One Year On...

I’m back at the Research Centre again. When I started this blog, it coincided with starting the trial of a drug for Secondary Progressive Multiple Sclerosis, and I thought it would be great to follow as it proceeded. Except, of course, that it is only the anticipation at the beginning and the results at the end that makes it exciting. The bit in the middle, the regular assessments are less so, and only happen three monthly. Never-the-less it has so far been an interesting experience and a reference point as to how MS fluctuates over time. The regular ups and downs and the more defined changes.

I have come to realise that, in terms of the research and my assessments at the Centre, I am more of a subject than a person. They look for different aspects of MS than my local hospital does. Being a trial, they monitor every aspect of my health, both physical and mental. Although reassuring, discussing intimate and personal aspects is also daunting. I just have to steel myself, take a deep breath and go for it.

And my relationship with the local hospital, who referred me to the Research Centre as a prospective candidate for the trial, has shifted slightly, in that there seems to be longer gaps between my review appointments. But  my discussions there been more productive. Having to regularly talk about all the gruesome symptoms that I would rather ignore, has made me more able to do so. I'm also more able to think more clearly about the impact of various difficulties because I'm clearer about where exactly those symptoms sit. That's a good thing I think.

Up until now, I have refused to be drawn on whether I think I’m on the drug and what difference, if any, it is having. I’ve had a sneaky suspicion since early on in the trial, but I was afraid to acknowledge it in case my hopes were just that. Was it real or just the placebo effect? Who knows?

So what I think now?

The one thing it has done, and the most important effect, is to give me HOPE. With the trial, if I’m on the drug there should be a slowing of progression. That’s the expected outcome. It is a Phase III trial and the early trials were promising, although they were in Relapsing-Remitting MS. And even if I’m on the placebo, I’m still helping to forward research into treatments. That’s definitely a good thing.

Of course, each person's MS is individual to them. So how do I know if mine is progressing any slower with a new drug than it would without? It is only by comparing the rate of progression, over a significant period of time, of a group of people who are on the drug with a group not on it, that scientists can have any hope of establishing an answer.

However, on a personal level... I do feel like I have been pushing my limits and getting away with it in a way that I haven’t been able to in a very long time. My last relapse, and significant progression, was in 2012, as the London Paralympics finished and before I started on the trial. So maybe…? Just maybe...? There is hope. And that alone, is a powerful commodity.