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‘Confront your fears and do what you love – or you never will’

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Louise Hulbert - stroke survivor and author of From Burgos to Bedroom Floor and Back Again

Only 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.

“We walked from St-Jean-Pied-de-Port to Burgos over three weeks, it was a great adventure, the latest of many, with many more set to come,” recalls Louise.

But shortly after returning to her Essex home, the adventure turned into a nightmare when Louise, a former PE teacher and lover of activity, woke up one morning on her bedroom floor, with no memory of how she had got there.

She had no feeling in her left arm or leg, and couldn’t get up from where she found herself. She lay there for several hours until she was found and rushed to hospital.

“It was absolutely terrifying. It was so unexpected and there was no symptoms of this beforehand, no warning. It never entered my head that someone as fit and healthy as me, who had been walking 15 miles a day only a few days earlier, could be having a stroke,” says Louise.

But that was the reality. Unbeknown to Louise, she had a blood clot which blocked the middle cerebral artery and cut off the oxygen supply to the right side of her brain.

A four month stay in hospital followed, which, says Louise, “felt like a lifetime”.

“I’ve always been so active and I just wanted to be up and about, back home and living my life. But that wasn’t something I could just go back to, sadly,” she says.

After being discharged, initially in a wheelchair, Louise had daily physio and occupational therapy for ten weeks, which enabled her to walk again with the aid of a stick.

“I think probably the worst bit of it all was that initial phase when I came home and I couldn’t get up and walk, I couldn’t get around my own house, I couldn’t even go to the loo on my own,” says Louise.

“To lose your sense of autonomy is absolutely dreadful.”

And while Louise pushed herself to be able to walk again, the psychological benefits were much more difficult to overcome.

“Looking back now, I realise how much I struggled,” she recalls.

“I totally lost all of my confidence and self esteem. I felt like a useless lump and a complete burden, a shadow of the woman I had been prior to the stroke.

“I lost the ability to make any decision for myself about anything. It could be that someone would phone and ask if I wanted to go out shopping, and I would defer to my partner for a decision.”

Walking was something Louise was determined to return to, and having been up and about with the aid of a stick within her first 10 weeks of being at home, she continued to challenge herself.

“I wanted to get back into walking outdoors, for me that would be a huge achievement and a big step forward as I love it so much,” she says.

“I live next to a country park and challenged myself to go a bit further every day. Over time I built up to being able to walk for half an hour, and by the end of the first lockdown I was walking for two hours each day.”

Setting goals was crucial for Louise in her recovery, enabling her to increase the targets as she progressed.

“I’ve inherited a very strong work ethic from my family and I don’t give up easily, I’m continuing to push what I can do. I’ve also had constant support and encouragement from my partner, which has been hugely important,” she says.

“I think you have to confront your fears and find a way of doing the things you love – or else you won’t.

“About five years after my stroke, I completed a 5k charity walk in Spain, which was the furthest I had walked since before it happened. I trained hard for it, like you would in any sport, and that was a big milestone for me.

“I now want to go back to El Camino and do another section of it by the time I’m 70, which is another challenge I have set for myself.

“I’m also driving on my own again. For a long time I wouldn’t have had the confidence to do that, but I took a dog soft toy with me which I found a great comfort. It helped me to regain some of my independence, which has been another big step.”

Now six years on from her stroke, Louise’s confidence is a “work in progress” but is building all the time through her volunteering work on the stroke rehab ward at King George Hospital in Essex, as well as with Stroke Rehab Dogs.

“It has helped me enormously. Working with fellow stroke survivors has been really important, and I also feel like I’m making a contribution, giving something back,” she says.

And from her huge strides forward in her physical and psychological recovery, the idea for Louise’s book was born. By sharing insights online with her Stroke Rehab Dogs group during lockdown, the charity’s director suggested she should make them into a book.

“I’ve never had any literary ambitions, so had never thought about writing a book at all, but it did seem to make sense the more I thought about it,” she says.

