Keep This Booklet with You in Hospital About the Stroke Foundation

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

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 6 ABOUT STROKE My Stroke Journey in thebrain Different arteries oxygen, theydie. If yourbraincellsdonotgetenough brain cells. bursts. Thebloodcannotgettoyour Sometimes anarteryisblockedor and nutrientsforyourbraincells. called arteries.Bloodcarriesoxygen Your brainisfedbybloodvessels get toyourbrain. A stroke happenswhenbloodcannot What isastroke? artery Ophthalmic artery cerebral Anterior carotid artery Internal cerebral artery Middle Basilar artery Vertebral artery artery cerebral Posterior 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 10 ABOUT STROKE My Stroke Journey Memoryof • Hearing. • Temporal lobe Planning. • Problem solving. • Concentration. • Personality. • Motorcontrol. • Frontal lobe Different areas ofthebrain vision. hearing and Sweating. • Blood pressure. • Swallowing. • Alertness. • Heartbeat. • Breathing. • Brain stem Language. • Understandingspeech. • Processing andknowingwhere information your • Touch, painandfeelinghotorcold. • Parietal lobe body is. Fine motor skills. • Posture. • Control of • Balance. • Cerebellum Vision. • Occipital lobe movement. from stroke. Neuroplasticity helps yourecover over from damagedareas. Healthy areas ofyourbraincantake It canchangeinresponse touse. Your braincanadapt todamage. Neuroplasticity your stroke. the thingsthathavechangedafter Your more ofthesethings. You mayhavetrouble withoneor Stroke affects everyonedifferently. change: Damage toanarea ofyourbraincan which area ofyourbrainisdamaged. How yourstroke affects youdepends different things. The areas ofyourbraincontrol Your brainisdividedintoareas . Stroke affects yourbrain. How stroke canaffect you › › › › › › ›

How youmoveyourbody. How youfeeltouch. How yousee. How youswallow. How youusewords. How youbehave. How youthink. treating teamwillhelpyouwith

changed. changed. You maynoteven realise youhave right forthesituation. You maysayordothingsthatare not Your stroke. You mayactdifferently afteryour How youbehave judgement. describe thinking,memoryand The word cognitionisoftenusedto you. your difﬁcultiesandhowtheyaffect You mayﬁndithard tounderstand uncomfortable. things thatmakeyouunsafeor seem tomakesense.You maydo You maymakechoicesthatdon’t everyday You mayhavetrouble solving things. You mayhavetrouble planning You mayforget things. You maynotbeabletoconcentrate. the After astroke, youmaynotknowwhat How youthink day ordateis. personality maybedifferent. Stroke Foundation–enableme .org.au problems.

11 ABOUT STROKE 12 ABOUT STROKE My Stroke Journey called It maysoundhoarseorrough. Thisis your voicemaysoundlikeawhisper. vocal cords are weakorparalysed, If themusclesinandaround your called move likeyouwantthemto,thisis When yourlipsandtonguedon’t words. Thisiscalleddysarthria. muscles are weak,youmaysluryour When youhaveproblems becausethe you havetrouble talking. When youcannotusethesemuscles, Your you usetotalk. Stroke canalsochangethemuscles This iscalledaphasiaordysphasia. more ofthesethings: You mayhavetrouble withoneor How youusewords › › › ›

Writing. Reading. Understanding whatpeoplesay. Talking. tongue andlipsare muscles. dysphonia. apraxia.

You mayhave: temperature maychange. The wayyoufeeltouch,painor How youfeeltouch away anobjectis. You mayhavetrouble tellinghowfar one side.Thisiscalledhemianopia You maynotbeabletoseethingson everything. vision iswhenyouseetwoof You mayhavedoublevision.Double Stroke canchangethewayyousee. How yousee you verysick. instead ofyourstomach,itcanmake If foodordrinkgointoyourlungs called drink ormedicationsafely. Thisis This makesithard toswallowfood, your Stroke canaffect themusclesof How youswallow › › ›

area. Odd sensationsintheaffected Pins andneedles. Numbness. throat. dysphagia.

subluxation. your your Changes inthemusclecanalsocause position. Thisiscalledcontracture. your jointmaybecomeﬁxedinone If yourmusclesare tightorweak, loose. tight. Ortheycouldbeﬂoppyor muscles. Theymightfeelstiff and You mighthavechangesinyour your feet.You maybedizzy. balance. You mightfeelunsteadyon You mighthavetrouble keepingyour apraxia ordyspraxia. you wantthemto.Thisiscalled Parts ofyourbodymaynotworklike orleg. arm This cancauseproblems usingyour called one sidedoesn’t moveatallitis on onesideiscalledhemiparesis . If or itmaynotmoveatall.Weakness One sideofyourbodymaybeweak How youmoveyourbody . This is called shoulder socket.Thisiscalled bonetositabitlowerin arm hemiplegia.

and someone to talk to about this. and someonetotalkaboutthis. your relationship. Allofthismayaffect about yourself.Itcanchangeyour feels. Itcanalsochangehowyoufeel Stroke canchangethewayyourbody This iscalledincontinence. it istimetogo. toilet intime.You maynotknowwhen You maynotbeabletogetthe with After astroke, youmayhavedifﬁculty called You mightignore thisside.Thisis recognising After astroke, youmayhavedifﬁculty stroke. Some peoplehaveheadachesafter of changesinyourbrain. body isnotinjured . Thisisbecause You mayalsofeelpainevenifyour your bodyisinjured. The painmaybebecauseapartof After astroke, youmayfeelpain. Other changes going tothetoilet. sex life.You mayneedadvice neglect. Stroke Foundation–enableme .org.au one sideofyourbody.

13 ABOUT STROKE 14 ABOUT STROKE My Stroke Journey your emotions.Triggers canbe: Be aware ofthingsthattrigger lability isverycommon. emotional lability.Emotional cry fornoreason. Thisiscalled After astroke youmaylaughor available. very common.There istreatment depression andanxiety.Thisis emotional difﬁculties,including But youmayhavelong-lasting with time. Emotional reactions getbetter friends. You mayfeelloveforfamilyand You maybehopefulforrecovery. survived. You mayalsobegratefulyou future. You maybefrightenedaboutthe is happeningtoyou. You maybeconfusedaboutwhat you hadastroke. You maybeworriedaboutwhy stroke. You maybeangryyouhada emotions afterastroke. tohavestrongIt isnormal Emotions › › › ›

