From stroke survivor to clinical trial volunteer
When Gwynneth suffered a stroke, it soon became clear to her that very little is known about the type of stroke she suffered. To help improve the lives of future stroke patients, Gwynneth decided to participate in Professor Rustam Salman’s clinical trial. Find out what it’s like being a patient involved in life changing research.
‘It was clear something was wrong’
On the 9th May 2016, I was having a normal day. Like most weeks, I went to the Ratho climbing wall.
I was tackling a difficult climbing route and was about 20 feet up the wall when I started to struggle a little with my grip, and found I was having problems placing my left foot onto a small hold. I thought I must be climbing badly, so asked my climbing partner to lower me down to the ground.
It was the moment my feet touched the ground that it was clear something was wrong.
My left leg gave way completely and I couldn’t walk
I don’t remember, but apparently it wasn’t a minute after this that I said — ‘what if I’m having a stroke?’
A haemorrhagic stroke is when the blood supply to your brain is cut off. This happens when a blood vessel bursts and bleeds, or haemorrhages, into your brain.
I was so scared. I kept thinking — I’m 53, a single mum, physically active. How can this be happening?
Hearing about the clinical trial
The morning after my stroke, two research nurses came to visit me in hospital. They talked to me about my care and then introduced me to Professor Rustam Salman’s research at the University of Edinburgh, giving me a range of leaflets.
That was the first time I’d hear about his clinical trials.
They asked whether I would be willing to take part in a research project investigating the cause of my type of stroke.
Professor Salman’s trial focuses on looking to understand the causes of stroke by carrying out a more detailed brain scan and a blood test. Being part of something like this helps Professor Salman’s team collect important data which could reveal new ways of preventing or treating haemorrhagic stroke.
There’s also an option to donate my brain to research in the future.
Making the decision to sign up
Having spent most of my working life in the field of human healthcare, I’m very familiar with clinical trials: their benefits, pitfalls and most of all — their importance. Partly through my line of work and through my own experience now as a stroke survivor, I know how little is known about haemorrhagic stroke.
There is also currently no effective treatment, so it was an easy decision agreeing to take part in Professor Salman’s trial.
We need answers.
I’m yet to sign up to the brain donation, as I want my children to be comfortable with the idea and felt it was too early to discuss. Now a little later down the line, we’re in talks about it.
I’m now part of three studies. Two of the studies are looking at how stroke impacts anxiety and activity levels, and the third is looking at new brain and retinal (eye) scanning techniques.
After I came out of hospital, my focus was on my physical recovery. I still remember how excited I was when I managed to walk to the end of my road and back — about 100m, but it felt like a marathon.
The psychological side, for me, can be harder to manage. I feel so much uncertainty.
How much will I be able to recover? Can I still do the things I want to do without increasing my risk of having another stroke?
These are questions no-one can answer, which is really hard to deal with.
Adjusting to my new normal
I’ve been building up my work and am about to start full time again. I’m also getting fitter and stronger and am back to walking, cycling and swimming (and even some climbing), but I know it’s important to get the balance right.
In day to day life I can do most things, although my left arm and hand can be an issue. We all drop our phones occasionally, but my left hand does it with monotonous regularity without my knowledge!
I’m now able to ignore the numbness, pins and needles, and extreme cold in my left side, but find them irritating to distressing at times.
Getting my life back feels so important, but it’s going to take some time adjusting to my ‘new normal’.
This stuff is really important
My outcome could’ve been much worse, but my stroke has had a huge impact on my life both physically and psychologically.
With limited knowledge on the causes of or ways to prevent haemorrhagic stroke, and extremely limited options for improving outcome, research and clinical trials are vital. This stuff is really important.