“I’ve finally been given the chance to go on a clinical trial”
Carol is the first participant in the ChariotMS trial, which will test whether a drug called cladribine can slow down the worsening of hand and arm function for people with more advanced progressive MS. It’s one of the first ever clinical trials for people with advanced MS.
In the early 2000s I started experiencing heaviness in my legs and back ache. I never suspected that it might be MS, nobody in my family has it. It came completely out the blue. Finally in 2005 I was diagnosed with primary progressive MS.
As a wheelchair user I’ve sometimes felt written off
I’ve been trying to get on a clinical trial for years, but nothing has been available. Most trials have an upper age limit (I’m 70) and they’re not open to wheelchair users like me. I was almost accepted onto a trial in 2010 but was stopped at the last hurdle, which was really disappointing.
After I got to a certain age I thought that was it, I didn’t think I’d have another chance. Once you become a wheelchair user, it can sometimes feel like you’ve been written off and there’s no treatment available to control your MS. If you can’t walk, that’s it.
Finally I can join a trial
When my family heard about ChariotMS they all told me I should go for it. I don’t have anything to lose - apart from my hair, and I’m pretty vain! But that’s not a side effect everyone gets. It’s very exciting, but I don’t know what to expect.
The ChariotMS trial is so important to me, because I can still do so much with my upper body. My biggest fear is becoming bedbound. It would mean so much to me, and reduce my anxiety, if there was a treatment which could help me retain limb function and slow down the progression of my MS.
Maintaining my independence
With MS, I can feel like an onion being stripped of my independence as I’ve had to give up things like working and driving.
I live next door to my son in a self-contained annex, and have a carer in the morning who helps me get ready for the day. I found it hard to come to terms with the fact that I needed help, but once I got past that I felt so much better. I try to be as positive as I can and stay as independent as possible.
I want to maintain as much independence as I can and continue to do things like transfer to and from my wheelchair. I love going to art galleries, so it’s really important to me that I can still transfer into a car.
Enjoying the finer things in life
Why shouldn’t I carry on enjoying the finer things in life?!
I’ve got three grown up children and six grandchildren, so I want to go out and do things with them. I love going out for meals and going on cruises with my daughter, although that’s been shelved since coronavirus!
One of my biggest passions is painting. I took it up after retiring from my social work job eight years ago. It was something I’ve always wanted to do, and I won’t let MS stop me. I go along to a local art group where I have an amazing teacher. My favourite things to paint are seascapes and lighthouses.
If there was a treatment that could preserve my use of my hands for painting, that would be incredible.
Research into preventing progression is so important. I’m really doing the trial for the MS community. If it helps me then great, but if it helps people after me, that’s great too!
