A practical self-help manual
for stroke sufferers
and those who are caring for them
Robert M. Youngson
2 TIAs, thrombosis and haemorrhage
3 The effects of stroke
4 Learning to walk again
5 Preventing a second stroke
6 Psychology and stroke
7 Problems of communication
8 Stroke and the sex life
9 Technology can help
10 Other people have rights, too
10 Sources of help
12 Coming to terms with permanent disability
Suffering, and surviving, a stroke is one of the most frightening and distressing things that can happen to anyone. Often without any warning, normal life is torn apart by the sudden loss of basic bodily or mental function movement, speech, understanding, sensation or vision. In the most severe strokes the victim is mercifully spared this distress and knows little of what has happened. Consciousness and awareness are deeply impaired and only the onlooker is distressed.
But to the sufferer with less severe brain damage, the physical effects are likely to have horrifying implications for his future life. The victim, if a man, may see his career shattered, his earning power drastically cut, his ambition frustrated, or his hopes for an active and rewarding retirement destroyed. There is a dreadful sense of helplessness, and of loss of control over his own destiny, and the effect on morale is devastating. For the relatives, too, and especially for the person left mainly in charge, there is bewilderment and uncertainty. The thing that has happened is often beyond comprehension, and the possibility of actually being able to do anything useful seems remote. Again, there is a frightening sense of helplessness.
But in neither case is this feeling wholly justified. Knowledge and understanding can, to a surprising extent, dispel fear. And, with good advice and sound information much may be salvaged from what may seem to be the wreckage of a life by doing what is possible to take control of the situation.
Much of the book is addressed directly to the carer often the wife or husband of the person who has had the stroke but, for those sufferers from stroke illness able to read and understand it, there is also a great deal in it, touching on every important aspect of the condition, which is of vital concern if the fullest possible degree of recovery is to be achieved and further trouble prevented. For, in stroke illness, perhaps more than in any other serious condition, the degree of recovery depends to a remarkable extent on the motivation, determination and hope of the sufferer.
It is the central purpose of this book to provide these essential ingredients.
Robert M. Youngson
Just reading this chapter can save your life. Not many people are aware that, in a high proportion of cases, strokes are preceded by very definite and positive warnings. If these are known about and acted on, strokes can be prevented. Here s a typical case:
Joe Grouse and his TIA
Grouse was a forty-seven year old systems analyst working for a software house specialising in producing computer systems for hospital patient administration. He was good at his job, which involved making a detailed analysis of the requirements of hospitals using large computers, and progressively up-dating the systems. He spent a lot of time talking to hospital staff and studying their requirements.
One day when, by pure coincidence, he happened to be talking to a Consultant Physician about extending the disease indexing facility, he became aware that his thoughts had become confused and that he had lost the thread of what he was saying. At the same time a most extraordinary thing happened to his vision the right half of everything he looked at seemed to have disappeared. Then he noticed that his right arm seemed to have lost almost all its power. Embarrassed and alarmed, and anxious to give himself time to think, he managed to fumble a cigarette out of its packet, using his left hand, lit it and took a deep drag.
The consultant was looking at him curiously. Are you all right? he asked.
Half which... sorry machine code... Said Grouse. He felt for a chair and sat down suddenly. With a trembling hand, he put the cigarette to his mouth and pulled the smoke down into his lungs. For a moment he wasn t sure whether he was going mad or was about to die. Then he noticed that his vision to the right was beginning to come back again and with a sense of unutterable relief he realised that his thoughts were becoming ordered once more. Almost afraid to try, he began to speak.
I m... sorry, he said slowly, I don t know what came over me. He held up his right hand and flexed his fingers. Then he covered one eye at a time and looked around.
The consultant held out both his hands. Grab my fingers, he said, Grip as hard as you can.
Joe looked surprised but did as he was asked.
Checking your muscle power, explained the consultant, Seeing if the strength is the same in both hands.
And is it?
Just about. Maybe a little weaker on the right.
He unhooked the stethoscope from his neck, put the ear-pieces in his ears, and, to Grouse s surprise, leaned forward and pressed the bell of the instrument firmly to the right side of his neck.
The consultant listened to the left side of Joe s neck. After a moment he sat back. How are you feeling, now? he asked.
Scared... but better. How did you know my arm...?
Your speech was confused. That s called aphasia. And I noticed that you were checking the vision in both eyes
So? What does that mean? Joe looked around but there were no ash trays.
You ve had a transient ischaemic attack a TIA and you re going to need a full work-up.
Is it serious a TIA?
Not in itself. But it s a warning that you ignore at your peril.
Of a stroke.
My God! D you mean that? Grouse opened his packet with trembling fingers and took out another cigarette.
Certainly. Actually, you re quite lucky. Lots of people have a stroke without anything they can recognise as a warning at all. There nearly always is warning, but not usually as dramatic as that. Do you have to smoke that cigarette?
I need it, said Joe, You ve scared the daylights out of me.
You need it the way you need a large dose of arsenic...
Joe swallowed and put the cigarette back in the packet. I know what transient means, he said hoarsely, What s ischaemic ?
Insufficiency of blood to any part of the body. In this case, a part of the brain.
Your body tissues need oxygen and glucose if they re to work. The main function of the blood circulation is to transport these two vital supplies to all parts. The sugar is the fuel and the oxygen is needed to oxidise it so that energy can be released. The blood picks up oxygen from the lungs and sugar from the gut or liver and carries them to the tissues. The brain is acutely sensitive to oxygen and sugar lack and any reduction in the blood supply is a serious matter
Well, how can that happen?
