Folk.us Personal Stories - David Robinson
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Personal Stories - David Robinson
Head injury; an insider’s way of managing it.
Things you might do
1. Mental slowness
4. Physical disability
5. Poor balance
6. PEG feeding
12. Hidden disabilities
14. Caring for carers
The purpose of this booklet is really to suggest ways that you might do something to make life better after an accident. It does not cover everything you might have. It is based on my own experience both of an accident and of what we did in the months and years that followed it. I should make it clear that only those things that were part of my head injury are covered. There are some conditions that I have never experienced first hand and which others have. It also does not do more than touch on the treatment that I received in hospital.
There is no intention in these pages to say, “This is how you should do it”. If there is nothing else that I have learnt from the last four years it is that there is no standard way of approaching the problem of head injury. In the same way that in most cases the accident which brought us to this condition was random, so are the results of it. Whereas one person may have handicap of movement as well as problems with speech and hearing, someone else may have almost an inability to think normally, have altered personality, have lost their sight and have weakness and loss of sensation in one hand. I could go on all day, but the important thing is that we are all different.
How far and how long should you go on? That’s entirely up to you, but you are probably never going to be as you were. The most important thing is that people don’t feel that it’s necessary to play you down - speak especially slowly or loudly to you, think it’s best not to ask you to play games or join in with what they are doing. You are, after all, pretty well a normal member of society, and you should be treated as such. There is no need for them to know everything that’s wrong with you and, after all, many normal members of the public have the same sort of things that you have, just on a smaller scale and not all at once. Your target should be to be accepted.
I’m going to tell you what has happened to me, what I have been helped to do to improve it and how, and what the results have been. I also want to give a few ideas that could make things a bit better.Top
I was, before the accident, pretty well normal. On the way to choir practice with my wife, we were stationary behind a bus at the entrance to a narrow and twisty part of the road, when a car, driving too fast and losing control, flew over the corner of the bus and landed on top of our car. My wife was knocked unconscious for a few seconds. It landed on my head and gave me a severe head injury and facial injuries.
I was taken to the nearest large hospital and almost immediately transferred to Plymouth because my condition was deteriorating. I remained unconscious for three months.
I was leaking cerebrospinal fluid from my right ear, and the X-rays showed that I had a series of depressed fractures in my skull, apart from the depression in my face, mainly on the right side. Not surprisingly, within a few days I developed meningitis, which put me at further risk. It became apparent that I had some degree of right sided paralysis. I later developed MRSA, a severe hospital infection. The facial injuries were reduced in theatre after a few days, which made me at least look a bit better!
I developed a severe anaemia and had to be transfused. A PEG tube was inserted from my stomach to the front of my abdomen, and I had an air tube (a tracheostomy) fitted in the early days.
During this period I was restless and rather destructive, pulling out tubes and drips and the trachy, and making life hard for people looking after me, but making no attempt to communicate. Perhaps rather surprisingly, and against the somewhat gloomy predictions of the consultants and the ward staff, after three months I began to wake up. The physiotherapist got me out of bed and standing up, and my wife, who had been to the hospital from 30 miles away every day for the past three months, began to show me pictures of the family, of home and of things that I had loved, like my boat, and began to play me music on the tape recorder - Mozart and Handel. The daughters and one grandchild came to see me regularly, and one of them got on the internet and established a relationship with the many people on my list, in many different countries. Although I remember none of this, I believe it was a most valuable first step to my recovery.
During the weeks that followed and I woke up more, a sort of pattern developed. As much of the day as I could manage, at first for only a few minutes, I would try to walk down the corridor on the ward, and as time went on I left the ward and went along the hospital corridors. Eventually, but that’s perhaps another story, I took to the stairs, rather slowly and precariously, which gave the staff kittens when they found out! For the last few weeks I also got hold of a training bicycle which I kept in the physiotherapy department. In the last month my wife was allowed to take me out to the park with a sucker, a bottle of oxygen and serious warnings (which she ignored).
It may sound as if I was already over the worst, but I was confused, emotional, very narrow minded and liable to depression and incapacitating tiredness. My right-sided weakness had begun to recover with deliberate exercise. My memory had started to come back and it was very good to be out, although these, as the other things that I had been doing, were to some extent spoiled by being unable to enjoy myself and feel happy.
I started to feed myself with a syringe through the PEG. I could not swallow at all, which included all food, drink, and the saliva in my mouth, and I occasionally got confused and forgot it.
I stayed in hospital rather longer than expected. Partly because I still had the tracheostomy, partly because my head injuries had been severe and the staff could not really believe that I was actually going home. They talked long and hard about getting me out and finally agreed that they would try it.
My wife took me home after about 5 months in hospital. Over a period of many weeks, the first part of which I cannot remember, I slowly got better. I had a physiotherapist for several months, who made a programme for me of what I should be doing. This was invaluable, and I still do her exercises. The tracheostomy was removed after 12 months. During this time, and for many months, I had excellent but rather sad guidance from a food adviser, and my speech, which for most of two years was nothing much more than a hoarse whisper, was treated by a voice therapist. The problem was that my right vocal cord was paralysed, and eventually the ENT consultant put a plastic bead in the cord, which moved it over and improved my voice. An important piece of care has come from the neuropsychologist, who has been an essential contact with reality.
