'Without stroke research, I would have died.' Grace Russell had a stroke in 2010 when she was only 17. 'I was driving to the gym and all of a sudden, I just couldn't feel my right side,' she remembers. 'I called my mum and she took me to hospital.
'They diagnosed me with a stroke and took out a third of my skull to allow my brain to swell. To do this, they cool your body down to almost hypothermia levels. It was new in research and they weren't sure of the chances it could give me, but they thought it was worth a shot. For me, that research was literally life or death.
'I was in a coma for two weeks, and when I woke up I couldn't move my right side. I had to learn to read, write, talk, walk - everything again. It had a huge impact on my family. My mum had to wash me, change me, teach me how to do my hair again. Our lives changed dramatically - it was terrifying.'
Professor Audrey Bowen is a stroke researcher whose work focuses on rehabilitation and living with disability. 'Stroke is life-changing,' says Audrey. 'Thanks to research into emergency treatments, like the one Grace received, people can now survive their stroke.
'But as Grace says, that's just the beginning of a long and often challenging journey through life after stroke. We need to focus on rehabilitation research too, so people can not just survive, but thrive.
Audrey was one of the first cohort of psychologists and physicians funded through the Stroke Association's lectureship scheme, and recently spoke about the opportunities this gave her at our Amazing Brains event in May. 'The Stroke Association is the only organisation that is dedicated to supporting research into ongoing rehabilitation for stroke survivors. Thanks to them, I've been able to work with stroke survivors and their families, health professionals and research students to investigate effective new treatments and therapies to improve the lives of people affected by stroke.'
Research like this means everything to stroke survivors and their families. It means hope for a better recovery, greater independence and a future.
'If you look at me now you wouldn't think that I've had a stroke,' says Grace. 'Research helped me beat all the odds. But I'm still facing that recovery battle and I always will be. I suffer from post-stroke pain syndrome. Because of that, I'm in constant, horrendous pain. I'm generally a very positive person, but when you are constantly in pain like that, it beats you down.
'My partner Kurt is the hand that reaches out and reminds me to use my TENS machine (which uses electrical impulses to reduce pain). He encourages me to get up and walk around as sitting around is just going to make me worse. Although I hate it at the time, I'm grateful afterwards. I just need a push to do it.
'When you have a stroke, the fear is that it'll happen again. And that fear never leaves you. So, for me and my family, the research that's being funded by the Stroke Association is amazing. It gives you hope that if the worst was to happen, that there's going to be more treatments and, even better, recovery is possible.'
Tips for managing long-term pain:
Do some gentle exercise - Activities like walking, swimming and gardening can get you moving. This helps to reduce pain by stretching stiff muscles and joints, and making you stronger and fitter. Exercise also releases endorphins, which make you feel happier.
Take pain medication - If suitable for you, over-the-counter painkillers, like paracetamol can help to reduce pain flare-ups so you can be more active. Don't wait until your pain is severe to take them as they'll be less effective.
Try relaxation techniques - Breathing exercises and meditation can help you to feel more in control and relaxed, relieving tension that might make the pain worse. Look for classes in your area, or download a relaxation app to guide you.
Distract yourself - Find something that challenges you or that you enjoy to help you to focus on something besides the pain. Hobbies like knitting, model building, puzzles or video games are good if your mobility is limited.
Talk to others - Pain can make you feel isolated, so reach out to family and friends for support. You can also find long-term pain support groups online and in your local area.
Get a good night's sleep - Do your best to stick to a normal sleep routine as sleep deprivation can make pain worse. If you're really struggling to sleep at night, talk to your GP.
Stroke News magazine
This article is featured in the summer 2022 edition of our magazine, Stroke News. Subscribe to our future editions available in print, on audio CD, or via email.