Dancing on Ice Star Opens up About Stroke Stephen Lee, Photographer @ Red Box Studios

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Autumn 2019 Let’s Headway talk tech News Music The magazine of Headway - the brain injury association after brain injury Dancing On Ice star opens up about stroke Stephen Lee, Photographer @ Red Box Studios

Headway is the leading UK-wide charity that supports people to rebuild their lives after brain injury through the provision of information and support services across the UK. To ﬁnd out more, visit www.headway.org.uk or you can call the freephone helpline on 0808 800 2244 if you need support.

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Can tech help? Published quarterly by: We truly live in the digital Our interview with Chris, on page 10, age. A time where you can explores all the great work he is doing as Chair of the All-Party Parliamentary Headway - the brain injury association, order a weekly shop on Group for Acquired Brain Injury in Bradbury House, 190 Bagnall Road your computer, video call Westminster and what the group’s Old Basford, Nottingham NG6 8SF your relative on the other future plans look like. side of the world, or speak Elsewhere in this edition, we look Freephone helpline: 0808 800 2244 to a virtual assistant in the at the dangers of carbon monoxide corner of your living room poisoning, ﬁnd out how a young Advertising: Anna Kerr: 0115 924 0800, couple’s relationship was affected [email protected] to ﬁnd out tomorrow’s by brain injury and also hear from weather. Dancing On Ice star Alex Murphy. Website: www.headway.org.uk Technology is transforming every Alex is sharing her story to raise aspect of our lives and in this issue of awareness of how strokes can hit at Telephone: 0115 924 0800 Headway News we focus on what that any age. Make sure to look out for her could mean for brain injury survivors when the new series of the ITV show Headway relies on voluntary contributions to and their loved ones. begins early next year. fund its work. To make a donation please call our fundraising team on 0115 924 0800 or Our feature, on page 14, highlights make a donation online at: gadgets that help you remember, The Communications Team apps that guide you around town and even software that enables you www.headway.org.uk/donate to communicate. However, it also explores some of the negatives to all this technology.

We also report on an exciting event Disclaimer which took place at one of our groups in Suffolk that brought Advertisements in Headway News are together experts to explore the tech accepted on a commercial basis. By options available to support brain publishing an advertisement, Headway does injury survivors in rehabilitation and not indicate endorsement of the product long-term care. or services provided by the advertiser. The issue of making sure brain injury The views expressed in articles or letters survivors receive the best possible reproduced in this magazine do not care is one that Chris Bryant, MP for necessarily represent Headway policy or Rhondda, is extremely passionate the views of Headway’s Board of Trustees. about too. They are primarily intended to provide the broadest possible views from which readers may form their own opinions.

The magazine of Headway - the brain injury association

Registered with the Charity Commission for England and Wales (Charity No 1025852) and the Ofce of the Scottish Charity Regulator (Charity No SC 039992). I can’t manage the bus without Your noise cancelling headphones and music.sounds. Way too many

views... Gail Coleman Public transport can be a lifeline for many people, granting independence and freedom. However, the effects of a brain injury can I can remember the first time I went present challenges. We asked for your views on on the bus on my own, my anxiety was using public transport following a brain injury: through the roof but I managed to keep calm. I wrote down on my phone little positive notes that I am able to do this just like everyone else.

I absolutely love public transport, I have a disabled person’s rail card and a bus pass,

I use both regularly. Georgie Louise Smith

Holly Catching the bus is my Robinson main way of independence. One thing I find useful is to write down bus/train times and alternatives should one be missed. Writing downget the off route at the also wrong helps stop. so that I don’t

Kev Demery

Anon

I always ask for the driver to ensure It is essential. For me, just he sees me seated before moving off. being able to get to the bus When ready to get off, I wait for the stop was the first major bus to totally stop before I get out of milestone in the recovery my seat. process.

Freya Perry Pete Hurford ...in this issue

Concussion in the spotlight Interview with MP Chris Bryant 07 10 Let’s talk tech My Story: #HeadwayHeroes Dancing on Ice star 14 Alex Murphy Carbon Monoxide 18 20 27

News you may have missed 06 Surviving stroke: Dancing on Ice star 20 opens up Politics MP Chris Bryant MP talks 10 about his work to raise ‘Music makes me feel awareness of ABI more confident about my 22 life in the future’ Let’s talk tech 14 ‘My injury has definitely brought me and my girlfriend 24 closer together and The hidden danger of solidified our bond.’ Carbon Monoxide 18 #Headway Heroes 27

0808 800 22 44 Autumn 2019 www.headway.org.uk 05 news you may have missed... Brain injury brings MPs together

MPs from across the Members from Scotland, Wales, On rehabilitation, she said: “I will discuss House of Commons came Northern Ireland and England took part in with NHS England what it is thinking, the debate, demonstrating the UK-wide what it is doing on the [rehabilitation] together to show their support there is for those affected by audit and what the next steps are. We support for brain injury acquired brain injury. need to impress on it the importance of survivors in recent debate. bed provision... I hope that today’s debate Seema Kennedy MP, the Minister has demonstrated how seriously this Chris Bryant MP secured the debate for Public Health and Primary Care, Government and this Minister take ABI (you can read our interview with Chris responded for the Government. and the devastating effects it can have on page 11) and raised the issue of on our constituents.” rehabilitation.

Newport West MP Ruth Jones drew on her professional experience as a physiotherapist before her recent election to Parliament, saying: “Research in the ﬁeld of neuro-plasticity clearly indicates that recovery can go on for weeks, months and even years after an assault or trauma. “It is therefore vital that our rehabilitation services can match that, so they must be available for weeks, months and years after the incident. In the later stages, somebody may not require treatment, advice and support every day, but it should be available for them to access when they need it.”