Various ways and we ll be checking, in your case, to find out the actual cause whether narrowing of blood vessels, thrombosis, embolus or whatever.
Hang on! You can t leave it at that! Can t you tell me more about it?
The consultant glanced at his watch. Normally I wouldn t have time, he said, but you ve caught me on my admin. afternoon.
OK, said the physician. Your brain is your most important organ. In a sense the whole of the rest of your body is a kind of brain-support factory. Your heart, on the other hand, is a pump with valves to keep the blood going round, and, in particular, to maintain the supply of blood to your brain. Cut off the supply of blood to the brain for more than about a few minutes and irreparable brain damage occurs. Cut off the supply for more than eight minutes and death is inevitable.
Yes, I knew about that. But why?
Nerve tissue has such a high energy requirement that it actually dies if oxygen and sugar are not constantly available.
So nerve tissue is functioning all the time?
Yes, and if it were to stop, you would, too very quickly. The blood is carried to your brain by four large arteries that run up your neck. These arteries, the carotid arteries and the vertebrals, must provide the large requirements of nutrition to the brain and if they are diseased and narrowed you could be in trouble.
So you think there is something wrong with my arteries?
Almost certainly a very common disease called atherosclerosis. This causes narrowing. That s why I listened with the stethoscope to see if there was a whooshing noise as the blood went through a narrowed vessel
And was there?
A bit, I m afraid. But that s not conclusive. There are other causes.
The thing about atherosclerosis is that it lays down cholesterol and other material in the inner lining of the arteries so that they not only become narrowed but the disease makes it much more likely that blood will clot in the artery, blocking it off altogether. This is what happens in the heart arteries the coronary arteries during a heart attack.
So you think my carotid arteries or the other ones
Right are going to block off?
Very unlikely. What is much commoner in the carotids is that little bits of clot or cholesterol crystals come loose and may be carried away in the bloodstream. This is called an embolus, and it is usually emboli that cause TIAs.
But what if one of my carotid arteries did block off completely? Presumably that would be pretty serious?
Well yes, but the system is very well designed to minimize the risk. The four neck arteries join up together to form a circle of arteries surrounding the stem of the brain, so that branches coming from this circle receive blood from all four sources.
You mean, one carotid could be blocked and the brain could still get enough blood?
That s right assuming that one carotid and the two vertebrals were healthy and capable of carrying a full blood-flow. Unfortunately, in people whose atherosclerosis is advanced enough to show itself, all the arteries are likely to be affected to a greater or lesser degree.
I see. So you re saying that my carotids are pretty narrow?
I don t really know yet. We ll be doing an arteriogram to find out.
Is that some kind of X-ray?
Yes. It s a way of showing up the state of the insides of arteries. It will tell us whether your trouble is in the carotids.
Why doesn t blood clot in normal arteries? It clots as soon as it s spilt, doesn t it?
Yes. But then it comes in contact with various foreign materials including tissue fluid from the cut edges of the bleeding vessel and that starts a reaction that ends in the formation of a clot. The same applies to injury, from any cause, to the artery lining. For instance, when someone has had a small coronary thrombosis, the inner lining of the heart itself may be damaged to the point where blood starts to clot there. This is a very common source of emboli and about one case of stroke in five is caused by emboli from the inside of the heart following coronary thrombosis.
Now you have me completely confused, said Joe, Are you saying that these people have a coronary and a stroke?
Yes. About ten per cent of strokes are caused that way. Just remember that coronary thrombosis is a clot in the arteries supplying the heart muscle. In your case we are primarily concerned with the arteries supplying your brain.
And in my case you think I ve had a clot come away from somewhere and go up to my brain?
It may have been a clot, or it may have been some fatty material from a patch of atherosclerosis maybe even some crystals of pure cholesterol. Whatever it was, it lodged in a smallish vessel in the left side of your brain, probably a branch of the middle cerebral artery
Why the left side? How do you know that?
Two reasons. It affected your speech and I see that you re right handed, so the left hemisphere is the speech one in your case. Also, the slight weakness was on your right side, and the left side of the brain controls the right side of the body.
I see. So what happened to the clot or embolus, or whatever? Has it gone away?
No. I m afraid not.
Well, how is it that I recovered? Obviously, the part of the brain affected wasn t destroyed
Yes. There was temporary loss of function, but it was restored.
The area of brain supplied by the blocked artery is now being supplied by other, smaller, adjacent arteries that have opened up to make up the supply. This is called establishment of a collateral circulation.
I don t like the sound of that, said Joe, Presumably that part of the brain now has less reserve.
Yes. If you were unlucky enough to have another fairly large embolus in the same area, it might go badly with you. A transient ischaemic attack is one in which the loss of neurological function begins suddenly, persists for less than 24 hours usually only a few minutes and clears without leaving any obvious disability. But I have to say that in about 15 per cent of people who have had a TIA there is a demonstrable area of permanent brain damage very small, of course.
How do you mean demonstrable?
It can be seen on a CT or MRI scan as a patch of dead tissue.
Lots of people have large numbers of TIAs with little or no apparent disability. It s entirely a matter of the size of the embolus. A large embolus will not produce a TIA. It will produce a stroke, with damage varying from minor to total.
Joe was looking even more worried. What s to stop this happening again? If my carotid arteries are both narrowed, presumably the vertebral arteries are also affected
Isn t that dangerous?
Well, it s not to be recommended. Severe carotid narrowing is a very common cause of strokes, even without emboli. Indeed, the majority of strokes occur simply from not enough blood getting to the brain.
So what happens next? asked Joe.
You need a full workup and I think it would be best if you came in for a few days so that this can be done properly and as quickly as possible. What do you say?
