I’m on the Octopus clinical trial!

Sheila Butterly joined the Octopus trial six months ago. Here she introduces her story

I was officially diagnosed in 2019, a week after my mother passed away. I had been under the care of my neurologist for six years before the official diagnoses and we suspected that it was MS.

I was prescribed Avonex and took weekly injections on a Sunday night. Post pandemic, I have moved to a diagnosis of secondary progressive MS and have been taking Siponimod since then. I also take Fampridine which I was prescribed last year.

Complementary therapies

I currently visit the MS Centre in Harrow once a week. They are amazing, and that is where I undertake oxygen therapy and physiotherapy. I have also bought a Mollii suit and use that every couple of days.

I have not altered my diet greatly but I was very ill in December 2023 and have stopped eating red meat, drinking alcohol and avoid caffeine. This is more for the avoidance of migraines and nausea.

I use mobility devices to get around and have two canes for small distances, a wheelchair from Rollz Motion for longer distances or my mobility scooter from TravelScoot.

Octopus trial

I’m over six months in now on the Octopus Trial, and the team in University College London Hospital are amazing. I cannot praise them enough. I feel very cared for and they are on the end of a WhatsApp message or phone call if I ever need them.

I’ve had a couple of MRIs and some neurology and walking tests. Other than that, I take big blue pills every day and keep a journal of any side effects. It is a double-blind placebo-controlled trial so I have no idea what drugs I’m taking.

It is humbling to be part of the trial as I believe that the work they are doing will change the lives for many people with MS.

My advice to anyone diagnosed with MS would be first off to take a big deep breath. MS is a different journey for everyone and your journey will not be the same as anyone else’s. Speak to people and reach out for support when you need it. You don’t realise your own strength until you do. Your life will be different to what you expected, but it will still be full. And don’t be afraid to cry and let it all out when you need to!

What is the Octopus Trial?

Octopus is a revolutionary trial researching to find treatments for progressive MS. Find out more about the Octopus Trial at https://ms-octopus.mrcctu.ucl.ac.uk