Headway 06 News The date for next year’s Hats for Headway Day will take place on The theme for the week will be Action for Brain Injury Week Friday 15 May and once again provide announced in due course, so keep an a fun way for people to get involved and eye on our website or our social media has been announced and will raise money to support either UK-wide or pages for further information. run from 11-17 May 2020. local Headway services. www.headway.org.uk and @Headwayuk

Concussion in football back in the spotlight

A new study has revealed and total shots after concussion was new tunnel doctor and annual baseline that Premier League reduced in all outﬁeld positions for testing, and how players have been players in the Premier League. working with researchers trying to players who sustained a develop a pitchside concussion concussion earlier in the For the MLS players, there were no diagnosis tool. season went on to suffer signiﬁcant decreases in performance. from a dip in performance. The Premier League was not involved IN IN J BRA UR with the study, but has stressed how E Y H A The research, published in the T S new concussion protocols were - S O American Journal of Sports Medicine, Y introduced in 2014 that included a C A I relates to a 10-year comparison A W

of the incidence of sports-related I O

A N concussions between 2008 and 2017 E in the English Premier League and the H United States’ Major League Soccer CONCUSSION (MLS). AWARE The MLS players were found to have #ConcussionAw are missed an average 7.3 games after a concussion (over a period of 37 days) compared to an average 0.6 games (over a period pf 10.9 days) for Premier League players.

Statistical performance in relation to games started, assists, shots on goal, 07 news you may have missed... Renewed calls for boxing ban following deaths

“So long as the ultimate objective of Headway has again called Headway’s Chief Executive for boxing to be banned after boxing is to render your opponent Peter McCabe senseless by repeated blows to the head, the loss of two young lives in then boxing will remain a dangerous recent weeks. activity.

28-year old Maxim Dadashev and 23-year “In the words of Maxim’s own trainer old Hugo Santillan both died following Buddy McGirt after the ﬁght “He seemed brain injuries inﬂicted while in the ring. OK, he was ready, but it’s the sport that we’re in. It just takes one punch. Headway’s Chief Executive Peter McCabe featured live on Channel 5 News “Te time has come for boxing and was quoted in a number of national newspapers calling for the so-called to be banned.” ‘sport’ to be banned.

“We are saddened to hear of this tragic loss of life and our thoughts go out to Maxim’s and Hugo’s family and friends,” said Peter. “Suggestions that boxers understand the risks or that such tragedies are unpredictable are simply not credible. Young boxers are not provided with the information to make an informed choice.

Headway 08 News Working together Government to improve financial services watchdog for people with issues hidden ABI Headway is pleased to have been consulted on a research project disability run by think tank Demos and consumer protection charity Cifas.

The report, Protected by Design: New Fraud warning Protections for People at Risk, was launched on 1 July 2019.

Speaking at the launch event, Headway’s Headway has welcomed “It can be difficult for Chief Executive Peter McCabe said: “Finding an announcement by the people to navigate complex more ways to support people with brain injuries to live independently, and helping Local Government and council procedures, yet in families and carers to support them safely, is Social Care Ombudsman all three cases, the councils important. on hidden disabilities. were made aware that these “Managing money can be one area where The ombudsman, which looks people needed additional effective support can make a big difference to into complaints about local help, but none was given.” people’s lives. authorities, is now urging councils Headway’s Public Affairs Manager, “It is important that providers of financial to check their procedures to Dr Clare Mills, said: “We have services realise the huge variations in avoid disadvantaging people seen greater understanding of people’s preferences and abilities after brain with ‘hidden disabilities’ following hidden disabilities in frontline injury. No two brain injuries are the same the publication of three separate services, such as the extension but providing personalised financial services investigation reports into London of Blue Badges to cover hidden may help to address people’s individual councils. disabilities, but organisations must needs. We are very keen to test how the The cases highlighted by the ensure that other procedures are recommendations from this project can work ombudsman all show councils not non-discriminatory.” in practical terms. doing enough to enable someone “The complexities of brain injury make to use their services. They include protecting vulnerable people from financial not making reasonable adjustments fraud a challenge. Effects such as impulsivity to help a woman with autism to and a lack of insight are common, while repay overpaid housing benefit, the difficulties in defining mental capacity, and two councils not helping a man particularly with fluctuating conditions with severe dyslexia to deal with such as brain injury where survivors are parking tickets and permits. significantly affected by fatigue, are well In a statement, Local Government known. and Social Care Ombudsman “We welcome the involvement of Cifas and Michael King said: “The Equality Demos in addressing this important but Act 2010 requires councils to complex issue.” anticipate the needs of people who may need to access their services. The report makes a series of This means when councils are recommendations which cover defining alerted to the fact someone might vulnerability, the development of protective need to be treated in a different products and services, way, they should ask that person identifying people who could what adjustments are needed, benefit, and cross-sectoral and consider whether these are working. 09 reasonable. Special Feature Speaking up for brain injury survivors Chris Bryant MP explains why he is passionate about raising awareness of ABI in Parliament.

Headway 10 News enough was being done to ensure MP for Rhondda players and coaches are aware of the dangers of concussion.

In 2013 footballer Hugo Loris sustained a head injury while playing for Spurs and I promised to set up a cross-party campaign in Parliament to raise awareness around concussion.

In 2014 we held an event in Parliament on concussion but the more I learned about it, the more I became aware of the lack of understanding around acquired brain injury and the vast range of causes which can lead to ABI.

In 2017, along with a few colleagues, we decided to re-establish the All-Party Parliamentary Group (APPG) Chris Bryant MP has gained on Acquired Brain Injury and I’m delighted with the support we have a reputation in Westminster attracted from both the House of as a passionate and Commons and the House of Lords, eloquent orator – perhaps and from politicians of all parties. unsurprising, given his background as an Oxford Q:When we talk to graduate, an author and a campaigners working one-time Anglican priest. to raise awareness, we Over the last couple of years, he has often find they have become known for his ability to speak on almost any subject raised in the personal or family House of Commons, and somehow to experience of ABI. Is link it to brain injury. that true in your case? We caught up with Chris after he addressed a packed room at I clearly remember one of my Headway’s The Way Ahead conference grandmother’s cousins. She was one to find out more about what drives him of three: there were three sisters who to speak up on acquired brain injury never married — Katherine, Isobel and and champion those affected. Alison Gracie. Alison Gracie had a stroke and then Q: Chris, how did you a fall down a flight of stairs. The first become interested combination of the two meant that we could see the same person inside, but in the issue of acquired the mental pain that she was suffering brain injury? was intense. She would hit her head all the time, using a Scottish phrase—her I was born in Cardiff and have lived for words, not mine: “MD, MD, MD!” That much of my life in South Wales. Rugby meant “mentally deficient”, the phrase is in my blood. I even broke my leg of the time in Scotland. playing in a charity match in 2011! And I know so many people, and have met I feel passionately that we must move so many constituents, who have spent further on from that time and ensure a long time playing rugby and, as a result, that everyone affected by ABI receives have been affected by concussion. timely and effective rehabilitation.