I eventually learned to drive again, which made life a lot easier, but two events occurred in the third year which threatened it all. The first was an attack of laryngospasm in which my throat suddenly closed completely for about 30 seconds, five times in a few minutes. The ENT consultant told me jocularly that usually people become unconscious with this, and that they then started to breath normally and woke up. Not too cheerful, but better than not waking up, I suppose!
The other was the onset of mental seizures (minor epilepsy), which often (about 30% of cases) follows head injury. This has meant first of all that I cannot drive for a year after the last attack, and that I have to take tablets for the rest of my life. For the first time for several months, I cried. It was something about which we could do nothing. OK, it could be controlled, but that was all. The thought of taking tablets for the rest of my life, added to the inability to drive, was most depressing.
And the last thing is that my feeding and drinking have not returned. I have to use a PEG, which is tedious, apart from its other disadvantages.
In this section I want to say that without my wife and family none of the recovery would have happened. They have made life more than bearable, for all the difficulties I may have given them.
Finally, how am I now? Let’s be specific. Mentally I am still a bit slow and I have occasional confusions, and even though I do two quite important bits of voluntary work, I cannot ever work for money again. I have a poor memory of recent events. I have minor epilepsy. I have a very minor residual slowness in my right arm and leg. I have quite a severe deafness in both ears. I have a fixed double vision and a flickering vision (nystagmus) to the left. I have altered sensation in my mouth and lips. I cannot swallow or eat and I tend to cough a lot. My voice tires easily. It is reasonable when it works, but it tends to get mixed up when I’m under stress. I have rather poor balance.
This sounds a lot, but on the other side there is something good. Last summer we went to Austria (taking all my feed bottles with us), back to an old haunt where we took the children years ago. It was marvellous. But what was comforting was the final evening when the sun went down, the breeze was stilled over the lake and the cowbells sounded in the approaching dark. It was beautiful. And I felt it so all in a rush. My sense of joy had come back.Top
Things you might do
The overall issue is acceptance. There is certainly a point in us accepting that things have happened and that we now have this or that mental or physical problem, to some extent - possibly for life. That does not mean that we sit back and do nothing. We are no different from anyone else, and if they want to get fit, or change their habits, or become somewhat different they work for it.
When I was at medical school, a long time ago, we were taught that once you’d had damage to your brain that was it. It was unlikely to change very much after the first 18 months or so. This is just not true. Perhaps we shouldn’t expect people to be as wonderful as they once were, but there is nothing stopping almost all of them becoming more competent, less dependent, more skilled, more confident, less resentful and less resigned.
I really believe that the best way to start getting back to what you were is to push yourself a little. To set yourself targets and stick to them. I have never forgotten seeing the pleasure on a man’s face when he made a children’s plastic toy for the first time since his accident. At last he had used some of his old skills, and although he admitted that it was a fairly rough model, it was something he had made, when he thought he could do nothing.
Let’s look at the disabilities I have and see what I have tried to do with each one.Top
1. Mental slowness
Being mentally slow is something that many of us suffer from. What it consists of is taking longer than a person of your age with a brain that is working normally to reach a decision, often getting to that point by putting together more than one event or fact. Perhaps what someone is good at, what time of day it is, what advantages might be gained by the action and whether there are any risks. The sort of things that you might well have to manage every day. The easiest thing is to limit yourself to situations in which rapid decisions never have to be made. But think how limiting that is.
Now there’s no point in doing it once. The results will probably be horrible the first time or two, but this is only a start and you can only get better. Although it may take a bit of time, and involve a fair amount of negative thinking, you will almost certainly get there. But only if you are prepared to do three things.
1.1. The first trick is to put yourselves in the situation where simple decisions do have to be made, and to do it as privately, and eventually as quickly, as we can. There are probably two things open to most of us. The first is crossword puzzles or newspaper quizzes. The point about these things is that they do ask you to make decisions but that nothing happens if you get them wrong – except that you get a bit cross with yourself, which is the beginning of making it better.
1.1a The first is to keep going. Let’s be honest, it may be weeks or even months before you really see much improvement, but it will happen, and you are the only one who really knows it is going on, unless you want to tell someone else. Look back every so often, and you will see how much you can change. What seemed impossible becomes do-able, even if it’s not that good at first.
1.1b The second is to set aside a fixed time of the day for it. Make it part of doing whatever you do during the day, but try to do it every day so you never have the chance to forget it, even when it isn’t going too well. It’s when you’ve not done so well that you really do need to do it again and keep doing it. That’s the time when you can change yourself. It’s time to grit your teeth and try again, and to go on trying again until it goes better.
Don’t listen to those well-meaning friends who tell you in all honesty that you need to take a break, to give yourself a rest. And this applies to everything you do, not just to mental improvement.
1.1c The third thing is to time it. You may well be surprised by the improvement you notice, and it may sometimes reach a plateau and apparently get no better for a time. Don’t give up. The plateau is just a way of taking a rest. It will eventually start to get better again if you keep going at it. You can use any clock you like. But do do it and keep a note of it. It at least shows you that you are changing over the weeks.