Noisy places. Anxiety. Stress. Tiredness. make thingseasier. They willshowyouequipment to things differently. They willsuggesthowyoucando better. They willhelpyoudothingstoget since yourstroke. about allthethingsthathavechanged Your treating team willtalktoyou changes Help withthese manage fatigue. fatigue. You candolotsofthingsto Ask yourtreating teamabout understand whyyouare fatigued. Your friendsandfamilymaynot expect. Fatigue maylastlongerthanyou Fatigue cangetbetterwithtime. Fatigue canstartatanytime. only hadamildstroke. Fatigue canaffect youevenif Fatigue makesithard todothings. rest. Fatigue doesnotgoawaywhenyou tiredness.Fatigue isnotlikenormal lack ofenergy. Fatigue isweariness,tiredness or stroke. People oftenfeelfatigueafter Fatigue take notes You canusethispageto Stroke Foundation–enableme .org.au 15 ABOUT STROKE 16 ABOUT STROKE Imagine waking up and finding out improved my imagination, my ABOUT STROKE you can’t say one word. thinking and how I felt. A few weeks after the stroke I These changes expanded my world. managed to say, ‘Hello’. My negative self-talk got in the way Thinking of the word I wanted to say of my recovery. was challenging. I noticed that words have an energy Working out how to pronounce it associated with them. was even harder. ‘Should’ has the energy of guilt. When I could speak, the words I wanted to say were often different to Instead I use words like ‘could’ or the words I actually said. I couldn’t ‘would’ to give me possibilities. trust what I said. I use definite words like ‘will’ or I made good progress to begin with. ‘won’t’. Before long I could get by, despite I don’t just ‘try’ to do something; some mistakes. But I became self- I either do it or I don’t. conscious and fearful. ‘Hard’ is something that cannot I spoke less and less until I felt like move, like concrete. a mouse in the corner with nothing I use the word ‘challenging’ instead, to say. as this suggests the chance of As I lost confidence, my life became achieving something. smaller until I felt as if I was locked Using positive words empowered in a world of my own. I lost my me and drove me forward. enthusiasm, and no-one knew how I felt. Now my speech is mostly automatic, although I still have my moments I realised I had to move out of my when I have to pause and search for comfort zone. words, or think about how to This meant being vulnerable and pronounce them. embarrassed. Best of all, I have gained the I was afraid and scared of what confidence to speak in public. people may think, say or do. Claire, stroke survivor I continued to push the boundaries. I found that increasing my vocabulary

Stroke Foundation – enableme.org.au 17 18 ABOUT STROKE My Stroke Journey Doctors maydoteststolookfor: Other braintests resonance imaging(MRI). tomography (CTscan)andmagnetic These testsare calledcomputerised is damaged. This istoseewhatarea ofyourbrain brain. The doctorstakepictures Brain scans Here are sometypesoftests: Everyone needsdifferent tests. Types oftests They willtrytoﬁndout: The doctorswilldotests. to hospital. After astroke, youshouldbeadmitted What happensafterastroke › › › › › ›

MRI angiogramorCTangiogram). your neckorbrain(byultrasound, Blockages inthebloodvesselsof ( The waybloodﬂowsinyourbrain What How damaged. What What or TCD). transcranial dopplerorTCD). serious caused thestroke. area ofyourbrainis type ofstroke youhad. the stroke was. of your of your Nurses willalsodoregular checks. take Doctors mayalsotestyoururineor Other tests Blood testslookat: to treat you. Blood testshelpdoctorsdecidehow health. Doctors usebloodteststocheckyour Blood tests monitoring). rhythm (telemetryorholter heart foraperiodoftimetocheckthe You mayhavemonitoringofyour enlarged. if thechambersofyourheartare An echocardiogram alsoteststosee a An echocardiogram testsifthere is echocardiogram Doctors mayalsodoatestcalledan is normal. Doctors willcheckifyourheartbeat The doctorswilltestyourheart. Your heartpumpsbloodtoyourbrain. Heart tests › › › › › › ›

blood clotinyourheart. Your Your Your Your How wellyourkidneyswork. Your The wayyourbloodclots. chest X-rays. iron levels. white bloodcellcount. salt levels. blood sugarlevels. cholesterol (fastinglipids). (ECG).

stroke). caused byabloodclot (ischaemic Aspirin issometimesusedforstroke take Your doctorwill tellyouifneedto Other treatments remove thebloodclot. your body. Doctors usethistubeto Doctors caninsertatinytubeinto Clot retrieval brain. clots. Itallowsbloodtoﬂowthe This medicationbreaks downblood Clot bustingmedication There are 2typesoftreatment. Doctors damage. Doctors maybeabletolimitthe from stroke. Doctors Early treatment forstroke Nurses will check your: Nurses willcheckyour: › › › › › › › › ›

You gettothehospitalquickly. ( A bloodclotcausedyourstroke Breathing pattern. Oxygen levels. Oxygen levels. Blood sugar levels. Blood sugarlevels. Alertness. Temperature. Pulse. Blood pressure. ischaemic stroke ). aspirin. can treat youif: cannot repair braindamage feeling. feeling. your friendsabouthowyouare Talk toyourteam,familyand after astroke. tofeelstrong It isnormal emotions keep Most peoplesurvive. Others takelongertogetbetter. make agoodrecovery veryquickly. Everyone isdifferent . Somepeople Early progress people whohavehadastroke. The stroke teamonlylooksafter health professionals. team. Thestroke teamisaof You willbelookedafterbyastroke Stroke team in astroke unit. This issoyoucanbelookedafter hospital. You maybemovedtoabigger unit. Small hospitalsdonothaveastroke have hadastroke. A stroke unitlooksafterpeoplewho unit. You shouldbetreated inastroke You shouldbeadmittedtohospital. Admission tohospital improving overtime. Stroke Foundation–enableme .org.au

19 ABOUT STROKE 20 ABOUT STROKE Emma, stroke survivor it’s howyouchoosetodealwithit. It’s notwhathappenstoyouthatmatters, them –Iwantedtohelpgrievetoo. I founditwasmyrole tomakeiteasierfor them toopenupme. I neededtotellthemitwasokayfor someone whohadsurvivedastroke. Most ofmyfriendshadneverbeenaround Being withmyfriendsisveryimportant. instead. health andwellbeingbyswimming longer run,Icanstillfulfillmyvalueof what matterstome.SoalthoughIcanno as before, butIstilllivebymyvalues, There’s notonethingIdothesameway different opportunities. For meitwasaboutbeingopento I hadanewdirection. Em’. not myweaknesses,thatIfoundthe‘new things thathighlightedmystrengths and It wasn’t untilIstartedtodonewthings, was, shewasn’t goingtocomeback. We allhadtoacceptthatasdifficultit old Em’,becauseIknewshewasgone. people say, ‘OhIsawaglimpseofthe It wasespeciallyhard formehearing ensure myoptimalrecovery. my physicalandemotionalobstaclesto I realised theimportanceoffocusingon became quiteevident. stroke, overtimetheemotionaltoll Despite beingphysicallyimpactedbymy there wasnothingtogoforward to. couldn’t gobackwards tomyoldlifebut I feltextremely lostaftermystroke –I

people inyourstroke teambefore yougohome. Write downthenamesandcontactdetails ofthe hospital andsometimeswhenyougohome. The stroke teamlookafteryouwhileare in Together youcanmanagetheimpactofyourstroke. problems. Ask yourstroke teamquestions.Talk tothemabout team. You andyourfamilyare importantmembersofthe The stroke teamwillworkwithyouandyourfamily. problems thatcanhappen. The stroke teamwilltrytotreat thedifferent The stroke team Other stroke teamshavemembersnotlistedhere. listed onthenextfewpages. Some stroke teamsdonothaveallthemembers Each stroke teamisdifferent Stroke Foundation–enableme .org.au 21 ABOUT STROKE Stroke team member Questions you might ask your Name of your health health professional professional and contact details

Doctor: consultant What type of stroke did I have? The consultant is the doctor in charge while you are in What area of my brain was ABOUT STROKE hospital. damaged by my stroke? The consultant makes sure How will the stroke affect me? the stroke team knows what happened to you and why. What medication am I taking and why? The consultant is in charge of your medical care. Can I drive again?