From Burgos to Bedroom Floor and Back Again is now available from major high street and online retailers, and is raising vital funds for three causes close to Louise’s heart – Canine Partners, Stroke Rehab Dogs and ARNI.

“It has been a very cathartic experience,” she says.

“Some days I’d finish writing on a real high, whereas others I would feel quite depressed. But it really helped me to process and understand what had happened, particularly psychologically.

“But the main motivation has always been that I want to help other people who find themselves in the situation I did. I want to help them find the inspiration to keep going, no matter how hard it seems.

“There are bad times, but it need not always be that way. By setting goals for your ambitions, and finding the strength to help yourself achieve them, you can reclaim your life.”

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“I wouldn’t wish it on anyone, but I’m glad my brain tumour happened in a way”

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Helen and Megan have both experienced cancer in different forms

After Helen Bulbeck’s daughter Megan was diagnosed with a brain tumour, the whole family was left isolated with little to no support. Now she is using this experience, plus her own journey with cancer, to help run the UK’s leading brain tumour support charity Brainstrust.

“It was at the time when Rohypnol was doing the rounds in the local pub, so I just thought maybe her drink had been spiked.”

This was Helen Bulbeck’s initial reaction to her daughter, Megan, collapsing after a night out and being omitted to A&E in 2006.

She later realised that it was the start of a lengthy battle, as MRI scans revealed Megan had a brain tumour.

To complicate matters, surgeons opted not to operate unless the tumour showed signs of developing.

And so began Megan’s monthly brain scans, all while she was completing a History of Art degree.

“University was where Megan’s priorities were,” Helen tells NR Times. “The main focus at that point was to get her epileptic episodes under control.

“We weren’t referred to a neurosurgeon until the following January – that’s six months after her first episode.

“We were completely out of our depth; we had no idea what was going on. We had been told in October that she had a brain tumour, but that was it.”

It was the lack of available support that really concerned and surprised Helen.

“There was nothing,” she says, when asked about the help they received after Megan’s diagnosis. “We were just left in a vacuum.

“That’s what I couldn’t understand, because if you’re diagnosed with breast cancer, you’re assigned a clinical nurse specialist. We didn’t have that.

“I spent a long time on the internet trying to find where the support and information was and I desperately needed to talk to somebody about the impact that this diagnosis had, but there was nobody.”

Helen was left on her own in search of a solution for Megan, spending countless hours learning more about brain tumours and possible treatments.

This led her to discover neurosurgeon Peter Black from Boston, who agreed to operate on the tumour after a consultation.

The severity of brain tumours is graded from one to four. Black was the first surgeon to tell Megan she had a grade two tumour, but it could transform into a higher grade within five years, with the consequences being potentially fatal.

With that in mind Megan decided she would have the tumour removed. Because of the risks involved with the surgery, however, the procedure was delayed until after she had finished her studies.

Through all this Helen was fighting her own battle after being told she had head and neck cancer.

She quickly underwent radiotherapy and surgery, knowing she needed to stay strong for her daughter.

“I was just focused on getting fit so that I could go with Meg to America for the surgery.”

Helen was able to make a full recovery, but then faced the challenge of funding Megan’s £30,000 surgery.

Megan’s group of friends were desperate to help and agreed to do some fundraising, eventually smashing their target and generating £70,000.

After this, things finally started to run smoothly. Megan was able to finish her degree and successfully underwent surgery in 2007 which saw her tumour removed.

“We had such a good story and we’d learned so much,” Helen says. “We thought we’ve got one of two options; we can either go back to our lives as they were and donate what we’ve got left to another charity. Or we can use those funds to set up a charity which was going to close the gap in the marketplace.

“Who do you turn to the day you’re told you have a brain tumour? There’s nobody out there and we didn’t want people to feel as lost as we did.”

From this Brainstrust was born.

