Stroke News SPRING 31.1 2013 Volume Meet the Aylen family

Step out for stroke How Rachel went the distance How my dog looks after me Grace and Geri are ideal housemates Your health Dealing with anxiety after stroke

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stroke.org.uk Contents SPRING 31.1 2013 Volume

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Editor Jane Butler Design Rick Nicholls Regulars Features To subscribe to Stroke News 03 Volunteer spotlight 08 On the cover or change your contact details Meet Stan Bradberry Alison and Andrew Aylen’s call 01604 687 721 [email protected] 04 Your views family life after stroke Stroke News is published by We share your letters 11 Back to work the Stroke Association John Manning returns Stroke Association House 05 News to the airwaves 240 City Road Catch up on the latest EC1V 2PR Tel 020 7566 0300 news about stroke 12 Step out for stroke Rachel Inglefield’s story stroke.org.uk 21 Money matters [email protected] Benefit changes 13 Research Helpline 0303 3033 100 Could anti-depressants To advertise in Stroke News 24 What’s on? aid stroke recovery? contact Redactive Media Group Take part in one of our events Phone 020 7880 6200 26 Health 16 Your stories Volume 31.1 Spring 2013 The emotional trauma of stroke © Stroke Association 2013 Dealing with anxiety Every effort has been made to ensure 18 Not just a man’s that the information provided in this best friend magazine is accurate, but we cannot Get your free copy My dog, Geri, helped me get guarantee accuracy and the information my life back provided does not constitute legal or of Stroke News today other professional advice. Opinions expressed in this magazine are not Call 01604 687 721 or email always to be taken as expressing the [email protected] opinions of the Stroke Association. Advertisements, products or services For an audio version, listed are not necessarily recommended please also call the by the Stroke Association. number above. 13 Stroke News is printed on paper Research news from sustainable sources.

The Stroke Association is a company limited by guarantee, registered in and (No 61274). Registered office: Stroke Association House, 240 City Road, London EC1V 2PR. Registered as a charity in England and Wales (No 211015) and in Scotland (SC037789). Also registered in (XT33805) (No 945)and (NPO 369). Stroke News Spring 2013 02 Welcome… Spring has arrived at last. rollercoaster. In our cover of stroke led him to set up And whilst we can’t tell whether feature, Andrew and Alison a radio station for stroke it will bring sun, rain, wind Aylen share the challenges survivors (page 11), and or sleet, at least we can rely they’ve faced together, since Grace Gurney reveals how on having more daylight and Andrew had three strokes at her dog rescued her from longer days at our disposal. the age of just 21 (page 8). loneliness (page 18). Finally, Suitably then, this issue is all And psychiatrist Dr Tony in our Money matters article, about getting out and about. Saunders offers us an insight you can find out about the latest No matter how active you are, into how he suffered post- benefit changes (page 21). there are plenty of ideas in the traumatic stress after having Whatever the weather brings pages that follow from Step out a stroke (page 16). For guidance this spring, I hope you’ll draw for Stroke (page 12) to gardening on coping with depression and inspiration from this issue of (page 20) and photography anxiety after stroke, turn to Stroke News. (page 15). pages 7 and 26. Rebuilding your life after We also meet John Manning, Jane Butler stroke can be an emotional whose first-hand experience Editor, Stroke News Volunteer spotlight Stan Bradberry Stan Bradberry understands key conversation words form an important part of the all too well the devastating that she needed to relearn recovery process, and because impact that aphasia can as answers.” Despite many of these groups are have. “My wife, Julia, became having worked as a GP, in voluntary, the economic benefits aphasic about 10 years ago the beginning Stan found of encouraging support for the after a stroke secondary to there were still gaps in his Stroke Association to maintain leukaemia. The availability of understanding: “I realised them should be noted by politicians speech therapy was limited, that Julia couldn’t mime the and GP Commissioning so I learnt what I could from questions she wanted to ask Groups alike.” the therapists and continued and confused ‘yes’ and ‘no’ to give her help at home.” answers, which could be quite misleading.” He recognised the importance of providing his Today, Stan uses his wife with time, support and experience to volunteer encouragement in finding at the local Thornhill new ways to communicate. Stroke Support Service in “I wanted to tailor therapy Southampton, where he to be more specific to helps clients find ways to Julia’s needs, so I compiled communicate. Stan explains: crossword puzzles with “Stroke support groups