1.1d If you are working from a booklet rather than the newspaper, when you think you have got as good as you are going to get, start a new book with rather harder questions. Your time will get worse, of course, but it’s a good moment when you move on like this. If your newspaper has more than one crossword, do the simpler one first until your skills begin to build up a little, and then try the trickier one. If you find, as can happen, that you can’t make progress with the harder one, go back to the easier one and come back to the harder one in a week or so. But keep going – don’t despair.
All of this rather depends on whether you are able to read. If your vision is no longer so good it’s still possible to stretch your brain like this with a bit of help, and two people on a timed challenge is often a good idea.
1.2 The second way is to use a machine. I have a small computer called Nintendo, which has a programme in which various number problems are given to you as fast as you can take them. And they get slowly more complete and harder. You can get something very similar called “Brain Training” in computer format, which you can load into your computer, if you have one, and then use it as often as you want to. The first time you use it you will be slow and inaccurate, but if you keep going at it you will, without even noticing it, start getting quicker and more accurate. The computer programmes have their own timer, which is useful.
Both systems also have a programme for assessing your skills. If you want to know it will tell you how old your brain ought to be for someone with your score. Believe me, there is a real sense of achievement in seeing your age drop in the machine. There is a sort of childish pleasure in getting the answers all right and in winning an age less than your own.
Forgive me if I say this rather often, but you need to go on using the machine every day if you possible can. It is, frankly, rather boring after a few weeks, but it works. It wakes your brain up and makes you feel a lot better. It really is worth the effort.
1.3 The third way seems to be self-defeating, but it may work for you, as it has done so far for me. One of the big problems that many of us face is not being able to make ourselves understood at the time when it needs to be done. In other words, by the time you’ve thought of a response, or an idea, it’s too late, the discussion has moved on to something else. And if you try to put the response in everyone thinks you’re a bit strange. Being slow in sorting out the words and overcoming the memory problems marks you as mentally retarded and, particularly in the pub, if people have had a few, you tend to be ignored.
1.3a What I’m suggesting is that you start by talking at length on a suitable subject to your family as a sounding board. They understand you better than anyone else and they are more likely to give you the time you need. The first longish conversations may be hard for all of you, but it’s amazing how much you learn.
1.3b I found that it’s always more difficult with people you don’t really know. Curiously this also applies to families, because you go into discussion with them with the assumption that you’re not going to be able to keep up. Even with the family I suggest you have a bolt hole. Somewhere you can go away to that doesn’t raise any worries (so don’t hide in the loo!). But join family get-togethers and try to contribute as much as you can. It will be hard at first, as you won’t seem to have much to offer, but it really doesn’t take long for you and for them to feel more at ease with your performance, and to get used to your slinking away or even dropping off.
1.3c The next stage, when you feel ready for it, or perhaps a little earlier if you’re feeling strong, is to go public. This means going into a group where you have mainly people who don’t know you so well and who, although they may know you’ve had an accident, don’t really know what it means. They may well respond by being almost too nice to you, as treating you as special or rather like a child, when really all you want is to appear and to behave normally. You can get cross about this, and you probably will at first, but it is inevitable, and you can smile about it to yourself later.
Try to find an accomplice in the group, perhaps a family member or a friend who knows more about your problem and is ready to give you more time without hanging on your words. And be prepared to escape as often as you need to. Don’t get into the position, if possible, where you really have to think on your feet.
If the conversation is going rapidly from one subject to another you may not be able to keep up because it takes you that much longer to process the words. Just keep out of it until it slows down, or escape for a bit.
When you want to contribute, keep your input as simple as you can. If this means thinking word for word what you want to say, so be it. The next time, or the time after that you’ll be a little quicker. Even if before your accident you used to be the life and soul of the party try to keep yourself down to what you can do, but push your opportunities a little. If you can, try to get your intervention in when there has been a bit of a natural break, so that you come over as someone with ideas, even if you don’t come in again, and that makes you feel a great deal more comfortable and somehow more acceptable.
Don’t expect to get back to what you were soon or possibly for ever. The aim should not be to excel but to take a reasonable part and perhaps be accepted, like so many others, as someone who makes his point validly but only occasionally.
Don’t be put off if you come away from meetings with you being a bit confused and angry with yourself. First of all you will get better at it, and second you’ll become used to being a bit different.
1.3d The last thing I want to suggest may seem a bit odd, namely writing. Sitting with a piece of paper or a computer screen in front of you tends to make you think deliberately and fairly slowly. It brings out ideas and words in a way that speech doesn’t. I have found that crystallising words onto a bit of paper is really rather useful in getting your mind working the right way for conversation. I almost invariably find after a computer session (because I tend to write illegibly since the accident) that I can speak more clearly and use a wider variety of words. I think the important thing is that the writing or computer work is not just a matter of copying but is writing something from scratch, so that you’re having to decide what you want to write and how you’re going to put it, but can change it as much as you want. You need to do it often over a period of time. All I can say is that it seems to work for me. Try it and see.