Right, I ll fix it at once. But there are two things you can do to help yourself.
What s that? I ll do anything
One is to stop smoking. Right now.
Joe looked stricken. But I don t see how that can
Listen, said the consultant, and listen hard. Smokers have much more atherosclerosis than non-smokers. This has been shown by thousands of post- mortem examinations. Smoking increases the heart rate and raises the blood pressure both factors associated with atherosclerosis. High blood pressure is one of the main risk factors for stroke. Smoking causes increased stickiness between certain cell fragments in the blood, called platelets. These are necessary for clotting and increased stickiness definitely increases the tendency. The carbon monoxide you inhale with the smoke cuts down the ability of your blood to carry oxygen to a significant degree. So, if you are in a border-line situation smoking could tip the balance. You could, quite literally, smoke yourself to death. Want to hear any more?
Joe Grouse was looking pale. No, he said, weakly, I ve got the message. What was the other thing I should do?
You can reduce the tendency to blood clotting by taking half an aspirin every day.
And that will help? Joe sounded incredulous.
Yes. Aspirin affects the platelet stickiness. It can even prevent any more TIAs.
Joe was admitted to hospital the same day, in a very thoughtful mood. His mind was whirling with the dire possibilities suggested by the consultant physician s bland account of the causes of stroke and he kept going through the list, wondering which would apply to him. Could he have had a small coronary and produced a blood clot inside his heart? He had been having occasional pain in the chest, but he had just put it down to indigestion or maybe the smoker s cough that he had had for years. Could he have some problem with his heart valves? That seemed unlikely but he would almost rather that that was the case then that he had severe narrowing of his carotid arteries. He didn t really want to think about his carotid arteries. The idea of his brain being gradually and progressively damaged didn t appeal to him at all.
The consultant s senior registrar was more relaxed in manner than his boss and Joe felt more at ease with him.
I m dying for a fag, said Joe, Look at the way my hands are shaking.
It could just be that unless you get wise. A fag might be what you literally are dying for. And you wouldn t be the first. I ve seen some horrible results from smoking. I tell you, I hate cigarettes!
Joe decided to change the subject. What s on the agenda? he asked, trying to sound cheerful.
Well, we re especially interested in the condition of your arteries and we ll be checking your heart and blood pressure. You ll have an electrocardiogram. Of course, we ll be doing a full blood check and that will include a check of the thickness of the blood as well as fasting cholesterol and triglyceride levels. And we ll check for diabetes. Probably most important of all, you ll be having angiography of the arteries supplying your brain
The carotids and the vertebrals.
That s right. You ve been lucky enough to have a TIA and early investigation, so the risks, for you, are not all that great...
Are you going to tell me just how much danger I m in? asked Joe quietly.
Do you really want to know?
Yes, I do.
Well, the figures show that after the first TIA there is about one chance in 20 of a stroke occurring in the first year. I m afraid that for most patients this risk continues that is, about five per cent of them get a stroke each year.
Oh well, said Joe, Now I know. What about the risk of death? I suppose that s much less?
The doctor hesitated. Well no, he said, It s about the same. Five per cent per year.
But that doesn t make sense, said Joe, unless every stroke is fatal.
The explanation is that more people in this group die from heart attacks coronary thrombosis than from stroke.
Really! Isn t that rather strange?
No. Atherosclerosis causes many more deaths from coronaries than
from strokes. The coronary arteries are terribly susceptible to blockage from thrombosis and if a person has had TIAs he is likely to have generalised atherosclerosis.
Joe rubbed his chest. I m more likely to get a coronary than a stroke, is that right?
Yes. Especially if you go on smoking.
The medical workup produced two important findings angiography showed that Joe s left carotid artery was almost occluded by a large atherosclerotic plug, and repeated measurements showed that his blood pressure was much higher than it should have been.
Does the pressure ever burst the arteries? asked Joe.
Sure. Sometimes, if the smaller arteries are very hardened one of them may be unable to resist the pressure and bursts. The bleeding that results may not matter very much in most parts of the body, but, inside the skull, and especially inside the brain, the damage caused may be devastating. Cerebral haemorrhage causes the most serious kinds of strokes and many patients who get it die from the first episode.
Charming! said Joe.
Fortunately, most strokes are not caused in this way and, as I ve said, by finding out that you have high blood pressure, and getting it treated, you can greatly reduce the risk of this happening. The worst combination of all is high blood pressure and smoking. This carries a particularly high risk of developing stroke and coronary thrombosis.
About two weeks after entering hospital Joe was taken to theatre where a delicate operation was performed on his left carotid. The tests had shown that the other carotid and the two vertebrals were much less affected, so the surgeon felt that it would be safe to clamp off the affected artery and rely on the blood getting around the linking channels from the other vessels. This proved to be so. After the artery had been clamped above and below the position of the obstruction, it was carefully opened, by a longitudinal cut, and the atherosclerotic plaque shelled out. When this had been done, the artery was closed again with ultra-fine silk stitches and the clamps removed.
Joe never looked back. His recovery was uneventful, and angiography, done afterwards showed that the blood flow in the artery which had been operated upon was now entirely normal.
You ve come through a pretty major operation with flying colours, said the vascular surgeon, Do you propose to continue smoking, overeating and taking no exercise? Because, if you do, I ll just have been wasting my time and you ll be as bad as ever in a couple of years.
Do you think I m crazy? asked Joe. This is day one of my new life.
No smoking. Low fat diet. Weight control. Plenty of exercise.
The surgeon smiled. Well, we ll see, he said, Maybe you ve got more sense that all the others.