As a Welshman, rugby fan and former My own recent experience of being player for the Parliamentary rugby diagnosed with Stage 3 team, I became concerned that not melanoma also brought 11 “As a Welshman, rugby fan and former player for the Parliamentary rugby team, I became concerned that not enough was being done to ensure players and coaches are aware of the dangers from concussion.”

home to me, in a very personal and for in-patients and in the community. horrible way, how quickly life can change. neurorehabilitation, One day you have an idea in your head education, criminal There needs to be more work on of what the future will probably look developing knowledge of ABI in the like, and the next that’s all gone and you justice, concussion in disability benefits system, which I know don’t know what is going to happen sport and disability Headway has been working on. next. It’s brutal and destabilising. I am so benefits. You’ve also We’ve also identified some actions to be grateful for the care I have received, for taken around criminal justice, education the support of my husband and that the hosted lobbying and where it all began (for me), on treatment I have been given has been a sports-related concussion. success. But experiences like this make events and the APPG us think about our own mortality, about has published a One thing I am passionate about is making the most of our lives and doing bringing together ministers from across what we can to help people in need. comprehensive report, Government to look at how the work Time for Change. of their departments could do more to support people affected by ABI. Q: Te APPG has been What’s next? busy holding a series of I want to see a team of ministers from The Time for Change report made Defence, Work and Pensions, Transport, roundtable events on a number of recommendations and Health and Social Care, Criminal Justice pursuing those is the top priority. and other parts of the government looking Headway So that includes pushing for full use at ABI because a brain injury affects of the Rehabilitation Prescription and every aspect of people’s lives – we can’t 12 News for more neurorehabilitation services, think of ABI as “just an issue for health.” Q: Tank you for It’s important for me and other parliamentarians to hear these If you want to keep up coming to speak at Te experiences so that we can focus on the right things in Parliament which with Chris’ activities in Way Ahead conference is why it’s been a pleasure to see so Parliament, why not follow in July - we know how many people at the event and have the him on Twitter? chance to talk together. busy your weekends @RhonddaBryant – and you can Thank you for inviting me to come along follow Headway too @HeadwayUK must be. What was your – it was fantastic to be part of such a impression of the event? good weekend. I have met so many talented, passionate and determined people working to change the futures of people with an acquired brain injury since setting up the all-party group, including clinicians, people who work in the charity sector and of course people from Headway.

Some of the most powerful conversations have been with people who have had brain injuries and have Chris pictured with Headway staff, Harriet Bettany (left) and Amber-Rose Perry, at spoken about what their experiences The Way Ahead13 conference have been like. Technology is all around Different platforms such as us, from the phones Android, iOS and Windows offer a lot of potential for synchronising in our pockets to the calendars and alarms across cars we drive, and it is different devices. Let’s becoming smarter all There are ways in which other the time. The seemingly simple features of smartphones relentless march of can be helpful. RockinRic, from our progress opens up HealthUnlocked community, shared new possibilities, and a powerful way to support his wife’s memory: talk challenges, for people with brain injury and their He said: “My wife, who has loved ones. memory impairment from an ABI, uses the camera on a smartphone In this feature, we combine to take pictures every day of what’s tech feedback from our online happened as it saves it in time and communities with the results of date order to allow an accurate record an innovative ‘Hot House’ event as a technique to look back on.” that supported the planning of an How apps and Matthew Pallet, who relies heavily upcoming Headway brain injury on Google Calendar to organise rehabilitation hub in Suffolk, to gadgets can his life, cautions about over-use examine the current and future of technology, which can become technologies that could promote help with life confusing. independence after brain injury. post brain injury He said: “As with anything, though, Memory aids this is a double-edged sword. I share a calendar with my partner Memory problems are a very and it’s bloody useful, but I often common effect of brain injury, and get overloaded by the mounting an area in which technology can be reminders and notifications.” a great help. While rehabilitation to improve memory function in the long-term is notoriously difficult, Voice people can learn strategies and assistant use tools to help support memory. With the increasing Most of the population own a availability of smartphone and carry it with them reliable voice wherever they go, and the standard assistants on our apps and features they offer can be mobiles, many ideal for supporting memory. more people are able to easily “My phone is my lifeline,” said use technology to support their Lisa-Marie Russell on our independence. Facebook page. “I’ve got all my appointments in my calendar. I set TBI_Survivor over on reminders on there that pop-up on HealthUnlocked shares how built- the day with what I’ve got to do.” in voice recognition features make using digital reminders possible: “To be able to just speak to my phone and say, ‘OK Google, remind me at 2pm tomorrow to...’ helps me not lose track of things that would otherwise just Headway disappear from my mind.” 14 News For others, voice technology has Novel uses great for use when I’m with my dad. allowed them to achieve more than they Post stroke left him with expressive ever thought possible after their brain As well as the built-in apps, users were aphasia. He is able to draw using his injury. were also impressed with many paid-for good hand for his requests and that’s apps, some of which users have come ideal if you don’t have a pen and paper Donna Siggers explains: “Voice to rely on. We’re sharing a selection to hand.” recognition software allows me to write here, but you should always seek on bad days and likewise when Word advice from a trained professional such Freya Perry had to give up her artist’s speaks back to me it allows me to hear as an occupational therapist to make studio following her brain injury, my mistakes. I had to re-learn how to sure a particular app is right for you. however she is now taking the drawing read/write after my head injury but apps to the next level. She said: “I became an author. Tech is definitely my Teresa Piskator has found that a bought a tablet and created art on it. friend!” novel app called Tile, which tracks the My lifesaver. location of special cards (tiles), has helped her to keep track of important Getting around items. The tile can be synced up with “This is me startled by the noise.” An example of Freya’s artwork, which she created on her tablet. A built-in feature of modern mobile her phone and when activated emits devices is a GPS tracker, which allows a beep to help her locate whatever people’s locations to be accurately she has attached it to. pinpointed. She said: “The tiles keep track In the early stages after her injury, of car keys and my husband. RockinRic’s wife used this feature to He has one in his wallet in support her rehab. case we get separated, and a special one in my He said: “The physio team used the “survival bag” that also tracker function on a smartphone while notifies me if I forgot she was learning to walk alone around to bring it with me.” the large grounds of the care home.” For people with With route-finding often being affected communication problems, after brain injury, many respondents there are numerous options sang the praises of built-in apps such to help. Carrie Beckwith- as Google Maps, Apple Maps and Fellows explains how she even standard sat-navs, which offer an uses an app called Grid as her invaluable way to avoid getting lost! ‘Augmentative and Alternative “Moved to a new city last year and a Communication’ (AAC) device, new flat this year,” said Alice Manning supporting and replacing speech when on Facebook. needed. She said: “It has a page that helps “Tis is me startled by the “When I’m tired my short- me understand and communicate my noise. I’d love a whole art term memory is particularly emotions, a visual timetable for the bad including directions, and week, a page with all my food choices, exhibition of my art so I as I don’t remember what food I can could build awareness of all the tenements look pretty have to eat, and a page with activities similar. Finding my way and things to do as I forget.” hidden disability.” You can read a comprehensive list of home is so much easier when She also uses an innovative app called free and paid apps for people with I can essentially put my phone Cove. She said: “It is an amazing music acquired brain injury on the MyTherappy diary app where you tap on the screen on sat nav.” website, at www.my-therappy.co.uk. to make music loops as a way to journal how you feel. I find it excellent for those panic attack or anxiety moments, or sudden flashbacks.”

