A supported self-management programme for people who have had a stroke and their families

Helping you to help yourself after a stroke

Stroke Workbook

INTRODUCTION

n Why do I need a workbook?

n What is this workbook for?

n Why should family and friends be involved?

n What do I do with this workbook?

Introduction

1

CONTENTS

This workbook is made up of 5 parts. Please use it with the help of your facilitator – the person who gave you the workbook. The pages that have a face in the corner are written with family and friends in mind.

Contents

Introduction 3 Background and how to use the workbook.

What I need to know 11 This part contains information about what a stroke is and why it affects you the way it does.

Recovery 35 Information and activities to help your recovery.

Useful words & quiz answers 111Describes and explains words that you may come across. The answers to the quizzes are also in this section.

1

Diary and relaxation CD Are included, to be used with the workbook to aid your recovery. The green pages give details about how to use them.

STROKE WORKBOOK

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Why a workbook?

This workbook is for people who have had a stroke. It is also for their family and friends. Research tells us that people who feel they have control over their recovery do better emotionally and physically. Learning to take control takes time and effort, so it requires you to do some work. This workbook aims to help you take control of your recovery.

This workbook has been developed using the experiences of

l over 300 people with strokesl more than 100 stroke patients who have used the workbookl families and friends who have been involved with strokel health professionals who are specialists in stroke carel people with other medical conditions

It includes the findings of a study that showed that people who had the workbook made a better recovery than those who didn’t. However, it is not a replacement for your usual care.

We hope that you will use this workbook and that it will help you to know what you can do yourself, and what help is available if you need it.

The most important thing now is for you to take control of your recovery.

GOOD LUCK

INTRODUCTION

5

What is this workbook for?

Many people who have had a stroke

l are unsure what has happened to theml are uncertain about what will happen in the future

You may be feeling like this just now. You may also be wondering what you can and should be doing to help your recovery once you get home.

This workbook will help you to

l understand why you had a strokel answer your questions about strokel know what to do to help your recoveryl find ways of coping with any problemsl involve your family and friends

(For a bit of fun we shall also introduce Pete, Peggy and Pat the cat. Pete has had a stroke, Peggy is his wife and Pat is their cat).

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What recovery can I expect?

This depends on you. It is important to think about your stroke and the effect it has on you. Everyone is different and there are no definite answers.

No-one can really tell how much you will recover and how long it will take.

The brain is very complex so recovery takes time

Can the brain recover?The brain tissue can recover if

l the damaged area regains some of its blood supply

l other areas of the brain take up the job of the damaged part

It may be helpful to think about your recovery in 3 ways

1) Improving movement and mobilityMany people think the stroke has damaged their actual muscles. Your muscles are still intact. The nerve connections in your brain have been damaged which means the brain has difficulty telling your muscles to move. You can help your muscles to work again by

l making some movement – even a small movement

l making movements that are useful and meaningful to you

l practising regularly to improve the movement

WHAT I NEED TO KNOW?

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When you can move a little, you can practise this movement.Regular practise is important because it can help to make new nerve connections in your brain that may control your muscles. When you work with your therapists, you may be able to relearn things, such as walking or holding a book.

As you recover, some may find that your arm or leg jerks suddenly when you cough or sneeze. Don’t worry; this often subsides as you gain greater control.

For up-to-date advice on improving your movement and mobility, speak to your physiotherapist or

occupational therapist.

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2) Improving communication A stroke can bring about changes in your ability to communicate. Communication is complex and involves

l Speech and language – if the speech areas in your brain have been affected by stroke there are things you can do to help such as keep talking to people.

l Thinking – if the thinking areas in your brain have been affected, there are also things you can do that may help such as practising problem-solving or playing simple computer games.

For up-to-date information on improving speech, language and thinking, speak to your speech and language therapist or a psychologist if you have been referred.

3) Keeping a positive attitudeRecovery is hard work at first. You may have already made good progress. People often notice quite big improvements in the early days after a stroke. These improvements happen more slowly as you progress in your recovery. If you feel that you are no longer making progress, don’t give up – be open to new ways of coping. There is still great potential for further improvement over the months and years to come.

It may be that you will not make a complete recovery. You may not be able to do absolutely everything you did before your stroke. This workbook will help you to make the most of what you can do.

WHAT I NEED TO KNOW?

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QUIZ 3True False

1

2

3

4

Recovering from stroke is a matter of luck

What I do myself can make all the difference to my recovery

Recovery from stroke stops at 3 months

Only the doctor, therapists and family can help me recover

Answers on page 117

RECOVERY

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TASK 6

1

Think of 3 things that you have noticed since your strokeI have noticed….

2

3

Using your own ideas, write down 3 things you think will help you to cope with these changes

1

2

3

These ideas will help you to make plans.