Doctors: registrar What is the name of the test or and residents treatment that I’m having? Registrars and residents Why is that test being done? work with the consultant. Who will explain the results to They look after your day- me and my family? to-day care. They will check on you every day. They organise tests. They talk to the consultant to decide what to do.

22 My Stroke Journey Stroke team member Questions you might ask your Name of your health health professional professional and contact details

General practitioner (GP) What is this medication for? Some GPs may look after How long do I have to take this you in hospital. medication for? ABOUT STROKE Your GP will help you lower What are the side effects your chance of having of this medication? another stroke. How can I reduce my chances of This could be with having another stroke? medication and lifestyle changes. Your GP can also help if you are sad or have problems coping. Your GP may refer you to other health professionals who can help you. Your GP looks after you when you go home.

Nurses What is my blood pressure? Nurses look after you in Can someone help me each day hospital. with meals? They check your blood How do I improve my pressure, pulse rate and incontinence? temperature. What can I do to be more They help you if you have independent on the ward? bladder or bowel problems. They check your progress and talk to your doctor and other team members. They help you with showering, eating, going to the toilet and moving around your room. Community nurses look after you when you are back at home. They can help with medication, injections and looking after wounds.

Stroke Foundation – enableme.org.au 23 Stroke team member Questions you might ask your Name of your health health professional professional and contact details

Stroke care coordinator/ Which members of the stroke discharge coordinator team are helping me? A stroke care coordinator Do I need to see any other ABOUT STROKE makes sure your stroke members of the stroke team? team has the right team members to match your When are we having a family needs. meeting? They help plan for you to Where will I be going next? go home or transfer to a What help do I need when I rehabilitation hospital. go home? They may organise family meetings. Not all hospitals have this team member.

Occupational therapist What exercises can I do? (OT) How can my family help? An OT helps you re-learn What can I do to help my how to do things like memory? showering and getting dressed. Is my home safe for me? They help you get back to What equipment do I need at work or things you enjoy home? doing. What do I need to do to drive a They help you with thinking car again? or memory problems, Will I be able to go back to vision problems, and hand work? or arm problems. Will my stroke affect my sex life? They may do a home visit How can I get back to my to organise things you hobbies? need before you go home. This makes it easier for you to get around your house. A specialist OT can complete a driving assessment.

24 My Stroke Journey Stroke team member Questions you might ask your Name of your health Stroke team member Questions you might ask your Name of your health health professional professional and health professional professional and contact details contact details

Stroke care coordinator/ Which members of the stroke Physiotherapist Will I need things to help me discharge coordinator team are helping me? move around my home safely? A physiotherapist helps you A stroke care coordinator Do I need to see any other sit, stand, walk and exercise. What exercises can I do? makes sure your stroke members of the stroke team? ABOUT STROKE They work on movement, team has the right team How often should I do the muscle strength, sensation, members to match your When are we having a family exercises? meeting? coordination and fitness. needs. How can my family help me? They may talk to you about They help plan for you to Where will I be going next? things that will help. How important is it to stay active go home or transfer to a What help do I need when I after my stroke? rehabilitation hospital. This includes using a go home? walking stick, walking frame They may organise family How do I stay fit if my leg/arm is or wheelchair. meetings. weak from the stroke? They can help you prevent Not all hospitals have this How can I get off the floor myself falls. team member. if I fall? They can give you exercises to do. These exercises will help you get better. Occupational therapist What exercises can I do? (OT) How can my family help? Speech pathologist What needs to happen before I An OT helps you re-learn What can I do to help my how to do things like can drink normal fluids again? memory? A speech pathologist showering and getting makes sure you can How can my family member help dressed. Is my home safe for me? swallow. me to be safe when swallowing They help you get back to What equipment do I need at my food? They may recommend work or things you enjoy home? special food and drinks for How can my family member help doing. What do I need to do to drive a you. me to communicate? They help you with thinking car again? They may give you or memory problems, How does a communication Will I be able to go back to exercises to help you vision problems, and hand book/device work? work? swallow. or arm problems. Will my stroke affect my sex life? They help if you have Are there any exercises I can do They may do a home visit to practise my speech? How can I get back to my trouble speaking or to organise things you hobbies? understanding what people need before you go home. say. This makes it easier for you They can help you to get around your house. communicate with your A specialist OT can family and friends. complete a driving assessment.

Stroke Foundation – enableme.org.au 25 Stroke team member Questions you might ask your Name of your health health professional professional and contact details

Dietitian I can’t swallow normal food at the moment – what else can I A dietitian will help you if eat? you are having problems ABOUT STROKE eating enough food. Can my family bring food in for me from home? They will give you special ﬂuids or meals. What can I change in my diet to reduce the risk of stroke? They can talk to you about healthy foods. This can help lower your risk of another stroke.

Social worker I’m feeling very sad and worried. Is this normal? What can I do? A social worker can help with life after stroke. What payments and allowances am I eligible for? They help you with What happens if I can’t manage emotional, social and at home? ﬁnancial things. My family member can’t make They can give support and decisions or manage their counselling. ﬁnances. What happens now? They help you and your family. They also give you information about: › Getting ready to go home. › Community services. Government payments and allowances.

26 My Stroke Journey Stroke team member Questions you might ask your Name of your health health professional professional and contact details

Psychologist (or clinical I’m stressed about how my family psychologist) and I will manage at home. Can you help? A psychologist helps you and your family get used to I have been very sad since my ABOUT STROKE life after stroke. stroke. What can I do? They help you if you are I’m feeling anxious about having depressed or anxious. another stroke. What can I do? They can help your whole family work together.

Neuropsychologist Why do I feel different since my stroke? A neuropsychologist helps if you have problems with Will I get better? memory, thinking or My family member thinks I do behaviour. dangerous things. What can we They work with your family do? to help with these Will my thinking and memory problems. problems stop me going back They may also talk to other to work? team members about how the stroke has changed you.

Pharmacist Why I am taking this medication? A pharmacist makes sure How long should I take this you are taking the right medication? medication. Are there any side effects? They talk to you about your medications and possible When do I need another side effects. prescription? They give you a list of your Should I avoid certain food and medications when you leave drink? hospital. What do I do if I forget to take They talk to you about how my medication? to lower your risk of having another stroke. Who should I talk to about my medications after I leave They can help you quit hospital? smoking.

