Hi, I’m Cathy Howard, I’m 51 and have secondary progressive multiple sclerosis (MS). I was originally diagnosed with relapsing remitting MS in 1998 at the age of 30 and I later took ill-health retirement from work in early 2015.
I use two sticks to walk short distances, or a wheelchair or scooter if I’m going out. I applied for the Simvastatin trial as I was conscious that apart from some fundraising for MS Society and MS-UK over the years, I’ve never really done a great deal for others with multiple sclerosis (MS).
The MS-STAT2 trial is a double-blind study, which means that I don’t know whether I’ll be taking Simvastatin or a placebo, and neither do the Drs who administer and regulate it. To be honest, although it would be a bonus to me if I took the drug and it worked, I’ll be happy just participating. I will be sharing my experience of participating in the trial through regular blog posts on the MS-UK blog, so watch this space!
Today is my screening day appointment (19 August 2019). I got up ridiculously early because my husband John was stressed about us getting the train with booked assistance for me in my wheelchair. Bleary-eyed we head out to the station. I was eager for my first coffee of the day.
The train was on time and we got to UCL Queen Square Institute of Neurology in London about 45 minutes early. Dr Tom Williams, MS Clinical Research Fellow, came to meet us and escorted us through the rabbit warren of corridors to the trial room. Here I had my second cup of coffee and I’m started to feel awake.
Tom introduced Dr Nevin John, MS Medical Clinical Research Fellow, who is also part of the study. Nevin advised me about the trial, what to expect and possible side effects of statins. He asked me questions, completed forms based on my replies, and requested for me initial consent forms. There is so much paperwork and record-keeping involved!
I then had a basic physical examination, including blood pressure and blood oxygen levels, and my heart and breathing listened too. My height and weight were checked and I had various vials of blood taken for testing.
I also agreed to take part in a brain oxygen study and mSteps smartphone analysis. I was wired up to the brain oxygen study machine and computer and baseline readings were taken. Then I had three separate minutes to say as many words as I can that start with a selected letter. Not as easy as you may think! From the problems I had, I expect I’ve got very little oxygen reaching my brain!
An app is being developed to accurately record walking distance and speed etc. I had a mobile phone with the app on it strapped to my arm and was asked to walk short distances. This also served for the walking part of the MS-STAT2 screening process.
All in all, it was a very interesting appointment. I was completely exhausted by the time I got home but felt like I’d actually done something productive and I’m smiling as I write this! This is it for now, but I’ll update you all on the next part of my journey very soon!