How family and friends can cope with changes

Those of you who are involved in your relative/friend’s recovery will be called “partner” from now on. Partners are often ignored. Pages with Peggy’s face in the corner are written for you. By reading this workbook, you may learn about how the stroke has affected

l your relative/friend

l you

Your relative/friend has returned home from hospital. You are probably pleased about this but you may have some concerns about how you will cope. While your relative/friend was in hospital, you knew they were getting the medical and nursing care they needed. You knew they were safe. Now you may worry about being responsible for your relative/friend and worry about how to make it easier for them at home. Working together will help you both.

Not all of you will be worried, but if you are, it is important to deal with this positively.

Your relative/friend may not always want to ask for help, so be aware of their needs. This will prevent them from doing things on their own that might put them at risk.

Helping someone who has had a stroke can be stressful and tiring at times, but many partners say that sharing in the recovery of someone you love or care for can be rewarding.

STROKE WORKBOOK

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RECOVERY

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You are welcome to have your own diary. Copy and complete the activities from your relative/friend’s diary. This may be useful for you. Please speak to your facilitator about this.

You need to look after yourself too.

PARTNER TASK 1Please read the statements below, and rate on the scale by circling a number, how confident you are about each of them

There are things I can do to help my relative/friend’s recoveryA

1 2 3 4 5 6 7 8 9 10

Not confident Very confident

I will be able to do what is necessary to help them recover

B

1 2 3 4 5 6 7 8 9 10

Not confident Very confident

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How to cope with physical changes

This section describes coping with physical changes and their effects on daily activities.

If you find you have no movement at all, it may help to gently rub your weak hand or leg with your other hand. Ask your partner to help. Some people find it helpful to close their eyes and imagine that their hand or leg is moving. This has been helpful to some people but not all.

Finding out about other stroke survivors will show you just how well people adapt to their physical limitations. Many people have found ways to cope. Here are some examples

l Learning to tie laces with one hand or buying a pair of slip-on, or Velcro-fastening shoes

l Sitting in a chair to peel potatoes with an adapted peeler

l Writing with their ‘wrong hand’ until they can sign cheques/forms again. Remember, you can ask someone to hold the paper for you while you sign

l Some survivors have taken up playing a musical instrument

You may find that you have to relearn quite simple tasks. To make this easier, it is important that you think about what it is you want to do as a set of steps. You need to break tasks down into little steps that you can take at your own pace.

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Tips for coping

l Don’t be surprised if you feel tired, it’s ok to take a rest

l Gradually increase activities – this should help you to gain confidence and independence

l Don’t be afraid of having a good cry – you’re not having a ‘nervous breakdown’, it is often a normal response

l Set yourself small targets, such as

l “Today I managed to hold a cup of coffee without spilling it; tomorrow I will try to spread butter on my toast”

l “Today I walked from my chair to the table without help; tomorrow I will try to get to the sofa”

l Ask your partner to accompany you if this has been advised or if you feel unsure in the early days

l Keep yourself busy – if you have little to do, you have time to worry - make a list of activities

l Talk to your partner

l Keep your sense of humour – it is okay to laugh at yourself and with others

l Focus on what you can do, rather than things you can’t do

l Think positive – you can do many things

RECOVERY

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How to relax

Stress is a normal response that occurs if people find themselves in what they see to be a difficult situation. Some people find difficult situations challenging. Some people do not. If you are worried, can’t cope, or lack confidence, this can add extra stress and can influence your health and recovery.

Stress often makes your muscles tense, and this can cause aches and pains. Muscle tension can make you feel very tired even if you have not been doing anything.

Relaxation often refers to activities such as reading a book or watching television. However, these activities require some form of muscle tension, for example, holding the book, using your eye muscles. Relaxation for the purposes of recovery is a way of letting go of all the tension that is in your body – this gives your muscles a chance to rest. It can also give your mind a break.

Relaxation can help recovery by

l lowering your blood pressure

l reducing your stress

l enabling you to cope if you have stopped smoking

l helping you to sleep better

l taking your mind off your worries

l making you feel happier, calmer, and refreshed

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How often should I try to relax?

Once you are familiar with the CD, we advise you to practise for 20 minutes, twice a day.

The more you practise, the more you will notice a difference. After a time you will really feel a difference. It will become a habit and feel quite natural.

You can’t make yourself relax – it takes time to learn.

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How to cope with social/work life changes

You may think you look different now and people will react to you differently – especially if you are in a wheelchair.If people react differently, it is often because they don’t know

l how to talk to you l what to say

If you have speech difficulties people may sometimes talk down to you. Meeting new people, or people you have not seen for some time, may be embarrassing for both of you, especially if they don’t know you have had a stroke.

Stroke Workbook Diary

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