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Real Voices: Staying active whilst living with MS

Iain has recently been diagnosed with secondary progressive multiple sclerosis. In this week’s Real Voices, and to mark MS Awareness Week, he tells his story and describes how getting a dog after his diagnosis has been a godsend in helping him to stay fit and focused.

It was very out of the blue. I was lying in my bed asleep, just before Christmas in 2006. I was awoken by the sensation of my feet being really freezing cold. They gradually became colder until they felt like ice blocks to me. It was really painful. I woke my wife, and told her what I was feeling. She touched my feet, and to her they were roasting hot. I knew that something was very wrong. I went to the doctor to get checked out and they sent me to get an MRI, which is when I started to become more worried. The scan the following day came back inconclusive, so I got a brain scan the next day, and then another MRI the day after that. This was a different type of MRI where they inject dye into your bloodstream so that the veins show up better on the screen. They still didn’t know what it was, and so the professor of neurology took me on as a test case as he hadn’t seen a case like mine before. I then got a lumbar puncture and I was ultimately diagnosed with an episode of transverse myelitis, which is a spinal condition. However, by that time I was also starting to lose feeling from the waist down. I could still function, but the feeling had completely gone. I was in the police at the time, but I didn’t tell anyone or take time off. I knew if I went off sick I would just sit at home and worry, which mental health-wise might put me on a downward spiral. As long as I could still function, I thought I may as well just carry on as normal. It was difficult to manage though, as if I were to trip whilst walking I wouldn’t have felt myself fall.

I was told that my condition might just get worse and never go away, or it might go away on its own, they didn’t know. Transverse myelitis is so rare that they reckon it’s only seen by an individual GP once a century. I was left with an unknown outcome, but about five or six weeks later, I noticed that my symptoms were starting to ease off. Most of my feeling came back, but I was left with a sensation in between all of my toes. The only way I can describe the feeling is if you were wearing socks, and you poked in between each of your toes. That’s the sensation I experience 24/7, which has never gone away.

I just got on with my life. I’m a keen horseman, and we had a family horse. In 2015, almost a decade after the initial symptoms, I noticed when I was crouching down to pick out her feet or scrub her hooves, I was struggling to get back up. I went back to the doctor, who referred me to a neurology clinic. He put it down as muscular issues, and recommended an MRI. I knew there wasn’t much point getting an MRI if it was muscular, so I declined.

When lockdown kicked in, we would take our daily exercise as a family and go for walks. I was really struggling. I was getting foot drops, and I was tripping a lot when we were out. I went back to the doctor, who referred me to neurology again at Edinburgh Royal Infirmary. The consultant said that due to GDPR my original scans from 2006 had dropped off the system, so they would need to start again with new scans. I got a whole new set of scans which revealed six lesions in my brain. They couldn’t compare them to original scans, so couldn’t diagnose me with anything yet. He did say he was referring me to an MS clinic, but said it was just to rule it out. I went to the Anne Rowling Clinic in Edinburgh, a specialist MS clinic. Right away, the consultant suspected that I had secondary progressive MS, but he couldn’t diagnose it because you need two sets of scans to show a comparable change. He also told me about a potential medication that could help me if it was MS, and told me to research it as it had some quite significant side effects. That was in May, and I was booked in for scans a year later. Come August, I started to notice that I wasn’t feeling 100%. I phoned the clinic, and said that I couldn’t wait a year to start the medication that would slow the MS down, as I was already feeling it progress. So they brought my scans forward six months, and they revealed that a lesion had developed at the base of my spine, which confirmed that it was in fact secondary progressive MS. At that time I wasn’t able to start the medication as the Omicron variant was raging across the country, and the medication would weaken my immune system, leaving me vulnerable. A few months later I was finally able to start the medication.

MS affects different people in different ways. For me, it hasn’t really affected me cognitively, but it’s really hit my legs. The only way I can describe how MS makes my legs feel is it’s like if you were on a speedboat going full speed, and you just suddenly cut the power off. When we still had our horse we kept her outside, and walking through the muddy field to get to her was becoming more and more difficult for me. Sadly I lost my horse last year, which was especially difficult for me because she was also my legs. Whilst I had trouble walking, as soon as I got on her back I was fine. We then decided to get a dog, Obi, during lockdown, which was a massive turning point for me. I get bored going for walks, and I tended to trip up a lot when we were out walking which was bothering me. One of the things I need to do is keep myself as fit as possible, as with MS it’s a case of use it or lose it. The dog has been brilliant for me in this way, because if I’m going out for walks on my own, I’m too busy thinking about my legs and that means I trip over much more often. With Obi, I’m too busy focusing on his training when we’re out, and talking to him, and that distraction really gets me out of my own head. I wasn’t particularly a dog person before we got him, it was my wife that loved dogs, but I wouldn’t swap Obi for anything now. He has been a godsend for me.

I would advise anyone with MS to find something (such as a dog) which they can focus on, which takes them out of their own head and stops them worrying about the disease. Keeping busy really helps me, as I cannot sit on my backside for any length of time. I do a lot of community work, and I still work part-time. It just depends how the MS impacts the individual, because it is so variable from person to person. I went to an MS conference last year, and I was gobsmacked at how many people were in wheelchairs or moved with great difficulty. I am lucky that I can still walk. The fact that the dog needs to be walked every day forces me to go out and get exercise, which has been so good for me. I do struggle on certain days, but I still keep going. All you can do is carry on as best you can and keep busy.