BRAIN BOOK

Dr Louise Blackmore

Clinical Neuropsychologist
 BRAIN BOOK Contents

Chapter 1 Introduction 3

Chapter 2 The Brain 4

Chapter 3 Types of brain injury 6

Chapter 4 Common Problems 7

Chapter 5 Coping with Feelings 12

Chapter 6 Handy Hints Fatigue 19

Chapter 7 Handy Hints Memory 21

Chapter 8 Getting Started 24

Chapter 9 Support Groups 30

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 CHAPTER 1

INTRODUCTION

This book has been written for people who have had brain
injuries. It will help you to understand what has happened to
you. It will tell you about some of the common problems which
people with brain injury encounter. It will also give you some
handy hints on how to find ways round these problems.

Brain Book has been written by Louise Blackmore. Louise is a

Consultant Clinical Neuropsychologist who works in the
Rehabilitation Unit at Raigmore Hospital in Inverness.

The book has been written for people who have had brain
injuries themselves but friends, relatives and carers may like to
read it too.

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 CHAPTER 2

THE BRAIN

The brain is the most important part of our nervous system.

Amongst other things we use our brain to breathe, to feel pain,
to remind us to do things, to interpret what we see and even to
tell us how to walk.

The brain weighs about 3 pounds. That is the same as one and a
half big bags of sugar.

The brain is divided in to two halves. These are called

hemispheres. You have a left hemisphere and a right
hemisphere. The left hemisphere controls the movement of the
right side of your body and the right hemisphere controls the
movement of the left side of your body. This is why when you
injure your right hemisphere you may experience some
weakness in the left side of your body. This is very common in
people who have had strokes affecting the right side of their
brain.

The left hemisphere also contains the part of your brain

responsible for speech. Because of this some people who have

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left hemisphere damage have difficulty speaking or
understanding what is said to them.

Each bit of the brain has its own function. When you damage
your brain the difficulties which result will depend on the
function of the area which was damaged. If you damage the area
of your brain which helps you move, for example, you may have
difficulty with moving. If you damage the area of your brain
which stores your memories you may have difficulty
remembering things.

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 CHAPTER 3

TYPES OF BRAIN INJURY

The most common types of brain injury are head injury and
stroke. Head injuries are usually the result of accidents, such as
road traffic accidents or climbing accidents. Strokes occur when
a blood vessel in your brain becomes blocked or if a blood
vessel bursts causing blood to leak in to your brain. In these
cases brain cells become damaged and no longer able to perform
the function they used to. There are also other ways in which
brains may become damaged. Brains may, for example, become
infected. Damage caused in this way may be called encephalitis.
Brains can also be starved of oxygen. This, for example, could
happen in a diving accident. Lack of oxygen in your brain leads
to what we call anoxic brain damage.

Approximately one in a thousand people have a permanent

disability resulting from head injury alone. People between the
ages of 25 and 35 and between 55 and 75 are most likely to have
them. 90% of people who have head injuries are male. Strokes,
anoxic brain damage and encephalitis are equally common in
both males and females.

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 CHAPTER 4

COMMON PROBLEMS

In this chapter we are going to look at problems which can arise

after brain injury. The difficulties a person will have after brain
injury will depend on how much damage they had and also
where the damage was. Remember from Chapter 2 we learnt
that if you damage the left side of your brain you are more likely
to experience difficulties with the right side of your body. Each
person who has a brain injury is unique but some common
problems which people who have had brain injuries experience
include the following:

1. Fatigue/ feeling extra tired

After brain injury you are likely to feel tired much more
quickly than you did before. This is a genuine tiredness and
not in any way a sign of laziness. People who have had brain
injuries often find that they need to have rest periods through
out their day. Chapter 6 discusses how to find your way
round this problem.

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2. Poor Concentration

Peoples ability to concentrate for long or even short periods

of time is often impaired after they have had a brain injury.
They may find it difficult concentrating enough to read a
book or watch television. They may also find it difficult
keeping track of conversations, particularly if more than one
other person is involved. They can also find that they are
easily distracted. If someone talks to them whilst they are
doing a task, for example, they may loose track of what they
are doing. This can be very frustrating!