Stroke Foundation – enableme.org.au 27 Notes ABOUT STROKE

28 My Stroke Journey Some thingsyoucandotogetready: short time. You ina maygetalotofinformation with thewholeteam. You mayfeelanxiousaboutmeeting Getting ready forafamilymeeting questions. They giveeveryoneachancetoask in decisions. Family meetingsgiveeveryoneasay up todate. They helpkeepyouandyourfamily care. team togethertotalkaboutyour Family meetingsbringthestroke members ofthestroke team. You andyourfamilyare important meetings Family › › ›

family memberneedone. Ask foraninterpreter ifyouora you. Ask someonetotakenotesfor Write downquestionsyouhave. with this. Your socialworker can helpyou make decisionsaboutmoney. An administratormaybeneededto will live. decisions aboutthingslikewhere you A guardian maybeneededtomake this. There are lawsineachstateabout someone tomakedecisionsforyou. If thishappens,youmayneed possible. After astroke, thismaynotbe that means. ifyouunderstandwhat attorney You canonlymakeapowerof Guardians andadministrators make decisions. It givesanotherpersonthepowerto decisions yourself. It isonlyusedifyoucannotmake decisions foryou. It letsyousaywhowillmake document. isalegal Enduring powerofattorney Enduring powerofattorney decisions foryou. There are lawsaboutwhocanmake to makedecisionsforyourself. After astroke, youmaynotbeable own decisions. You havetherighttomakeyour decisions Making Stroke Foundation–enableme .org.au 29 ABOUT STROKE Lower your risk of having another stroke

Now that you have had a stroke, High cholesterol you have a higher chance of having You can lower your cholesterol: another stroke. › Maintain a healthy weight. risk factors There are that increase › Eat foods low in saturated fat your risk of stroke. (animal fats). You can change your risk factors. › Do exercise. This will lower the chance you will There is medication you can take have another stroke. to lower your cholesterol.

High blood pressure Smoking REDUCE YOUR RISK It is never too late to stop smoking. Know your blood pressure. You can get help to stop smoking. Normal blood pressure is 120/80. Ask your stroke team about this. If your blood pressure is over 140/90, you have high blood pressure. Obesity You can lower your blood pressure: Obesity means you have too much › Maintain a healthy weight. body fat. › Do exercise. Talk to your stroke team about losing Medication can lower your blood weight. pressure. Everyone who has had a stroke should take medication to lower blood pressure.

Blood pressure is shown with two numbers: Systolic pressure – The force put on the blood vessel walls as your 120 heart pumps. Diastolic pressure – The force put on blood vessel walls when your 80 heart is resting between beats.

30 My Stroke Journey Do drinkplentyofwater. Don’t eatmuchfoodthathas: Do eat: of stroke. Healthy eatingreduces yourrisk Poor diet › › › › › › › ›

Added sugar. Added salt. Saturated fat. mostlyreducedalternatives, fat. Milk, yoghurt,cheeseandtheir and beans. tofu, nutsandseeds,peas,lentils Lean meatsandpoultry, ﬁsh,eggs, and barley. polenta, couscous,oats,quinoa bread, cereal, rice,pasta,noodles, wholegrain andhigh-ﬁbre typesof Grain orcereal foods.Choose Fruit. legumes (peas,lentilsandbeans). different typesandcolours.Eat Plenty ofvegetables.Choose drinking. You cangethelptocutdownorstop is safeforyoutodrink. Talk toyourdoctorabouthowmuch any alcohol. It maynotbesafeforyoutodrink This maybedifferent foryou. than twostandard drinksaday. Healthy peopleshoulddrinknomore Alcohol diabetes. Talk toyourdoctorabout maintain healthybloodsugarlevels. If youhavediabetes,needto Diabetes of stroke. Regular exercise reduces yourrisk Lack ofexercise › ›

enough. – three sessionsof10minutesare You don’t havetodoitallatonce moderate activityeachday. Do atleast30minutesof Stroke Foundation–enableme .org.au

31 REDUCE YOUR RISK 32 REDUCE YOUR RISK Robert, stroke survivor stroke. want toruntheriskofhavinganother chance withmyhealthandIdon’t I reckon I’vebeengivenasecond thought ofhavinganotherstroke! It’s beenhard butnotashard asthe day andI’vegivenupthesmokes. Now Ihavetotakemedicationevery cholesterol. many kilosandtheysaidIhadhigh But Iwassmoking,carryingafewtoo I didn’t thinkIwasthatunhealthy. told I’dhadastroke! It gavemethefrightofmylifebeing at workfortwoweeksafterthat. and recommended Idolightduties month before goingbacktodriving The doctortoldmeI’dhavetowaita afteraboutamonth. to normal gave metodoathomeitwasback But withtheexercises thetherapists for awhile. I lostabitofstrength inmylefthand They saidmystroke wasmild. how totreat this. Your doctorcantalktoyouabout This iscalledatrialﬁbrillation. is notbeatinginasmoothpattern. An irregular pulsemeansyourheart Irregular pulse need surgery. Your doctorwilltellyouifmay a stroke. Some peoplemayneedsurgery after Surgery Talk ordoctor. toyourpharmacist will takemedication. Almost everyonewhohasastroke Medication There are otherthingsyoucando. do toreduce your risk Other thingsyoucan Stroke Foundation–enableme .org.au

33 REDUCE YOUR RISK Your risk factors

Use this checklist to ﬁnd out your risk factors. Talk to your doctor about reducing your risk of another stroke.

Risk factor Key messages Notes

High blood pressure. Know your blood pressure.

REDUCE YOUR RISK Check your blood pressure regularly.

Smoking. Quit smoking.

High cholesterol. Check your cholesterol. Eat a healthy diet.

Diabetes. Talk to your doctor about your diabetes.

Obesity. Talk to your doctor. Eat a healthy diet. Be active every day.

Excessive alcohol. Have no more than two standard drinks each day.

Atrial ﬁbrillation Talk to your doctor. (irregular heart rate or AF).

34 My Stroke Journey Notes Stroke Foundation–enableme .org.au

35 REDUCE YOUR RISK 36 REDUCE YOUR RISK William, stroke survivor the oldone. that isprobably betterthan new versionofyourself,one Because nowyou’vegota is recovery. This istheultimategoal,this self-portrait. brush, untilyou’vegotanew different brush,amore detailed As yougetbetter, youusea your recovery. first stepsyoutaketowards strokes andtheserepresent the to bepaintingbig,broad At thebeginningyou’re going but it’s timetopaintanewone. your oldportraitlookedlike, You kindofremember what over yourportrait. a paintbrushandpaintsall like someonecomesalongwith When thestroke happens,it’s you wanttoreach inlife. your identityisandwhatgoals self-portrait –youknowwhat Before yourstroke youhavea painting. The wayIviewit,it’s likea

Photo © Mark Sherborne of stroke. talking are themostcommonsigns andtroubleA weakfaceorarms, FAST standsfor: the signsofstroke. The FAST testisawaytoremember Call 000rightaway. to actFAST. If youhaveanotherstroke, youneed a stroke Signs youare having › › › › NSF1476_12/16

Time togethelp. Speech. Arms. Face. If you seeany of these symptoms Recognise FACE T S A F drooped? Has their

