Books / Further Reading
You may be interested in the following books, many of which have been written by stroke survivors about their personal experiences. They have been reviewed by stroke survivors.
Back to Reality: A Journey – by Bernard Jones
ISBN 978-14490272254 Published by AuthorHouse,
RRP £7.99 Buy here
Many folks are still unaware what a stroke is or of its devastating effects. This short book by one of the members of the Milton Keynes Different Strokes group tells you.
Bernard is a brave and determined man, his story is told in a simple and moving style. He describes his feelings about ‘the frustrations that …become overpowering and can launch you into spasms of uncontrollable rage that leave you totally exhausted and devoid of any hope that you can overcome the setbacks.’ His faith also helped.
He suffered two strokes aged 62, the latter one being very severe, though only his son uses the word ‘severe’. He also had a heart attack and a below-knee amputation of his leg.
In some parts of the book, his two children tell the story in their own words, though with a few telling differences. Sam says ‘I won’t go into details but unfortunately the prescription was not set correctly by the hospital’. Madeleine is more direct: ‘However when he had suffered the first stroke he was never given this medication and I believe it would have prevented the second [stroke].’
Both of them are also very brave: ‘in that space of 10 minutes Madeleine and I aged about 5 years each’ – chips off the same block. Bernard says, ‘They were suffering as well as me and I would have to be aware of their feelings as well. It is very easy to become consumed by your own problems and forget how much others can be affected.
Review by Mike Carpenter
Blackbird Singing by Cate Collinson
Kindle eBook available at http://www.amazon.co.uk/Blackbird-Singing-Cate-Collinson-ebook/dp/B00IGEI2AW
Blackbird Singing is the true story of Emma and Mark over a 20 year period from the early days in their relationship through to the devastating stroke that hit Emma and how it changed both of their lives.
Emma tells her story through her own eyes, often with great detail as to how the other people in the storyline react to the ensuing series of events that she encounters from her initial treatment and subsequent rehabilitation period. There will not be a stroke survivor or carer who will not be able to relate to parts of Emmas story and the reader soon becomes very fond of Emma and secretly cheers on every milestone that is reached. Often the strokee is so tied up in their own recovery that they forget (understandably) how family and friends are left to cope and the book addresses these issues beautifully.
Following a conversation very early on with a hospital visitor, Emma decides that the only way she will recover and reclaim her life is to get out there and make it happen. With this in mind we follow Emma as she rebuilds her life over the years, discovering new relationships with loved ones and friends, journeys abroad on a dream holiday and tackling great challenges for charity.
I would recommend this beautifully written book to anyone who has an interest in stroke and recovery, particularly in younger people. It is written in a great observational style that doesn’t bog the reader down in too much technical ‘stroke talk’ but illustrates how a stroke survivor views the world from their new position in life.
Review by Linda Compton
Coping With Life After Stroke – by Dr Mareeni Raymond
ISBN 978-1-84709-058-4 Published by Sheldon Press, RRP £7.99
This book covers all the subjects from diagnosis, hospital care, tests and treatments, recovery, nutrition, psychology and prevention of further strokes. It also contains a list of support agencies and advice and help for carers.
This book is sympathetically written, easy to read and understand because it is written in plain English. It deals with all aspects of Stroke from diagnosis to recovery, I particularly liked the high-lighted sections which give useful tips. It covers all age groups, if not in detail it tells you who can help. It also helps the carers/family of the stroke survivor giving them advice and people to turn to at what can be such a dramatic life changing event. A good read which my husband and I would have found useful in the early days after my stroke.
Book review by Genise Turnbull
Go to http://www.lulu.com/product/paperback/four-minute-warning/12313458 to order a copy priced £9.99 +p&p or £5.00 for a PDF download.
I have produced a novel based on my experiences of suffering a Brain Haemorrhage when I was fourteen years old. My novel ‘Four Minute Warning’ chronicles the moment the haemorrhage struck, the emotion of waking from my coma with no idea what happened to me and why I was paralysed and unable to speak. It tells of my recovery and return to school and my teenage life in general.