03 Stroke News Spring 2013 Your views Dear Stroke News On the mend To cap it all… I had my stroke in January 2012, In the latest Stroke News issue, a day after having a right hip I noticed an article about a stroke replacement operation. When I survivor who was initially refused left hospital I was unable to walk, service in a pub due to a speech and relied on the services of care difficulty following his stroke. Hot topics workers to come in each morning Last summer, I visited a local In our last issue (Winter to help me wash and dress. The restaurant with my family and the 2012), we asked you goal, each day, was to do as much manager asked me to remove my about the challenges of as I could. Within a short time, protective cap, worn to protect I was washed and dressed and dressing after stroke. my skull after a crainianotomy walking down to open the door Thank you to everyone op, following my stroke in 2010. and greet the care workers. The who shared their My wife explained the reason next challenge was showering. experiences. In the next why it was worn – however the After a few attempts I got the manager was reluctant to grant issue, we’d like to share hang of it and the care workers my request. your top travel tips for were no longer required. the ultimate relaxation Recently, I visited the same All in all I have made a good restaurant only to be met by experience when recovery, but still have a weakness the manager who apologised away. So please write in my left arm and I know that my and stated that I was welcome in and let us know your brain is not as sharp as it was – still, to visit and wear my protective suggestions. I am alive and fighting to move hat anytime. On a final note, forward. I am a member of the I have found Stroke News both Weston Active Stroke Group, informative and inspirational which is a fantastic support group. during my recovery. Frank Cole Mr P D Johnson Dressing after stroke Dressing myself since having a stroke in August 2011, has been my greatest frustration. Sometimes it’s okay, other days I am shocking in my attempts! Please email your views to I even put my shoes on the wrong [email protected] feet! I find getting thick socks or or write to: tights on hard work, but I cope Stroke News with buttons and zips quite well. Stroke Association I have wasted so much of my Stroke Association House time and my carers’ time in the 240 City Road morning. They’ve tried giving London EC1V 2PR me marks out of ten every day and I feel great when I get ten We look forward to hearing out of ten all week. from you. Jean Barr Stroke News Spring 2013 04 News

Let’s all do our bit this May… Our second Action on Stroke Month is coming

During May, stroke community You can find out more or for everyone affected, and fairs will be taking place order your pack by visiting many people feel they don't throughout the UK. www.stroke.org.uk/strokemonth get the emotional support they or calling 0207 566 1500. need. We carried out a survey So why not encourage your local to find out more. A huge thank community to raise awareness This year’s theme focuses on you for your responses – we’ll of stroke or you could even the emotional impact of stroke. be sharing the findings with organise your own fair? Life after stroke can be tough you shortly. The importance of having a break When a stroke happens, it is a We've been working with shock for everyone concerned Vitalise, the respite charity, especially when day-to-day to help improve the breaks support is needed, often from they offer to people affected a loved one. Being a carer can by stroke. Last autumn, be tiring and frustrating and if several couples stayed at you’ve had the stroke, you may Netley Waterside House in feel dependent and a burden. Southampton and shared Respite is an important way of their thoughts. One carer coping – a chance to have a break said it was “relaxing knowing and recharge the batteries. there was always someone By taking on board all of there to help if need be.” the feedback, Vitalise is now Respite could be care support Another carer commented, thinking about how it can make at home for a few hours, a lunch “The outings were particularly its breaks even more valuable out, a social outing or a longer well organised with someone for people affected by stroke. residential break. Services vary to help my husband and take To find out more visit but social services will know responsibility. My husband www.vitalise.org.uk what’s available in your area. enjoyed it too!”

05 Stroke News Spring 2013 Make someone’s day Give a lot more than just beautiful flowers by using Charity Flowers. Choose from a selection of stunning bouquets that can be sent anywhere in the UK and the Stroke Association will receive 15% of the bouquet value. Call 0870 5300 600 or visit www.charityflowers.co.uk In brief • The Stroke Association is 10 years of Know your blood pressure supporting Find Me Good Care, a new service from the Social High blood pressure is the can take to help keep high Care Institute for Excellence biggest risk factor for stroke. blood pressure at bay. (SCIE), to help you make By knowing and managing choices about care and support your blood pressure, you can • Cut down on salt. for yourself or other people take control of your health • Be as active as possible. in England. It combines and reduce your risk of stroke. • Stop smoking. advice and information Each year, we check the blood • Limit the amount of alcohol about choosing care with pressure of around 30,000 you drink. a comparable database of people at our Know your services. You can search for blood pressure events. During our 10th anniversary care and support services of Know your blood pressure, in your area on their site Know your blood pressure day will we have more events planned www.findmegoodcare.co.uk take place on 20 April. Find your than ever before. Many are nearest event on our website: organised by Rotarians in We’ve teamed up with Yours www.stroke.org.uk/kybp local Rotary Clubs who have • magazine for this year’s Life or call 01527 908918. supported our campaign since After Stroke Awards. Yours the start. We are tremendously will be supporting our Adult As well as having your blood grateful to Rotary International Courage Award (65 years +) pressure checked at least in Great Britain and Ireland for and Editor Valery McConnell once a year (or more if you all their support over the last will be helping us to select are diagnosed with high 10 years and look forward to this year’s winners. Thank you blood pressure), there are many more successful years for your support Yours! some simple steps you of working together.

Stroke News Spring 2013 06 Coping with depression after stroke Around half of stroke survivors suffer depression in the first year. If you’re feeling very low, it can be hard to talk about it or know how to cope.