ARMS? STROKE Can they both lift c Act FAST future. to stopyouhavingastroke inthe you canhavetestsandtreatment still call000rightaway.Thisisso you havestroke signsthatgoaway, Sometimes thesesignsgoaway. If Other signsinclude: › › › › › › › SPEECH

slurred anddothey understand you? Nausea orvomiting. Feeling dizzy. Trouble swallowing. Headache. Problems seeing. Not beingabletomove. Feeling numb. Is their call 000 call

Stroke Foundation–enableme .org.au .A.S.T. . S . A F. Think TIME Call 000, is critical

37 REDUCE YOUR RISK Getting better after a stroke

You will see a rehabilitation team. Setting goals Rehabilitation helps you get better. Goals help you get better. It helps you relearn things. Goals break things down into easy steps. It helps you ﬁnd new ways of doing things. Goals let you say what you want to do. Your brain can adapt after a stroke. They also help you make a plan. You can learn to use other parts of your brain. Talk to your stroke team about your goals. This is called neuroplasticity. Goals should be simple and clear, different Every person is . like, ‘Be able to dress myself’. It is hard to tell how much you will Set a timeframe to achieve your get better. goal. Some people get back to normal. Talk to your family and stroke team Others do not. about your goals. Usually you make the most progress Celebrate your achievements. in the ﬁrst six months. Start small. Use small goals to get REHABILITATION You can keep getting better for years to bigger goals. after a stroke.

38 My Stroke Journey Tony, stroke survivor is anewpersonthatyou canfind. struck adevastatingblow, there So whilstyoufeelhavebeen member for40years. industry, ofwhich I’vebeenarespected written twobooksaboutthebus speaker andafundraiser, andI’ve Since mystroke, I’vebecomeapublic doing thesameroutines. thestroke I’dstillbe found. Without that I’mverysurprisedIhave The newTony isanewandexcitingguy The oldTony couldjumptallbuildings. on thethingsyoudowell. life afterastroke thenI’dsaytofocus If anyonewasaskinghowtocopewith I’m stillworkingonmyhandfunction. My visionprobably won’t improve but Every dayI’mabitbetter. Everyone hasadifferent stroke. It’s thestartofalongjourney. exercises. move through thousandsofrepetition Rehab taughtmehowtowalkand muscles were weak. couldn’t holdmyheadupbecause life back.WhenIarrivedatrehab I life andthestaff atrehab gavemethat I wasveryfortunatethatunitsavedmy the intensivecare unit. family, lookingatmefullyparalysedin my wife,twogirls,friendsand I hatetothinkofthetraumaeffect on of stroke. blood conditionthatincreased myrisk although Ididhaveanunderlying I’d haveastroke. Iwasreasonably fit, It wasthelastthingonmymind,that

Photo © Ross Waldron

39 REHABILITATION Write down your goals

Talk to your stroke team if you would You can also visit our website like help setting goals. enableme.org.au After you leave the hospital, you can You can set goals there and see call StrokeLine on 1800 787 653 to goals other stroke survivors have set. talk about your goals.

Goal When will you achieve your goal? REHABILITATION

40 My Stroke Journey get better. The rehabilitation unitwillhelpyou This couldbeinadifferent hospital. rehabilitation unit. You mayneed to goaspecial home rightaway. You maynotbe wellenoughtogo Rehabilitation unit at home. They willmakesure youwillbesafe and yourfamily. The stroke teamwillworkwithyou the hospital. You maybeabletogohomefrom Going home Call StrokeLine on1800787653. Talk toyourdoctor. There isalwayshelpavailable. This caninclude: They willorganise thingsforyou. you toleavehospital. You andyourstroke teamwillplanfor Leaving hospital › › › › ›

doctors. Appointments withspecialist Home helpandrespite care. at home. A communitynursetovisityou walker. Giving youequipmentlikea Making changestoyourhome. care ifneeded. and yourfamilyaboutpalliative Your stroke teamwilltalktoyou Palliative care maybegivenin: stress. Palliative care helpsstoppainand and theirfamily. This typeofcare helpstheperson end oflife. Palliative care isforpeopleatthe Palliative care for you. aged care homeisthebestoption The ACAT willhelpyoudecideifan Assessment Team. ACAT standsforAgedCare home, youneedtoseeanACAT. Before youcangotoanagedcare care. Aged care homesprovide 24-hour care home. They mayneedtogoanaged These are usuallyolderpeople. to gohome. Some peopleare notwellenough Aged care home › › › ›

At home. An agedcare home. A palliativecare unit. Hospital. Stroke Foundation–enableme .org.au 41 REHABILITATION Checklist for leaving hospital

o Medications o Fatigue Do you have a list of medications? Do you have a plan to deal with fatigue?

o Follow up appointments and o Rehabilitation tests Do you need rehabilitation after Do you have a list of follow up hospital? appointments?

o Preventing another stroke o Services in your home Do you know how to prevent another Will someone help you at home if stroke? Do you know what to do if you needed? think you are having another stroke? REHABILITATION o Equipment o Emotional support Do you need special equipment? Will it Do you know where to get emotional be arranged for you? support?

o Training for your carer o Who to contact Does your family or carer know how to Do you know who to contact if you have look after you? questions?

o Returning to driving and work o Financial support Do you have a plan for returning to Do you know about government work or driving a car? payments?

42 My Stroke Journey Write downcontactnumbersforservices afteryouleavehospital. Write downyourappointmentshere Appointments andservices Services Appointments Contact Notes Stroke Foundation–enableme .org.au

43 REHABILITATION 44 CARER INFORMATION Julie, carer be anywhere else. Being acarer isachallenge,butIwouldn’t between uswecanworkthrough things. I’ve gotmyhealth,andRoss– things you’vegot. you’ve lost,butthenyouthinkaboutallthe Sometimes youthinkaboutallthethingsthat tired. ButI’mpretty tough. wreck sometimes,andthatcomeswithbeing great group offriends.I’manemotional family ispretty toughtoo,andwehavea thatI’mtougherthanIthink.Our I learnt service, youcansaynothen. later on,oryoufinddon’t needthat Don’t saynotoanything.Ifitdoesn’t fitin appointment?’, theanswerisalwaysyes. someone says,‘Would youlikeafollowup Make sure yousayyestoeverything.If I meet. I alwaysaskalotofquestionseveryone difficult, ittakesalotofpersistence. Finding outwhere togethelpfrom canbe the timesthatIcan’t. can do,andIgethelpforthethings time, onethingatatime.Iworkoutwhat different directions! Formeit’s onedayata Though it’s hard –mymindgoesinlotsof not totrydoeverythingatonce. My adviceistotrydoonethingatatime, what you’re goingthrough. group, totalkpeoplewhounderstand That’s beenoneofthebenefits ofthecarers’ thing forcarers, tofindthatbalance. spouse andyourchildren first.It’s adifficult You alwaysputyourselflast,youyour to comehome. entire focuswasongettinghimwellenough Ross wasinhospitalforalongtimeandthe