3. Poor Memory

After brain injury one of the most common difficulties is poor

memory. Quite often people have no problem remembering
things which happened to them a long time ago, such as
where they went to school. Problems arise more commonly
when they try to remember new things such as the name of
their new next door neighbour or what they intended to buy at
the supermarket. Chapter 7 discusses things you can try in
order to help you with this difficulty.

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4. Slower thinking speed

When people have had brain injuries they often find that their
thinking speed is slowed down. They find it takes longer to
work out solutions to problems. They may also notice that
their reaction times are slower. This can also cause a
problem in conversations. You can find that other people ask
you questions and then dont give you long enough to
answer. This can be very annoying! It can help to think of
your brain as being like a map of where you live. Because of
damage some of the main routes on your map have become
blocked. This means that you can still get to places but you
now have to go a longer way round.

5. Difficulties with language

If you have damage in your left hemisphere you are likely to

have some difficulty with understanding or producing speech.
Your voice may sound a bit different to how it did before.
You may also have difficulty finding the words you want
when you are talking. A speech and language therapist may
help you with these difficulties.

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6. Emotional ups and downs

All people who have had brain injuries have times when they
feel very sad. This is because they have had to adjust to their
new situation and come to terms with how they have
changed. They may also experience times when they feel
very stressed or very angry and they may find that they are
more irritable, particularly towards those who are closest to
them. We will be talking about these emotional ups and
downs in much more detail in Chapter 5.

7. Getting started

Many people who have had brain injuries find it very difficult
to get started on doing something. They may really want to
do something, like weeding their garden, for example, but
find that somehow they never get round to it. Some people
may also have difficulty working out the sequence of
activities needed to complete a task. Someone who is making
a cake, for example, may find it difficult working out which
order they need to do things in. This is discussed in more
detail in Chapter 8.

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8. Other Difficulties

There are many other difficulties which can arise also. These
may include poor co-ordination and balance, muscle
weakness, epilepsy and headaches. People can also lose their
sense of smell or taste.

You can also find that your difficulties vary from day to day.
Having a brain injury can sometimes feel like driving through
fog. Some days are foggy days and some days are clearer. As
time goes on you will hopefully find that the foggy days get
less whilst the clearer days increase.

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CHAPTER 5

COPING WITH FEELINGS

After you have experienced a brain injury it is very normal to

experience emotional ups and downs. You will have many
different feelings about your brain injury and about how you
and your life have changed. It can feel like you have lost part
of yourself and that you are left with a big hole. It is like
grieving for the part of you that has gone missing. Family
members and friends can experience these feelings too. It can
be confusing and hard to make sense of these feelings and it
can certainly seem like an emotional roller coaster. In this
chapter we will be looking at these feelings in detail. We will
be looking at the feelings that people find hard to cope with.
We will be discussing why people have them and finally we
will be sharing ideas about how to find our ways around
them.

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What sort of feelings do people have?

The feelings which people have following brain injury vary

from person to person. Everybody reacts differently. Below,
however, are some examples of feelings which people who
have brain injury commonly report.

Sadness

Sadness is one of the most frequently reported feelings. It is

common for people who have brain injury to feel very sad
and to experience a profound sense of loss. This is not at all
surprising, as people have usually lost a great deal as a result
of their brain injury. Some people have lost their jobs. Some
people have lost their partners or friends and some people
have lost part of their independence. You may also have lost
hobbies, which were really important to you such as cycling
or playing golf. It would be perfectly normal to feel very sad
if you lost any one of these things even if you didnt have a
brain injury as well. When you have a brain injury, however,
you can often feel that you have lost several things at once or
that a number of things have been taken away from you. The
sense of loss that this brings can make your sadness feel more
intense than normal and longer lasting. It is a bit like going

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along a road after it has been raining. Sometimes you fall in
to little puddles of sadness, sometimes you fall in to big
puddles and sometimes it can feel like you are in a huge river
of sadness that you cant get out of but then the road becomes
dryer again. Your puddles of sadness can come and go.