Depression is characterised by feelings of persistent a local stroke support centre where he can talk sadness, helplessness and hopelessness. Many to other people who are in similar positions. He people don't want to admit to how bad they are also volunteers for the Stroke Association, which feeling or acknowledge that they may be depressed. has helped him with his confidence. “It gives me a reason to go out and a sense of self-worth,” Peter Bithell, from Manchester, had a stroke four explains Peter. Although he is still struggling, years ago at the age of just 36. He was outgoing and he says he’s “on the up”. He just wishes that active, but after his stroke he had to stop work and more people understood the emotional effect stay at home. He can't play football anymore or do that stroke can have. other physical activities for long because he gets very tired. If you suspect you have depression, it's important to get support from your doctor and family The limitations caused by his stroke have had a or friends. Our helpline can also direct you huge impact on Peter and he has struggled with to specialist services (call us on 0303 3033 100). depression ever since. At times it means that he doesn’t want to go out or socialise, and sometimes Some suggestions to help you cope: he finds it difficult to get out of bed. 1 Keep in touch with family and friends. Peter has found that one of the other issues is that Join a support group. Meet others who people can’t see depression. “When you meet 2 have been through similar experiences. people they think you’re fine, because I look fine Keep occupied. Discover a new hobby physically,” explains Peter. “They can’t see what’s 3 or interest. going on inside your head.” Look after yourself. Keep as active as possible Despite these difficulties, Peter has received 4 and you’ll feel better for eating healthily. lots of help from his psychologist and attends

Stroke News Spring 2013 07 Feature

“I was desperate to recover enough to ask Alison, my girlfriend, to be my wife.”

Where there’s a will t here’s a way Andrew survived three strokes when he was just 21 years old. It was devastating to be left with severe disabilities at such a young age, but now, ten years later, he is happily married with two beautiful children.

1008 Stroke News Spring 2013 “ ll I could do was to “I found it very difficult and Andrew used to work in IT before cope with each day was very worried about the his strokes and having done some A at a time and hope for future. But I was desperate to stand-up comedy, he dreamed of a future,” says Andrew Aylen, recover enough to ask Alison, becoming a stand-up comedian. who is 32 and from Aylesbury my girlfriend, to be my wife. Although he couldn't pursue in Buckinghamshire. I didn’t want to get married that career, Andrew was keen until I could walk and work again, to find a job. He explains: “I was “After my first stroke in 2000, so I set them as my recovery determined to work, so after I could walk but my speech wasn’t goals. When I came home I could a year of recovering at home, great. Then I had another stroke only walk inside and Alison had I cleaned offices. I was just pleased which put me in a wheelchair for to push my wheelchair when to work. After a while it was too nine months. I also needed surgery we were outdoors, but slowly painful to carry on – it is hard to after each stroke, which eventually things progressed and I can do manual jobs when you only caused me to develop epilepsy. now walk to the local shop.” have one arm to use.”

Stroke News Spring 2013 09 Feature

The couple now have two lovely Andrew also supports others which is so unhelpful to children, Luke aged six and Abby who have been affected by someone with aphasia.” aged two. Andrew looks after stroke on a voluntary basis them most days while Alison through his group, the Aylesbury Andrew was recently asked to works as a physiotherapist. Strike Back Club. Andrew says deliver a talk to 30 first year “Andy is a fantastic dad,” says that being part of the group physiotherapy students at Alison. “I know the children are makes him feel normal. Oxford Brookes University. lucky to spend so much time with “Doctors and physios don’t “He delivered this with the perfect him. He is incredibly patient with always understand – they only mix of humour and seriousness,” them and has a wonderful sense know what the textbooks tell says Alison. “The students said of humour. Equally I know he them, but if you have had a that they wished they had met would love to be working, even if stroke then you have an idea him sooner because then they it was only part time. Our reality – it’s important to hear from would have understood stroke is that I have to work full time to others who have been through better.” They also mentioned financially support the family so the experience,” he explains. how it helped them to understand Andy has to be there for the kids.” “We talk about sport or try and see how important it is not to if we can get anywhere with bowling ‘help’ patients by finishing Andrew adds: “I struggle with with one hand – it doesn’t matter their sentences for them. things that others take for if we’re bad, at least we’ve tried.” granted like changing nappies “Other people don’t realise and it’s hard to find the right Alison adds: “Because Andy’s how much Andrew struggles words to ask certain questions, strokes were ten years ago and because in many ways his but I get there. It’s been very we have been together all of this disabilities are hidden,” says rewarding seeing the children time, it’s easy for me to forget Alison. “His pure determination develop, but it can also be lonely how much of a struggle things proves that where there’s a will because my experience is are for him. I slip into the habit there’s a way. I am so proud of different to other parents.” of finishing his sentences, everything he has achieved.”

10 Stroke News Spring 2013 Back to work

“One of the hardest things for me was coming out of hospital and not knowing where to turn.”

But John was eager to regain control of his life: “I was determined to fight it. It’s amazing how you can adapt.”

With physiotherapy and speech therapy, John managed to recover his voice and walk again with the help of a walking aid. He wanted to resume his radio career, but found that certain doors had been closed to him. So he began his own initiative by converting his garage into a star-trek themed radio station.