Michael McDonald shared a novel way to help his dad communicate using simple drawing apps on his phone.

He said: “Any of the draw apps are 15 There are other options for controlling research campus in Ipswich - a Hot The homes this technology, however. Voice House is an event in which you get a of the future assistants are currently growing room full of experts to come together in popularity, and they can already and work though a problem in a very ‘Smart technology’ around the home is integrate with many smart home limited timeframe. also likely to develop further to make it devices, allowing the control of multiple easier for people with a brain injury to aspects of the home. The event was organised to support live independently. the development of Headway Suffolk’s “Alexa, turn on the living room lights” exciting and ambitious plans for a new Heating systems can be set to track an or “Hey Google, turn the oven down rehabilitation hub, along with long-term individual’s preferred pattern, warming to 180 degrees” are examples of housing for clients. the house as they approach and turning commands that could increasingly the heating down to a comfortable level become second nature for us as smart The Professor Stephen Hawking Neuro for sleeping at night. homes become ever more integrated Centre will include 24 homes in two with our lives. buildings, where clients will have the Lights, showers and even toilets could opportunity to live as independently increasingly be controlled by smart With brain injury affecting many as possible. The unit is due to open in technology, adding new features to help people’s verbal communication skills, 2020. people with varying types and degrees there is promise in a new wave of of disability. gesture control systems for smart The Hot House brought together homes. Allowing people to control the experts from Headway and various All of these things can be linked TV, adjust the heating and a wealth industries to examine the options together to create a ‘smart home’, of other systems with pre-deﬁned for incorporating innovative design with kitchen appliances, security movements of the hands, opens and technology to support the unit’s systems and doors controlled by your up new possibilities and promotes residents. Incorporating a tour of smartphone, voice, facial recognition or independence for many people. BT’s Advanced Research showcase, other input device. it fed in many ideas Of course, in some cases technology for how technology One example is the use of new sensor- may not be available to everyone, and can be used in led systems in people’s home, which it remains important that other, more rehabilitation will offer a way to monitor welfare with a traditional support mechanisms are in and accessible lower impact on their privacy. place. building The system can analyse ‘normal’ design. RockingRic highlights some of the patterns of behaviour, such as when challenges a reliance on technology can lights have been turned on and off, or cause. if the kettle or others appliances have been used, even when people move He said: “We have also experienced a around into different rooms. down side to learning a new system or technology. When something doesn’t This offers an opportunity to raise an happen the way it should it can trigger alert to a trusted person, such as a an aggressive outburst, in some cases, close relative or care agency, or calling leading to a resistance to embrace or for a welfare check when the normal try something new.” routine changes. It is also the case that over-reliance Accessibility on technology, particularly in the early stages after brain injury, runs the risk of The development of new technology undermining rehabilitation. If in doubt, brings with it new challenges for speak to a medical professional to help accessibility. identify the most appropriate ways to For people with sensory problems in use technology to support you. their hands, tremor or other movement disorders, it can be difﬁcult or even Headway impossible to use touch-based devices. Suffolk Hot For these people, the prospect of increased reliance on this technology House is far from welcome. The options for using technology to support people in rehabilitation and long-term care after brain injury were examined at a recent ‘Hot House’ Headway event which took place at BT’s 16 News An artist’s impression of the Professor Stephen Hawking Neuro Hub “Alexa, turn on the living room lights” or “Hey Google, turn the oven down to 180 degrees” are examples of commands that could increasingly become second nature for us as smart homes become ever more integrated with our lives.”

