My Stroke Journey An Easy English book for stroke survivors and their carers Keep this booklet with you in hospital About the Stroke Foundation The Stroke Foundation works across Australia. The Stroke Foundation is not-for-profit. The Stroke Foundation works with: › Stroke survivors. › Family and carers. › Health professionals. › The government. › The wider community. Here are some of the things we do: › We tell people about the risk factors and signs of stroke. › We promote healthy lifestyles. › We work to make treatment better. › We work to make life better for stroke survivors. › We help stroke research. › We raise money to do this work. Visit strokefoundation.org.au for more information. Proudly supported by: ISBN 978-0-9944537-3-0 © No part of this publication can be reproduced by any process without permission from the Stroke Foundation. March 2018. Suggested citation: Stroke Foundation. My Stroke Journey - Easy English version. Melbourne, Australia. Note: The full document is available at We thank you for your support. strokefoundation.org.au 2 My Stroke Journey About this book My Stroke Journey will help you recover from stroke. This book belongs to you. Keep it with you in hospital. Your stroke team will read it with you. How to use this book This book tells you about stroke. This book tells you about: › Hospital and rehabilitation. › Getting ready to go home. The back of the book explains medical terms. If you or your family want more information about the things in this book, you can visit enableme.org.au Working with your stroke team Your stroke team will help you read this book. Your stroke team will use it to make your care plan. A care plan tells everyone how you will be looked after when you go home. The plan includes: › Your goals for getting better. › Things you will change about your lifestyle. › Medication you need to take. › Equipment you need. › Appointments and contact details for people who can help you. The care plan sections are colour-coded light blue. Stroke Foundation – enableme.org.au 3 4 Table of contents About stroke Carer information What is a stroke? 6 Becoming a carer 45 Types of stroke 7 Caring can be difficult 46 Different areas of the brain 10 How stroke can affect you 11 Further information What happens after a stroke 18 StrokeLine 47 The stroke team 21 enableme 48 Family meetings 29 Get help after stroke 50 Making decisions 29 Help for carers 51 How to get more rehabilitation and Reduce your risk see allied health services 53 Stroke support groups 54 Lower your risk of having Strokesaurus (medical terms) 56 another stroke 30 Other things you can do to reduce your risk 33 Care plan pages Your risk factors 34 Care plan contents Signs you are having a stroke 37 The type of stroke you had 8 Stroke team members 22 Rehabilitation and Write down your goals 40 leaving hospital Checklist for leaving hospital 42 Getting better after a stroke 38 Appointments and services 43 Write down your goals 40 Leaving hospital 41 Stroke Foundation – enableme.org.au 15 What is a stroke? A stroke happens when blood cannot get to your brain. Your brain is fed by blood vessels ABOUT STROKE called arteries. Blood carries oxygen and nutrients for your brain cells. Sometimes an artery is blocked or bursts. The blood cannot get to your brain cells. If your brain cells do not get enough oxygen, they die. Different arteries in the brain Middle cerebral artery Anterior cerebral Posterior artery cerebral artery Basilar artery Ophthalmic artery Internal carotid artery Vertebral artery 6 My Stroke Journey Types of stroke There are two types of stroke. Both types of stroke stop blood getting to areas of the brain. ABOUT STROKE In the first type, an artery in the brain gets blocked. In the second type, a blood vessel in the brain breaks, causing bleeding. 1. Blocked artery A stroke caused by a blockage is called an ischaemic stroke (pronounced is-key-mick). The blockage can be caused by a blood clot. A blood clot can get stuck in your brain. Posterior This kind of stroke also happens cerebral when blood vessels get blocked with artery plaque. Plaque sticks to the inside of your blood vessels and makes them smaller. Ischaemic stroke (embolic and thrombotic) Plaques in arteries Artery wall Blood clot Plaque Stroke Foundation – enableme.org.au 7 2. Bleeding in the brain Sometimes a blood vessel bursts in ABOUT STROKE the brain. This is called a haemorrhagic stroke (pronounced hemm-orr-ragic). This type of stroke stops oxygen getting to areas of the brain. This type of stroke can be caused by high blood pressure. This type of stroke can also be caused