More about TIAs
The more know about transient ischaemic attacks the better. TIAs may occur only once or twice in a year, or may occur many times a day, but, unless the cause is removed, they are likely to recur. A person having TIAs has a fifty per cent chance of having a full stroke within five years of the start of the symptom. This is a rather horrifying fact and indicates how important it is to recognise TIAs and seek early treatment.
Remember that a TIA is a brief disturbance of any of the many functions of the brain. So, a TIA may cause brief loss of half of the field of vision in both eyes (involvement of the connections to the visual part of the brain, at the back), dizziness or faintness, vertigo, confusion of thought, loss of speech or of the understanding of the meaning of words or of the names of objects, weakness or numbness of one side of the body or even temporary loss of consciousness. Vision can be disturbed in another way. Tiny emboli can get into an eye, by way of the blood supply, and can cause
temporary loss of function of part of the retina. In this case, of course, only one eye will be affected. This is quite a common form of TIA commoner than visual field loss.
This list is not complete, but covers the great majority of effects. Any transient symptom which could be attributed to disturbance of brain action should be considered as a TIA until proved otherwise by medical examination.
Some of these symptoms especially faintness and vertigo and occasional forgetfulness are caused much more commonly by innocent causes than by TIAs, and you must view the matter intelligently. Remember also, that migraine often produces symptoms which are identical to those of a TIA. This is because migraine involves a spasm of the brain blood vessels, lasting for about twenty minutes, and this can cause all sorts of effects which are nearly always quite harmless. In fact, by providing a sort of trailer of what may happen in a stroke, migraine can be a most educative, if sometimes alarming, experience.
TIAs become commoner with advancing age about one person in five hundred over the age of sixty-five has them and the younger the age at which they occur, the more serious the significance. TIAs occurring below the age of sixty are more likely to be followed by a serious stroke than those occurring in older people. Millions of people have had TIAs and have got away with it. But to ignore them is the height of foolishness. To be forewarned is to be forearmed.
Mrs Bliss was not so lucky
People with threatened stroke may present to specialists in various fields of medicine. Most are seen by GPs or by physicians, but referral to neurologists, neuro-surgeons and to eye specialists is common. This is how I came to meet Mrs Bliss. She was a delightful person, well-preserved, in her late fifties, lively and attractive and able to express herself clearly. She said she had only come because her GP had insisted.
I asked her to sit down and tell me what had been worrying her. I didn t believe, at first, that my headaches had anything to do with my eyes, but in the past two or three weeks my vision has been quite severely blurred and I m beginning to wonder.
Tell me about the headaches. I said.
They re quite different from ordinary headaches. For one thing I get them while I m sleeping and they actually wake me up in the mornings.
Well, yes. Recently anyhow.
Where is the pain?
Everywhere. All over my head.
How would you describe it? What s it like?
It s a steady, pounding headache and my head feels as if it s going to burst.
Pounding? Like a pulse?
Yes. I wondered about that, so I felt my pulse and the headache beats at the same rate.
Are there any other symptoms?
Well, I ve noticed that I get breathless much more easily than I used to and I often feel terribly giddy.
Are these new symptoms?
Oh yes. Only for the last month or so.
And you never had them before?
Do you have to walk more slowly than you used to?
Yes, she said, then smiled, But I just put that down to age.
Tell me about the blurring of vision.
Well, I naturally assumed that it was my glasses needing changing, but I was a bit upset, because I ve never needed glasses for distance only for reading.
And did you get new glasses?
Yes. But they didn t make a bit of difference. Very expensive they were, too.
Is the blurring all over your field of vision?
No. I can see all right straight ahead, but I don t seem to see nearly so well to the left side -
To the left side with each eye separately?
No. It s really my left eye that s affected. The right one seems quite normal.
When I tested her vision I found that, on the left side it was only about one quarter of normal (6/18) and, on the right, about half normal (6/12). Then I had a look inside her eyes with an ophthalmoscope and, at once, the cause of her trouble was clear. The optic nerve heads which are clearly visible at the back of the inside of the eyes were swollen and surrounded by flame-shaped patches of free blood. Similar haemorrhages were scattered about on both her retinas and, in addition, I saw the ominous cotton-wool spots, indicating that, already, parts of the retinas had been destroyed. The retinal blood vessels, emerging from the optic nerve, in each eye, were irregular and twisted. The whole picture was unmistakeable. Mrs Bliss was suffering from severe high blood pressure (hypertension) and was at considerable risk from stroke.
Roll up your sleeve, please, I said neutrally, reaching for the sphygmomanometer.
As I wrapped the cuff carefully round her upper arm, she said, I wondered if it might be blood pressure...
Mrs Bliss s running pressure, between heart beats (diastolic pressure) was 116 millimeters of mercury, and with each beat of her heart the pressure (systolic pressure) shot up to an alarming 210.
Yes, I said, I m afraid that s the cause of the trouble.
Is it bad?
Pretty bad. I ll want you into hospital right away.
To tell you the truth, she said, I m quite relieved. I ve been terribly worried. I m so glad something is being done.
Regrettably, we didn t have time to do anything. While I was writing up her admission notes, Mrs Bliss suffered a massive stroke, with complete paralysis down the right side of her body and deep coma. She was taken at once to the intensive care ward, but the coma was rapidly deepening and, as she was being lifted on to the bed, she died.
When I heard the news, I thought, bitterly, Why didn t she come earlier? She could easily have been saved, if she had come sooner.
But Mrs Bliss was the sort of person who didn t like to trouble anyone, and, right to the end, she was very little trouble.