1.4 The last part of mental slowness I want to mention is our relationship with people. As part of the process of not being able to remember, people sometimes become less to us than they used to be. In fact they lose their importance almost completely for a time with some people who have brain damage. They become of no real importance to life. They are simply associated with food, with home, with transport, and so on. This will pass to some extent, but don’t be surprised if your attitude to other people is not as warm and close as it used to be. In a funny sort of way you seem to be looking at them only from outside, and the rest of them, which was the root of our feeling for them, is somehow less relevant. It’s hard for the family particularly.Top
Almost all of us have a problem with short term memory. There are all sorts of tricks for trying to improve your memory, but I must admit that none of them have worked for me except writing things down to remember them before you forget. My feeling is to stay as well as you can. Do regular exercise, if you can, and hope for the rest. There are three things I would suggest.
2.1 The first is to do what you have to do straightaway, before you’ve had a chance to forget it. It doesn’t always work - I’ve sometimes ended up in a room with no memory of why I needed to be there – but it’s better than nothing, provided you can remember what you stopped doing in order to do this. So try to tell someone where you are going, and then if you forget your original task, ask them what you were doing.
2.2 The second is that you will probably have to stop relying on the very short term memory. I’ll give you an example. If you have to address a meeting, don’t assume that you will remember what you were going to say. Write it down, and I mean literally that. Produce not notes, but a word by word speech. Then make it personal, so that when you read it back it sounds like you talking. It actually isn’t that hard after the first time, but I have to say that I have come across speeches only a few weeks after they were used which I don’t remember giving at all.
2.3 The third thing is that trying to recall something is sometimes helped by not thinking about the actual event or person, but thinking around them so that something clicks. You may, for example be trying to remember a lady’s name, but it escapes you. Think of her husband or a close friend, and then, having remembered that linkage, to get her name. It works sometimes.Top
There are several attitudes to moods that I want to discuss. I have no clear answers to any of them, but being aware of them is important.
3.1 One of the problems that people have with many us is that we have changed. We are different people than we were before the accident. We may be more dreamy and detached, or more aggressive, sometimes just short- tempered and often more childlike. All of these affect the people we live with, our families and friends. We may change as time goes on, but we are unlikely to return to exactly what we were.
3.1.1 We probably cannot escape becoming different. But we may be able to avoid doing anything that our families find difficult. The first thing is to open your eyes to yourself. To see yourself as others see you. This is not to say that the way you are now is worse. It’s just different. You really do need to do this yourself. Being told you are unthankful, dismissive, or childish by others doesn’t help, it just makes you angry or resentful, or you ignore it.
Somehow you have to look at yourself on your own and think about how you react to things, about what you have the power to be. It’s not a matter of going back to what you were but of making yourself acceptable to those who you spend your life with. Try to use what resources you have to get through each situation as peacefully as you can. Use what self control you have to do things in the way that the world can live with. For example, bite your tongue instead of saying what you may be thinking. Keep it in your head, and in time it will have its edges rubbed off and you will start to see how unnecessary it was.
If you have become dreamy, set yourself a target for getting things thought about and done, even if it turns out to be less than. The most important thing is not to worry about it. There is little you can do about it, and it does no harm for other people to steer clear of giving you messages and addresses, unless you can write them down. It would have happened to all of us in time!
If you are accused of being childish, see how you can get yourself in a position where you can laugh instead of becoming pettish. Each time it’s a little easier. Not so simple. Good luck.
3.2 The next suggestion is the opposite. You may, as many of us do, have good people in our lives who take over a bit. Do things for us and keep a check on us. It has the advantage of getting things done. On the other hand
it is frustrating and gives us too much time to feel resentful and rather powerless. This sort of thing brings out the worst in whatever we have become. There’s a limit to how much you can do by arguing with your carer, but bring in a third party and the situation may change. I don’t think you need to have someone examining your relationship with your spouse, but I do think it is good for you to have some one to – carefully - vent your concerns to. It may be someone in the family or a good friend, but make it as light hearted as you can, so that neither you nor they see the role as that of a therapist.
I think it’s important not to expect to go back to exactly what you were. But if you are sensible, whatever you are now should be able to manage relationships fairly well. It may not be as close as it once was, but it can be more than liveable with.
3.3 The first specific problem is depression. It is no surprise that people who have suddenly become different in the way they behave and the way they live stay sort of happy until the improvements begin to become few and far between. This is probably why I have tried to believe that everything will get to some extent better in time. Which is fairly true. But there are times when nothing seems to change, when you are constantly reminded of what you can’t do that other people can. Then there is a danger of slipping into blackness of mood. First of all you just get glum and hard to live with. If it is allowed to go on it becomes clinical depression.
This glumness is one of the reasons why I have tried with all of these impairments to find practical ways of changing their importance. Alright, so I can’t run the way I could - but I can still walk a long way. I can’t eat or drink – but it’s a darn sight quicker now taking food with a PEG. I think rather strangely - yes, but I don’t get headaches any more. And so on. For almost everything there is something you can do well enough to feel satisfied with it. When you come across something for which you can do nothing, try very hard to keep it out of your mind. If it really gets too much for you, go and see your GP and see if he can help you out of it.
3.4 The next thing I want to bring up is that people have the impression that one thinks of oneself all the time. Absolutely true for a lot of us, but the reason for this is that everything we do through the day is ruled by the problems we have, and it can take up a lot of time. Whether we like it or not, we have to feed ourselves, meet people despite the problems of speech, remember things that might have been important, get tired that much more easily, think about how we’re going to react to having everything we try to do and so on, and perhaps most important, to spend our lives wondering if we can do what needs to be done.