Starting off simply as a helpline, the charity has evolved into a support trust with UK-wide reach, developing communities to reduce isolation, build resilience and enable people to live the life they want.

It focuses on providing evidence based information around brain tumours and its support specialists can point people to the correct resources, without forcing anything upon them.

“The only other charities that existed at that time were all to do with lab-based research, there was no charity out there where you could pick up the phone and ask for help.

“Because we have that experience, we knew what the information was that people would want to hear.

“Meg and I knew what it meant to be both a patient and a caregiver, so we used that 360 degree perspective to support others.”

Since then Brainstrust has gone on to support thousands of patients and their families.

The vast majority (93 per cent) of those that contacted the charity reported a positive outcome, with nearly 1,000 new patients engaging with it in 2019.

Since its founding in 2006, care around brain tumours has drastically improved.

It is the most common form of cancer that affects those under 40 and it is one that is rising at the fastest rate in over 65s.

Discussing how attitudes to brain tumours have changed, Helen says that new technologies can lead the way to better outcomes.

“Your first line treatment with a brain tumour should always be, where possible, neurosurgery. That was what saved our daughter’s life.

“I think the technology is absolutely key and probably until the last five years, that’s been hugely ignored, but it is catching up.

“In terms of the actual therapies, I think with radiotherapy we’ve made huge advances.”

Despite this progress, Helen says there are still huge differences between the treatment of brain tumour patients and those with other cancers and conditions.

She draws on the example of post-stroke rehab and the general care stroke survivors receive.

“Stroke patients get a wonderful wraparound reablement service and I’d love to see brain cancer having a parity.

“I find that some of the attitudes are a bit nihilistic, as in if you’re diagnosed with a glioblastoma people tend to see this as life limiting with a poor prognosis so it’s not worth investing in. I think it absolutely is.

“That’s the one thing I would love to be able to transform, the day somebody has a brain tumour,
they immediately get that same wraparound care.”

Megan is currently living a happy and healthy life since her surgery, being able to get married and gifting Helen with two granddaughters.

She still undergoes regular brain scans and, after becoming a qualified coach with Brainstrust, she is now training to become a psychodynamic psychotherapist (a discipline involving the interpretation of mental and emotional processes rather than focusing on behaviour).

Reflecting on her journey Helen describes her pride in the work they had done so far, but admits there is still much work to be done.

“It’s been a highly emotional rollercoaster at times, we get very tired but it’s not a job it’s a vocation.

“It’s important not to forget that before we’re patients, we’re people and I think the more we can get clinicians to recognise that sitting in front of them is a person not a patient, then that person is going to be much more resilient.

“Just hearing the testimonials of the impact that our work has had is what keeps us going.

“I will always remember Meg saying to me ‘I would never wish a brain tumour on anybody, but in a way I’m glad this has happened because of what we’ve achieved.’”

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Loneliness in lockdown – how have survivors been impacted?

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Loneliness in lockdown among brain injury survivors is the subject of a new research study which hopes to shine a light on the ongoing issue of isolation. 

While loneliness for the wider population was something rarely previously experienced prior to the COVID-19 pandemic, for those living with a brain injury, the everyday reality is often very different. 

And through this new study, researchers hope to discover the true effect the pandemic and its necessity for survivors to stay at home – and in some instances shield for several months – has had and how their protective factors have impacted on that. 

The project, by the University of Sunderland in conjunction with Headway, is currently gathering participants for its pioneering research, which will compare the experiences of people living with brain injury to those without. 

Led by Dr Stephen Dunne, who has a long-standing research interest in social factors which affect brain injury and stroke survivors, he hopes it will both raise awareness of the ongoing issue of loneliness many people face, as well as helping to inspire action.  

“There is a dual focus to this project – loneliness is something known to the masses now more than ever before; it’s not just something felt by a particular part of the population. For a neurotypical individual, I think it has shown what life can be like to be lonely in ways they may never have known previously. 