“This book is different from the other Stroke Survivor Stories that I‘ve read. The author was just 14 when he suffered his Subarachnoid Haemorrhage.
His style is not just an account of the events surrounding his stroke, it is more. He decided to make it semi-autobiographical. This means that while he took a few liberties about times, places, and some of the people he met on the way, he could stay true to his story and write honestly about his stroke and its effect on his life thus far.
I enjoyed this book; it’s so different to hear what it is like to be a teenager who has had a stroke. The problems a pubescent boy has with life without a near death experience are traumatic enough, but dealing with his stroke and the events that follow makes this young man remarkable.”
Book review by Genise Turnbull
Hemispheres: Inside a Stroke – by Karen Lazar
ISBN: 9781920397241. Published by Modjaji Books, RRP £15.95
Waking in hospital after a post-operative stroke, Karen finds one side of her body paralysed and her world knocked out of kilter. The book charts her experiences from Metamorphosis, through Rehabilitation and Adaptation.
Quietly reflective, deeply lyrical, Hemispheres is concerned with returning separated parts into a whole and coming home to the self.
“Described as comic, this short book by a South African author gives a fleeting look at her recovery following a post-operative stroke. The book describes her surroundings as she lays in bed, including the healthcare workers and other patients, and this seems to give her some solace. It is reflective rather than evocative in tone but taking around 2 hours to read, it can be referred back to often. There is some use of South African slang and also some large words that may warrant a dictionary!”
Review by Ann Griffiths
Hand in Hand – by Jane Coupes
This autobiography details the life story of a normal 32 year old woman, whose life is totally turned upside following a massive stroke 10 days after the birth of her second child.
I must admit I scanned over the bits detailing her early life, but was enthralled by the events which led to her stroke and rehabilitation. I empathised with a lot of her struggles as we shared a few things in common. I was 34 years old with a 5 and half month old baby when I had my stroke.
I enjoyed reading about her time in rehabilitation and her struggles with losing her old life but her great strength in making a new one for herself and her family. She is honest about her feelings and tells the events as she saw them. Where appropriate Jane includes the reminisces of others close to her when her memory is clouded because she was so ill.
On a personal note I did shed a tear as she struggles to make a bond between her and her baby son Daniel, it brought back painful memories for me.
Review by Genise Turnbull
Available from www.headway.org.uk or call
0808 800 2244. £3.50
Most people who have a stroke will be left with some form of emotional or behavioural change and in particular anger. This booklet provides an introduction to better understand the mix of emotions, especially anger, and underlines the importance of whole person recovery – psychological and physical together. It will be of interest to family and carers to help stroke survivors through the difficult period of recovery.
It begins with understanding ‘What is Anger’, a combination of thoughts, bodily feelings and what we do with them. It then explains the causes and situations of anger. I empathised with many of the situations – spending a lot of time apologising to people for ‘getting the wrong end of the stick’.
The second half offers coping strategies to help address and manage anger. Split into sections, the reader is able to digest the information in easy bite size chunks. The most useful section is ‘Tips for Family, Friends and Carers’ but it fell short ofproviding real practical resources; instead, it is left to the reader to go and look for themselves.
The booklet would benefit from the inclusion of web addresses and the ‘Frequently Asked Questions’ section would benefit from more questions and web addresses to suitable forums.
Nonetheless, it remains a good introduction to the subject that is nicely interspersed with relevant case study quotes, diagrams and amusing line drawings that engage the reader and enriches the author’s message: anger is a special problem for people after brain injury – to understand, cope and manage these emotions is an important part of recovery.”
Review by John Kelly
Managing Fatigue after brain injury – Headway Publication by Jacqui Cooper & Donna Malley
Available from www.headway.org.uk or call 0808 800 2244. £3.50
The opening paragraphs for me give the perfect definition of Fatigue and what it feels like for the majority of sufferers. Like stroke itself, it has varying manifestations and no two cases are exactly alike. What is common is the way it can affect the way the sufferer thinks, feels and what they do, which can make previous roles and daily activities more difficult and can contribute to people becoming socially isolated.