Carers: member. Carers canbeafriend. Carers canbeapartnerorfamily another person. A carer isanyonewholooksafter Becoming acarer › › › ›

Help withexercises. Help setgoals. make decisions. Talk tothetreating teamand the personisgoing. Tell otherfamilymembershow the endofthisbook. Read the‘Helpforcarers’ sectionat support. It isimportantyouknowwhere toget You mayneedtraininginhowto: As acarer, youneedtoknowabout: Getting ready fordischarge › › › › › › › › ›

Manage difﬁcultbehaviour. Prepare modiﬁedfood. swallowing. Help withcommunicationand Prevent falls. toilet orgettingdressed. Help withshowering,goingtothe a chairorbed. Help thepersongetinandoutof Plans forfuture care. How itisbeingtreated. The stroke. Stroke Foundation–enableme .org.au

45 CARER INFORMATION Caring can be difﬁcult

Caring for a person is an expression Help for carers of love. It can also be very difficult. Carers can get help. Carers feel many emotions. Carers may be able to get carer You can talk to a friend about your payments. feelings. Carer payments are from the You can talk to a health professional. government. Talk to Centrelink to find out if you can get carer payments. Depression Respite care is short-term care. It is normal to feel sad when someone has a stroke. It can be in your home or in an aged care home. These feelings should start to go away soon. Respite care is so you can take a break. Some carers get depression. You can also get counselling. Depression is sadness that doesn’t go away. It can mean you lose interest in things you once enjoyed. You can find it hard to function. If this is how you feel, talk to your doctor. CARER INFORMATION

46 My Stroke Journey journey alittleeasiermeanssomuchtome.” journey have beenabletohelpsomeonefeellessaloneormaketheir professional experiencetomakeareal difference. KnowingI thing forme.OnStrokeLine, I’mabletouseoveradecadeof grandfathers hadstrokes soworkinghere isaverypersonal “Working onStrokeLine isveryrewarding. Both ofmy StrokeLine Call StrokeLine on1800787653. can help. They cantellyouaboutservicesthat to getbetter. They cangiveyouadviceabouthow manage afterastroke. They canhelpyouwithwaysto stroke. professionals. Theyknowalotabout StrokeLine isanswered byhealth StrokeLine. givesyouinformation

47 FURTHER INFORMATION On your On your On your computer tablet smart phone

enableme is a website. It tells you about getting better after a stroke. It helps you keep track of your goals. You can join the online community. You can talk to other people with stroke. You can tell your own story. Interested in enableme?

www.enableme.org.au Like to try it but need some help?

Our helpdesk is available Monday to Friday 9am to 5pm Eastern Standard Time. FURTHER FURTHER

INFORMATION Call: 1800 787 653 Email: [email protected]

48 My Stroke Journey Email: Call: 1800787653 StandardEastern Time. Monday toFriday9am5pm Our helpdeskisavailable Like totryitbutneedsomehelp? Interested inenableme? [email protected] information. information. could really helpme with stroke Foundation newsletter –Ithoughtit I first read ofenableme intheStroke us manage. andsupporttohelp information I didfinditdifficulttoaccess this before mystroke. I wasbewildered asI’dneverfeltlike out ofproportion. down andmyreactions tothingsfelt I alsofoundmymoodswere upand driver. become mycarer aswellmytaxi longer drive,andmyhusbandhadto I lostmyindependenceascouldno home were thehardest time. The firstthree monthsafterIwent

Jenny, stroke survivor andenjoy.to learn of technologyasthere issomuch survivors totakeonthechallenge I wouldadviseseniorstroke immensely. stroke andthat’s helpedme are commonlyexperiencedafter I discovered myemotionalchanges enableme iswonderful. It wascertainlyworthdoingas to challengemybrain. curve –andaftermystroke Iwanted world oftechnology–abiglearning As aseniorIwantedtoenterthe survivors alsoreally appealedtome. The ideaofconnectingwithother

49 FURTHER INFORMATION Get help after stroke

Stroke Foundation enableme StrokeLine enableme.org.au 1800 787 653 enableme is a website for stroke strokefoundation.org.au survivors, their families and StrokeLine tells you about stroke supporters. prevention, treatment and recovery. It is free. Strokeline can help you find services. It tells you about stroke. StrokeLine is confidential. You can talk to other stroke survivors. It is free. Get involved Help in other languages You, your family or your friends may You can talk to StrokeLine with an wish to get involved in fighting interpreter. stroke. Call the Telephone Interpreter You can volunteer to raise funds. Service on 13 14 50. You can volunteer to talk about your experience. StrokeConnections You can volunteer to spread the word about stroke prevention. StrokeConnections is a free strokefoundation.org.au newsletter. If you would like us to send you this › Donate money – help us to fight newsletter, call StrokeLine on stroke and support survivors. 1800 787 653. › Donate time – become a volunteer. Journey After Stroke › Speak up – give a voice to stroke in Australia. This book is for Aboriginal or Torres › Stay informed – stay up-to-date. Strait Islander people. › Share – help spread our message. It was developed by the Townsville › Get checked (and ‘know your Stroke Team at Townsville Hospital, numbers’) – check your health Queensland. regularly. Call StrokeLine on 1800 787 653 and ask for a copy. FURTHER FURTHER INFORMATION

50 My Stroke Journey their families. AAA helpspeoplewithaphasiaand www.aphasia.org.au 1800 APHASIA(274274) (AAA) Australian AphasiaAssociation COMMUNICATION Help with for carers. Carers Australiagivescounselling www.carersaustralia.com.au 1800 242636 Carers Australia Centrelink givespaymentsforcarers. www.humanservices.gov.au 132 717 Centrelink local supportservices. The serviceﬁndercanconnectyouto The websitehasaserviceﬁnder. It helpscarers. phone service. Carer Gatewayisawebsiteand www.carergateway.gov.au 1800 422737 Carer Gateway Help forCARERS

QUITLINE helps you stop smoking. QUITLINE helpsyoustopsmoking. www.quitnow.gov.au 13 7848(13QUIT) QUITLINE who are thinkingaboutsuicide. helps peopleincrisis.It Lifeline givestelephonehelp.It www.lifeline.org.au 13 1114 Lifeline Australia problems withtheirrelationships. Relationships Australiahelpspeoplehaving www.relationships.com.au 1300 364277 Relationships Australia COUNSELLING Help from 13 2390www.tmr.qld.gov.au Queensland 1300 654628www.nt.gov.au/driving TerritoryNorthern 13 22www.rms.nsw.gov.au New SouthWales 13 2281www.accesscanberra.act.gov.au Australian CapitalTerritory can tellyouaboutdrivingafterstroke. The transportauthorityinyourstate State Transport Authorities Help withDRIVING Stroke Foundation–enableme .org.au

51 FURTHER INFORMATION South Australia Help with RETURNING 13 10 84 www.sa.gov.au/topics/ driving-and-transport TO WORK Tasmania Centrelink Job Access 1300 135 513 www.transport.tas.gov.au 1800 464 800 Victoria www.jobaccess.gov.au 13 11 71 www.vicroads.vic.gov.au Job Access helps people with a disability get a job. Western Australia 13 11 56 www.transport.wa.gov.au Help from other SERVICES Occupational Therapy (OT) Australia My Aged Care 1300 682 878 www.otaus.com.au 1800 200 422 OT Australia can give you a list of www.myagedcare.gov.au driving assessors. My Aged Care helps you ﬁnd aged care services.