It’s endless and makes us think about ourselves with almost everything we do. And whether we like it or not, these things, which are all to do with us, have to be sorted out before we can do anything else. So it’s not too surprising we think of ourselves more than others. It’ll probably get better with time
3.5 I want to touch on the ability to feel enjoyment. Many of us lose this for a long time after a severe accident. You see something good and you think that once you used to get excited about that but, what the heck, this view is just the same as always. And you shrug it off. It’s a terrible waste, but one that many of us have. I don’t know any way round this, but it will suddenly pass for many of us, perhaps if we expose ourselves deliberately to things and places that we used to find beautiful. And the passage of this mood brings with it a wonderful feeling of peace.
3.6 The last mood I want to bring up, and I’m not sure it is a mood, is the emotional fragility that a lot of us have, particularly in the first months after the accident. If things go wrong we get furious. If things are a bit sad we may cry. If things are funny we may react like a child, giggles and throwing the arms about and all. What can I say? It will pass. You will get back close to normality, and the chances are you won’t really notice it. It’s quite likely that your old restrictions will come back, in terms of saying to yourself, “That’s sad, or funny or infuriating but I can’t tell the world about it”. But don’t be surprised if you’re made to laugh or feel sad by different things. That’s part of the personality change that sometimes happens.Top
4. Physical handicap
I have only a minor physical handicap. I had a right-sided paralysis, which has got largely better. I know there are some of you who have severe physical handicaps and I’m not qualified to propose what to do about that situation. Some of this may be helpful to you.
Following an accident a sizeable number of people have some level of paralysis in one or more limbs. Please don’t assume that you are stuck with that. My experience has been that you can change it. It’s a bit trickier if you are unconscious for a long time, because I think you need to start this as soon as you can. It is remarkable how much difference exercise makes. I don’t mean keeping fit, but working on the affected limbs.
4.1 Upper limbs.
4.1.1 What you may find helpful, certainly I did, is to start moving the arm upwards. Ideally you should raise it up, and bring it down under tension, so it comes down slower than if it is just dropped down. If you can’t easily raise it, then try walking up the wall with your fingers. Go as high as you can and keep on until your arm is tired. You may find it useful to have a weight around your wrist to make the lifting a little more difficult. Do it at least three times a day to start with and then daily
4.1.2 As your arm gets a bit stronger, stand facing the wall and slide your hand up it and down again. Using a ball between your hand and the wall may help.
4.1.3 When you can, and it may take some time, start sliding it upwards but in a semicircle, so you actually move your arm away from the body and up, keeping your arm as straight as you can all the way. You can also use a ball for this instead of sliding your hand over the wall
4.1.4 When that seems to work well, move on to making a complete circle with the arm against the wall.
4.1.5 The next step is to do the same thing away from the wall, taking all the weight of your arm on your shoulder. It may take several months to get that far, but it feels good when you do it.
4.1.6 The last step of all is simply to stand still and stretch both arms upwards, moving the arms to that position by going forward away from the body. Count to ten and then bring them down again. Do it again, this time
starting the action with a movement of the arms to the side, reaching the top. Do it as many times as you feel comfortable with – but not too comfortable.
Now I cannot give you any guarantee that this will work, but if when you start you have some movement in your arms, I believe it will be of some value. But it does take time, and the exercises do have to be done every day for quite a long time. And finally you do need to have some measure of your capacity as you go along - just to encourage you.
4.2 Lower limbs.
4.2.1 If you can already get to your feet and walk, however slowly, you can make it better. If you can only manage 20 yards at first, it will grow. What I would suggest is that the way to make anything work is to keep using it. Try to walk indoors as far as you can, even if it means a lot of turns. Then if you can get a rail on the stairs, start walking up the stairs. Have someone with you strong enough to catch you if you try this, as it really can be quite hazardous
4.2.2 When you are ready for it, take your walk outside, but it really should be at least every day. When you think you are ready for it, go with someone to a park somewhere where there is a possibility of a walk of about a quarter of a mile – preferably ending where it starts. There is no hurry, and if you can, walk unsupported so all the work is yours. Keep on at this for as long as you need to, and then try it on your own, with someone on the side of the field to pick you up when you fall over!
The last thing to say about this, as always, is that you can achieve more than you think. It’s amazing how much you can get mobile. I still have slowness in my right arm and leg, but they worked quite well enough to get me up the Alps this year.
4.2.3 Once you can do this, you can start walking the road down to the shops, and get some independence. Go on, buy your spouse some chocolates or something. He or she deserves them! Sorry about this, but it’s wonderful to do something for yourself!
4.2.4 One word of warning. You may find yourself able to walk and to use stairs as well almost as everybody else, but be careful. Because if your leg stays a tiny bit slow it may not be where you hope it will be when you move faster or more extensively than usual. For instance, you may be able to get up or down stairs as fast as the others but be careful if you’re tempted to run up the stairs or to walk up or down two stairs at a time. This is the way to disaster. With practice you may be able to do it, but watch it.