Now John is offering support through his station for other people who have had a stroke. When asked what motivates Returning to him, John says, “I want people to know that they’re not alone. One of the hardest things for me was coming out of hospital the airwaves and not knowing where to turn.” John wants to set up programmes for people who are not able to John Manning, from Glasgow, had been a communicate easily or get out successful radio presenter for 30 years, but his of the house. He also hopes to help people find out about life completely changed when he had a stroke benefits and discuss basic three years ago. needs such as learning to drive again. “A crucial part of this, is As he was going to bed, John The effects, at first, were the importance of humour,” knew something wasn’t right. devastating. John couldn’t speak says John. “Radio is theatre for His arm was weak, he noticed he at all or move properly. Having the mind.” He hopes to provide was dragging his foot, and as he excelled in his radio career and entertainment for his listeners looked in the mirror, he noticed been recognised by the Queen and some light relief for anyone part of his face had drooped. for his services to broadcasting, who may be at their lowest ebb. Having heard the FAST stroke this was particularly hard for him recognition campaign, broadcast to take. “I thought my life was To find out more about John on his own station, John realised over,” says John, especially when and his project, email him on: that he was having a stroke. his relationship sadly ended. [email protected]

Stroke News Spring 2013 11 Rachel’s half-mile challenge Last year Rachel was I faced with the physical end of the road and back – first challenge of regaining my clutching the pram, then holding Inglefield, from London, balance and movement, but onto someone and finally and her family took part also the emotional questions by myself. surrounding my future and in Step out for Stroke. recovery, especially with such The day of the walk, I was She tells us her story. young children. Immediately surrounded by my friends after the stroke, I had trouble and family and it felt so good Our son was born on 21 February walking and resorted to crawling to know I had reached my goal. 2012, and ten days later I had a or ‘walking along’ walls to keep stroke and secondary bleeding myself upright in the house. Rachel and her family are taking on the brain. Pregnancy-related part in Step out for Stroke again strokes like mine are apparently Last May, I set myself a challenge this year. We would love people rare. I spent ten days in and out to walk half a mile. As part of the of all abilities to come along and of hospital, being cared for in Stroke Association’s Step out join her. We’ll help you set your the Acute Stroke Unit. for Stroke walk, my family and goal and enjoy a fun day out. friends all joined in to fundraise This is also a great opportunity Looking back, being in hospital with me. Now half a mile was to get together with friends and was the easy bit as I had all a huge challenge for me, but family so why not invite them the care and expert advice I needed something to work along to fundraise with you? I needed. I had no idea that towards. I needed to feel that I leaving hospital after a stroke could achieve something. I built Find out more by visiting was going to be such a terrifying up my strength, over the days, www.stroke.org.uk/stepout and lonely experience. Not only by walking to the postbox at the or calling 029 2052 4426.

Stroke News Spring 2013 12 Research

Could anti-depressants aid stroke recovery? Anti-depressants could reduce your disability and dependency after stroke, even if you are not depressed, according to recent research.

Research undertaken last year, at the University “We now need to carry out a number of much of Edinburgh, suggested that a class of anti- larger clinical trials to establish exactly if, how and depressants called selective serotonin reuptake to what extent anti-depressants can help stroke inhibitors (SSRIs) may reduce your dependency, survivors recover.” physical disability, depression and anxiety, in the first year following your stroke. Recognising the need for further research, at the Stroke Association, we recently funded the start-up The research also suggested that you could benefit phase of a large trial. This will involve giving stroke from taking anti-depressants if you’ve had a stroke – survivors fluoxetine treatment (a type of anti- even if you’re not depressed. depressant) for six months after they have had a stroke. “Anti-depressants have been successfully used for many years to relieve depression,” says Professor It will test whether fluoxetine improves their mood, Gillian Mead, Professor of Stroke and Elderly Care level of fatigue, language and memory difficulties Medicine at the University of Edinburgh. “However, as well as their physical recovery. Around 3,000 it now appears that they also have effects on patients from all over the UK will be taking part the brain that may help patients make a better in the trial. recovery from the physical effects of stroke. “If the clinical trials are positive, anti-depressants “We don’t yet fully understand how anti-depressants could be used to reduce the disabling effects could boost recovery after stroke, but it may be of stroke in tens of thousands of patients every because they promote the growth of new nerve year,” says Dr Dale Webb, the Stroke Association's cells in the brain, or protect cells damaged by Director of Research and Information. “Although stroke. Also, by preventing depression, the drugs we are a long way off seeing anti-depressants may help patients to be more physically active, given routinely to stroke patients, we look forward which is known to aid overall recovery. to the results of this promising research.”

13 Stroke News Spring 2013 Your £3 a month will help us to make major advances in stroke research

Please join the Stroke Association as a Research Partner and help us to push forward with Help researchers like Dr Sprigg develop new treatments vital research.

Research Partners are scientists, stroke survivors Thanks to people like you, much of what is known and supporters of the Stroke Association who about stroke has come from research funded by the are all playing an integral role in driving forward Stroke Association. Last year, our supporters helped our research programme. Just £3 a month will us to invest £2.8 million into stroke research. help fund new research that is essential if we are But our programme must continue if we are to to develop ground-breaking treatments, improve discover life-saving medical breakthroughs. prevention methods and help stroke survivors Will you support our research by donating £3 to make their best possible recovery. a month, please?

