Portsmouth stroke survivor backs charity’s call that ‘survival is not enough’

A Portsmouth woman who had a stroke aged 33 is sharing her story ahead of World Stroke Day on Thursday 29 October, as part of a national campaign to spotlight the fragility of the brain and the life-changing impact a stroke can have on people of all ages.

Jasmine Jackson is raising awareness of stroke as part of the Stroke Association’s ‘Survival Is Not Enough’ campaign.

When Jasmine had a stroke in March this year, she already overcome challenges many people could never imagine.

Living with cerebral palsy, or Jazz as she is known to family and friends, had built a life full of determination, independence and passion. Outgoing, sociable and fiercely positive, she refused to let her condition define her.

One of her greatest passions was horse riding. For years, dressage and her horse Dollar were at the centre of her world. 

“I used to compete all over the country for Great Britain in para dressage,” she explained. “That was my life for a very long time.”

Her talent and dedication saw her selected for the Paralympics in 2024, something she describes as one of the proudest moments of her life, though a shoulder injury then stopped her taking part.

In March, two days after returning home from a holiday to Egypt, everything changed. Jazz woke up feeling extremely unwell. “I was violently sick all day,” she recalled. “I honestly thought I’d picked up a bug abroad or on the plane.”

At first, nobody suspected stroke. Jazz was repeatedly sick and unable to keep even water down. “We counted it at one point, I’d been sick around 20 times,” she said. “I couldn’t even keep a sip of water down.”

Her family became increasingly concerned and took her to her GP, who contacted the stroke clinic but initially it was believed Jazz was suffering from a hemiplegic or vestibular migraine.

“They got it wrong,” Jazz said. “What they thought had been a migraine before was actually an older stroke.” At the time, nobody realised Jazz had already experienced a previous stroke months earlier. “I’d gone a whole year not knowing I’d already had a stroke.”

The following morning, things became even more frightening. and she realised something was seriously wrong.

“I couldn’t swallow,” she said. “I was spitting my saliva into tissues because my throat just wasn’t working properly.” She was rushed to hospital where doctors immediately carried out scans and tests.

“Within half an hour, I’d had an MRI, CT scan, blood tests, everything.”

Then came the devastating news. “They pulled me into a room and said, ‘You’ve had a stroke.’”

Doctors later explained that scans showed not one, but three strokes. One older stroke and two more recent strokes affecting her cerebellum.

“The first thing I said was, ‘Am I going to die?’” Jazz recalled. “I was completely blown away. You don’t think stroke happens to people your age. I had no idea.”

Although Jazz is grateful that she survived, stroke has affected nearly every part of her daily life.

One of the earliest symptoms was facial weakness. “My face dropped for about a week,” she explained. “That really scared me.”

She also struggled with speech. “I knew what I wanted to say, but I couldn’t always get the words out properly.”

Fatigue has become one of the biggest challenges. “The fatigue is on another level,” she said. “I can sleep for 12 hours and still feel exhausted.”

Even everyday tasks now require careful planning and pacing. “I used to be somebody who was always out doing things. Now I have to think carefully about my energy.”

Her swallowing problems have also had a major impact. “I still can’t eat a lot of foods properly,” she explained. “Everything has to be soft or mashed up.” She often has to drink constantly while eating to help food go down safely. “It has to be moist and cut up small. I can’t manage certain foods at all.”

Jazz has also experienced weakness and instability in her legs. “Sometimes my legs suddenly feel like jelly,” she said. “I have to sit down straight away because I feel like they’re going to give way.”

Living with cerebral palsy already presented physical challenges before her stroke, but she says the stroke has made things harder. “I was already used to coping with CP, but this feels completely different.”

As Jazz adjusted to life after stroke, she would have liked more rehabilitation. 

“I was in hospital for about nine days, and I had speech and language support while I was there, but she didn’t really get too much physical rehabilitation afterwards,” 

Jazz believes maybe more rehabilitation and follow-up support would have helped her recovery and confidence in the early weeks after stroke.