4.3 One of the important things about recovery from physical weakness is to take measured exercise. I take 25 - 30 minutes of physical exercise every day. Starting and ending with stretching and spending time on a series of exercises which work on all the major muscle groups. It does make you feel a lot better, the weaknesses do respond and you lose the pain in your back and shoulders that comes with advancing age.Top
5. Poor balance
Many of us have poor balance, which may be made worse by antidepressants or anti-epileptics. It usually comes more when we move our heads quickly or when we are tired. It makes us walk like we have had too many, and climbing over things can be a problem because you are on one leg, and you are more stable with two.
5.1 The one thing that I have found to make any difference is a simple exercise. Just walk by placing one foot in front of the other, so that the heel is just in front of the big toe, 50 paces a day, looking straight forward, quite slowly at first, but going as reasonably quickly as you can. I have found that this slowly gets you more in balance over the weeks. I still have imbalance when I move my head too fast.
5.2 The other piece of advice is to avoid walking in the dark or in poor light, especially if your eyesight is not too good. It’s very easy to be overcome by lack of balance, and to fall, or to lose your direction. If you go into dark places it is better to have somebody with you or within call.Top
6. PEG feeding
Some people, of which I am one, have lost their ability to swallow. This means that you can’t eat and you can’t drink and you spit a lot. You wouldn’t live very long without some rather special help. The help in question is usually a PEG tube, which is a plastic tube from the outside of your abdomen to your stomach. All your food, your drink and anything else you need to take by mouth is passed through the tube with a syringe.
6.1 The first thing to say is that PEG feeding is very boring but quite essential. I have my feed twice a day, once at about midday and the next “meal” at around 6.00pm. I then have a feed all night through a tube and a machine which gives me 1000ml in the course of about 8 hours. I start the day with water, by tube of course, which both flushes out the tube and gives me some fluid to start the day, and I have a dose of fluid at about 9.00am and after each feeding.
6.2 I have tried a variety of other regimes, but as the feed tends to make one sluggish you will probably come back to a reasonable amount twice a day and the majority given at night while you’re asleep. The first thing to say is that you should not expect to taste anything. You never – I hope, it tastes revolting - get the feed anywhere near your mouth. The feed is a special mix which in principle gives you everything you need. You probably won’t either gain or lose weight if they’ve got the dose right.
6.3 The second thing is that, although you may already have been doing it, it’s worth using a pair of plastic jugs to pour the feed into. Never mind what they do in hospital. The night time feed comes straight from the bottle, because you take it all, but the smaller bottles may well be shared between feedings, so rather than poking things around in the bottle it is both safer and easier to pour some into a jug. Water also goes into a jug.
6.4 One of the practical issues is when the skin around the PEG gets sore. This is not a disaster, but it is good to do something early. I use Betadine spray, which is a powder in a tin which comes out under pressure. Lift the PEG from the skin, clean it and the skin, and then dry it off. Then lift it and to one side and spray underneath it and as much down the hole as you can. Do this all round the PEG.
6.5 It’s possible that, like me, you will have a feeding disorder that you think is going to get better, and it does happen, even after a long time. I know of one lady who had one for seven years and then suddenly began to feed normally. But your body must remember what it has to do. This means having trial feeds, usually crème brulée, for as long as it takes three or so times a day, possibly for a long time. Very tedious, but if you can make it part of the daily routine it becomes bearable. It’s worth it.
6.6 There’s no reason why it should limit your activities. You’ll have to spend some time working out the best way for you to get your feed while you are travelling, and it is rather heavy, but it is far from impossible. Abbotts, who make the feed and the various tubes, will arrange to supply you anywhere in Europe for as long as you need it, so don’t let food put you off going abroad. However, check before hand that it has arrived, and take a few days supply with you, because if anything has gone wrong you’ll starve without it (or live on soup)!
6.7 In company for any time there is no chance of people not noticing that you don’t eat or drink. Too bad. Just accept that people will know about it.Top
All I can talk about from my own history is relatively minor problems. I know there are people with no sight and others who have severe problems with vision. I have been lucky in that respect, in that I have double vision and a bit of visual uncertainty but that’s all. All I can say is that the opticians are able to do wonders for people who have sight that is somehow defective in terms of focus and longer term vision. There are, however three small points I want to make.
7.1 The first is to use, and make sure your doctors use, the services of a really good ophthalmic surgeon as soon as you can after the accident. It made me sad when I met someone who had had their accident more than 12 years ago and had had double vision for all but a year of that time because he had never been sent to an optician who could deal with the problem. The effect is instantaneous and life-changing.
7.2 The second is the problem you have if you lose your glasses. All of a sudden the world becomes almost impossible to do anything in. I have been trying to sail again but I suppose it’s the same with anybody who gets themselves into riskier environments. Strap the glasses on. I know glasses’ straps are inconvenient and not very comfortable, but try losing your glasses overboard and you’re back to double vision, and then see how you get on! I know, I’ve done it! Small thing, but it can make all the difference to your confidence.
7.3 The third thing is that you are no different from a lot of people who have problems with their vision, usually short sight, so you will not be treated as special.Top
If you have a hearing problem you’ll know how incapacitating it is. Communication becomes difficult, exchanging little bits of information with your spouse becomes hard, you have problems in the theatre and the cinema, conversation with more than one person becomes almost impossible, and so on.
