Patient stories
After years spent in pain and struggling for a diagnosis, Karl Johnston felt relief when he was confirmed as having a little-known condition where the brain effectively slips into the spine. Here, he shares his story.
"Some dads get to put their children on their shoulders, but I've never got to do that.” That is just one of the day-to-day realities facing Karl Johnston, whose condition, Chiari Malformation Type 1, means his brain is effectively slipping into his spine. For eight years, Karl had experienced a catalogue of symptoms, including intense and debilitating neck pain, light-headedness, fatigue and numbness in his arms, but without securing a diagnosis of his condition. But now, the 35-year-old admits he feels some relief at the knowledge he has Chiari Malformation Type 1, as devastating as the diagnosis was to receive.
Having had a subarachnoid haemorrhage the day after full lockdown was imposed on the UK in March, Lee Atkinson faced the trauma of a lengthy recovery without seeing his family. Here, he shares his story of how he coped.
For millions of people across the country, the onset of the COVID-19 pandemic marked the start of a hugely challenging period. But for Lee Atkinson, that challenge was one of survival, after he experienced a subarachnoid haemorrhage the day after the UK went into lockdown on March 23. Having felt unwell for about three weeks, Lee, a car garage manager, was seeking medical attention for his developing situation.
Having been left with serious injuries in a cycling accident, Ian recovered from the physical impact but continued to suffer chronic pain. Here, he discusses how he has learnt to deal with it and get his life back on track.
“About two years ago, I was involved in quite a serious accident while I was out on my bike. I flew over handlebars and hit my head on the ground, leaving me unconscious. I was left with an array of injuries, including decompression of two of the disks in my spine, which needed an operation to resolve. But from being in the ambulance after my accident - the earliest point I can remember after coming off my bike - I was in enormous pain.
Sarah Coughlin experienced the horror of her head facing backwards after sustaining a brain injury. Here she shares her recovery journey with NR Times.
“I was wondering why my windscreen had black lines across it - until I realised I was looking out of my back window.” Sarah Coughlin recalls the horrific moment she realised her head had turned 180 degrees to face backwards, due to brain trauma she had suffered after sustaining a head injury. In the immediate aftermath of the injury, Sarah recalls little seemed wrong aside from a persistent headache.
For Leanne, who has MS, the opportunity to gather with loved ones on Christmas Day is one she feels she must decline. Here, she shares her reasons for choosing to be lonely this Christmas.
Christmas is my favourite time of year, and ordinarily I’d be out celebrating, seeing friends and family, and planning something really fantastic to see in the new year. But like for so many other people, 2020 is going to be so different. I’ll be completely on my own. And while under normal circumstances that would be the most heartbreaking Christmas I could imagine, this year it is undoubtedly my best option. At least, that way, I’ll still be here to enjoy 2021 and the years beyond that.
What began as a schoolboy dream to raise a few pounds to thank the medics who had supported him throughout his childhood has become a much-loved fundraising organisation which has generated over £245,000 for good causes. Here, Andrew Baker discusses his pride at being able to help fellow young hospital patients and brain injury survivors through his Play2Give organisation.
Having lived with a brain injury since birth, spending much of his younger years in and out of hospitals for ongoing treatment and undergoing major brain surgery at the age of 12, Andrew Baker decided he wanted to give something back. “The medical teams were amazing, they were so brilliant, and I decided I just wanted to say thank you. It will be 19 years ago in January when I was in year 10 at St Birinus School in Didcot and thought how nice it would be to raise some money for them as a way to give back,” he recalls.
Having lived with a serious brain injury from the age of seven, Jamie has rebuilt his life and is committed to enjoying every single day, supported by a team of specialists around him. NR Times learns more.
Jamie lives every day to the full. Having lived with a severe brain injury since the age of seven, when he was involved in a road traffic accident, Jamie has rebuilt his life beyond all expectations. He has developed a love of boxing, which is helping him progress both physically and emotionally, which has proved the perfect solution to his loves of sport and being active.
When James’ wife suffered a stroke, both of their lives changed as a result. Here, he talks openly about how the ongoing impact of her illness affects them both, and how he in particular struggles to cope.
It’s been two years now since my wife had a stroke. She has done so well in getting some of her old self back, but in truth I think it’s me who continues to struggle the most. We’re a couple in our early 40s who have always loved to travel, enjoy the outdoors, eat out in nice restaurants, and just enjoy our lives. We’ve been together since we were teenagers, and while we haven’t been blessed with children, our adventures have always ensured we had plenty to keep us occupied.
Having suffered a traumatic brain injury in an assault aged only 24, Martin’s life was changed forever. Here, he tells NR Times how his personality was changed beyond recognition, and why he is now relieved his suicide attempt failed.
It was a Wednesday morning. The sun was shining, children walked past my house on their way to school, it was a day like any other. But for me, today was different. Today was the day I decided I no longer wanted to be in this world.
I took one last look at the sun from my window, closed the blinds, then went to my bedroom with a cocktail of pills to hopefully make it all just end…
Having suffered a brain injury two years previously in a violent assault, which left me with a personality even I didn’t recognise, my life was in ruins.
Having felt so let down by the lack of support and guidance available to people with Multiple Sclerosis (MS), podcaster and campaigner Jessie Ace has now produced a book - My Enabled Warrior Tracker - in the latest step on her crusade to empower those with chronic conditions. NR Times learns more.
Diagnosed with MS aged only 22, having just graduated from university and - with a book deal already secured - about to embark on a career as an illustrator, Jessie Ace knows only too well how devastating and scary the outlook can seem.
“I thought my world had ended, but the worst part of it all was not knowing where to turn, or who to turn to. There was a total absence of information about what I should do from that point onwards,” she recalls.