To set up a direct debit, please fill in your details below and return Instruction to your Bank or Building Society to pay by the form to: Freepost RRZA-KCEU-UKSB, Research Partners, Direct Debit Stroke Association, 1 Sterling Business Park, Salthouse Road, Service User Number 6 7 6 6 0 5 Northampton, NN4 7EX. Thank you. Please fill in the form in CAPITALS using a ball point pen I wish to make a monthly gift of £3. Or my own choice of £ Name and full address of your Bank/Building Society I would like the payments to start being taken from my account To: The Manager Bank/Building Society from the 1st or 15th day of (month). (Please make sure the start date is at least one month from today) Address: Please provide your full address below, so we can process your Postcode: details properly. Name(s) of account holder(s) Name: Bank/Building Society account number: Address: Postcode: Branch sort code: / / Telephone number: Reference No. (for internal use only) If you would be happy to receive information about the Stroke Association by email, please enter your email address here: Instruction to your Bank or Building Society: Please pay the Stroke Association Direct Debits from the account detailed in Email: the Instruction, subject to the safeguards assured by the Direct If you would prefer to set up your Direct Debit or make Debit Guarantee. I understand that this Instruction may remain a donation by phone, call 0300 330 0740. with the Stroke Association and, if so, details will be passed You can also give online: stroke.org.uk/donate electronically to my Bank/Building Society.

To enable us to claim the tax already paid on your donation, please tick and date below. This will mean that we’ll receive Signature(s): an extra 25p for every £1 you donate. Date: A gift of £3 would be worth an additional 75p to help fund more vital research. I am a UK taxpayer and would like the Stroke Association to treat all donations I have Banks and Building Societies made in the last four years, and all donations I make hereafter, as Gift Aid donations. may not accept Direct Debit I understand that I must have paid an amount of income tax or capital gains tax at least Instructions for some types equal to the tax that all charities reclaim on my donations in any given year. I understand that taxes such as VAT and Council Tax do not qualify. of account. Date: _ _ / _ _ / _ _ _ _ Sorry, I am not a UK taxpayer, and therefore cannot take part in Gift Aid. Ref: ACGSN

Stroke News Spring 2013 14 Life after stroke Picture this Tony Watson, from Stechford in the West Midlands, has been taking pictures for over 40 years. He has had three strokes, which have left him with weakness on one side of his body and speech loss, but this hasn’t stopped him from taking his stunning photos.

How did you get into photography? Many years ago, in my twenties, I joined a camera club in Birmingham and did very well in club competitions. I think I had the eye for it!

So, how do you take such beautiful photos? Always take a camera out with you – you never know when you might come across a good photo opportunity. Having a compact digital camera helps. Note the importance of foreground, background, angle, and light and try and be creative with each shot. “This was taken last year when we went to the Farne Islands, How did the strokes affect you? off Northumberland. I took the picture on Staple Island where For many years I didn’t do you can get off the boat and view the puffins.” much photography due to work, etc. Then after my first stroke, feeling low, I was told What else has helped you? about the local stroke club, and My wife, Marlene, saved my since then I have never looked life when I had my second back. It boosted my confidence stroke. She reacted really wholeheartedly, and I started fast and now often helps my photography again. It was a at the stroke club baking setback when I had the second cakes! I enjoy helping fellow and third strokes, but then stroke survivors now as a again, the marvellous physio volunteer for the Stroke and speech therapy have Association at the East helped me immensely. Birmingham Stroke Club.

Stroke News Spring 2013 15 Feature

Distress Hesitation

Tiredness Anxiety Scared

How a stroke hit me – a Many of us are familiar with the physical effects of stroke, but the emotional impact can be harder to recognise, as Dr Tony Saunders’ story illustrates.

Tony Saunders, from Hampshire, had a stroke When Tony was back at home after the stroke, he 14 years ago when he was 58. He had been was very tired and he found it easier to let people exercising in the gym when, suddenly, his vision speak to him, a skill he had developed in his role as a blurred and he fell sideways, hitting his head on psychiatrist. He found that he had to push himself to the floor. He tried to get up but was unable to talk. His speech and language therapist helped him move. He then tried to talk but he wasn't able to. to practise what he wanted to say in his mind before attempting to say it out loud, which worked but was Tony has very little memory of the ambulance a slow process. His speech became worse when or his journey to hospital. But he does remember he was tired, anxious or if he'd been drinking, but becoming distressed and panicky as a result of gradually this improved. Tony laughs: “Luckily, I can what was happening, especially when his family now drink again without the dreaded effects.” visited him in hospital and he was unable to communicate with them. “It was a very frightening Tony was desperate to return to work as a child experience,“ says Tony. "I imagined my family were and adolescent psychiatrist, but returning after all thinking I was going to die; that was certainly five months was too soon for him. "I found myself what I was thinking at the time.” Not being able hesitating to talk in meetings, and sometimes to communicate made this an especially difficult stuttering," he recalls. "One of my colleagues time for Tony and his family. said that initially I sounded like a dalek, but with

16 Stroke News Spring 2013 Therapy Recovery Practice

Support Listen Advice

How a stroke hit me – a psychiatrist’s perspective continued practice and by focusing on the rhythm in the ward. This made him feel anxious – he'd start of my speech I improved.” to stutter and he would lose his place in the story. As a psychiatrist, he realised that this is a common Although Tony had physiotherapy and speech and symptom of post-traumatic stress disorder. language therapy, he was offered very little support Thankfully, these vivid reactions have stopped for his emotional needs after his stroke. He says, over time. “Being able to laugh at my mistakes in my attempts to regain my speech was important to me. In the Tony now gives regular talks to medical students beginning I would confuse ‘yes’ with ‘no’.” His wife about stroke, explaining what it feels like and was a great support and he says that sharing the what helped him in his recovery. They listen avidly same sense of humour really helped his recovery. because of his first-hand experience, not just because of his medical background. Tony would Tony wanted to be able to share his experience encourage other stroke survivors to attend of stroke with others, but found that when he told groups or clubs where they can meet people who people about his stroke, he felt as though he was have had a similar experience and share their reliving the event and would imagine himself back problems and advice.