8.1 If you have a hearing problem you will, I hope, have a hearing aid. I would only say two things. The first is wear it. I know that the noise level at get-togethers becomes unbearable and that there is a moment when you are tired of the background noise and everybody’s chatter and what you really want is a bit of peace and quiet. This is the moment when you switch yourself off – not just the aid. Other people can’t communicate with you, and if you do it too often they’ll begin to brand you as absent. “Ah yes, that’s so and so. Pity about his hearing. Can’t get though to him at all. Quite given up trying”. And that is really what they will do.
8.2 The second thing is obvious. Always keep a packet of batteries with you. The ones in the machine always go on the blink when you’re not expecting it.
8.3 I want to mention one thing I have found that makes you seem more deaf than you really are. You may have an important sound in your life. I have my feeder at night. The point is that when I wake up – be it in the morning or at night – I can’t hear the machine. To the extent that I wonder if it’s packed up. I move my face until it’s almost touching the thing but there’s not a sound. Now, if I deliberately listen up and down the hearing range I can always find something very small that I can hear. If I hang on to it, it slowly, over a period of about a minute or so, becomes louder, until I can lie down again and hear the sound quite normally - to the extent that it keeps me awake! It’s as if my hearing is somehow dependent on my brain. You may have other sounds that you need to hear, like a baby crying.
8.4 The last thing, and I’m sorry if this is getting repetitive, is that lots of people wear hearing aids, and no-one treats them any differently.Top
I have already talked about the problems of finding words and getting confused. It is worth looking at the speaking process because many people, like me, have a problem with their voices.
9.1 Assuming that you can speak, you may have a bit of a problem with your voice. The tone may be unusual or you may have a hoarse note in it or you may have too much saliva to get your words out. The first thing is to make sure that you don’t have anything reparable wrong with it, like a cord that doesn’t work, for example. If the voice problem persists, go and see your GP and suggest you are referred to the ENT surgeon. The other possibility is the see the voice therapist, who may be able to help. A hoarse voice is liveable with, but one that is too quiet may be a considerable handicap – you can’t be heard against a background noise, you have limited capacity for public speaking, and so on.
9.2 If your voice is very quiet you may not be listened to. You may need to have someone to break in and give you space to say what you want to say. It is harder on your own, but make friends with your neighbour.
9.3 The point is, if you have voice problems that really affect your life, go and see someone. There’s nothing like being inaudible to get yourself ignored. Having been told what you need to do in terms of exercise and practice, do it, however boring it is. Even if they don’t seem to produce results, they do. And keep going with the exercises until you are happy with the voice.Top
10.1 If you need a tracheostomy, you will have some time when you cannot speak at all effectively. If your voice box is intact you will be able to cover the tracheostomy with your finger and speak after a fashion. It won’t be very loud and it will be punctuated with spaces where you wouldn’t normally put them. It’s fine for families, but more difficult in company outside. If you have to have it for a long time you’ll get better at speaking despite it.
10.2 The most common problem is that it gets blocked with excretions. What needs saying, perhaps, is to clean it straight away. Don’t wait, it will only get worse.
Getting your voice back is a real pleasure. I still remember speaking on the operating table the day they gave me my voice back!Top
11.1 This is a most alarming condition, that I hope I don’t get again. What it consists of is that the larynx – the voice box – goes into spasm. Your breathing tube shuts down completely and you can’t breathe in or out. In quite a lot of cases the person becomes unconscious. As soon as you are unconscious the larynx relaxes and the attack is over. The person wakes up in a few seconds. If you don’t become unconscious the attack will last perhaps half a minute and then slowly ease off. If you can breathe slowly and steadily at this stage it may be easier. It may come back at some time, and it is not that uncommon in people who have had tracheostomies for a long time.
11.2 What to do about it? Well, there’s no way to prevent it, but breathing relaxation, which you’ve probably learned from your voice therapist, may help. No-one ever died of it, so cheer up!Top
12. Hidden disabilities
Many of us have injuries which no-one can see, but which do cause us problems. If you have mobility difficulties or severe visual troubles, for example, it’s very obvious to all concerned, and they will react accordingly. If you have mental problems and no troubles with getting about, or if you have injuries which are to do with other things, like difficulty in eating and drinking, lack of balance or occasional fits, it is likely that nobody will notice, and they will expect you to behave like everyone else, and you don’t even get the chance of giving them an outline explanation.
12.1 What to do about it? There’s no obvious answer. It will help if the people you see most often do know about your situation, so tell them in as much detail as you think they can absorb, but don’t expect them to really understand. No matter how good you are at explaining things they will almost certainly not really follow you. After all, they have never been through this themselves. The chances are that they will slowly spread the news until most people know, at least in outline, what you can’t do and what happens to you.
12.2 Learn to live with the quizzical looks that you may get to start with, and have in your head a very short explanation, which you give as information rather than the start of a conversation. Keep it as matter of fact as you can, almost with a shrug, as if they all really know about it but perhaps they have forgotten!