The Cove app allows users to track their feelings through music

Tile can help you find lost possessions 17 MISSION NOT IMPOSSIBLE: Protect yourself and your family from CARBON MONOXIDE Even a small amount of carbon monoxide can also lead to acquired brain injury and (CO) exposure can damage our brains. other health issues. An unserviced boiler in your home or a leaky exhaust on your Cases making the headlines usually car could be placing you and your family feature victims of a sudden, severe at risk. exposure – perhaps overcome while watching late-night TV in front of a faulty Julie Connolly is a Senior Lecturer gas fire. These situations can often be at Liverpool John Moores University, fatal. But for those who survive, there researching the experiences of people can be long-term consequences, many affected in this way. She said: “People’s of which are difficult for even medical stories can be heart-breaking. They have professionals to diagnose. developed brain injuries which will be with them for the rest of their lives. But How does carbon also they have, in some cases, lived monoxide (CO) afect us? with symptoms for some years, been Imagine an invisible, disbelieved or treated for mental health odourless gas invading When inhaled, CO binds to our red blood issues, when the cause of their symptoms homes, workplaces and cells, which usually carry oxygen around was carbon monoxide exposure.” vehicles. There’s no warning. our bodies. CO molecules take the place of oxygen in the bloodstream, depriving Julie explained: “One woman had to No sirens. There are very few vital organs and tissues of oxygen. CO change her career entirely. She could no clues that the attack is even molecules are also toxic to our organs, longer cope with the demands of running under way. Survivors can be including the brain. her own business. Another young woman struggles with hyperacuity, meaning that left with lifelong effects. People rescued from high levels of she has become extremely sensitive to exposure are given oxygen to ‘push’ CO all loud noises, making it hard to cope on This is not the latest TV drama like from the bloodstream. Although some nights out with friends or even when on a Bodyguard or Spooks, or the new James people make a full recovery, it can also street with lots of traffic. Bond film. It’s a very real threat. Daniel result in life-changing brain injury. Craig or Richard Madden can’t protect us “Some people don’t have the – but there is a lot we can do to protect People who apparently recover same emotional behaviours, ourselves. immediately may develop Delayed and memories are altered. Neurological Syndrome (DNS), between We’re not talking about a master villain’s 2-40 days later. Symptoms include One man I spoke to completely nerve agent manufactured in a hidden memory loss, Parkinson’s-like movements, forgot that his wife of 30 years laboratory. Carbon monoxide is found in trouble walking, urinary incontinence, had never liked drinking tea, the air all around us – yet surprisingly difficulties with communications, which she found incredibly few people are aware of the dangers of depressed mood, dementia-type this gas. upsetting. It sounds like such symptoms and, in extreme cases, a small thing but it really psychosis. Headway emphasised how much they But many people do not realise that had both been afected.” 18 News longer-term, lower level exposure to CO MISSION NOT IMPOSSIBLE: Where does carbon monoxide STAYING SAFE: come from? Be aware of the main SYMPTOMS of carbon monoxide When fuels such as gas, oil, coal and exposure. People don’t have to have all these symptoms, wood do not burn fully, carbon monoxide and this is not an exhaustive list. is produced. CO is an invisible, odourless, tasteless poisonous gas. The main risks inside homes are from appliances which use these types of fuel, such as: Aga-type appliances making impulsive/irrational decisions. Be aware of the ACTIONS to take if you think you are being affected.

affected by CO you are away from the source of the gas REDUCE RISK: In some cases, people have been affected by CO entering their home from a neighbouring property, perhaps through an open window or vent. CO has also been known to seep through the walls professional annually from a neighbouring property, or into ﬂats above takeaway premises, sometimes If you rent your home, your landlord has responsibilities to keep you with deadly consequences. safe. If you are worried about raising issues with your landlord, your local Citizens Advice, council housing team of housing charity Shelter will be It is also found in fumes from barbecues, able to help you. vehicle engine and cigarette smoke.

USEFUL CONTACTS: Gas Emergency 0800 111 999 Shelter www.shelter.org.uk Citizens Advice www.citizensadvice.org.uk Health and Safety Gas Safety Advice Line 0800 300 363 Alex Murphy was Dancing on just 24 when she My Story had a stroke Ice star Alex Murphy was just 24-years old when she had a stroke that left her unable to walk, talk and pursue her passion as a professional ice-skater.

At the time, Alex was travelling the world on a cruise ship performing to an audience of 1,000 people every night.

However, following a near-fatal stroke in 2012, the USFSA double gold medallist feared she’d never be able to return to the ice again.

Alex said: “I was so worried that I would have to give up on my career as an ice- skater. It was a really daunting time for me. Not only was my body going through all these huge changes, but so were my career prospects.

raise “I’d done the same routine day in day out, but on this particular day something wasn’t right. awareness “The second I stepped off the ice I knew something was seriously wrong. I went to put my costume on the costume rack 20 and couldn’t lift my arm. I tried to untie my skates but my hands just wouldn’t She said: “I definitely think I was pitied let me. a lot to start with. People would look Sarah Scott at me in a different way, like I wasn’t as “I went into the capable as I was before my stroke. bathroom, looked in Dancing on Ice has played the mirror and didn’t a huge role in recognise the reflection my recovery staring back at me. “I started pounding my fists on the sink, trying to spark some kind of sensation in my hands, but nothing. It Sarah’s story was then one of my skating colleagues Sarah Scott was a healthy teenager came in to the bathroom and I with a lively social life and dreams of collapsed. becoming a biomedical scientist. Like “I remember people becoming really many others, she never expected that “I remember regaining consciousness uncomfortable to ask about my stroke. she would have to overcome the effects and seeing all these concerned faces It’s like they think of it as a ‘bad’ word of a stroke at such a young age. looking at me. I kept trying to utter that shouldn’t be said. words to tell them that something was But ten years ago, one morning wrong, but I couldn’t.” “People are shy and scared of the ‘s’ changed her life forever. word. They are afraid to ask questions Sarah, who was just 18 at the time, was Alex spent a total of eight hours unable because it is so scary, but most stroke reading aloud in her English Literature to communicate. survivors like myself are happy to class at sixth form when she suddenly share their experience in order to raise The pro-skater was later transferred began to feel unwell. As it was the first awareness.” to a nearby hospital in Tenerife, before lesson in the morning, Sarah assumed being taken to a hospital in Miami Since her stroke, Alex has reached she was tired from the night before. where it was revealed that the stroke the ITV Dancing on Ice UK semi-finals Luckily, some of her fellow students was caused by a condition called twice with celebrity partners, former recognised the signs of stroke and patent foramen ovale (PFO), also Westlife singer Brian McFadden and raised the alarm. Sarah was rushed to known as a hole in the heart, which led Love Island’s Kem Cetinay. to a blood clot on Alex’s brain. hospital where doctors confirmed that “Dancing on Ice has played a huge the stroke was caused by a PFO, a hole It was then Alex had to make the role in my recovery,” said Alex. “Doing in the heart. difficult decision to undergo high-risk something that you love day after day, Sarah spent five months in hospital and heart surgery. and being able to convince a complete rehabilitation, learning how to do the stranger and skating novice to love it Thankfully, she managed to make a most basic of tasks again. She couldn’t too, is truly a gift.” remarkable cognitive recovery and was walk, talk, swallow, read or write, she back to reading and writing within a Alex is a stroke ambassador and had visual impairments and struggled few days. helps to raise awareness of stroke, with chronic fatigue. particularly with young people. During Alex’s recovery, she was offered Sarah said: “All of my friends went a spot as a professional skater on the She said: “Stroke can affect anyone, to University and I felt very isolated. I Dutch version of Dancing on Ice. regardless of age. So if I had one piece couldn’t speak, read or write. I had no idea what I was going to do with my “It was a dream come true for me,” of advice for young survivors it would life.” she said. “My entire career had led up be to be patient. You need to give your brain time to heal and rewire.” to this moment so there was no way I Almost a decade on, 28-year old Sarah could turn it down.” works as a scientist testing cancer treatments, but she’s still living with Just one month after the surgery, Alex the ongoing effects of her brain injury, made her first appearance on the including expressive aphasia. television show and later went on to win the series along with her partner, Sarah now helps to support fellow DJ Tony Wycycinski. young stroke survivors in her local community and regularly vlogs about But despite her continued success her experience in the hope to raise and determination to not let her stroke awareness. define her, Alex found that a number Alex returned to of her colleagues began to treat her the ice one month differently after learning about her stroke. after surgery 21 Play that funky music Whether it’s singing or playing an instrument, music can play a positive role in recovery and rehabilitation.