Last autumn, at the Stroke Association, we carried out a survey to find out about the emotional impact of stroke. This has been our largest ever survey and we would like to express our huge thanks to everyone who took part. We received around 3,000 responses. Look out for the report based on the results, which will be published as part of Action on Stroke Month.

Stroke News Spring 2013 17 Feature Not just a man’s best friend…

She could not believe her luck when they later contacted her to say they had a suitable mature dog. “When I went down, this chocolate lab came straight up to me – it felt like we knew each other already,” recalls Grace.

Although a care team visits Grace in the mornings and evenings to help with tasks such as shopping, housework and organising her medication, she knows they cannot be there all the time. “My life is completely different now I have Geri. I was quite lonely before, but not now.

“She opens and closes doors, Grace Gurney tells us how her canine friend for helping with many of the tasks life, Geri, helped her get her independence back. that make me tired, which conserves my energy. She 74-year-old Grace has been to have a major stroke and I was empties the washing machine through so much. She suffered in hospital for three months, for me, which is a great help as from meningitis in her thirties paralysed down one side,” bending makes me dizzy and and then became paralysed in says Grace. there is a risk I might fall. She her face, losing her hearing on picks up all sorts of things I the right side. She was diagnosed “Eventually my partner passed away drop and as my dexterity is with a brain tumour, which later and I was left feeling vulnerable a bit wobbly, she waits until had to be removed. Grace needed and alone. My balance is very poor she knows I have full hold of further surgery on the nerves on one side due to the stroke and the item before letting go.” in her face. my hearing loss, which means I find bending down very difficult.” Geri is cherished by Grace for her When Grace’s partner developed Grace heard about a gentleman patience. “Sometimes it takes Alzheimer’s disease, she became who had a dog to help him and later me a while to get my words out, his carer. “The stress of that and applied for one herself through but Geri patiently sits and waits for my own health problems led me the charity, Canine Partners. her instructions until I’m ready.”

18 Stroke News Spring 2013 “Before Geri, I was having a stroke every three to six months, but I haven’t had one since I had her.”

Everyday tasks are much easier up to me and puts her nose on with Geri around. “She is always my hand. If I don’t respond, she there for me whether it is to fetch nudges my arm or puts her front my slippers, pull my socks off or legs onto my lap to make sure generally help me with whatever there is nothing wrong with me. I need doing.” “Geri is my carer as well as my She also provides Grace with companion. I feel I have won peace of mind. Because Grace the lottery to have her in my life. has had numerous strokes, I believe Geri was sent from she knows she is susceptible God and we are both taking to having another. So Geri has care of each other – she has been taught to open a sliding given me hope.” door at home and press the alarm should Grace be in trouble. Canine Partners 08456 580 480 “Before Geri, I was having a www.caninepartners.org.uk stroke every three to six months, but I haven’t had one since I had her,” says Grace. Previously, she also felt very conscious of her face when going out, and her hearing problems made it difficult to cross roads. “Having Geri with me changes this so much,” says Grace. “I feel I have a new sense of freedom thanks to Geri; we are regular ones for going out all over the place!” Now that Grace feels stronger, she has rejoined the choir at church and Geri sits by the organ quietly. “We go shopping and I have joined a friendship group. Having Geri with me helps to open up conversations and has broadened my social circle.”

And Geri is also a creature of routine. “If I haven’t got up by 7am, Geri jumps on the bed to check I am ok,” laughs Grace. “Sometimes I fall asleep during the day and Geri always comes

Stroke News Spring 2013 19 Focus

GardeningA great way to keep active and happy Spending time in the great outdoors can really lift your mood, but you may prefer to stay a little closer to home. Doing some gardening can make you feel happy, healthy and more confident, as stroke survivors in Tameside have been finding out.

Planting the seeds Reaping what you sow we've been working.” Others Joyce Booth and colleagues “It’s become a bit of a family enjoy escaping the everyday have been running a stroke outing,” says Joyce. “The local routine like John, who says, survivors’ allotment in community has been very “It’s very relaxing and makes Tameside, in north-west welcoming. The allotment was you forget your worries". England, since 2010. an eyesore when we started – you couldn’t see the flowerbeds If you’re interested in joining a Every week the group visits for the weeds! Those involved gardening group, call our helpline the allotment to tidy up the feel less isolated and much on 0303 3033 100 to see what plot and grow vegetables. more confident being out and services are available near you. about, as well as more fit.” Take a seat Grow your own! There are raised beds so Janice, a volunteer, says it’s Why not try growing your own that people can sit down hard work but rewarding. “I love seasonal vegetables at home? whilst gardening, and tools it when we all sit around the Your vegetables will taste better are provided for everyone. table with drinks and biscuits and you’ll save money on your There’s even a greenhouse. laughing and chatting after shopping, too.