Help with FINANCIAL National Disability Insurance or LEGAL MATTERS Scheme (NDIS)

Centrelink 1800 800 110 www.ndis.gov.au Newstart allowance: 13 28 50 NDIS helps people with a disability. Disability and carers: 13 27 17 It is for people who are younger than Jobs, education and training: 13 61 50 65 years. www.humanservices.gov.au Continence Foundation of Australia Centrelink helps with income support and job seeking. 1800 33 00 66 www.continence.org.au Legal Aid Commission Continence Foundation helps people who have problems with going to the www.nationallegalaid.org toilet. Legal Aid helps you with legal matters. Diabetes Australia 1300 136 588 www.diabetesaustralia.com.au FURTHER FURTHER Diabetes Australia helps people with INFORMATION diabetes.

52 My Stroke Journey rehabilitation. You mightalso need more rehabilitation whenyougohome. The hospitalshouldhelpyouget Rehabilitation cangoonforyears. after astroke. Rehabilitation helpsyougetbetter allied healthservices rehabilitation andsee How togetmore provides telephonecounselling. injury toservices.Synapsealso Synapse connectspeoplewithbrain www.synapse.org.au 1800 673074 Synapse with heartdisease. The HeartFoundationhelpspeople www.heartfoundation.org.au Heartline: 1300362787 Heart Foundation medical historyinanemergency. Medic Alertalsogivesdoctorsyour have anemergency. Medic Alertcantellyourfamilyifyou www.medicalert.org.au 1800 882222 Medic Alert people lookafterthemselves. Independent LivingCentres help www.ilcaustralia.org.au 1300 885886 Australia Independent LivingCentres good if: Community-based rehabilitation is This isbackatthehospital. rehabilitation. can getcommunity-based You canaskyourdoctorifyou you candoafterseethem. Ask atthealliedhealthservicewhat 5 times. It letsyouseeanalliedhealthservice Management Plan. This iscalledaChronic Disease through Medicare. You canseeanalliedhealthservice An alliedhealthservicecanbea: allied healthservice. Your doctorcanhelpyouseean allied healthservices. You cangetmore rehabilitation from rehabilitation. Your doctorcanhelpyougetmore › › › › › › › › ›

different. You wanttodo something You havegotten worse Psychologist. Social worker Dietitian Podiatrist Speech pathologist Occupational therapist(O.T.) Physio Stroke Foundation–enableme .org.au

53 FURTHER INFORMATION You might need to see a counsellor if: Stroke support groups › You want to talk to someone about You can meet other people in a how you feel stroke support group. › You have depression or anxiety. A stroke support group might be for: › A local area. Ask your doctor about a Mental › Young people. Health Care Plan. › Old people It lets you see a counsellor 10 times. › People with an interest. › People with aphasia. Private health insurance can help you get more rehabilitation. › Carers. It might help you: A stroke association might be able to help you. › See an allied health service. You can phone a stroke association › Go to a private hospital. if you live in: › Talk about health on the phone. › Victoria Ask your private health insurer what › New South Wales help you can get. › South Australia.

You might get rehabilitation at a university. Stroke Association of Victoria This can be cheap or free. 03 9670 1117 www.strokeassociation.com.au It can be from: › Students Stroke Recovery Association of New South Wales › Research. 1300 650 594 Phone StrokeLine on 1800 787 653 www.strokensw.org.au for more help. Stroke Association of South Australia FURTHER FURTHER

INFORMATION 08 8352 4644 www.stroke.org.au

54 My Stroke Journey who haveproblems withtheireyes. Guide DogsAustraliahelpspeople www.guidedogsaustralia.com 1800 484333 Guide DogsAustralia have problems withtheireyes. Australiahelpspeople who Vision www.visionaustralia.org 1300 847466 Australia Vision Help forVISION Website: www.aphasia.community You canalsoasktheAphasiaCommunity. Website: www.aphasia.org.au Phone: 1800274 Association. You canasktheAustralianAphasia There are alsoaphasiagroups. to ﬁndagroup. Phone StrokeLine on1800787653 Stroke Foundation–enableme .org.au

55 FURTHER INFORMATION Strokesaurus

Aneurysm Atrial fibrillation An aneurysm is a weak spot in a Atrial fibrillation is a problem with blood vessel. your heart. Blood vessels carry blood around Sometimes your heart beats too your body. quickly. An aneurysm can burst. Your heart may not beat in a steady If an aneurysm bursts in your brain, pattern. you can have a stroke. Brainstem This type of stroke is called a haemorrhagic stroke. The brainstem is a part of your brain. It connects your brain, spinal cord Aphasia and nerves. Aphasia is when you have trouble It controls your heartbeat, breathing with language. and other vital functions. This includes talking, reading and Carotid ultrasound writing. It also includes understanding what A carotid ultrasound is a type of other people say. medical test. It is also called dysphasia. It is also called a carotid doppler or duplex. Apraxia Doctors use an ultrasound to look at Apraxia is when you have trouble the arteries in the neck. moving your body. They can see how well the blood It happens when parts of your flows to your brain. body won’t work the way you Cerebellum want them to. This is also called dyspraxia. The cerebellum is a part of your brain. Arteriovenous malformation You use it to control your movement. Arteriovenous malformation (AVM) It helps you stand, sit and balance. is when blood vessels get tangled. AVM usually happens before you are born or soon after. FURTHER FURTHER

INFORMATION AVM can happen in the brain.

56 My Stroke Journey rt-PA. This isdonewithamedicine called after yourstroke. It mustbedoneinthefirstfewhours ischaemic stroke. This canonlybedoneifyouhavean blood clot. Clot bustingmeansbreaking upa Clot busting Your arteriescangetblocked. your arterywalls. If thishappens,thefatscanstickto cholesterol. Sometimes youhavetoomuch blood. Cholesterol isakindoffatinyour Cholesterol brain. Others affect larger partsofyour Some cerebral infarcts are verysmall. your braindoesnotgetblood. The damagehappenswhenapartof of yourbrainisdamaged. Cerebral infarct iswhenanarea Cerebral infarct or anMRIscan. This isusuallydonewithaCTscan They canseethedyeonX-ray. Then theytakeanX-raypicture. Doctors injectyouwithaspecialdye. medical test. A cerebral angiogramisatypeof Cerebral angiogram It isalsocalledaphagia . difficulty swallowing. Dysphagia iswhenyouhavepainor Dysphagia brain thestroke hasdamaged. They canfindoutwhichpartsofyour inside yourbrain. Doctors canusethescantosee for computerisedtomography. A CTscanisamedicaltest.stands CT scan don’t havetothinkabout. It isanautomaticfunctionthatyou control whenyougotothetoilet. Continence meansbeingableto Continence It includes: Cognition meanshowyouthink. Cognition your bodytopullthebloodclotout. The doctorswillinsertatinytubeinto the firstfewhoursafteryourstroke. ischaemic stroke. Itmustbedonein This canonlybedoneifyouhavean Clot retrieval through aneedle. The doctorswillgiveyourt-PA › › › ›