The booklet describes “Triggers to fatigue”, and how to “Manage your fatigue”, including how this may affect your mood. It gives tips on how to recognise your own personal triggers and to put coping strategies in place. It advises you to pace yourself and have realistic expectations. The booklet also highlights the importance of sleep, exercise, nutrition and hydration, medication, environment and cognitive (thinking) strategies and how managing these will help you deal with your fatigue.
I’m over 11 years into being a stroke survivor and thought I knew loads about fatigue, but this booklet told me things I didn’t know and clarified a lot of things I suspected.
An informative read with realistic suggestions, no miracle cure but lots of useful tips.
Review by Genise Turnbull
Managing Stress for Carers – by Dr Ann Edworthy
Available free of charge to parents from Cerebra – a charity set up to help improve the lives of children under 16 years with brain related conditions.
Visit http://www.cerebra.org.uk for more information.
This book is intended for any parents dealing with the pressures of caring for a disabled child.
Filled with practical tips that are easy to understand, it aims to show parents how they can deal with stress before they experience “burn out”.
I was so impressed by the book – wow!!! The book was so helpful and it was amazing to read about other parents who are going through the same thing. We all seem to be in the same boat!
I really wish I had had this book when we came home from hospital as it would have been extremely valuable to our family. Even finding out about the helpline was amazing – my God we could have really done with that sooner! We didn’t even know that we were entitled to Carers Allowance…15 months later I have now applied! This book is a total bible and should be given to every family!
Review by Soniya Mundy, mum to Kray who had an AVM at the age of 11
Memory Problems after brain injury – Headway Publication by Prof Barbara A Wilson OBE
Available from www.headway.org.uk
or call 0808 800 2244. £3.50
Now two years since my brain injury, I’m at the stage of wanting to understand more about how my brain works and what’s going on up there! So I was very pleased to see this Headway booklet, particularly as memory problems are a big issue for me and things that were initially explained have long since gone!
As someone who struggles to process detail, I was worried I’d struggle to concentrate on 20 pages of information. However, the booklet was beautifully laid out – both clear and simple.
It started with a chapter on the different elements of memory – the types of memories that are initially taken into the ‘in tray’, how long they’re stored for, how they’re filed away and how they’re retrieved. I found it both shocking and reassuring to consider how complex memory is and how it isn’t a simple issue of being continually ‘absent minded!’
Further pages focussed on amnesia and why memory is such a common problem following brain injury. And then followed advice on ways of coping with poor memory e.g. keeping information simple and writing lists. As per usual I was hoping for a golden solution to my problems! Sadly, I found the advice, although useful and well written, wasn’t anything other than the common sense I’ve used through life. However, it’s always useful to have these things reinforced! It also included a list of further reading and useful contacts.
Overall, a useful booklet that I will store away for future use – so long as I remember it’s there!”
Review by Chloe Kegg
My Year Off – Rediscovering Life After Stroke – by Robert McCrum
ISBN: 978-0330457118. Published by Picador, RRP £8.99
When I was just 42 I suffered a stroke. Paralysed on my left side and udnable to walk, I was confined to hospital for 3 months, then spent a year recovering, slowly getting myself back into the world. If there was one organisation that helped me to face up to what had happened it was Different Strokes.
When I was seriously ill in hospital, I longed to read a book that would tell me what I might expect in convalescence, and perhaps also give me something to think about. There are many books about stroke in old age, but I was young and had been vigorous and there was nothing that spoke to me in my distress.
For several weeks I lay in the National Hospital, Queen Square, Central London, with “why me?” resounding through my consciousness. Slowly “why me?” became “if me, ?”. And then I began to form the idea of writing about the horror of my experience from within, a kind of worm’s eye view of a catastrophic illness that might provide help for those who had suffered as I did.
