Tag: stroke survivors

‘Lucky’ stroke survivor joins study led by the University of Edinburgh

~ Warning not to ignore subtle stroke signs just because they are uncommon ~ 

A stroke survivor is warning others to watch out for unusual symptoms after joining a study funded by the British Heart Foundation. 

Gordon Robb had a stroke involving a bleed in his brain, but his only symptom was finding that written words suddenly looked as if they were in a foreign language. 

The 63-year-old is now taking the drug clopidogrel, as part of a clinical trial run by researchers at the University of Edinburgh. This study will examine if clopidogrel or aspirin, which are ‘antiplatelet’ drugs that reduce the risk of blood clotting, can prevent future strokes, heart attacks and premature deaths in people who have had a haemorrhagic stroke – a stroke caused by a bleed in the brain. 

Gordon only discovered his stroke had happened after his cousin, whose husband had died from a stroke a few weeks earlier, insisted he go to hospital. 

Having first thought his sudden inability to read was caused by tiredness, he now describes himself as an ‘extremely lucky man’. He had none of the more commonly known symptoms of a stroke, such as problems with his face, arm, speech, eyes or balance.  

Difficulty recognising written words on its own, without any other symptoms, affects fewer than one per cent of people at the time of their stroke, say researchers. 

A few months on, Gordon’s symptoms are improving, although it now takes him half an hour to read a chapter instead of his previous 10 minutes, and more recently he has noticed he occasionally can’t find the right word during a conversation. 

Gordon said: “I am incredibly lucky, and quite honestly felt like a fraud in the stroke ward because I was no different to how I am normally, except that I suddenly could not read words. 

“A group of student doctors in neurology who were brought to see me even said they would have struggled to diagnose that I had had a stroke. 

“I knew some of the classic signs of a stroke like facial weakness, being unable to raise my arms or speech issues, but had none of these.  

“It just shows the importance of paying attention to unusual symptoms, even if they aren’t ones you have heard of before. If I hadn’t gone to the hospital, and quickly received treatment, I could have been walking around with a ticking time-bomb in my head.” 

The stroke survivor, from Bonnyrigg in Midlothian, had only been to hospital once in his life previously. A keen cyclist and runner, who had climbed to base camp at Mount Everest two years ago, he felt in perfect health. 

So when, on September 27 last year, he checked his emails and could not read them, he put it down to tiredness. 

Gordon, the former vice-president of a biotech company, said: “I was in the garden, went in to have a cup of tea, listen to some music and check my emails on my phone – and it was like they were in a foreign language. 

“I could see them clearly, and see who they were from, but the words meant nothing to me. 

“I just assumed I was tired because I had been up late the night before. When friends were then messaging me about the Ryder Cup that evening and I couldn’t see the messages, I just gave myself an early night.” 

 The following evening, when he was unable to read the instructions on a cash machine to withdraw money, he resolved to go to see his GP the next day. 

However, when he told his cousin – whose husband had died from a sudden stroke just three weeks earlier – she drove straight to his house and insisted on taking him to A&E. There, doctors told him he had had a haemorrhagic stroke. 

Approximately 15 per cent of strokes are haemorrhagic. The majority of strokes are ischaemic strokes, caused by a blocked artery. 

While in hospital, Gordon signed up to a study being led by Professor Rustam Al-Shahi Salman at the University of Edinburgh, which is called ASPIRING (Antiplatelet Secondary Prevention International Randomised study after INtracerebral haemorrhaGe).  

The international study is recruiting people who have had a stroke due to bleeding in the brain, also known as a haemorrhagic stroke. Study participants in the UK will be given  ‘antiplatelet’ medicines like clopidogrel or aspirin, which reduce the chances of a stroke or heart attack by preventing cells in the bloodstream, called platelets, from sticking together and forming a blood clot.  

Antiplatelet medicines are not routinely prescribed for people who have had a haemorrhagic stroke, because of safety concerns that they may increase the risk of bleeding. But a small study called RESTART, led by the University of Edinburgh and also funded by the British Heart Foundation, found aspirin and clopidogrel are safe after a haemorrhagic stroke.  

