suggest that I’m blasé about this prospect, but I try to tune it out. I can’t say how I’ll react should this become a reality].
Looking Forward, Staying Positive
It’s encouraging to see the progress in treatment since I’ve been diagnosed. Even though certain trials don’t necessarily result in a treatment the fact that there’s something there makes a difference [see my thoughts on the recent Bexarotene trials].
The aim, by 2025, of having treatments ready or in the final stages is hugely encouraging.
When I started Lemtrada in 2019, the notion of 5 years of blood tests was quite intimidating [I’ll be in my 50s by the time I finish. Eeek!] but I’m already a year and a half into it [so far so good] and as I’m coming to the end of the cycle hopefully there will be even more treatments available.
It’s very exciting that we could be having a conversation in five years in a completely different treatment landscape [fingers crossed, the Shangri-la of remyelination treatment feels tantalisingly close].
And that’s my story. Thanks to Stuart and the MS Society for their time and for sharing it.