It is helpful to find someone who you can talk to about your

sad feelings. This could be a relative, a friend, your G.P. or, if
you attend a Rehabilitation Unit a member of staff who works
there. Neuropsychologists spend a lot of time talking to
people about how they are feeling about the changes which
have happened in their lives following their brain injuries.
It is much better to try to find someone you feel comfortable
talking to instead of bottling up feelings and keeping them to
yourself. At first it can be hard talking about your feelings but
with practice it can get easier. Some people prefer to speak to
those they know well and others prefer to speak to those they
know less well. It is up to you.

Anger

Anger is another emotion, which is often reported by people

who have had brain injuries. It is, however, a perfectly
normal emotion which is experienced by everyone whether

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they have had a brain injury or not. Sometimes people who
have had a brain injury feel very angry about what has
happened to them. This is perfectly normal. They may also be
frustrated at not being able to do things as well as they used
to. They may also find that they lose their temper more
quickly than they did before and when this happens more
often than not they are with the people they love the most.
This can often make the person with brain injury feel bad
about themselves. Having a quicker temper, however, is a
common consequence of brain injury and people often have
to remind themselves that this is not their fault. They may
also find it helpful to explain this to people close to them
such as family members or special friends.

Feeling Isolated

After you have had a brain injury you can also feel very
isolated. Even when you are with other people you may feel
totally alone and that no one understands what you are going
through. You may also find that people think that you are
back to normal because you look the same as you did
before. This is because they cant understand what is going
on inside you and if you look fine on the outside they assume
that you are. We know that often the consequences of brain

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injury are hidden but lots of other people dont understand
that this is the case. You can also find that friends treat you
differently or that they dont visit you as much as they did
before. This can make you feel even more isolated. It can be
difficult picking up the pieces and making new friends or
finding the confidence to contact your old friends.
Organisations such as Headway can be helpful. Headway is a
self-help group for people who have had brain injuries. It
provides the opportunity for people who have had brain
injury to meet each other. Some people find that this helps
them to feel less isolated. It is good to meet other people who
really understand what you are going through.

Feeling bad about yourself

Another common consequence of brain injury is having a low

self esteem or feeling bad about your self. People often find it
very difficult to accept that they cant do certain things as
well as they used to. They can be very hard on themselves for
making even the smallest mistakes. This is particularly
difficult if they were a bit of a perfectionist even before they
had their injury. They may also develop lots of negative
thoughts about themselves or about what other people think
of them. Sometimes, for example, they may think that they

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are worthless or that other people will think badly of them
simply because they made a mistake in trying to remember
something. If you have lots of negative thoughts about
yourself it is a good idea to find someone you can talk to
about them. Some psychologists call these thoughts
jumping-to-conclusions thoughts and spend a lot of time
trying to help people to feel a bit better about themselves and
trying to help them to be kinder to themselves when they
make mistakes. All of us make mistakes from time to time.
When you do remind yourself that you have had a brain
injury and that it is not your fault. Sometimes it also helps to
imagine what you would say to someone else who made the
same mistake. You have to be as kind to yourself as you are
to other people.

Getting stressed out!

Most people who have a brain injury find that they get
stressed a lot more easily than they did before and that things
which didnt stress them in the past do stress them now. You
can also get stressed by certain kinds of lighting or by noise.
Sometimes the things that stress you can be surprising and
hard for other people to understand.

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The best way for you to think about your ability to deal with
stress is to think about your stress capacity as being like a test
tube. Everything that stresses you during the day goes in to
this test tube. The problem when you have a brain injury is
that your test tube gets smaller. That means that it fills up
much quicker than it did beforehand. When it is completely
full what often happens is that something fairly trivial makes
the test tube overflow and this is what leads to all the
previous stress flooding out of your test tube. You can find
that you react in a stressed or angry way which is quite out of
proportion with what has just happened. This is because your
reaction is related to all the previous stress in your test tube as
well. It is really important to find things which help you to
relax because when you do relax this helps some of the stress
come out of the bottom of your test tube giving you more
room and ability to cope with any stresses which might
happen later. Every person has their own best way of
relaxing. Some people find it helps to have a nice bath.
Others find it helps to go for a walk or to spend time on their
own. Some people also find it helpful to listen to relaxation
tapes. If you are unable to think of anything which helps you
to relax ask those people who are around you or who are
helping you if they have any ideas.