In this new larger study, researchers in the UK now aim to understand if clopidogrel or aspirin can reduce the likelihood of having future strokes, heart attacks and other clotting and bleeding problems in people who have survived a haemorrhagic stroke.  

Major clotting or bleeding problems occur in around one in 10 haemorrhagic stroke survivors every year.  

Professor Salman said: “It has been hard to overcome the instinctive fear that if people have had a haemorrhagic stroke, taking aspirin or a drug like it might cause more bleeding. So we were very relieved when our research showed such drugs to be safe after a haemorrhagic stroke.  

“The ASPIRING study will gather further evidence to establish if aspirin and clopidogrel can help lower the risk of future strokes and heart attacks, and potentially save the lives of people like Gordon who have had a haemorrhagic stroke.

“I believe there is a huge amount more to be done to help these people, whose lives have been turned upside down and who may be concerned about the future.” 

Gordon is one of more than 4,000 people worldwide set to join the study, which is also funded by the Dutch Heart Foundation, the Canadian Institutes of Health Research, the Research Foundation – Flanders and the Medical Research Future Fund in Australia. 

The study was endorsed by the Global Cardiovascular Research Funders Forum (GCRFF) multinational clinical trials initiative.  

Gordon said: “Being involved in this trial provides some reassurance, that this drug may reduce my risk of another stroke. 

“But it is also great to know that being involved could help improve treatment for people like me in the future, and relieve the pressure on the health system. 

“I feel extremely lucky that I did not have more long-term effects from my stroke, and that I have had the chance to try to help improve treatments.” 

Dr Sonya Babu-Narayan, the British Heart Foundation’s clinical director, said: “Facial weakness, arm or leg weakness and speech problems are well-known signs you or your loved one may be having a stroke, but there are some lesser-known symptoms like being unable to recognise the written word. 

“If you have a symptom that you feel is not right, however strange or unusual, it is really important to seek help. Every minute matters if you may be having a stroke or other medical emergency. 

“We know stroke survivors often fear having another stroke and how disabling this could be. That is why the BHF is funding clinical trials like ASPIRING, which will test whether prescribing antiplatelet drugs could protect more people.” 

The ASPIRING study is recruiting people from England, Wales and Scotland who have had a haemorrhagic stroke.

Volunteers can check their eligibility, depending on the hospital where they received treatment, and express interest by visiting www.ASPIRING.ed.ac.uk 

Hope ‘critical to recovery’ after a stroke

Hope after a stroke: Nearly a quarter of stroke survivors lost their job after their stroke with some even losing their home or partner – but having ‘hope’ is critical to recovery 

  • 23% of stroke survivors in Scotland say having a stroke cost them their job, with almost one in five saying it impacted their relationship and 5% even lost their home
  • Across the UK, over half of younger stroke survivors under the age of 50 say they have never emotionally recovered from their stoke 
  • Whilst 15% felt their first signs of hope after a month since having a stroke –a quarter did not feel any hope in over a year.
  • The Stroke Association calls for those who can to donate to give more survivors hope after a stroke

The practical, emotional and physical impact of having a stroke has been laid bare by a new survey of over 3,500 stroke survivors across the UK (220 respondents from Scotland), released today.

The research, conducted by the Stroke Association ahead of World Stroke Day (29 October), is part of a renewed call for vital funds to help the charity give more survivors hope after their stroke and help them to rebuild their lives. 

The impact on survivors in Scotland

The research reveals that 23% of those in Scotland who survived a stroke say it directly led to them losing their job whilst 5% say it led to them losing their home. 

Furthermore, almost one in five (19%) say it had a negative impact on their relationship.  It is not only relationships with partners that are affected – over one in ten (12%) say they lost friends as a result of having a stroke.  

Younger survivors more severely impacted

Looking at stroke survivors across the UK, the research reveals that the emotional impact of a stroke can impact younger survivors more severely. Amongst those under the age of 50, six in ten (60%) say that they’ve never emotionally recovered from the impact of their stroke. This compares to 44% for those over the age of 50. 