I wanted to explore the unmentionables of stroke: the rage and the depression, the crying and the fear of the night. I wanted to acknowledge the sense of shame and indignity that afflicts the stroke sufferer, young or old. I wanted to tell the health care workers what it felt like to feel suddenly on the scrap heap of life. I wanted stroke doctors to know that the medical profession’s refusal to commit itself to an interpretative prognosis with very many stroke patients can be a source of immense anger and frustration. Also, more positively, I wanted to record my opinion that, if my example is to be trusted, the brain seems to be an astonishingly resilient organ, and once capable, in certain circumstances, of remarkable regeneration. That was when, in my head, I began to write ‘My Year Off’.
Available free to disabled parents and parents-to-be, and at a cost of £6.00 including p&p to others.
For further info or to order a copy of this guide please contact:
DPPI Info Service, Unit F9, 89-93 Fonthill Rd, London N4 3JH
Tel: 0800 018 4730, Email: firstname.lastname@example.org
This is a clear and concise information booklet. It doesn’t go into great detail about anything but highlights all the major areas of concern for disabled new parents such as safety at home, handling, feeding, nappy changing, bathing and car safety.
It is written in a clear non jargonised language, using a few diagrams and appropriate anecdotes to illustrate points. If it doesn’t have tips in the text it directs you to useful organisations, so further research is the responsibility of the reader.
I was impressed by the list of useful organisations and resources.
Book review by Genise Turnbull
Different Strokes: An Intimate Memoir For Stroke Survivors, Families, and Care Givers – by Steven Boorstein
ISBN: 978-1616084714. Published by Skyhorse Publishing RRP £10.99
Steven suffered a stroke at the age of 53 and his book relives his life just before, during and after the stroke. Steven’s book will raise an eyebrow, draw a smile, elicit hearty chuckles and provide much needed insight into his journey ahead and makes for an ideal reference during the dark times ahead.
Different Strokes differs, in a good way, from many of the other books on the market today because Steven makes you feel part of its narrative and delivers a compelling story. Often, stroke is written about in a very dry factual way that is abstract and non-personal to many of us. Different Strokes is both very engaging and enlightening. The book offers a refreshing perspective that is life affirming and where all stroke survivors can relate to many aspects of Steven’s journey, laid bare, page after page, before the reader. The style of writing makes for easy reading yet the author manages to still include, in great detail, important facts without detracting from the story.
For many of us, there is hope during the ‘fog’ of stroke recovery as we find the necessary patience, determination and stamina to move to the next level. In Steven’s case it takes a while, yet his optimism, and those of the many retold stories included in the book, gives the reader their own sense of hope and offers a source of strength to carry on. Whilst we may differ in our methods of coping with the consequences of stroke – for all of us, survivors and carers alike, we all want to enjoy a better quality of life and Different Strokes uses this universal thread as the narrative throughout the story. Different Strokes is like looking into a mirror – the face may be different but the journey is very familiar.
The author himself sums up the book very well “I believe that the stories in Different Strokes will bring peace, and a better quality of life to survivors and families. Stroke is hell, as all survivors know – but there are often laughs! Together, we tell the whole story, from the heart – with humour and hope – as we face our ups and downs physically, emotionally and cognitively”.
Different Strokes is an essential, must buy book for anyone that has been affected by stroke as it shows us that there is, for all of us, life after stroke.
Review by John Kelly
Running Free by Kate Allatt
ISBN – 9781908006646.
Published by Accent Press, RRP £9.99 Buy here
At the age of 39, Kate Allatt was a busy working mother of 3 who was about to launch her own online digital marketing business.
She was fit and active with no medical worries so when an A&E doctor prescribed Co-codamol for a migraine she went home and tried to relax. Just four hours later she suffered a massive brainstem stroke resulting in a 50/50 chance of survival.