“An important point of our research is to try and understand how, for people with brain injury, their loneliness and their perceptions of loneliness have been affected during the pandemic – has this been heightened over the past year and been exacerbated by lockdown? 

“Or have they actually felt less lonely than neurotypical individuals, as they have had the experience pre-pandemic of adapting to life like this, and already have the support strategies in place?

“But crucially, the future of this project isn’t to define loneliness, understand its impact, then drop it – we want to understand it so that we can facilitate the removal of barriers so we can bring about strategic improvements to the wellbeing of people living with brain injury.” 

Dr Dunne and his team are seeking brain injury survivors nationally to take part in the research, which will be done by a survey: https://sunduni.eu.qualtrics.com/jfe/form/SV_czH5B8R5kieDgQR and an optional additional interview with the team remotely via Microsoft Teams. 

“We’re at a crucial stage now where we appear to be coming out of restrictions, but the experiences of the past year are still very real for so many people,” adds Dr Dunne. 

“We want to do this at the right time, before reintegration into society starts to happen and we are looking retrospectively, so we’re keen to hear the experiences of as many people as possible.

“We want to better understand loneliness and its impact, so we can help to bring about change for the future. Understanding the journey of brain injury survivors over the past year is a key part of us being able to do that.” 

For further information about the research study, or to share experiences through an interview with the research team, contact Stephen.Dunne@sunderland.ac.uk

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Temporary concussion substitutes ‘must be introduced by June 1’

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Temporary concussion substitutes must be included in the current trials underway in the Premier League to safeguard the safety of players, players’ unions said today. 

FIFPRO and the PFA have called for the introduction of temporary substitutes no later than June 1, and for the scope of the 18-month trial – which enables a team to replace a player who has sustained concussion, but on a permanent basis – be extended to include parallel trials for temporary substitutions. 

In an open letter to IFAB, football’s lawmakers, FIFPRO – which represents over 65,000 professional footballers worldwide – and the PFA highlighted the cases of West Ham United’s Issa Diop and Sheffield United’s George Baldock in making their case. 

“Player safety and welfare is paramount, and should be the only priority,” they say in their letter. 

While both bodies were supportive of the permanent concussion trials when introduced, such incidents – added to the new FIFPRO poll, which shows 83 per cent of 96 professional football club doctors at top-flight European club believe temporary substitutes should form part of future protocol – have shown that action needs to be taken. 

“In England, since the trial began, we are aware of two incidents where a temporary substitution option would have better protected players,” states the letter. 

“In each case, the players suffered from a head injury but, following an initial on-field assessment, continued to play. They were subsequently removed when it emerged their head injury was worse than first thought.

“These cases underline our concern that permanent substitutions do not give medical teams the appropriate environment to assess a player with a potentially serious head injury.

“The reality of the in-game situation is loaded with pressure. Medical teams can be presented with a situation where a globally broadcast match is on hold, awaiting their assessment. They have to make a potentially game-altering decision in a multi-billion-pound industry.

“We have no doubt medical teams act in the sole interests of the players. However, the rules do not do enough to support medical personnel. Pressure on them will be amplified with the return of crowds.”

The letter states that the inclusion of temporary concussion substitutions, which they propose should be tested in parallel with the current trial, will:

  • Provide medical teams with additional assessment time
  • Allow for the assessment to take place in an appropriate environment
  • Permit a match to restart with neither side numerically disadvantaged
  • Reduce pressure on players and medical staff to make quick decisions.

“In December 2020, we welcomed the decision by IFAB to invite competitions to trial permanent concussion substitutions,” FIFPRO and the PFA state.

“At the same time, we have remained in favour of testing temporary concussion substitutions. This has been our position for many years.

“Since the beginning of IFAB’s permanent concussion substitute trial, we have seen several incidents where the new laws of the game have fallen short of their objective and jeopardised player health and safety.”

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