End of an Era

After two years, the trial is now finished. No more visits to the Clinical Research Centre. No more assessments.

In some ways I’m back to where I started, and yet I’m not. I’ve not lost anything by taking part, except for a bit of time and a bit of blood. Instead, I have gained so much. From the first suggestion of the opportunity to take part, it has been a fascinating experience.

It’s been daunting, terrifying and reassuring all at the same time. Every aspect of my health, physical and mental, has been assessed. I’ve discussed MS (Multiple Sclerosis) symptoms I’d rather ignore. Bowels and bladder, that kind of thing. I’ve had lung function tests (they’re hard work), MRI scans, eye examinations, skin examinations, EDSS assessments (Extended Disability Status Scale used to measure disability in MS), questionnaires of all kinds, ECGs, urine samples and blood tests. Lots of blood tests. I’ve parted with so much blood, that most of my veins now run for cover when they see a needle.

 

I’ve been able to monitor the fluctuations in my symptoms and watch the variations. I’m intrigued how some things improve and others get worse, and how they swap about like they’re dancing.

It all means I have known exactly where my MS sits, and so I’m more confident in my discussions with my local consultant. I’ve met some interesting people. I’ve debated the pros and cons of assessment tools with doctors and nurses, and had conversations about the trial process and progress. I’ve compared notes with fellow trial subjects and we’ve laughed about some of the assessments - The depressing tone of the recorded voice asking questions about suicidal thoughts and actions.

I’ve enjoyed going into town every few months. I’ve got to know all the station staff who organise a ramp to help my scooter and me on and off the train. And the staff who do the assessments have become friends. I’m quite sad that it’s come to an end. I shall miss them.

At the same time, this is the exciting bit. This is when two years of work, by over 1500 people in more than thirty countries across the world is collated and analysed. This is when we discover whether the drug has been as effective as hoped, and whether or not it can progress towards becoming a viable treatment. It is when I will find out whether I’ve been on the medication or the placebo.

What do I think? It’s a question I’ve been asked endlessly since I began this process. The honest answer is... I don’t know. I’m pretty sure I’ve been pushing my limits and getting away with it. But is that because I’m on a new drug? Or is that because I’m in a more positive frame of mind?

Whatever the outcome, it has been exciting and has given me hope. And hope is an important commodity. Hope is everything.