It can help with cognitive functioning, social skills and physical ability, as well as improving self-expression and boosting Herefordshire Headway’s music session in full swing mood levels. Many people experience more than Paul from Headway East Kent said: In this special feature, we look at how one form of communication problem “Music is important to me because it lifts Headway groups and branches across after brain injury, such as language my spirits and it helps me forget all my the UK use music to improve the lives of impairment, speech difficulty or cognitive worries.” brain injury survivors. communication problems. Bev, who takes part in the music sessions Singing may help speech stimulation on offer at Headway Luton, agreed. She The language and improve pronunciation, articulation, said: “Music makes me feel happy inside. of music projection and recall of vocabulary. It gives me a boost when I’m feeling anxious or sad.” Music, like other forms of creative art, Writing, performing and listening to music can support verbal and non-verbal may also help boost communication skills Research shows that this increase in communication. among brain injury survivors. arousal improves areas of cognitive functioning, such as concentration Vocal elements of music such as rhythm and memory, which are often impaired and pitch can be imitated in spoken following brain injury. language, meaning survivors can transfer skills learnt in music lessons to their Service users at Headway Birmingham everyday speech. and Solihull find the weekly music sessions bring cognitive benefits. For those who struggle to articulate their thoughts, music allows them to express The sessions aim to educate brain injury themselves creatively. survivors through focusing on how music has evolved over time. Thomas, who attends music sessions at the Second Chance Headway Centre, While educational, the sessions also help Wakefield, said: “Listening to music and survivors recall memories that may have singing helps me to express my feelings been lost prior to their injury, through and it always makes me feel happy.” listening to familiar songs from the past.

For many, bringing back special moments Music for the mind that might have otherwise been forgotten Music can promote emotional wellbeing can trigger different emotions. through relaxing the mind and improving stress and mood levels. Jane, who attends music sessions at Headway Luton, said: “The music can 22 make me quite emotional at times as it The Atmospheres brings back memories before my brain injury. Research shows that through following rhyth- at Second Chance Sometimes I want to forget about the past mic patterns, people can develop their muscu- Headway Centre, Wakefield and certain people, but sometimes it is healthy lar control and fine motor coordination, as well to reflect.” as increase sensory responsiveness, which may have been lost due to brain injury. Music as an ice-breaker Chris’ story Many Headway groups and branches host Chris Wilson, who attends a group music sessions as part of ongoing Headway group in South Cumbria, rehabilitation, providing a means by which credits music with the progress he service users can socialise, share their has made following his brain injury. experiences and relate to one another. Chris sustained a traumatic brain Headway Southampton’s Jegan perfecting his ukulele recital funky music Sophie Garner, professional vocal coach at injury after being assaulted while on Headway Bedford, said: “Coming together holiday in Tenerife. each week to enjoy and perform music results He lost his independence and now in stronger relationships, improved mood and Lesley enjoying a singing struggles with short-term memory loss, session at Headway a positive outlook of hope for the future.” South Bucks cognitive difficulties and weakness on the Paul, a service user at Headway East Kent, right side of his body. reflects on how attending music sessions has But thanks to music, Chris has regained helped him socially. He said: “I find that music his confidence. encourages me to join in with the group more than I would normally.” He takes part in music lessons at a local school where he sings and plays the Fellow brain injury survivor Julia, who attends ukulele. the same sessions, echoed those sentiments. She said, “Listening to music makes people Reflecting on the role music has played in smile. It encourages them to interact with his recovery, Chris said: “Playing, singing each other without even knowing. It brings and listening to music gives me focus and Phil with music teacher Dave proudly people together.” improves my mood. Socially, I’ve made new showing his new friends with similar and different music left-handed guitar Breaking down the tastes, which has enriched my life. physical barriers “Music makes me feel While the effects of brain injury are often hidden, some survivors experience physical more confident about problems such as mobility difficulties, weakness or paralysis and sensory my life in the future.” impairment. But these need not be a barrier when it comes to performing, writing or listening to music.

Phil Charnock sustained a brain injury in 2015 Scott from Headway East following a stroke. Phil had always been a Northants feeling very proud of his music enthusiast and regularly played guitar, performance but after his injury, it was difﬁcult to participate in the music sessions at Headway East Northants due to limited shoulder mobility.

Luckily the group’s resident music teacher, Dave Thomas, worked with Phil to find a solution. They re-strung Phil’s guitar to make it a left-handed instrument. Now, Phil can play far more comfortably and looks forward to the sessions. 23 My Story “My brain injury brought me and my girlfriend closer together.” One young couple share their experience of how brain injury affected their relationship Maintaining a positive 18-year-old Jake romantic relationship Elliott and his girlfriend, Katelyn after a brain injury can be Southwick, difficult, even more so for demonstrate how young couples who are still relationships can Jake Elliot getting to know each other. not only survive, but thrive, following The common behavioural, cognitive brain injury. and emotional effects of a brain injury can often act as a barrier when trying Jake said: “My injury has to salvage the relationship that existed definitely brought me and beforehand. my girlfriend closer together Some relationships may collapse over time, while others may immediately and solidified our bond. break down following a spouse’s brain We know that if we can injury. survive the devastating But not all relationships are doomed and life-changing effects to fail after a brain injury. of a brain injury, we can Headway’s study into relationships survive anything.” after brain injury found that 35% of brain injury survivors reported that Jake and Katelyn’s whirlwind romance their relationship with their partner had began in 2018 when they met at a strengthened after their injury, with summer camp. 38% of partners responding in kind.