This is despite a similar number of younger stroke survivors under the age of 50 (52%) and over the age of 50 (50%) saying they have not physically recovered from their stroke. 

The importance of hope 

The research shows the importance and transformative power of feeling hope after having a stroke. Over three quarters of those surveyed in Scotland (77%) say that hope played an important or critical part in their recovery. 

But for many, it was not a quick process. Whilst 15% say they began to feel hope after a month since their stroke, a quarter (25%) say it took more than a year to experience what they felt was the first sign of hope. Meanwhile one in ten (11%) say they have never felt hopeful since they had their stroke – demonstrating how strokes can impact survivors differently. 

The Stroke Association helps people to find the hope they need to rebuild their lives through specialist services, including a Helpline, peer support service, support groups and Support Coordinators.

Louise Copland, 36 from Glasgow, had her stroke six years ago.  The effects of her stroke were dramatic.  She couldn’t walk or talk.   

She said: “At the time I was terrified, I had no idea what was going on, but I got the impression it was a big deal, which made me very anxious.

My family and the physiotherapists were marvellous.  I’ll never forget standing up for the first time.  It felt weird and I was dizzy, but it was exhilarating. I had to call my parents to give them this fantastic news and they immediately got in the car to go to the hospital and share my happiness and excitement.  This was my first moment of hope that there might be light at the end of the tunnel.

I was due to get married two months later and was determined to walk down the aisle with Dad. I focused all my attention on being able to walk again. I did it.  This was the biggest moment of hope I’ve had since my stroke and it gave me the impetus to carry on.

But Louise knows she probably won’t ever recover emotionally after her stroke.

“I wake up every morning with an arm and leg that don’t work like the way they did.  I fear the challenges in forming new relationships – my confidence has been dashed and people do judge you for having a disability which is demeaning.

Louise continues to find moments of hope and lives her life to the full.  She would have been lost without the support of friends and family.  She now attends a stroke club where she gets to meet others in a similar situation to herself.

“The people I meet at the café are so welcoming.  They understand the issues I’m dealing with, because they are dealing with them too.  It’s important to find hope in others.  It’s important to ask for help when you need it and it is out there.  There is hope after stroke.”

Big and small moments of hope

The research found that it can be both big and small moments of hope that are important. When asked what gave them their first moment of hope after a stroke, nearly one in five, (19%) said it was being able to use their affected side for the first time and 11% said it was being able to speak again. However, one in ten (10%) said it was being able to complete a small every day task such as making a cup of tea.  

Reevaluating what is important after a stroke 

The impact of a stroke leads many to reevaluate what is important in life. Over half (54%) say having a stroke made them appreciate their life more, 43% say it made them appreciate their family more and 42% say it made them appreciate the importance of looking after their health.  

John Watson, Associate Director Scotland at the Stroke Association said: “Every five minutes, someone in the UK will have a stroke and, in a flash, their life is changed.

“There are more than 128,000 stroke survivors living in Scotland and two thirds of people who survive a stroke find themselves living with a disability. The physical impact of a stroke is severe, but for many, the emotional aspects of coming to terms with having a stroke are just as significant.

“As the research makes clear, finding hope is a crucial part of the recovery process. Without it, recovery can seem impossible. 

“At the Stroke Association, we support and help people to find this hope, and rebuild their lives. But with 1.3m people and rising in the UK now living with the effects of a stroke, our services have never been more stretched. We urgently require the support of the public to help us continue to support stroke survivors to rebuild their lives.”

The Stroke Association is asking those who can to donate today so that it can reach more stroke survivors and give them the specialist support they need to find hope and move forward with their recovery. Visit stroke.org.uk/hopeafterstroke  

People with lived experience have their say on stroke research

The Stroke Association, the UK’s leading stroke charity, is announcing the top 10 priorities for stroke research, uncovered by a study involving stroke survivors, carers and health and social care professionals in stroke.