TIAs, Thrombosis and Haemorrhage
The causes of transient ischaemia
Joe was lucky. Some people, like Mrs Bliss, don t even have transient ischaemic attacks (TIAs) to warn them of a stroke. As suggested, however, there will almost always be some indication that the state of health leaves something to be desired, but many people ignore symptoms and just hope for the best. Some may even fail to notice quite severe symptoms and may be struck down with paralysis and other damage as the first indication that anything is wrong. Remember Mrs Bliss.
Ideally, of course, we should all have regular medical check-ups including careful history-taking and full examination to bring out any such symptoms. Regular checks of the blood-pressure, heart, lungs, and laboratory tests of the blood and urine are all of immense value in protecting against catastrophe.
Fortunately, TIAs are common enough to provide us with some warning and it is very important to recognise them and appreciate their significance. TIAs are caused by temporary shut-down in the blood supply to part of the brain and this may be due to nothing more than a general narrowing of all the arteries, so that the supply is precarious and cannot meet additional demands. Obviously, some arteries will tend to be more narrowed than others, so certain parts of the brain will be at greater risk. But most TIAs are the result of small particles of material in the blood, which ought not to be there at all. These particles are called emboli (each one is an embolus) and the more known about them the better.
Old Mrs Molyneux had known for ages that there was something wrong with her eyes. Most of the time she could see perfectly well and she was normally delighted with the quality of her colour TV. But every now and then the vision of one eye would fog over usually for a few seconds at a time, but sometimes for several minutes and during these periods she would be convinced that she was going blind. The attacks would occur once or twice a day for about ten days and would then go away altogether for two or three months only to come back again. Each time she decided to go to her doctor the attacks would stop and she would let it go, hoping that the trouble would not return.
But her eyes were not the only thing worrying Mrs Molyneux. There were the dizzy spells often occurring when her eyes were worst affected so severe that she had to hold on tight to her chair. Sometimes she had short periods of double vision and these worried her terribly. It was unfortunate that she didn t consult her doctor, for Mrs Molneux was very much at risk and there was a simple explanation of her symptoms. Like many people at risk of stroke, Mrs Molyneux was producing in her bloodstream showers of small free emboli and these were being carried up the carotid and vertebral arteries to her brain. Regrettably, she took no action, but just continued to hope for the best and, in the end, she suffered a major stroke.
Small emboli consist of different kinds of material and are not actual blood clots like larger emboli. Many of them especially those that form in the heart are made up of fibrin tangled up with tiny blood cells called platelets. Platelets and fibrin are essential for blood clotting and it is this combination which forms spontaneously on the inner surface of arteries, or on the inner lining of the heart chambers, if either have been damaged. In both cases, atherosclerosis is the commonest occurrence either directly, in the case of the arteries, or indirectly by way of coronary thrombosis in the case of the heart lining.
Emboli can also be formed from the fatty plaques of atherosclerosis on the inside of the arteries. Quite often, these lumps of porridge break up and release debris into the blood. Emboli of this type come only from the arteries, not from the heart. Although they are usually small and cause TIAs, they can be so large that they block major arteries and cause complete strokes or even death. It is quite common for pathologists to find large arteries in the brain clogged off with this material.
The third type of emboli consist of pure crystals of cholesterol. These are very tiny and are a common cause of TIAs. Happily, pure cholesterol emboli, unless present in enormous numbers, are unlikely to do serious harm. But, as we shall see, they do cause observable effects which are a clear warning and which must never be ignored.
TIAs and vision
One common indication of transient ischaemia is sudden disturbance of vision. This can occur in various ways, all of which we must be able to recognise. Knowing what this kind of symptom means can prompt us to seek early treatment and so can be life-saving. How does this symptom come about?
Like the brain, the eyes are very sensitive to lack of oxygen. On the inside of the back of each eyeball is a complex, transparent membrane called the retina. The lens system of the eye casts a sharp image on the retina which, in turn, converts this, much in the way a TV camera does, into electrical nerve impulses which are carried back to the brain along the optic nerves. Any interference with the full supply of blood to the retina will at once cause a loss of vision and this will vary in extent depending on how much of the retina is affected.
If, for instance, an embolus found its way from the carotid to the artery which supplies the eye and the surrounding structures, the embolus might land in one of the external eye muscles and no ill effects would result. But if, by chance, it went into the branch of the artery which supplies the retina, and caused a temporary blockage of this branch or of one of its smaller sub-branches on the retina, it would be apparent at once that something had happened to the vision of that eye. If the blockage happened in the main trunk of the retinal artery, the whole of the field of vision would be affected. But if only a small sub-branch was blocked, only part of the field would be lost.
The effect, which may last from a few seconds to a minute or so,
is like a blind or veil being drawn down in front of the eye, blanking out the vision. There is no pain or discomfort, no watering, no headache. Simply a silent, partial or complete, loss of vision. Because the obstruction almost always breaks up and disperses, the blood is able to get through again and the function of the retina is restored. But if loss of function lasts for more than about an hour and this applies to any part of the nervous system some nerve tissue will inevitably have been destroyed. A permanent blockage of the central artery of the retina is a disaster, and inevitably means blindness in that eye.
Transient ischaemic attacks of this type usually indicate disease of the carotid artery. There is another type of TIA affecting vision which has a different significance. Although the optic nerves go from each eye to the brain they don t just run into the front of the brain but pass right through to the back, to the part where the blood supply comes mainly from the vertebral arteries. On their way back, the fibres in the optic nerves split so that each half of the brain becomes responsible for seeing only half of the complete field of vision. The left half of the brain sees the right-hand half of the field of each eye, and the right half sees the left half field. So, if the blood supply to one half of the back of the brain is interfered with, there will be partial loss of vision in both eyes. By covering each eye in turn, you would find that the outer half of the field of vision of one eye, and the inner half of the field of the other, were missing. If the field loss was of the left half of both eyes, then the right side of the brain would be affected. If the right half of the field of each eye was missing, this would indicate loss of function of the back of the left side of the brain.