Headway 24 News Katelyn was by his bedside every day. “My ﬁrst words were even yes, no and Katelyn.” “She was there every step of the way,” recalled Jake. “Katelyn’s just Jake’s dad, Simon Elliott, said: “Katelyn been incredibly strong and supportive is a real key factor in Jake’s recovery throughout the whole thing. I feel and progress. She’s been an incredible incredibly lucky to have found someone support not only for Jake, but for the rest

Jake and Katelyn celebrating their as caring and understanding as she is, of the family too. first Valentine’s Day in hospital especially at such a young age.” “We can’t thank her enough Jake is now forced to live with the Just six months after the pair began for everything she’s done for dating, Jake was involved in a near-fatal complex, fluctuating and often road traffic accident while travelling as hidden effects of his brain injury, our son.” including debilitating fatigue, difficulty a passenger on his way to college with The couple even spent their first concentrating and behavioural issues. friends. Valentine’s Day together in the hospital. He said: “The effects of my brain injury “I still remember that day so vividly,” said “It was a really special and romantic day have undoubtedly put a strain on my Jake. “I was on the phone to Katelyn for the both of us. It wasn’t your typical relationship with Katelyn. But thanks to and I told her I’d ring her back as soon Valentine’s Day, but it will definitely be a strong support system made up of as I got to college. I never rung and the one to remember,” recalled Jake. next time she saw me I was lying in a family and friends, as well as the help hospital bed surrounded by doctors and of professionals such as Headway, we “We spent the night eating strawberries covered in wires.” have been able to maintain a healthy and chocolate and reflecting on how and loving relationship. crazy and frightening the past few Following the accident, Jake was rushed weeks had been. to the critical care unit at Walsgrave “Te Headway website in Hospital where he spent ten days in particular was a real saving “I even managed to write Katelyn a card. an induced coma on life support and I had to ask for help from my mum but it a further three months in hospital grace for myself, Katelyn was still a huge achievement to be able recovering. He had sustained two and the rest of my family to write for the first time since the injury.” bleeds on his brain and a collapsed lung. during the early stages of my The couple have big plans for the future, recovery. Te factsheets and both personally and in their relationship. e-booklets helped to educate Katelyn is hoping to attend university in us on the effects of brain September to study Paramedic Science injury and provided essential while Jake plans to take a year off to recover and learn how to cope with the coping strategies.” effects of his brain injury. With time he is While in the coma following the accident, hoping to accept his unconditional offer Jake would not respond to the commands to study Sport and PE at The University of the nurses, but instead would only of Northampton. listen to what Katelyn had to say.

He said: “Apparently the nurses would ask me to do simple movements like lift my leg or give them a thumbs up and I was completely unresponsive to them. But as soon as Katelyn said ‘Come on, Jake. Do as the nurses say’, I’d willingly respond.

“According to my parents I would twitch and slightly open my eyes whenever Katelyn walked in to the room or spoke to me.

#HeadwayHeroes Rail staff The cape crusaders pump to the ﬁnish line

Apump team of superheroes fromfor “A party ofmiles school children at Wansford GB Railfreight has pumped a thought it was funny, and a nurse passing by at Peterborough even gave us some Jo Plant, Director of Fundraising at railway trolley for 40 miles to additional sponsorship money when she Headway, said: “We loved finding out help raise more than £1,300 found out what we were doing!” about this unique and funny Challenge for Headway. 40 event - it certainly was different! The arduous journey ended up taking Well done to all the team for getting to Phil Amos, Liam Day, Josh Jordan- the team five hours and 30 minutes from the end - even if they did receive a few Boddey and David Hunt dressed as their start to finish, and they even reached a strange looks along the way.” favourite crime fighters to pump their top speed of 18mph - although that was way to the finishing line. mainly due to going downhill.

The team wanted to do something a bit out of the ordinary as part of our Challenge 40 year – and they certainly managed it!

Phil said: “We found that the Nene Valley Railway had a trolley and were close by. They kindly agreed to us using nearly the whole length of their line, 6.2 miles Raising thousands for between Peterborough and Wansford. “We managed to set a fairly Headway in year of fun steady pace up and down the Birmingham Law Society mile motorcycle challenge between line getting some very strange has cycled, kicked and Lands End and John O’Groats, as well as the society’s ﬂagship event, a looks from the people that quizzed on the way to Bicentenary Gala Dinner. we passed, particularly from raise more than £16,000 the cars waiting at the level for Headway during its James said: “It was a huge honour for me to work with the team from crossing!” Challenge Baton year. Headway during my year as President.

The society’s President for 2018-2019, “Together we worked hard to raise James Turner, chose both Headway much needed funds to support two and the Jeff Astle Foundation as his vital Headway services. nominated charities for the year. “We would not have achieved so James had a very personal reason much if there had not been a real for nominating Headway after seeing sense of collaboration between the ﬁrsthand the effects of brain injury Society and charity.” when his partner sustained a traumatic brain injury following an accident in Jo Plant, Director of Fundraising at 2002. Headway, said: “It has been a great year working with the society. Throughout the year, the society took part in a range of fundraising events, “This fantastic amount of money will including sporting competitions, a help us support families who are trying Legal Awards Dinner and quiz night. to come to terms with the devastating consequences of brain injury.” Other highlights included James taking to the saddle and completing a 1,818 27 Jamie Cruickshanks from #HeadwayHeroes Stephensons Solicitors grabs a team selﬁe before hitting the water