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 CHAPTER 6

HANDY HINTS FATIGUE/ FEELING TIRED

In Chapter 4 we looked at some of the different difficulties

which people with brain injury can experience. This chapter
discusses ideas regarding how to find ways round the
problem of fatigue.

Coping with Fatigue

If you have to cope with the problem of fatigue, or tiredness,

the golden rule is to pace yourself. You need to alternate
periods of activity with periods of rest. It is helpful to think of
your energy levels as a kind of fuel. You have limited amount
of fuel to last all day. If you rush around as soon as you get
up in the morning you will have no energy or fuel left for the
rest of the day. Having a rest period, however, acts as a
refuelling stop giving you more energy for later on. If you are
planning to do something which is going to use up a lot of
your energy in the afternoon or evening it may be a good idea
to rest in the morning to help save enough energy for you to
use later. Also if you are going to be doing something

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unusually active, such as going to a wedding dance,
remember that you may still be tired the next day so it is a
good idea to plan for this day to be restful also.

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 CHAPTER 7

HANDY HINTS - MEMORY

People who have had brain injuries use a variety of different

methods to help them get round their memory problems. These
include making lists of important things to do, using calendars
and diaries and also using personal organisers. Whatever
method people use it is very important to get in to a routine of
using it. If you use a calendar, for example, it will not be very
helpful if you forget to look at it! You are more likely to
remember to look at it however, if you do so at the same time
everyday, such as just after you have had breakfast. You may
then wish to transfer the information on your calendar for that
particular day on to a notepad or things to do list. Keep this with
you throughout the day to act as a further reminder later on. If
you are likely to forget to look at your list you may find it
helpful to wear a watch which beeps every hour. The beep can
remind you to look at your list.

It is also important to remember where you put things, such as

keys or important documents. It is helpful to get into a routine of
keeping keys in the same place and placing them there as soon

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as you enter the house. To help trigger the need to do this you
can also put a picture of keys in the place where they should be.
Documents should be kept in labelled files always stored in the
same place in your house. When a new document comes in to
your house, such as a new TV license, put it in the correct file as
soon as you can.

You can buy commercial devices such as watches or mobile

phones which also have reminder facilities. Some people find it
helpful to use these. They may be set, for example, to beep
several times a day to remind you to take your medication or to
do something else that is important.

There are some other techniques that can help people with
memory problems as well but these ideas are the basics.

If you want more ideas ask your neuropsychologist if they can

think of anything else that might help.

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Remember

1. Try to use a calendar, diary or things to do list to help you

remember important things you have to do.
2. Get in to a routine of looking at these at particular times
throughout the day.
3. Keep important items such as keys always in the same
place.
4. Try using the reminder facility on a mobile phone or watch
if you want to.
5. Ask your neuropsychologist if you want more ideas or if
you want help with any of the ideas already given.

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 CHAPTER 8

GETTING STARTED

In Chapter 4 we learnt that one of the difficulties which people

with brain injury often report is difficulty getting started. This
means that although a person may have things which they want
to do somehow they have difficulty getting round to doing them
or difficulty getting started. This is a problem which everyone
experiences from time to time whether they have had a brain
injury or not. If you have had a brain injury, however, especially
if you have damage in the front of your brain, you are likely to
experience this more often. You may worry that other people
think that you are lazy. It is important to remember that this is
not the case. You are not lazy. Your brain is just having
problems helping you to get started. If the computers in the
control tower of an airport are not working properly the
aeroplanes can not get started either. If you have damage in the
front of your brain it can be the same for you.

This chapter looks at things you can do to help you get started.
Please read the whole chapter before you try to follow the ideas
which are discussed. The chapter helps you work out the steps
you need to complete a task.

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STEP ONE
The first thing you need to do is to decide what it is that you
want to do. This is your goal. Below are a few examples of
goals which other people have chosen in the past.

