TRAUMATIC BRAIN INJURY (Guidelines)

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.

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 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.

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.

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.
2. Poor Concentration
   People’s 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 lose 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.
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 don’t 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.
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.
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.

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 didn’t 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 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 can’t 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 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 can’t 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 injury are hidden but lots of other people don’t understand that this is the case. You can also find that friends treat you differently or that they don’t 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 can’t 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 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 didn’t 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. 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.

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 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.

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 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.

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.

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.

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.

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.

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 don’t 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.

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.

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 - 4 King Edward Court, King Edward Street, Nottingham, NG1 1EW, Tel: 01159 240800

Chest, Heart and Stoke Association - 65 North Castle Street, Edinburgh, EH2 3LT, Tel: 0131 225 6963

Stroke Association - Stroke House, Whitecross Street, London, EC1Y 8YY, Tel: 02075 660300

Encephalitis Support Group - 44a Market Place, Malton, YO17 7LW, Tel: 01653 669599