12.3 Many of us have the problem of knowing that something is different and not quite right even when everything seems to outsiders to the problem to have got better as much as it’s going to. It’s a matter of not being able to forget what you used to be able to do, and the problem is that nobody else knows about this. They expect you to behave normally and they don’t understand why you stay a bit remote and a bit sad. I hope we will eventually get used to this and get better, but it may be what we are left with.Top
It is worth mentioning children if only because the way they behave to us and we to them can be very important sometimes. I think it is very important to realise that the effect of your accident is certainly as important to them as it is to the adults around them, even if it is rather different.
I would like to talk, if I may, specifically about my own experience with children, because I think it may cover the range that you experience. I have added to each some rather more general points that you may find helpful.
13.1 The first features are typified by my oldest granddaughter. She is a child with whom I had a close friendship before the accident, which happened when she was about seven. When I was in hospital she wanted to come and see me. She saw me unconscious and restless for several weeks, including one episode when I seemed to be smiling at her, and then she began to cry a lot, to stay awake at night and to be awkward to handle. Her mother realised that there was a connection between her behaviour and my condition and she stopped bringing her daughter to see me.
What has been extraordinary has been that although I took a long time, many months, to get back towards normal behaviour at home, she has stayed very fond of me, and has shown her attachment – without saying anything to me about it - by speaking loudly and slowly and trying - unnecessarily – not to get me too tired. Alright, she would do the same for an elderly relative, but her attitude is quite sincere. The lesson, I think, is that although older children in this situation may be deeply affected by your condition, they are likely to be capable of almost adult behaviour once they are over the initial shock. What you perhaps need to do is to be as kind and attentive to them as you can. Remember, they have treated you as special, so give some of that back.
13.1a Age is enormously important. The older children who knew you before already have certain criteria, may actually be remarkably sensible and are probably best treated with what you are, not with what they might want. Be sensitive to their feelings and remember they may have been through some level of trauma.
Older children who did not know you before are likely to take you at face value, but may also show curiosity about you. Be prepared to give them a much-diluted version of why you are the way you are. Otherwise, trust their ability to deal with difference.
13.2 The second is my second granddaughter. She was less than one when the accident happened. We had become quite close in the way that one does with small children. She laughed and played and we got on very well. The accident happened and she didn’t see me for five months. When I came home I was not really capable of much contact or friendliness. I couldn’t, at that time, see very well, I was rather deaf, I looked pale and somewhat different, and I was not speaking well. In fact I was not in a position to act in the way I had before.
Her response was to avoid me. She would touch me, but her contact with me was always with some uncertainty. She withdrew if she could. But as time went on, she got used to me, and in a way I just became the granddad who didn’t speak very well and tended to go to sleep. And in time we re-established a relationship, and now although she is perhaps sometimes a little wary of me, we get on very well, and she certainly has no objection to being left with me.
I think the lesson I have learned is really one of time. I can’t change very much, but they can. Give them time and try to be as constant as you can be.
13.2a Younger children who knew you before the accident don’t really understand the situation and are confused by the change. In a way they want to get back to the friendship they had, but they don’t know how to do it. If you don’t give them anything that frightens them, they will in time come round, even if they remain a little guarded for quite a long time.
Younger children who didn’t know you before are likely to be a little wary of you if you have to behave very differently from their parents, but if they get to know you they may be quite open with their questions. Don’t let yourself or anyone else put them off this. They have a right to know, but they also need gentleness.
13.3 The last example is my third granddaughter. She was born after the accident, when I had already been home for more than two years. So what she has grown with knowing is me as I am now. And really she doesn’t seem to see any difference between me and everyone else. Perhaps the lesson to be learned is that children of this age are endlessly flexible and accepting, if you give them the chance and don’t spend too long telling them how you used to be different, and how you mustn’t be tired out.
13.3a Very young children who see you as you are are really not bothered. They will take what you can give and their relationship will be based on the limits of your interplay with them. Because They simply see you as another adult, they can be exhausting in a remarkably short time!
These are thoughts about my own experience, and I have no doubt that your experience is different, but I think there are general issues that are worth airing for this most important group of people.Top
14. Caring for Carers
Why is this section at the end? I suppose because without them not much would have got done. This is particularly for those people who are looked after by spouses or family.
Think about it. It’s not too easy when the person you love suddenly becomes someone else. I know that character change doesn’t happen to everyone, but few of us are the same as we were before for a very long time – if ever. All the old intimacies of speech and action are thrown into doubt. The carer loved a person that has gone, not this one necessarily. It’s not surprising that so many marriages with a member who has had head injury in an accident break up.
And the person being cared for doesn’t seem to have as much time to spend with and for their carer as they did. They have so many things to do that the carer tends to get left out. Or perhaps they really have become self-centred, because that’s where all of their today’s problems come from.
And the carer used to have a life of their own, with things to do and places and friends to visit, and time to do things. And all of a sudden all that has to be changed. With no warning. It’s a really life-changing experience.
We don’t say thank you very often, perhaps because we assume that someone will somehow be there because we are so important.
I’m speaking from the person-being-cared-for’s perspective. What I see may be only the surface of what is being felt, but there are times when we think we deserve a carer. We go through a lot, but so do carers.Top
As you can see, I haven’t covered everything. What really matters is that you will get better than you are. Maybe you’ll never be normal again, and maybe you won’t work, but life goes on and it’s up to you to make it as good as it can be. It won’t happen on its own.