Such an experience shows that the trouble is caused by a reduction in the blood supply of the vertebral arteries, rather than the carotid arteries. Remember that the vertebral arteries are so called because they run up actually within the bones of the neck part of the vertebral column. Some people can produce temporary loss of half the field of vision simply by turning their heads to one side. This is because, in so doing, vertebral arteries, already narrowed, are being compressed further so that the blood flow is reduced.
When the trouble is in the vertebral artery supply, visual loss is by far the most common symptom. This is because such a large proportion of the blood from the vertebral arteries is used to supply the visual part of the brain. Sometimes the interference with vertebral blood supply is so severe that both halves of the back of the brain are involved. In this case, of course, all vision will be temporarily affected. This will produce either a complete blackout of vision a very alarming experience or a veil over the vision, sometimes with islands of entirely normal vision within it.
When the carotid arteries are the main seat of the trouble, the commonest symptom is temporary weakness or loss of sensation of one side of the body. But visual disturbance in this case from emboli affecting the retina is still very common, perhaps second in frequency. The carotids supply mainly the middle and front part of each half of the brain, and it is these parts of the brain that are responsible
for movement, sensation and speech.
Can small emboli cause permanent effects?
Although emboli usually cause brief periods of functional loss this is not always so. Large emboli are always serious, sometimes fatal. The continuous production of small emboli is certain to have a cumulatively damaging effect and doctors recognise that this can cause a gradual deterioration of a patient s condition. With larger emboli, causing observable minor damage each time, a condition called stroke-in-evolution can occur. This distressing process of progressive disability is, however, more commonly caused by severe narrowing of the major vessels supplying the brain.
Sometimes a small embolus remaining intact in an important position may cause permanent damage. In one instance a senior Army officer complained of an annoying blind patch in the lower and outer part of the field of vision of his right eye. External examination of his eyes showed nothing wrong, but inspection of his retina with an ophthalmoscope showed a tiny, bright yellow flake lodged at the branch of one of the tiny retinal arteries. Beyond this point, the retina was paler than usual and it was clear that the cholesterol crystal had cut off the blood supply to a part of the retina and destroyed its function. A check with a stethoscope, over the lower ends of his carotid arteries, just above the collar bones, revealed a loud, harsh blowing sound with each heart-beat. Needless to say, this patient went immediately for full medical investigation.
Other early symptoms of stroke
There are more symptoms than might be imagined because any function of the brain may be affected if the blood supply is impaired. The most obvious effects are weakness of one half of the body, loss of sensation on one side, disturbances of speech and understanding, and visual upset. Also occurring less commonly, are dizziness (vertigo), nausea and vomiting, headache, loss of hearing, loss of memory, gradual changes of both personality and intellect, difficulty in swallowing, drowsiness, loss of consciousness and, occasionally, epileptic fits.
Obviously any or all of these symptoms may arise from causes unconnected with the development of stroke and some of them occur quite commonly from much less serious causes. But if these symptoms occur in association with TIAs it is probable that they are being caused by inadequate blood supply to the brain and it would be very foolish not to seek urgent medical attention.
Episodes in which a perfectly conscious person usually elderly suddenly falls to the ground for no apparent reason as known as drop attacks. The cause is uncertain and if they occur in isolation, without any other indication of threatened stroke, they are probably of no great consequence. But a person showing the signs of insufficiency in the vertebral artery supply loss of visual half fields, vertigo, double vision, etc will quite often also suffer drop attacks. In that case, these are almost certainly due to inadequate blood supply to the brain and should be taken as an additional warning. Drop attacks are mentioned here because many people with visual symptoms and vertigo do not suspect that they might be due to shortage of blood to the brain.
Migraine and stroke
Some of the effects of migraine can be very alarming, especially when they happen for the first time, as they can quite closely mimic the symptoms of stroke. Although migraine is almost always harmless, it temporarily affects the brain in a very similar way in that some of the branches of the carotid or vertebral arteries undergo a temporary constriction, or spasm, so that the blood flow through them is markedly reduced.
Following the narrowing stage, the blood vessels become enlarged and this causes stretching of the walls of the vessels a severely painful process. This, possibly together with muscle spasm, causes the headache. But it is the initial constriction which is important here. Many migraine sufferers can describe accurately what it is like to lose one half of the visual field, to suffer weakness down one side of the body, or to lose sensation in the hands or part of the face particularly around the mouth.
Fortunately, the very great majority of people with migraine can be assured that these symptoms will only last for about twenty minutes. This is because the arterial spasm operates in a fail-safe manner, cutting off blood to the muscles in the walls of the arteries so that eventually these muscles which are responsible for the spasm have to relax. Although it is very rare, permanence of these effects does sometimes occur. Certainly women taking the contraceptive pill who also suffer from migraine are probably at considerably more risk of this happening than others. This risk is further increased if the migraine is treated with the commonly used drug ergotamine. This drug, which acts strongly on the muscles in the blood vessel walls, helps to reduce the migraine by causing spasm of the vessels and this could, in certain circumstances, be dangerous.
The combination of ergotamine and the pill operated in the case of a highly athletic young woman a champion basketball player who suffered a migraine during a game and had to stop because of the loss of visual field. Unfortunately, this loss did not clear up as expected but became permanent. She was admitted to hospital and a CT scan (computer assisted tomography) showed that a large area of one half of the back part of her brain had been deprived of its blood supply long enough for permanent changes to occur. The affected part showed up as a lighter patch, indicating that the brain tissue was dead.