by a weak spot in a blood vessel. A weak spot in a blood vessel is called an aneurysm. This type of stroke can also be caused if you have a tangled mass of blood vessels Haemorrhagic stroke in your brain. (subarachnoid and intracerebral) This is called an arteriovenous malformation (AVM). Which type of stroke did you have? Ischaemic stroke (a blocked artery) Haemorrhagic stroke (bleeding in the brain) 8 My Stroke Journey I don’t remember the first few days. One minute I was making a cup of tea, the next I woke up in hospital. My husband saw me collapse and he called the ambulance. They took me straight to hospital. They did the first scan, and told him they wanted to give me the clot-busting drug. It must have been hard for him to make such ABOUT STROKE a quick decision. My husband stayed with me almost all the time, sitting with me, waiting for test results and talking with the team. I went home after a few weeks. I still have trouble getting my words out when I’m tired. I’m very glad my husband was able to keep a clear head throughout it all. Linda, stroke survivor 9 Different areas of the brain Frontal lobe Parietal lobe • Motor control. • Touch, pain and feeling hot or cold. ABOUT STROKE • Personality. • Processing information and knowing where your • Concentration. body is. • Problem solving. • Understanding speech. • Planning. • Language. Occipital lobe • Vision. Temporal lobe • Hearing. • Memory of Brain stem Cerebellum hearing and • Breathing. • Balance. vision. • Heart beat. • Control of • Alertness. movement. • Swallowing. • Posture. • Blood pressure. • Fine motor skills. • Sweating. 10 My Stroke Journey How stroke can affect you Stroke affects your brain. How you think Your brain is divided into areas. After a stroke, you may not know what the day or date is. ABOUT STROKE The areas of your brain control different things. You may not be able to concentrate. How your stroke affects you depends You may forget things. which area of your brain is damaged. You may have trouble planning Damage to an area of your brain can things. change: You may have trouble solving › How you think. everyday problems. › How you behave. You may make choices that don’t › How you use words. seem to make sense. You may do things that make you unsafe or › swallow How you . uncomfortable. › How you see. You may find it hard to understand › How you feel touch. your difficulties and how they affect › How you move your body. you. Stroke affects everyone differently. The word cognition is often used to You may have trouble with one or describe thinking, memory and more of these things. judgement. Your treating team will help you with How you behave the things that have changed after You may act differently after your your stroke. stroke. Your personality may be different. You may say or do things that are not right for the situation. You may not even realise you have changed. Neuroplasticity Your brain can adapt to damage. It can change in response to use. Healthy areas of your brain can take over from damaged areas. Neuroplasticity helps you recover from stroke. Stroke Foundation – enableme.org.au 11 How you use words How you swallow You may have trouble with one or Stroke can affect the muscles of ABOUT STROKE more of these things: your throat. › Talking. This makes it hard to swallow food, › Understanding what people say. drink or medication safely. This is called dysphagia. › Reading. If food or drink go into your lungs › Writing. instead of your stomach, it can make This is called aphasia or dysphasia. you very sick. Stroke can also change the muscles How you see you use to talk. Stroke can change the way you see. Your tongue and lips are muscles. double vision When you cannot use these muscles, You may have . Double you have trouble talking. vision is when you see two of everything. When you have problems because the muscles are weak, you may slur your You may not be able to see things on one side hemianopia words. This is called dysarthria. This is called . far When your lips and tongue don’t You may have trouble telling how away move like you want them to, this is an object is. called apraxia. How you feel touch If the muscles in and around your The way you feel touch, pain or vocal cords are weak or paralysed, temperature may change. your voice may sound like a whisper. It may sound hoarse or rough. This is You may have: dysphonia called . › Numbness. › Pins and needles. › Odd sensations in the affected area. 12 My Stroke Journey How you move your body Other changes One side of your body may be weak After a stroke, you may feel pain. or it may not move at all.