She has continued attending speech and language appointments for swallowing difficulties but says navigating support services after stroke has felt overwhelming at times.

“When you’re new to all of this, you don’t know where to turn,” she said. “You just want someone to guide you through it.”

In the weeks after her stroke, Jazz reached out to the Stroke Association and was supported by Graham from the charity’s South East Hampshire Stroke Recovery Service for support.  

“Just having somebody reassure me and be there has helped a lot,” she said. She says speaking to others who understand stroke has become increasingly important. “Unless you’ve had a stroke, people don’t fully understand,” she explained.

For Jazz, some of the hardest struggles have been more emotional rather than physical.

“They warned me in hospital that stroke could affect me mentally and emotionally,” she said. “At the time, I thought, ‘No, I’ll be okay.’ But they were right.”

Doctors have carried out extensive investigations, including heart monitoring, blood tests and scans, but no clear cause has yet been identified.

Returning home after hospital was also overwhelming. “I actually felt safer in hospital,” she admitted. “When I came home, I kept thinking, ‘What if it happens again?’”

For Jazz, one of the biggest challenges has been adjusting emotionally to a life that suddenly feels uncertain.

“I used to be really confident and always out doing things,” she said. “Now I overthink lots.” Simple things she once did without hesitation can now feel overwhelming, particularly when fatigue and weakness suddenly appear.

“I think that’s one of the hardest things, not trusting your own body anymore.”

“I’m impatient with myself,” she admitted. “I want to get back to normal straight away, but my body won’t let me.”

At times, Jazz says she has felt isolated, particularly as a younger stroke survivor.

“When you’re young, people don’t really understand stroke,” she said. “Some people think because you survived, you’re automatically okay again.”

“I have bad days, but I’m trying to remind myself how far I’ve already come,” she said. “Recovery isn’t a straight line.”

Although surrounded by supportive family and friends, Jazz admits that some people struggle to understand the invisible effects of stroke.

“You look okay on the outside sometimes, but inside you’re struggling.”

She hopes to eventually regain enough confidence and strength to return to more activities she loves, including spending time around horses again.

“At the moment I’m just taking things day by day,” she said.

In the UK, someone has a stroke every five minutes

In the UK, someone has a stroke every five minutes, with 1.4 million people currently living with a brain injury caused by stroke. More than 85,000 people survive a stroke every year, but recovery is only the beginning. Many face a long and gruelling journey adjusting to the trauma and rebuilding their lives, often left without the essential long-term rehabilitation and support they need.

Despite the life-changing impact of stroke, awareness of its severity and the long-term challenges survivors face remains worryingly low amongst the general public.

Despite one in four strokes happening to people of working age, a third of Brits aged 18-34 (34%) and almost a quarter of 35-44 year olds (24%) believe they’re too young to have one.

The knowledge gap extends to the impact of stroke, with almost a third (32%) unaware that it is a brain injury and nearly one in five (19%) not realising it can cause long-term difficulties with walking, talking, seeing or swallowing. Almost a quarter (22%) underestimate the road to recovery believing it takes just a few months or less.  

The Stroke Association’s campaign ‘Survival is Not Enough’ aims to drive awareness of the impact of stroke and support a two-part documentary series commissioned by Channel 4, in partnership with the charity: ‘Trauma: My Broken Brain’. The series follows three young adults, Dan, Saskia and Dec, through the fight of their lives after a life-threatening stroke. ‘Trauma: My Broken Brain’ is available to stream on Channel 4.

Jacqui Cuthbert, the Stroke Association’s associate director for the South West and Channel Islands, said: “This new research shows that people still don’t understand a stroke happens in the brain and wrongly believe a stroke only affects older people.

"A stroke isn't only a medical emergency from which you either die or survive, but instead the start of a long and gruelling journey to rebuilding a life.”

1.4 million people are living with a brain injury caused by stroke. Help the Stroke Association change what comes next: www.stroke.org.uk/brain