It should be emphasised that this is very rare and that of the millions of migraine sufferers in the world, only a very small number ever suffer permanent tissue damage. But if three separate causes of shut-down in the blood supply migraine, increased blood clotting tendency from oral contraceptives, and sustained spasm of the vessel wall muscles from ergot are operating, the risk is increased.
At one time actual bleeding within the skull (cerebral haemorrhage) was considered the main cause of stroke. However, only about fifteen per cent of all strokes are caused in this way. Bleeding may occur within the substance of the brain or from one of the arteries on the outer surface. There are two main causes. The first high blood pressure with atherosclerosis we are already familiar with. But the second, although quite common, is rather surprising and not very well known outside medical circles. It is illustrated by the harrowing story of Jennifer Page.
Jennifer s berry-like swelling (berry aneurysm)
Jennifer was fortunate in her GP, for although he had not at first suspected anything very serious and, indeed, had written me a letter asking for a routine appointment, he had second thoughts about the case that evening and telephoned me.
Sorry to be a nuisance, and call you at home, he said, but I m not too happy about a young woman I saw today.
What s the story?
Lovely young girl. Twenty seven. Secretary to an MP. Previously very healthy. Sudden onset of very severe headache three days ago. Says she s hardly ever had headache before.
Started at the front, then moved to the back. Really violent.
Yes, slight. But what s really worrying me is that she s developed a bit of double vision.
Any physical signs?
Well, I m not sure. It s hard to be certain, but I rather think her left pupil is larger than the right. And I had an impression that the left upper lid was drooping a little.
Listen, I said, We have an emergency on our hands. You must get that girl into hospital right away. Tonight.
What do you think it is? he asked.
Aneurysm on the Circle of Willis until proved otherwise.
Oh God! Of course! Will you be there?
I ll be there.
When Jennifer came in, her condition had already deteriorated. She was clearly distressed and in severe pain, her head held far back and her left eye closed. Normally, a detailed history is taken but, in this case, the features so obviously indicated serious disease of the nervous system that it was barely necessary. She sat down and, with one finger, I gently pulled up the drooping upper. The pupil was widely dilated and one could see only a thin rim of iris.
I know you re feeling terrible, but it s essential to examine you. I
said. Could you just keep your head still and follow my finger with your eyes?
As she did this, I watched her eyes carefully. When she looked to the left, her eyes moved normally, but when she tried to look to her right, her left eye did not move past the mid position. She was able to look down a little, but the upward movement was very limited.
I get terrible double vision when I look right, she gasped, Better to let my lid droop. Can t you do something for my headache?
It was obvious that she had a paralysis of the left oculomotor nerve the one responsible for inward and upward the movement of the eye and upward movement of the upper lid. The widened (dilated) pupil was also a sign of paralysis of this nerve. It was equally obvious that this was an urgent job for a neuro-surgeon.
Jennifer s neck rigidity increased rapidly and her head was soon forced backwards so that her chin pointed up. A sample of her cerebro-spinal fluid, taken by lumbar puncture between two of the bones low down in her spine, was coloured pink and a rapid analysis in the laboratory confirmed that there had indeed been bleeding
under one of the layers of membrane the arachnoid layer that surround the brain. She had what is called a sub-arachnoid haemorrhage.
The neuro-surgeon took one look at her and said, Better get on with angiography. We re in trouble.
Angiography used to involve passing a fine tube up the arm artery into the main arterial trunk of the body the aorta and injecting dye, opaque to X-rays, so that it passed up the four main arteries supplying the head. X-ray pictures then showed the exact shape of the columns of blood within the arteries. This method is still used widely but is being rapidly superceded by safer and better methods using computer imaging.
The neuro-surgeon snapped the X-ray film on to the illuminated viewing box, pointed to a large, round white blob, sticking out from one of the arteries, and said, There s your aneurysm. A large berry on the posterior communicating, or posterior cerebral artery, just by the junction with the basilar. Must be growing rapidly. And leaking, of course.
Presumably it s pressing on the trunk of the third nerve.
Right. And it s going to press on a lot more than just that if we don t get a move on.
My colleague was pointing out that Jennifer had a berry-like swelling on one of the arteries of the important circle of vessels underneath the brain, formed by the junction of the terminations of the two carotid and the two vertebral arteries. This swelling an aneurysm was the result of a basic weakness in the elastic tissue in the wall of the vessel so that gradually, under the influence of blood pressure, a sac-like
swelling had formed on the artery.
Aneurysms do arise from sites of pre-existing weakness, but are much commoner with high blood pressure. Trouble from them can occur at any age, but is commonest after fifty. Women are affected rather more than men. Apoplexy the dramatic episode in which, in a state of intense emotion such as rage or sexual excitement, a person is suddenly struck down unconscious, is usually due to the rupturing of an aneurysm which has been gradually enlarging and thinning on one of the brain arteries. Many of us, quite unwittingly, have such aneurysms but they do not all cause trouble.
A massive bleed from an aneurysm is likely to be fatal, as, under high arterial pressure, blood may be forced into the soft substance of the brain, causing massive destruction of vital nervous tissue. If the person survives, there is likely to be severe disability and the form this takes will depend on the part of the brain damaged and the extent of the destruction. Because the skull is unyielding, the release of blood causes a sharp rise in pressure within the cranium leading to a general compression of the brain which may be forced downwards so that the brain-stem, with its vital centres, is squashed into the large opening in the base of the skull. Compression of these centres which are responsible for respiration and heart-beat is a common cause of death.