Useful contacts March: peas, beetroot, – Visit the Stroke Shop to browse for specialist equipment: onions, sweet peas www.strokeshop.org.uk/Exercise_and_Leisure/Gardening/ April: strawberries, default.aspx French beans – Thrive, www.thrive.org.uk, helps people with disabilities continue to enjoy gardening. For useful tips visit www.carryongardening.org.uk May: tomatoes, – For information about eating and growing seasonal food, visit courgettes, pumpkins eatseasonably.co.uk.

Stroke News Spring 2013 20 Focus Money matters Benefits: what are the latest changes?

This April, we'll see a huge change in the benefits system when Disability Living Allowance (DLA) is replaced by Personal Independence Payment (PIP). We answer some of your questions about the new benefit.

What is Personal Independence have a face-to-face assessment Payment (PIP)? with a healthcare professional. If you are aged between 16 and 64, you can claim PIP to help I get DLA. When will the towards some of the extra changes affect me? costs caused by your ill health or PIP will be introduced for disability. To qualify, you must new claims first, but eventually have had the condition for three everyone now getting months and it must be expected DLA will be reassessed to last for at least another for PIP. nine months. You can get PIP whether you are working or not. If your circumstances It is not means tested or taxed. change or your award period for DLA comes I don’t get DLA. How do I apply to an end, your new for the new benefit? claim will be for PIP. PIP is being introduced in some areas for new claims from April. Otherwise, the earliest From June PIP will be available you will be asked to in the rest of the UK. claim PIP instead of DLA is October 2015. As part of the application process, they will look at whether you are able to carry out essential tasks like looking after yourself, making decisions and Where can I get more information on how the changes to communicating with benefits might affect me? other people. There are other changes to benefits planned. If you are worried or would like more information our Stroke Helpline can tell you where You will make an initial claim on a you can get more specialist advice. Call 0303 3033 100 or email form and then you will probably [email protected]

Stroke News Spring 2013 21 Focus Looking for insurance cover that suits your needs? Do you want the confidence to feel carefree whilst you’re away? Having a stroke can affect your chances of getting travel insurance cover, or the cost of your premiums could be much higher than average. With this in mind, Stroke Association Insurance Services provide a range of insurance products specifically for stroke survivors, their families and carers. A customer from the West Midlands said: “Two or three people have mentioned the service to me and when I spoke to your team they were so understanding and kind. They know their job so thoroughly and are very efficient. The process is easy for the layman. I can understand all the questions asked and the price is competitive, too. I’m not a 21 year old with a clean bill of health, so don’t expect to pay the same. I was made to feel as though I mattered!” To find out more, call01603 828 396 – or visit The Stroke Association is an Introducer Appointed Representative of Heath Lambert Limited. Heath Lambert Limited is authorised and regulated by the stroke.org.uk for a 5% discount when purchasing Financial Services Authority. Registered Office: 9 Alie Street, London E1 8DE. travel insurance online. Registered No.: 1199129 England and Wales. www.gallagherheath.com

Welcome to our Life After Stroke Centre

Have you visited our Life After Stroke Centre yet? It's based in Bromsgrove near Birmingham. Our centre is a meeting place for anyone affected by, or with an interest in stroke. We're bringing the centre to life this year with the launch of our activities programme. You can benefit from regular advice and information sessions, drop-in services, with guidance on using To find out more call01527 903903, computer programmes if you've had a stroke, email [email protected] or visit and fun activities such as Tai Chi and singing. www.stroke.org.uk/lifeafterstrokecentre.

22 Stroke News Spring 2013 Ask First to prevent a stroke later

Atrial fibrillation (AF) is the most common type If you have AF it’s of irregular heartbeat. It affects how your heart important that you works and means that your heart may not be get the right treatment pumping as well as it should. As a result, blood – both to control clots are more likely to form in your heart, your condition and increasing your risk of stroke. to reduce your risk of having a stroke. Your AF can cause symptoms such as palpitations GP will assess your (being aware that your heart is beating fast), risk and advise you breathlessness, chest pain or fatigue. on the right type of Our Ask First campaign aims to raise awareness treatment for you. of this important condition and encourages people to ‘ask first to prevent a stroke later’. For more information on AF, its link to stroke If you are concerned about AF, or have any and to download useful resources visit our of these symptoms, ask your doctor to check website at www.stroke.org.uk/askfirst your pulse. Have you been affected by stroke? Then you probably have a lot to say. The UK Stroke Assembly is the annual event for stroke survivors, family members and carers.

You will have the opportunity to: • listen or participate in workshops When? 31 May and 1 June • learn from leading figures in stroke research, (choice of one or two days) policy and campaigning Where? East Midlands Conference Centre, • share your stories with professionals, Nottingham, NG7 2RJ policy makers and other stroke survivors How much does it cost? Between £25 and £50 • try out new forms of rehabilitation per person. This includes hotel fees and meals. and relaxation How do I book? You can book online or by post • meet other people affected by stroke. until 24 April.

This year we’ll be covering: To find out more call0113 201 9792 or visit • benefits, IT and stroke, alternative therapies, www.strokeassembly.org.uk. emotional wellbeing, stroke research and more.

Stroke News Spring 2013 23 Support us What’s on across the UK Have fun and take action on stroke – there’s something for everyone!

