Discovering that the pattern of your MS is changing from relapsing remitting to secondary progressive can be a distressing and confusing experience for you and your loved ones. We talked to MS Trust Chair of Trustees, Caitlin Sorrell, and her husband Tim, who was recently diagnosed with secondary progressive MS, about that transition and how they have dealt with the emotional and practical impact the change in diagnosis has had.
Tim, can you tell us about what's changed with your MS over the last few months or years?
Tim: I first started getting MS symptoms in 2005, which was a few years before I was diagnosed in 2009. I've never really had a relapse, aside from the initial symptoms, so I've never had the classic spikes or symptom changes that you associate with relapsing remitting MS. Over the years my symptoms have remained on a similar theme of loss of sensation and loss of strength. But in recent years, I've started to develop spasms and cramps in my calves that travel up my legs and thighs. I have widespread stiffness. Previously there would be periods without it but it’s much more constant now. So when I had my last consultation, which was over the summer, the neurologist decided to shift me to secondary progressive from relapsing remitting.
Caitlin: We’re both runners and I would say the biggest noticeable change from the outside is the increased number of trips and falls Tim has when he's running. To the extent that he now runs with knee and wrist guards.
Do you think you both recognised on some level that these changes were part of the transition to SPMS?
Tim: To be honest, I've never really identified as relapsing remitting. I've always felt a bit of a fraud because I've never really had relapses. There's no such thing as typical MS, but I've never really felt like I was a classic RRMS case. I've been very lucky and I guess you kind of hope that that means it's benign. But my symptoms have always been there and my symptoms have been on a sliding scale. So when the neurologist said, in the matter of fact way they do, "I want to move you to secondary progressive", it made absolute sense, because it feels like a better fit for me than relapsing remitting.
Some people refer to being diagnosed with secondary progressive as like being diagnosed all over again. It can feel quite traumatic, has that been the case for you?
Tim: I think if I’d been on a disease modifying drug and was then suddenly told, "You’re secondary progressive, so there's no point in you taking this anymore", it would have been more of a wrench. But I stopped my DMD a few years ago following an allergic reaction. So from a medicines point of view, there's no difference as I wasn’t on anything. I think if I was taking something that felt like it was helping to manage my future progression and was then told, "There's no point taking this anymore", I think that would have been a much bigger struggle.
Caitlin: There was a part of me that was relieved to have this new diagnosis, because it fits better. I also think that his disease is getting worse. So there's an element of recognition that yes, he's getting worse. It's not just all in our heads or he's not just getting old.
We've got a label that feels more apt, but I'd be lying if I said it didn’t feel like a big deal. The new label puts it into focus that yes, his disease has progressed from when he was first diagnosed. It's a reminder that even though Tim is relentlessly positive and still does absolutely everything that he can, there's a progression path with this disease and it's only going one way.
Tim: I said to Caitlin yesterday, it ultimately doesn't make any difference. It's just a label. The way I feel hasn't changed. It's an absolute waste of time and energy railing against something that nobody can control. If there’s something I feel I can control and I don’t it will drive me crazy. With MS there's no point driving myself mad as there's nothing I can do. There's nothing anybody else can do, I have it. Maybe I'm lucky, in that I've always found it quite easy, not to wallow in the negative, because lots of people find it harder and lots of people struggle with more obvious problems as a result of their condition.
Looking to the future, do you see your life changing at all now you've been given this new label? Do you have concerns for the future?
Tim: I'm 46 years old, so I groan when I get out of bed, but I’m sure I'm not the only person that does that. I don't feel that there's very much to be gained by worrying about something I can't control. It's a cliché, but you have to cross that bridge when you come to it. We live in an end Victorian terrace and we've got a fairly steep set of stairs. There may come a point when I can’t manage the stairs but there’s no point in worrying about it now.
Caitlin: This is where we differ because I do spend time thinking about the stairs! Where we do agree is that, when you're given the diagnosis, you can focus on all the negatives and all the things that it might mean can change your life, or you can just keep living life to the full. If anything, Tim's diagnosis really encouraged us to live life to the full. We did a lot more travelling than we would have done without his diagnosis. I don't think we'd be running marathons. I certainly wouldn't be! Yes, there are lots of negative things that the future might bring because of his MS, but we'll just take them one day at a time. In the meantime, it's reminded us that life is for living.
Do you have any advice, as a couple and as individuals for anybody else going through a similar transition?
Tim: The first thing to understand is that MS is different for everybody and everybody experiences MS differently. It's really easy to slide into a worst case scenario and think that your life's over. So my advice would be don't mourn what you might have lost or what you thought you were going to do, celebrate what you still can do. You need to look forward and think about what you can do, not what you can't do. When we’re not in lockdown I do some guide running with visually impaired runners. I was running through a park with one man a couple of years ago and he said "I love running around here because the texture of the light changes as you go from the open parts by the lake, then into the woods." I just thought, "I completely take that for granted." I can see, and I completely take for granted how the light changes. I think we can all learn something from that.
Caitlin: My top tip would be to access all the help you can. We haven't been offered any treatment for secondary progressive, but the NHS has been fantastic in dealing with Tim’s symptoms. They’ve helped us in trying to find solutions for bladder problems or spasticity or referrals to physio. Just because you don't have a pill to take or an injection doesn't mean that there aren't any solutions. Sometimes you have to ask several times to get referred for those solutions, but those solutions are available. Until there's a magic cure, then I think it goes back to what Tim was saying about focussing on what you can do and finding solutions for the problems that are in front of you.
Unlike Tim, I do spend a bit more time thinking about the future. One of the things I started doing when he was first diagnosed was thinking financially, what it might mean in the future if he wasn't able to work. There is a level of long-term planning that gives us contingencies for what happens next. Once that forward planning has been done it enables us to live today a bit more. As a couple it's definitely helped us focus on what's important in life and to make the most of what we have. I also think it's brought us closer together. I've just started a PhD and I had a lecture on the strain that it will put on you and the impact that it can have on relationships. I felt like saying, I don't think there's anything a PhD can throw at me that we haven't already been tested with before.
I also find it really important to be able to talk to friends and family about Tim’s MS when he’s not there. When we got his diagnosis of secondary progressive, I needed to go and have a chat with some of my mates and my mum about what that meant and how I felt about it. So it's being able to have conversations together, but also a acknowledging that it affects us both differently and that we both need to process, sometimes on our own and sometimes together.