A TRIP TO REMEMBER as corporate teams Go Wild for Headway! The corporate teams who to help celebrate our 40th birthday, this She said: “It was extreme. I went signed up to our Go Wild year we decided to do something even through every emotion such as fear, bigger and better. surprise, excitement, terror and pride, to event expected a challenge name but a few. - maybe a slight moment of Around 50 people attended from 13 hardship. companies to take on all that Mother “The team worked to get each other Nature could throw at them as they through the challenges, and I could But what they actually got was two days trekked, climbed and swam in Coniston not have done this without them. The of plunging 30 feet into freezing water, in the Lake District. challenges were really tough. You had exploring old mine tunnels in the pitch to follow a total stranger into a small Led by ex-army and mountaineering black and screeching across zip wires stream and then into a ﬂooded tunnel of professionals from Challenge the Wild, hanging 200 feet above the ground – an old mine, all in complete darkness. the teams covered more than 20 miles plus much, much, more. Then if that wasn’t bad enough, you then over the two days, taking part in a range had to slide down into a underground Each summer Headway holds an of thrilling and frightening activities along plunge pool. exciting Corporate Challenge event, and the way. “Te feeling of accomplishment Julie Tucker, Manager at Markham Headway House, Voyage Care, said she was is hard to describe and for such News inspired by the support of her team. a great cause, I am so proud to 28 have been a part of it.” Heather Petrie, Bolt Burdon Kemp, said “Everyone was really Thank you to all the each challenge tested participants in exciting and different ways. supportive and the guide teams that took part

She said: “For those scared of water, team were brilliant. After A Chance for Life, Active Care Group, the cliff jumping and caving pushed the activities had ﬁnished, Birchall Blackburn, Bolt Burdon Kemp, them to their limits; for those scared I left feeling tired and FBC Manby Bowdler, HCML (Health of heights, the abseiling and zip wiring & Case Management Ltd), Jefferies were the ultimate psych out; for those happy. Solicitors, McMillan Williams Solicitors, with little legs – well, let’s just say “And, as well as being a great life Nestor Financial Group Ltd, Simpson that the scrambling felt like a personal experience we got to raise money Millar, Spencers Solicitors, Stephensons attack. The adrenaline coursed through for an ace charity doing life changing Solicitors and Voyage Care. everyone’s veins throughout the work. I’ve been telling everyone to get Additional thanks to the following challenge.” involved next year!” who donated prizes for our intrepid Andy White from HCML said the event On the ﬁrst day, an evening event and Go Wilders: Concerva, Frenkel surpassed all his expectations. BBQ was also held, where Headway Topping, Lanyon Bowdler, Old Square Ambassador and Paralympian, Jack Chambers, Rehab Without Walls. He said: “I knew the event was going Rutter, spoke about his personal to be fun, but I am not sure I was experience and journey with brain injury prepared for how much of a challenge which led him to representing Great Inspired? it actually was. I think most people were Britain at the Rio Paralympics. able to conquer a personal fear with Get involved! the support of the team. It really was a It really brought home to everyone how Would you like to join Headway as fantastic event and all to raise money for a brain injury can happen to anyone, at a Corporate Member or take part such a fantastic cause.” any time, and just how important their in next year’s challenge? Contact fundraising really is. [email protected] to Stuart Hughes, from Birchall Blackburn express your interest! Law, came away from the event pleased The event has raised nearly £15,000 to that he met the challenge. date for Headway’s UK-wide frontline services. He said: “It was a fantastic and friendly event but also challenging enough Nicole James Julio from Bolt Burdon Kemp to make you feel that you’ve really takes on the abseil with style achieved something - and earned your sponsorship! Happy trekkers

Activities included: Scrambling and rock climbing up Raven Crag with 300m of ascent. Trekking over rugged terrain and hilltops. Taking on a Tyrolean Zip over a quarry with a 200ft drop below. Jumping 30ft from quarry cliffs into freezing cold water. Going into the depths of dark caves and jumping into underwater cave systems. Abseiling 150ft down a quarry wall. Trekking to Cathedral Cave and exploring old mine tunnels in the pitch black.

Sara Fisher from A Chance for Life scrambles Raven Crag 29 #HeadwayHeroes Solicitors tackle gruelling Challenge 40 ride Staff from Irwin Mitchell Jo Plant, Director of Fundraising at Solicitors cycled for an Headway, said: “We would like to say a big thank you to everyone who took incredible 40 hours to help part. Not only did it raise vital funds, but raise more than £1,200 the event also resulted in someone in for Headway as part of our need finding out about the support we special Challenge 40 year. can offer. What a great team effort!” All smiles, the team from A group of 63 committed cyclists Irwin Mitchell dig deep managed to cycle a total of 630km - To mark our which is the equivalent of cycling from “It turned out that a colleague birthday we its office in Holborn to Cologne in from a neighbouring business wanted to do Germany. had recently sustained a brain something special that The event involved cycling on four static injury after a serious fall and so everyone can bikes from 8am to 6pm. we recommended that his family get involved in – so we’ve created be put in touch with Headway for Challenge 40. Stephanie Edwards, a solicitor at the support. firm, said: “Many of our clients have Find our and sign up for your own experienced a brain injury and so “So it was great to be able to raise challenge on our website. everyone was very keen to get involved funds but also awareness too.” and show their support. Voyage Care sails to fantastic total for Headway Some of their fundraising highlights Leading provider Cat Talbot ran “Last year its staff raised an of specialist care 40 miles in 40 days included: amazing amount but this year and support, • Taking on the UK’s highest they have stepped it up even Voyage Care, freefall abseil further. Teir fantastic support has raised • A bush tucker trial will make a huge difference to our nearly £16,000 • Band night fundraiser work. during this • Snowdonia challenge “Thank you so much.” year’s Headway • Cakes sales and dress down days Andrew Cannon, CEO at Voyage Care, Challenge Baton. • BBQs and tea parties • Obstacle races and marathons said: “Headway has been a fantastic The company, which provides residential charity to support over the last 12 support to people living with brain The organisation also had staff taking months. Knowing that the money we injuries, already raised £12,000 for part in Challenge 40, with Cat Talbot have raised has been able to help Headway in 2017 – smashing its target from the Lichfield office running 40 people rebuild their life after brain injury, of £10,000 to support national frontline miles in 40 days. is a really rewarding feeling.” services - and over the past 12 months Jo Plant, Director of Fundraising at they went even further. Headway, said: “We cannot thank Voyage Care and their staff enough Headway for the incredible support they have 30 News provided to us in the past two years.