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Patients & families
For people living with neurological conditions and their families.
Patient stories19 MarOnly days after returning from an adventure of a lifetime, Louise Hulbert’s world was torn apart when she had a stroke. Here, the author of From Burgos to Bedroom Floor and Back Again tells NR Times how she hopes to inspire other survivors with her story
Three years into retirement, and about to celebrate a landmark birthday, Louise Hulbert was making the most of her 60th year. A lover of walking, she had just completed several stages of El Camino, a long-distance pilgrimage walk from France to Santiago de Compostela in northern Spain, crossing the Pyrenees on the way, covering up to 15 miles every day.
Community neuro rehab17 MarParents have been able to interact with their children in new ways through the introduction of music therapy into the home during lockdown, according to one business which has overseen remote sessions.
Prior to the pandemic, ELM Music Therapy worked widely in schools and with charities across the North East of Scotland, supporting children with neurological conditions and other disabilities with their development through harnessing the power of music. But as of March last year, ELM has taken all of its sessions online, also making use of YouTube to deliver content to the children it would ordinarily teach in person.Prior to the pandemic, ELM Music Therapy worked widely in schools and with charities across the North East of Scotland, supporting children with neurological conditions and other disabilities with their development through harnessing the power of music. But as of March last year, ELM has taken all of its sessions online, also making use of YouTube to deliver content to the children it would ordinarily teach in person.
Patient stories15 MarA woman who had to learn to walk again after being diagnosed with a brain tumour only weeks after the birth of her daughter is now set to run the London Marathon.
In 2015, former civil servant Marie Garnett was diagnosed with a benign meningioma brain tumour less than six weeks after giving birth to daughter Amelia. The 45-year-old had suffered from severe headaches for seven years, which had become unmanageable after Amelia’s birth, and also developed dizziness and loss of balance in the days leading up to her diagnosis. Marie was rushed to The Walton Centre where she spent more than a month as she underwent three brain surgeries, the longest of which lasted eight hours, before battling meningitis – all while trying to be a new mum from her hospital bed.
Patient stories8 MarWhile Vasili Kalisperas was born a healthy baby, his undetected jaundice has left him with cerebral palsy and needing round-the-clock care. Here, his mother Elena shares her story and calls for action on kernicterus to ensure such heartbreak does not happen to more families “When Vasili was born, he was a perfect, healthy baby. I [...]
Patient stories2 MarWhen David was left with a serious brain injury after a road collision, he faced a huge uphill battle to try and rebuild his life - but having achieved several milestones, including regaining the ability to talk, his progress continues. Here, his team at Askham Rehab tell David’s recovery story so far.
Having been left with a brain injury following a serious road collision, David is now rebuilding his life with the support of a specialist rehab community. It was in 2017 when David, a carpenter in his early 30s, was left with life-changing injuries when his car hit a lorry.
Patient stories25 FebStruggling to cope with a mystery illness which left her unable to leave her own house, Carmen was finally diagnosed with a condition so rare many medical professionals are not aware of it. Here, she shares her story.
For years, Carmen used to love travel, exploring the world on her own. Egypt and Barbados were favourite countries to visit. But one day in 2011, the 39-year-old found herself unable to walk out of the front door of her home in Liverpool, after experiencing increasing difficulties while outdoors. “I would get to a crossing on the road and suddenly I was unable to go,” she recalls. “In my head I would be thinking, ‘Why I can’t just cross the road?’ “My whole body had gone stiff, and I felt like I was stuck to the pavement.” Carmen received treatment for severe anxiety, as there were no conditions doctors could diagnose from looking at her blood test results.
Patient stories22 FebToday marks World Encephalitis Day. Encephalitis is a condition which affects 500,000 people every year and causes inflammation of the brain, which can cause permanent brain injury.
Yet despite this, statistics show that 78 per cent of people do not know what encephalitis is. Here, to raise awareness of encephalitis and its impact, Bruno shares his story. “My encephalitis started suddenly from one day to the next. I was 16 at the time, and I was half way through my school lunch hour when it happened. All of a sudden and without any warning, I felt very dizzy and lost all sense of balance. I spent a good deal of the afternoon with friends in the school library sitting down not being able to move much.
Patient stories16 FebAfter rebuilding his life following two life-threatening strokes aged just 14, Connor Lynes now dedicates himself to supporting other young survivors to follow his lead.
“I’m no-one special, just a kid who refused to give in.” But to the countless people who are inspired by his story of recovery, strength and optimism, Connor Lynes is so much more than that. Having had two strokes aged only 14 after sustaining a head injury while playing rugby, leaving him fighting for life, Connor now dedicates himself to supporting others, both through fundraising and by showing what life after brain injury can be.
Patient stories11 FebAfter sustaining a TBI following a serious assault, Ian was left with no memory of his life or his beloved family. Here, his wife Bethan shares their story of rebuilding their lives.
The excitement of Christmas 2019 became devastation in an instant, when Ian was attacked on Christmas Eve. He was walking home in Cheshire, accompanied by wife Bethan and their three young children, when he was punched unexpectedly by a person he didn’t know. Ian was knocked to the floor and hit his head on the curb, causing a brain injury which led to a blood clot in the temporal lobe.
Patient stories8 FebLockdown has prevented Kevin Jones from being with his partner, who has Parkinson’s and dementia with Lewy bodies, in her care home. Here, he shares his story.
“When this horrible, horrible condition started, our lives changed basically overnight.” They are the heartbreaking words of Kevin Jones, whose partner Jean has dementia with Lewy bodies. Jean now lives in a care home that has been locked down during the pandemic, with Kevin only able to see her through a bedroom window. ‘I’d give anything to be able to sit by her side, hold her hand and give her a kiss,’ he says.