As a result of the stroke Kate was in a medically induced coma for 3 days and when she came round it was discovered that she had ‘locked –in syndrome’, a condition whereby she was literally locked in her own body, unable to move, talk or swallow. Doctors warned her family that if she survived she’d never walk or talk again. For three weeks nobody knew Kate could hear everything the doctors and nurses were saying and it was only by chance that her husband asked her to blink twice if she could understand what he was saying.
Thankfully, through sheer determination and bloody mindedness Kate survived and her book, Running Free is a record of her thoughts, feelings and observations of how the NHS deals with a stroke survivor. It also highlights the very real situation that theAllatts found themselves in when Mark, Kate’s husband, finds himself forced to become a single parent whilst working and keeping three children in some sense of a normal life.
Kate’s sense of humour shines throughout the book and you soon find yourself cheering on every achievement, as though Kate were an old friend. Eight months later, Kate walked out of hospital and had relearnt how to talk and swallow.
The book should be on the reading list of every doctor, nurse and support worker working within a neurological unit. Few people survive or come out of LIS so valuable lessons can be learnt from what Kate has been through. As a fellow strokee, I found it a fascinating read and couldn’t put it down. I would recommend the book to anyone, regardless of whether you have been affected by stroke, as the book is a real feel good story, with lots of ups and downs throughout but one that ultimately proves with determination, the support of family and friends and a good rehabilitation team there is life after a stroke.
Review by Linda Compton
tronger After Stroke – by Peter G Levine
Published by Demos, RRP £13.00 buy here
’Stronger after Stroke’ contains useful information and guidance on post-stroke physical recovery. Although aimed primarily at stroke survivors it may also be useful to families and carers as it outlines what they may expect for a loved one as they take on the challenge of physically recovering from stroke.
Even the title of the book hints at the challenge to be undertaken in order to make a good recovery: to become stronger involves a long and concerted effort on behalf of the stroke survivor. Self-motivation and partnership working with health professionals are two of the recommendations for recovery.
The concept of brain plasticity and the ability for new pathways to be formed are clearly explained and give hope to stroke survivors who may have reached a plateau in recovery. Indeed, the very idea of a plateau is challenged using comparisons with training athletes. When an athlete reaches a plateau they look for new training methods, the stroke survivor needs to take a leaf out of the athlete’s training manual.
There are good explanations of spasticity and shoulder pain as well; issues of importance to many stroke survivors. For rehabilitation to be optimised it must carry on when formal therapy is not available, for example, after leaving hospital (or even in hospital as therapy is normally only provided for an hour or two per day, and sometimes not at all on weekends). However, it recommends that all self directed therapy be discussed with therapists or doctors to ensure that it is carried out safely and for maximum benefit. Tools to support physical therapy are well explained – from the simple ones, like using a mirror to help fool the brain into thinking the affected side is acting normally – to more complicated robotic devices to assist arm or hand movement.
‘Stronger after Stroke’ was written primarily for an American audience so some references, for example to Medicare, are not relevant: however, the excellent advice on physical recovery more than makes up for this. Also, it does not deal directly with the emotional upheaval of stroke but there is a useful section on motivation through increasing meaningfulness of any goals. Despite this, the book is well worth a read to increase understanding of stroke’s effect on the brain and to help motivate recovery.
Book review by Christine Stock
Stroke Survivor: A Personal Guide to Recovery: By Andy McCann
ISBN 978-1843104100 Published by Jessica Kingsley Publishers, RRP £12.99
True to its title, this book tells how one man, devastated by having a stroke at a young age, fights back to health and happiness; from being a victim to becoming a survivor with his own programme of recovery.
The last thing Andy McCann, a very active and fit 37 year old, expected to suffer from was a stroke when he was in the middle of instructing a martial arts class. At the time he was an Assistant Head Teacher at a secondary school, teaching PE.
The book is usefully divided into sections, including Andy’s step-by-step toolkit for recovery, current biological information on the brain, nutrition, post stroke fatigue, positive thinking, orthodox and alternative therapies and even dealing with the financial impact of stroke. It also includes other stroke survivors’ stories, a glossary of terms, reference section and useful contacts.
