Chair of Trustees, Caitlin and her husband Tim, talk about how the MS Trust helped them

Tim was diagnosed with multiple sclerosis in 2009, after experiencing symptoms for around four years. Since then Tim, and his wife Caitlin, have been dedicated to raising funds for and supporting the MS Trust. They have run marathons together and Caitlin has even become the Chair of Trustees. You can read more about their story below.

Tim, when were you diagnosed and what impact did that have on you? 

Caitlin: Tim started having symptoms in summer 2005, just as he was training for the London Triathlon. He was exercising a lot and initially thought that he might have trapped a nerve or something because he had pins and needles in his arm, but that rapidly spread to numbness down one side of his body. He was referred to a neurologist by his GP. I remember him asking the neurologist whether he would still be able to take part in the triathlon. His neurologist made it clear that swimming in the Thames when your arms aren't really working properly was a bad idea. That was quite a blow for Tim, not least because of the all the training that had put into it. That was the start of a journey that lead to him finally being diagnosed almost four years later in 2009 after a lumbar puncture. 

All those pre-conceptions and fears.... what you learn afterwards is that this isn't the end, it's only the beginning. No one knows how MS will affect you and nobody can tell you.

Tim: Although it wasn't exactly a surprise to me after four years in limboland, and was announced casually, in-passing by a doctor in an open hospital ward, it still feels like such a significant moment in your life. How can it not? All those pre-conceptions and fears.... what you learn afterwards is that this isn't the end, it's only the beginning. No one knows how MS will affect you and nobody can tell you. You must go on your own journey and face up to what comes as best as you can. For me personally, I've tried to be as upbeat and forward facing as I can: I can't change the past, and I can't predict the future, but I can determine my own attitude. This has been challenged a bit by the change in my diagnosis to Secondary Progressive MS and a worsening of some of my symptoms over the last 18 months or so, but I hope my basic attitude has survived intact. 

How did the MS Trust support or help both of you through Tim’s diagnosis and beyond? 

Caitlin: The MS Trust's website helped us a lot before diagnosis. Tim was initially diagnosed with transverse myelitis, and we rapidly became aware (not from his neurologist or medical team, but from our own online research) that this could in time become a diagnosis of multiple sclerosis. Four years is a long time, so it's fair to say that we had done quite a lot of reading on MS before the diagnosis was confirmed. We were very information hungry, but also very aware that not all information on the internet is of equal value. The MS Trust was a trusted source, partly because of the leaflets given to us by the NHS staff along the way. 

It's easy to feel powerless when somebody you love is diagnosed, and for me raising money and raising awareness was something that we could do to help, to fight the disease even if it didn't specifically or immediately benefit Tim.

Caitlin, why did you decide to become a Trustee at the MS Trust? 

Caitlin: After diagnosis, we were determined not to just sit back and do nothing. Tim wrote a lot about MS on his blog (not just how it affected him, but about the disease in general and how it affected others) because he was keen to raise awareness of the condition. It's easy to feel powerless when somebody you love is diagnosed, and for me raising money and raising awareness was something that we could do to help, to fight the disease even if it didn't specifically or immediately benefit Tim. Instead of a wedding list, we asked guests at our wedding to make donations to an MS charity, and we started running half marathons to raise funds. After a few half-marathons, Tim came up with the stupid idea that we could raise even more money if we took on a marathon.  

We approached two MS charities about getting charity places for London and the MS Trust responded immediately. The contact was very personal, the staff were friendly and caring, and they offered us all the support we needed both to give us the confidence that we could both run the marathon and raise the funds. The more we talked to friends, families and colleagues about the work of the Trust to help boost sponsorship and donations, the more we realised just how much the MS Trust does behind the scenes. I was convinced that running the marathon would be a one-off, and that I had to find other ways of supporting the MS Trust that were more in keeping my skills and my strengths!  

The challenge for us now will be to find other ways to raise funds to keep funding and training MS nurses and Advanced MS champions.

As it happened, at the reception after the marathon somebody mentioned that the Trust were about to recruit for trustees. I kept an eye out for the advert and applied as soon as it was published! That felt like a much more suitable way for me to add value and one that enabled me to put all the experience I had gained at work to good use. Whilst I might not say I prefer going through annual reports and policies to running marathons, I think I'm better suited to the former! 

Sadly, Tim didn't think that we were done with marathons, so I ran another four and he's run another five. We ran our last marathon (at least I think it will be our last) in Vienna, where we got married. The challenge for us now will be to find other ways to raise funds to keep funding and training MS nurses and Advanced MS champions, and to make sure that the same quality of information and the same support that we had access to is available to others. 

Why is it important to raise awareness of MS and the charities that support people with MS? 

Caitlin: Because people have a certain idea in their head of what MS looks like, and because the symptoms aren't always visible. We've always been very open about Tim's diagnosis and I'm very proud of my husband for the open way in which he talks about his bladder issues for example. Our friends have all been very understanding, and it has helped normalise things to be able to talk openly about issues.  

It's also important to raise awareness of all the charities that support people with MS, because they all have a different part to play, and because if we combine our voices, we are more likely to be heard. 

Tim: I genuinely do consider myself lucky, and I hold MS responsible for transforming me from a glass-half-empty cynic to the positive person I apparently am today (although, I should stress, the cynic is still alive and well in other aspects of my life!).