The charity’s new report – the first UK-wide project to map research priorities across the entire stroke care and treatment pathway – reveals where research can address the issues holding Stroke Association survivors back from rebuilding their lives after a devastating stroke.    

John Watson, Director Scotland of the Stroke Association said: “One in five people will have a stroke in their lifetime. Stroke happens in the brain, the control centre for who we are and what we can do. 

“Every stroke is unique because the brain is so complex and stroke can happen in any part of it. This means there are as many different impacts of stroke as there are stroke survivors, posing a huge challenge for research. 

“According to the most recent figures from the UK Medical Research Council, only £30m of public and charity health research spending goes on stroke. This equates to less than £25 per stroke survivor per year compared to £161 per person living with cancer. 

“Despite major breakthroughs over the last 10 years, we now know where there are significant blind spots in treatment and care. These are holding people back from rebuilding their lives. With the number of people having strokes set to rise – it’s estimated that the number of stroke survivors in Scotland could rise to almost 175,000 by 2035, [3].  We must act now and invest in the research that will make the biggest difference to the lives of people affected by stroke.”  

Keen endurance athlete, Andrew (Andy) aged 48 from Perthshire had a stroke in 2019 – he knows only too well the burden of stroke and gaps in stroke research that matter to people affected by stroke.

Andy said: “Stroke research is important to me.  There are many effects of stroke including fatigue and the psychological consequences of stroke that we should know more about. 

“We need to involve people with lived experience of stroke in decisions around stroke priorities to inform researchers and funders about what really matters to us. We know what our difficulties are, and I believe further understanding of those difficulties is a good step towards finding treatments and solutions to enable people to live the best possible life they can.”

Over 1,400 people affected by stroke and professionals in stroke took part in the project, which was carried out in partnership with the James Lind Alliance (JLA), as well as individuals and organisations representing stroke patients, carers and professionals in stroke. 

The Stroke Association is sharing the findings as part of its new report “Shaping Stroke Research to Rebuild Lives: The Stroke Priority Setting Partnership results for investment.” 

The report sets the agenda for stroke research and identifies the areas that most urgently need investment.  There are two lists of 10 priority areas: the first in stroke prevention and acute care, and the second in rehabilitation and long-term care, ranked in order of importance.  

The top priorities in each list are: 

  • Interventions to stop stroke. Stroke strikes every 5 minutes in the UK, but we know that most (80-90%) strokes are preventable [4]. We need increased investment in research so people can avoid the devastating effects of stroke in the first place. 
  • Understanding of, and treatment for mental and emotional problems. Three quarters of stroke survivors experience a change in their mental health [5], we need research so that people can overcome significant effects such as anxiety and depression after stroke.  

Dr Rubina Ahmed, Director of Research and Policy at the Stroke Association, said: “Charities like ours need to look for new ways to help stroke survivors with emotional, mental and communication problems. 

“Establishing what research will make the biggest difference to stroke survivors and those caring for them is just the first step. Stroke research is severely underfunded.  Just £1 in every £100 of public and charity spend in health research is on stroke and this just isn’t enough to solve the big and complex issues caused by stroke. 

“The stroke funding crisis has been worsened by the coronavirus (Covid 19) pandemic, which has had a devastating impact on our income, halving the charity’s research budget.  Stroke research is at risk, which means recoveries of people like Andy are at risk too. Your support can fund the research that will lead to breakthroughs in treatment and care. If you can, please donate so that we can make sure more stroke survivors can rebuild their lives after stroke.  

“We would like to thank everyone who took part in this project: stroke survivors, their carers, professionals in stroke, the James Lind Alliance, the Steering Group members and our partners. By having your say for stroke, you have helped to shape stroke research to rebuild lives.” 

Over the past 30 years the Stroke Association has played a crucial role in supporting stroke research in the UK. By establishing these priorities our charity can support the research that can make the biggest difference to the lives of people affected by stroke.  

Find out how stroke research helps rebuild lives at stroke.org.uk/rebuildinglives or to donate, please visit: stroke.org.uk/saveresearch 

To read the full list of priorities and the report visit: www.stroke.org.uk/psp  

Charity funds first study into long-term impact of Covid-19 on stroke

The Stroke Association is funding the world’s first study to determine the long-term impact of Covid-19 on stroke survivors. 