Families and friends of stroke survivors will also find this book very helpful in gaining a better understanding of the silent side of stroke; Andy talks about his feelings during the various stages of recovery and his emotional struggles of confidence and self-worth and how it affected those around him.
This was a book that I couldn’t put down as, although obviously sad and moving at times, it was interspersed with humour that had me laughing out loud, especially when he recounts his attempt at boarding guide dogs as a potential new career.
Andy says “I have learnt more about myself in the last 24 months than I would ever have thought possible and although it has been difficult to deal with, it has been immensely empowering”. He has now used his experiences to set up his own business which provides personal and business skills training and coaching.
Andy is indeed an inspiration to anyone who finds their life shattered by stroke. I can’t help feeling that his sheer determination, optimism and ‘never say die’ approach has been the reason for his success in returning to a full and rewarding life.
He is an example for us all to follow and I would recommend this book to anyone whose life has been changed by stroke, survivors and their families, as its positive attitude would encourage anyone in the process of rebuilding their lives.
Book review by Pauline Sparling
The Successful Stroke Survivor: The new guide to functional recovery from stroke: By Dr Tom Balchin
(Founder of ARNI: Action for Rehabilitation from Neurological Injury: www.arni.uk.com)
Published by Bagwyn, RRP £34.40 buyhere
Also available from www.successfulstrokesurvivor.com
Written by a stroke survivor for stroke survivors with 130 strategies & techniques that can be carried out at home
I have found it invaluable in working with people who have had strokes. The manual is a great reference both of specific exercises and of ‘Best Practice’. I also like how it challenges some peoples’ ideas of what is possible. So many people have the view that once their rehabilitation with the NHS is finished, that’s as good as it is going to get for them. Tom’s presentation of what is possible has the possibility of improving the quality of peoples’ lives.
Review by Stephen Wilson, Different Strokes Exercise Instructor for Colchester group
Understanding Stroke: By Prof Richard I Lindley
ISBN: 978-1903474990. Published by Family Doctor Publications Ltd, RRP £4.95 Buy here
With three strokes in 10 years, my local Brain Injury Unit decided to put me through their education course to help me understand strokes. That, a natural curiosity and sitting occasionally on the Different Strokes telephone helpline has left me with a basic understanding of a stroke, its possible causes and major effects. That was until I read this book which very quickly made me realise how little I knew of the subject.
It covers all aspects of a stroke, sometimes to quite a depth. From what it is, through types and causes, to post stroke care, a simple education for not only the survivor but friends or family who are trying to understand what has happened to the patient. Not that the book talks down to the reader as it educates: you never feel patronised. It describes subjects like type, care, complications, even ‘do not resuscitate’, all in a manner that a non-medical layman can understand. It’s liberally sprinkled with diagrams and I will confess to finding some simplistic. But others help to make clear what would otherwise be a very difficult thing to explain to the untrained. You’re left with a clear understanding, no sugar coated pills, you get the impression the author is prepared to tell you the unpalatable truth where needed.
There are a number of chapters that will be opened immediately by stroke survivors: The “why me?” question is covered by the “Why Have You Had a Stroke” chapter. Of major interest to any survivor will be the “Life After a Stroke” and “Complications After a Stroke” chapters. All are factual, realistic appraisals of the situation.
As well as the index to help you move around the book there is a comprehensive glossary of words explaining what you might have heard used by medical professionals. There is also a compendium of useful addresses of organisations associated with all elements of stroke care. Whilst the internet is good at finding these addresses, I suspect there will be one or two there you hadn’t thought to Google. At the end of each chapter is a bullet point section covering the main parts just covered. It starts as a very easy, quick way to determine whether that chapter is relevant to your own condition or search. In practice you get so intrigued reading the bullet points that you are compelled to read the chapter fully.”
In conclusion, a comprehensive, easily understood description of all aspects of a stroke that should be standard reading for survivors and friends and family alike.
Review by Peter Ort