Walks Resolution Run 5k Run to the Beat Beach Boulevard, Aberdeen London Glamis Castle 28 April 8 September Step out for Stroke Walk 0131 555 7252 020 7566 1523 Scotland [email protected] [email protected] 5 May 0131 555 7252 Manchester Marathon Great North Run [email protected] 28 April Newcastle 0161 742 7467 15 September London 2 Brighton [email protected] 0161 742 7469 Challenge [email protected] 25 and 26 May EMF 5k/10k/Team Relay 020 7940 1344 Edinburgh Berlin Marathon [email protected] 25 May 29 September 0131 555 7252 020 7566 1523 Trans Pennine Challenge [email protected] [email protected] Manchester to Sheffield 22 and 23 June Edinburgh Marathon / Royal Parks 0113 2019790 Half Marathon Half Marathon [email protected] 26 May London 0131 555 7252 6 October Thames Path Challenge [email protected] 020 7940 1344 14 and 15 September [email protected] 020 7940 1344 Manchester 10K Run [email protected] 26 May Dublin City Marathon 0161 742 7484 28 October Runs [email protected] 028 9050 8053 [email protected] Rock ‘n’ Roll Half Marathon Bupa London 10,000 Edinburgh 27 May 14 April 020 7566 0311 Jumps and abseils 0131 555 7252 [email protected] The Europa Abseil [email protected] The British 10k Belfast Brighton Marathon London Dates throughout 2013 14 April 14 July 028 9050 8053 020 7566 1523 020 7940 1351 [email protected] [email protected] [email protected] The Ultimate Skydive London Marathon Virgin Active Marathon Northern Ireland 21 April London , 27 and 28 July Dates throughout 2013 020 7940 1344 020 7940 1344 028 9050 8053 [email protected] [email protected] [email protected]

24 Stroke News Spring 2013 What’s on across the UK

Sip for Stroke You can help make Why not get together with friends and organise a difference in a Sip for Stroke party? a matter of seconds. Rides You can call 0207 566 1525 or Text ‘Stroke’ to 70007 Thames Bridges Bike Ride email [email protected] to make a donation of London to find out about events in £5 and support our 12 May your area. 020 7566 1523 vital work today. [email protected] Swims Texts cost £5 plus your Ride 100 Great North Swim standard network rate of London Cumbria which a minimum of £4.70 will 4 August 15 and 16 June go to the Stroke Association. 020 7940 1344 0161 742 7469 Full terms and conditions at [email protected] [email protected] www.stroke.org.uk/textterms

Stroke stars Two teams of swimmers from the first time ever Mourant Ozannes, in the that the Jersey to Channel Islands, have raised direction more than £8,000 for people leg has been affected by stroke. They completed. was never a sure thing that we completed an unprecedented would succeed. Now that we simultaneous inter-island Both teams battled choppy have totalled the funds raised relay challenge. water, jellyfish, and mist, but we are even more delighted. Not they were spurred on by the only do I have to thank the team The teams achieved their Channel Islands Airsearch plane, who took part, but we are all remarkable feat last September which made several low passes very grateful to those who have in a combined time of just over over the swimmers. supported the Guernsey Stroke 24 hours, with the Jersey to Association.” The challenge Guernsey leg swum in 11 hours “We were overjoyed when we was achieved thanks to the 40 minutes 37 seconds and the completed the swim,” says Mark help and expertise of a number team from Guernsey reaching Torode, who led the Guernsey of volunteers who helped with the Jersey coast in 12 hours team. “We had put in so much planning and preparation, and 20 minutes. It’s thought to be planning and preparation, but it crewed the support craft.

Stroke News Spring 2013 25 Health

Feeling anxious It’s common to experience a rollercoaster of emotions after stroke, whether you’re caring for a loved one or have had a stroke yourself. If you’re losing sleep worrying, it’s important to recognise your feelings and seek help.

As with many traumatic events, a stroke over your situation. Our helpline can offer you happens out of the blue and can leave you feeling support and information by phone or email helpless. It’s common to feel anxious, depressed, (contact details below). frustrated, angry or bewildered afterwards. No two strokes are ever the same so try not to Find ways to relax your mind and body. There compare your experience with someone else’s. are lots of different ways to relax, like soaking in a hot bath, listening to calming music, reading, What’s wrong with me? meditating, deep-breathing exercises or Q If you’re feeling fearful and uneasy, it’s likely gardening. Try to find something that works you’re suffering from anxiety. Have you noticed for you and build it into your daily routine. your heart beating faster or your muscles tensing a lot? This is the effect of adrenalin preparing you Don’t suffer in silence. Share your feelings for action, which is a typical sign of stress. You with someone close to you or contact us. may also feel short of breath and dizzy. Anxiety We can also put you in touch with organisations can arise suddenly, or may develop gradually. that can help you to meet others in a similar situation. If your feelings of anxiety persist Would it help to pinpoint my anxieties? or get worse, let your doctor know. They should Q Yes, it may help to identify what is worrying be able to recommend the right therapy for you. you most. Perhaps it is the fear of having another stroke, financial worries, being unable to communicate and feeling embarrassed in social situations, or being unable to drive or return to work. Our contact details How can I help myself? Q After identifying the source of your stress, Our Stroke Helpline: a good starting point is to seek out information. Call 0303 3033 100 Being informed takes away the fear that arises Email [email protected] from uncertainty and gives you some control

26 Stroke News Spring 2013