. Tidy up the garden shed

. Do an evening class in computing
. Go out for a meal with a friend
. Knit a jumper
. Write some Christmas cards

STEP TWO
Decide if your goal is realistic. It is very important that your
goal is achievable or possible given the abilities that you have.
Sometimes people choose goals that are not realistic. For
example, a person may want to ride a motorbike when they have
severe visual problems. Someone else may want to work as a
scaffolder off-shore when they have very poor balance. These
goals would not be achievable for these people. They would
have to choose other goals instead. If you are not sure if the goal
you have selected is realistic ask someone close to you what he
or she thinks. Once you are happy your goal is realistic you can
go on to step three.

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STEP THREE
In step three you need to break down your goal in to the steps
you need to take in order to achieve it. If your goal is to write
Christmas cards, for example, there are several steps which you
need to take to do this. First you need to decide whom you wish
to write Christmas cards to. Then you need to decide how many
cards you need. You have to go and buy the cards. You have to
set aside time to write them and finally you have to put them in
their envelopes and deliver or post them. In order to achieve
your goal you need to complete all these steps and to complete
them in the correct order. Over the page is an example of the
steps you would need in order to bake a cake.

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Steps to bake a cake

. Decide which recipe you are going to use

. Make sure you have the necessary ingredients
. Go and buy any ingredients you dont have
. Weigh out the quantity of ingredients which you need
. Turn on the oven to the temperature stated in your recipe book
. Follow the recipe
. Put the cake in the oven
. Set an oven timer for the time required to cook the cake
. Remove the cake from the oven when the timer beeps
. Turn the oven off
. Let the cake cool down
. Eat it and congratulate yourself on your success!

As with the example of buying Christmas cards, it is necessary

to follow all the steps in the correct order.

Look at the goal you have chosen. Think of all the steps you
would need to achieve this goal and try to write them down. If
you have problems working out the steps you need to take or the
order they need to go in ask someone to help you. Remember if
you do have problems deciding this it is not your fault. Deciding
which order to do things in is a common problem experienced
by people who have had brain injuries.

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STEP FOUR
Set a time to start work on your goal. Write this time in your
calendar, diary or personal organiser.

STEP FIVE
Start work on your goal. Do the first step first. Cross it off on
your list of steps and then go on to the next one. When you have
completed the next step cross it off too, go on to the next one
and so on. When you have done as many steps as you want to
towards your chosen goal decide when you want to continue
completing the steps and make a note of this in your diary. If
you keep following this pattern, with help if necessary, your
goal should soon be achieved.

STEP SIX
By following the steps necessary your goal should be achieved.
Congratulate yourself on your achievement. If your goal has not
been completed it may be that one of the necessary steps was
accidentally missed out. See if you can spot which one or ask
someone to help you. Over the page you will see a form which
is designed to help you get started. There is a space for you to
write down your goal and also a space for you to write down all
the steps you need to take in order to achieve this goal.

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GETTING STARTED GOAL PLANNING SHEET

WHAT IS YOUR GOAL?

WHAT STEPS DO YOU NEED TO TAKE?

1.

2.

3.

4.

5.

6.

7.

8.

9.

10.

WHEN WILL YOU START WORK ON THIS GOAL?

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 CHAPTER 9

Self Help Organisations

This is the final chapter of Brain Book. Recovering from a brain

injury is about getting to know you and finding ways round the
difficulties which you have. I hope that Brain Book has been
helpful.

Below are some addresses for self-help organisations which

provide ongoing support for people who have had brain injuries.

Headway Chest, Heart and Stroke Association

4 King Edward Court 65 North Castle Street
King Edward Street Edinburgh EH2 3LT
Nottingham NG1 1EW Tel: 0131 225 6963
Tel: 01159 240800

Stroke Association Encephalitis Support group

Stroke House 44a Market Place
Whitecross Street Malton YO17 7LW
London EC1Y Tel: 01653 669599
Tel: 02075 660300

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About the author

Louise Blackmore is a Clinical Neuropsychologist who works

with people who have had brain injuries in the Highlands of
Scotland. Brain Book was written to help the patients who come
to see her, some of whom travel over 420 miles in order to do
so. Louise wanted them to have something which would help
them remember what was discussed in appointments. Brain
Book was written with this in mind.

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