Judgement. Language. Thinking. Memory. Stroke Foundation–enableme .org.au

57 FURTHER INFORMATION Electrocardiogram This includes asking questions. Electrocardiogram is a type of You can ﬁnd out about your medical test. condition. Doctors can see if there are problems You can talk about what the care with your heartbeat. team is doing to look after you. You can ﬁnd out what care you need Embolic stroke in the future. An embolic stroke is a type of stroke Frontal lobe caused by a blot clot in the brain. The blood clot comes from The frontal lobe is a very important somewhere else in the body. part of your brain. It controls: Usually the blood clot comes from › Your emotions. the heart. › How you sort out problems. › Your memory. Emotional lability › How you talk and understand. Emotional lability is when you › How you make decisions. suddenly laugh or cry for no reason. › How you act around other people. This can happen after you have › How you act sexually. a stroke. › How you move your muscles. Emotional lability can last for a few weeks, or for a longer time. Geriatrician This is also called pseudobulbar A geriatrician is a doctor who looks affect. after older people.

Enduring power of attorney Haemorrhagic stroke Enduring power of attorney is a Haemorrhagic stroke is when a legal term. You can let a trusted blood vessel bursts in the brain. person make decisions about your money and property. This type of stroke causes bleeding inside the brain. Family meeting Hemianopia A family meeting is when you and your family meet with the people Hemianopia is when you lose one looking after you. half of your vision. FURTHER FURTHER During the meeting, everyone can You might see people with only half INFORMATION ﬁnd out about what’s happening. a face. If you read a book, you might only see half the page.

58 My Stroke Journey bleeding inthebrain. This typeofstroke iscausedby of stroke. Intracerebral haemorrhageisatype Intracerebral haemorrhage They compare thistotheaverage. your bloodtoclot. Doctors measure thetimeittakesfor type oftest. ratioisa normalised International ratio normalised International control ofgoingtothetoilet. Incontinence iswhenyoulose Incontinence blood pressure. Hypertension iswhenyouhavehigh Hypertension or both. It canaffect oryourleg, yourarm one sideofyourbody. Hemiplegia iswhenyoucan’t move Hemiplegia or both. It canaffect oryourleg, yourarm on onesideofthebody. Hemiparesis iswhenyouare weak Hemiparesis things ononeside. It alsohappenswhenyouignore on onesideofyourbody. It happenswhenyoudon’t seethings the thingsaround you. Neglect isachangeinhowyousee Neglect your brain. They canseewhatishappeningin your body. Doctors cantakepictures inside imaging. MRI standsformagneticresonance MRI For example: Mobility meansbeingabletomove. Mobility blocked withplaque. when yourbloodvesselsget This kindofstroke alsohappens a bloodvesselinyourbrain. caused byabloodclotthatblocks Ischaemic stroke isatypeofstroke Ischaemic stroke › › ›

Moving from onechairtoanother. Standing up. Walking. Stroke Foundation–enableme .org.au

59 FURTHER INFORMATION Neurologist Perception A neurologist is a type of doctor. Perception is the way your brain They look after your brain and understands the messages your body nervous system. sends it. This includes how you: Neuroplasticity › See things. Your brain can adapt to damage. › Feel things. It can change in response to use. › Smell things. Healthy areas of your brain can take › Taste things. over from damaged areas. › Hear things. Neuroplasticity helps you recover from stroke. Rehabilitation physician Occipital lobe A rehabilitation physician is type of doctor. The occipital lobe is a part of your brain. They help you get better through active treatment. It is at the back of your brain. You use it to see things. Rehabilitation unit

Palliative care A rehabilitation unit is a part of a hospital. Palliative care is for people who They will give you exercises. are near the end of their life. This helps you do the things you It can be given: used to do. › At home. They will also teach you new ways › In a hospital. of doing things. › In an aged care home. The types of things they do with you › In a hospice. will depend on what you need. For example, they can help you walk Parietal lobe again and speak clearly. The parietal lobe is a part of your brain. It helps you feel things.

FURTHER FURTHER It helps you know what’s going INFORMATION on around you.

60 My Stroke Journey and vision. It alsocontrols memoryofhearing It controls hearing. brain. The temporallobeisapartofyour Temporal lobe the brain. there isbleedingonthesurfaceof This typeofstroke happenswhen a typeofstroke. A subarachnoidhaemorrhageis Subarachnoid haemorrhage a stroke. It looksafterpeoplewhohavehad a hospital. A stroke unitisaspecialarea in Stroke unit It canalsobeusedinanemergency. It canbeplanned. This isusuallyforlongertimes. care home. It canalsobegiveninanaged can dosomethingelse. They staywithyousoyourcarer for ashorttime. Someone comestoyourhouse a break. Respite care givesyourcarer Respite care may occur. youthatastrokeA TIAcanwarn to thebrain. minutes. Theydon’t causedamage The signsusuallydisappearinafew but theyonlylastashorttime. The signsare thesameasastroke, brain getsblockedforashorttime. happens whenthebloodtoyour A transientischaemicattack(TIA) Transient ischaemicattack blood ﬂowinyourbrain. This testmeasures thespeedof medical test. Transcranial dopplerisatypeof Transcranial doppler inyourbrain. a bloodclotforms This typeofstroke happenswhen of stroke. A thrombotic stroke isatype Thrombotic stroke The medicineiscalledrt-PA. your brain. This letsbloodﬂowbackinto a bloodclot. The medicinebreaks down You are givenmedicine. treatment. Thrombolysis isatypeofmedical Thrombolysis Stroke Foundation–enableme .org.au

61 FURTHER INFORMATION Notes

The Stroke Foundation offers a range of services to assist stroke survivors, their carers and families to achieve their best possible recovery and to live well after stroke. As well as My Stroke Journey, this includes:

› StrokeLine – staffed by health professionals, this free phone service provides information and advice on stroke prevention, treatment and recovery. 1800 787 653 Visit strokefoundation.org.au

› enableme – a free online resource and community for stroke survivors, their families and supporters. Visit enableme.org.au

› Follow Up – in some states, funding allows us to call stroke survivors after discharge from participating hospitals to talk about how they are managing at home and to check they have what they need to achieve their best possible stroke recovery.

› Support groups – referral to local support groups around Australia where available.

62 My Stroke Journey Notes

Stroke Foundation – enableme.org.au 63 How to get more involved Contact us

Give time – become a volunteer. StrokeLine 1800 787 653 Raise funds – donate or hold a fundraising event. strokefoundation.org.au Speak up – join our advocacy team. /strokefoundation Leave a lasting legacy – include a gift in your Will. @strokefdn Know your numbers – check your health regularly. @strokefdn Stay informed – keep up-to-date and share our message. SF047_EASYENGLISH_0318