Since the start of the Covid-19 pandemic there have been widespread reports of adults with the virus also having strokes. The charity announces this new study today, amid concerns that the virus may be causing more severe strokes in patients whom doctors are struggling to treat.  

It is thought that the virus could be increasing the chance of blood clots forming in the brain and blocking blood flow.

The Stroke Association is funding this vital research to investigate the difference the virus could make to stroke recoveries, which are already at risk due to disruption to stroke services caused by the pandemic.  

The study will establish which differences in patients with and without the virus may influence their needs for treatment and care, including how to avoid the risk of having further strokes. 

Researchers at University College London Hospitals NHS Foundation Trust (UCLH) led by Dr Richard Perry will follow up to 4,000 stroke survivors, with and without Covid-19 from across 13 emergency stroke units. 

Stroke recovery, rehabilitation and health will be tracked for up to 18 months after their stroke. Researchers will collect and assess comprehensive, specialist medical information from stroke patients, including brain scans, blood samples and measures of disability. 

The findings will help to understand how Covid-19 impacts stroke recovery and which treatments might best support survivors’ recoveries. 

Dr Terry Quinn at the University of Glasgow works with the UCLH team on their Covid-19 and stroke research. Hhe said: “Research that compares stroke in patients with and without Covid-19 is essential to understand if Covid-19 results in more severe strokes, where survivors will need more support to recover from its devastating effects. 

“From the beginning of the pandemic, I would see patients admitted with unusual strokes, who would then go on to have a positive Covid-19 test. This vital research will help us understand why this happens.  

“The findings from this year-long study will inform decisions about the most effective treatment and the rehabilitation needs of this group of patients, including prevention of recurrent stroke. We already know that from the moment a person has a stroke or mini-stroke they are at substantial increased risk of further strokes. 

“We’ve come a long way since the start of the pandemic. In the early days of the pandemic, stroke teams from across the UK came together to share their experiences and data. I was part of this collaborative activity and the exchange of information was crucial for delivering the best possible stroke care.

“This work had no external support and was reliant on busy clinicians giving up their time.  Stroke clinicians will continue to engage with the new project, but the Stroke Association funding will allow us to achieve things that would not be possible without this support.” 

Stroke is a sudden brain attack, stroke strikes every five minutes in the UK, and there are more than 128,000 stroke survivors living in Scotland. It’s estimated there will be around 173,000 by 2035.  

Dr Rubina Ahmed, Research Director at the Stroke Association, said: “Stroke is a leading cause of adult disability in the UK and the second biggest killer in the world. It’s extremely concerning that we’re seeing strokes happening in ways we have not seen before.

“This research is absolutely critical in understanding and treating stroke after Covid-19, to help reduce the devastating effects and ultimately improve lives. Covid-19 is here to stay, so it’s vital we can prevent and treat strokes linked with the virus. 

“The pandemic has shattered our fundraised income and is threatening research that drives life-changing breakthroughs in stroke care. As a result of the pandemic, we have had to halve our budget for stroke research. 

“Research improves treatment and care for people affected by stroke so they can live their best lives possible, and that’s why stroke research is worth saving. Now more than ever, we need the public’s support. If you can, please help us find a way through the research funding crisis by donating today, so that we can fund more life-saving research.”  

In February, the Stroke Association announced the world’s largest study to confirm if Covid-19 increases the risk of stroke and by how much. Together with the new research announced today, the two studies will help doctors to prevent and best treat Covid-19 strokes in the people who are most at risk.  

Over the past 30 years the Stroke Association has played a crucial role in supporting stroke research in the UK. Research helps stroke survivors rebuild their lives, but the pandemic has hit research hard. By saving stroke research, more sure stroke survivors can live life to the full. 

Find out how stroke research helps rebuild lives at stroke.org.uk/rebuildinglives or to donate, please visit: stroke.org.uk/saveresearch