The danger facing Jennifer was obvious. Her neck stiffness and head retraction were caused by irritation to the brain linings (meninges) by the leaking blood, and this was getting rapidly worse. The main danger was that there might be a sudden tearing of the wall of the aneurysm. Soon after the angiography Jennifer went into coma and the urgency became greater. Drugs were given to lower her blood pressure and she was also given an injection of an drug called aminocaproic acid which was reputed to encourage the laying down of fibrin in the aneurysm and so reduce the tendency to bleeding.
The neuro-surgeon did not have much expectation of success from this measure, and after an hour in which her condition continued to deteriorate, he said, I m afraid the only thing to do, at this stage, is to tie off her left carotid.
Risky, isn t it? I said.
Of course it s risky, but not so risky as leaving her. She s young. She ll have a good collateral circulation.
At operation, the left carotid artery was exposed in Jennifer s neck and followed up to where the internal branch came off. A sterile tape was put round this branch and it was brought gently into clearer view. Then a clamp was applied and very carefully and slowly tightened so as to cut off the left internal carotid supply as gradually as possible.
What are her chances? I asked him afterwards.
Tell you in the morning. he said.
Jennifer s aneurysm stopped bleeding and, equally gratifying, she soon recovered consciousness and showed little sign of brain malfunction. There was a slight, temporary weakness of the right side of her body and a short period in which her speech was confused, but these soon passed and three weeks after the tying off of the carotid it was considered safe to perform the more difficult operation of tying off the aneurysm itself so as to make it safe and relieve the pressure on the nerve to the eye muscles. This was accomplished and, although she did not recover full mobility of the eye, it was possible, later, to improve things further by squint surgery.
I asked the neuro-surgeon about the mortality rate of bleeding aneurysms.
Bloody awful. he said, About half of them die. So we were quite lucky with Jennifer.
Internal brain haemorrhage
Bleeding inside the substance of the brain is a common cause of stroke and is always associated with atherosclerosis and high blood pressure. Although the artery concerned is nearly always quite small, the result of the free squirting of blood within the brain is usually catastrophic. Stokes caused in this way usually occur when the person is awake. There is usually severe head pain and terrible dizziness and the full effects are apparent often within a few minutes at the most, within an hour or so.
Many patients lose consciousness and rapidly develop severe weakness or paralysis of the side of the body opposite the side of the bleed. But this does not necessarily occur. There is often vomiting and neck stiffness and, quite commonly, fits. Usually the eyes remain turned to the side away from the paralysis or there may be inability to turn the eyes in a particular direction, and one pupil, or both, may be widely enlarged (dilated). But bleeding may occur into half a dozen different sites within the brain and these will produce different effects, depending on the part damaged.
Cerebral haemorrhage has a death rate of from fifty to seventy five per cent. Many patients, like the unfortunate Mrs Bliss, die on the day of the bleed and the majority die within a month. Most of those who are in coma from the beginning never recover consciousness. But if a person does survive there is a very reasonable possibility of recovery. Much of the functional loss in the early stages is due, not to destruction of brain tissue, but to swelling and compression causing temporary loss of nerve conduction which is restored once the free blood has reabsorbed and the pressure on the nerve tracts is released. So the extent of the disability is always greatest at the beginning and some restoration of function usually occurs in those who survive.
It is encouraging that with proper treatment of the blood pressure, further bleeding can almost always be avoided. This is because of the small size of the vessels concerned in internal brain bleeding and the fact that such vessels can seal themselves off by the clotting of blood at the site of rupture.
High blood pressure
Apart from aneurysm, the principle cause of cerebral haemorrhage is high blood pressure (hypertension) and this is a major risk factor for stroke. Mrs Bliss had very obvious hypertension, causing quite severe symptoms, and if she had been less considerate of other people, she might have had something done about it in time. Most people with hypertension do not have symptoms, but the condition may still be severe enough to increase the risk substantially. About forty per cent of people with a moderate or severe rise in blood pressure may, if not treated, expect to die within five years. And many of these die of stroke.
The moral is clear. Life style should be adjusted to avoid hypertension, if at all possible. Regular blood pressure checks should be carried out and, if necessary, hypertension treated. But prevention is always better than cure, so how can we avoid this dangerous condition?
The first point concerns body weight. Obesity is so commonly associated with hypertension as to leave no doubt that it is to be avoided at all costs. Obese people always eat unwisely and excessively and their diet invariably contains a large proportion of saturated fats mainly animal fats which, are also definite factors in atherosclerosis. Blaming obesity on glands or finding other explanations, avoids facing up to the fact that too much eating is going on. Many people have the misfortune to be brought up with an overeating tendency and, for these, the battle is hard and never-ending and the adjustments very difficult. Such people may deserve sympathy but this does not modify the uncompromising necessity to cut down on food intake of all kinds, especially fats. Dairy products, except in strict moderation, are dangerous to all of us and deadly to the obese.
The second controllable risk factor for hypertension is smoking. The evidence is not mere medical prejudice or vague statistics. It is hard, unequivocal proof obtained in the consulting room and on the post-mortem table. It is the evidence of rigid, unyielding arteries in smokers and elastic arteries in non-smokers. It is also evident in the death rates and causes of death in smokers compared with non-smokers. The evidence is incontrovertible. Smoking is one of the major causes of ill-health and human misery and if this book achieves nothing more than stopping a few people from indulging in such a harmful habit, it will not have been written in vain.
The Effects of Stroke
The effects of stroke may vary widely from a minor, and barely discernible, disability to the most devastating loss of function leading to early death. The severity depends on two factors how much of the brain substance is damaged and which parts are involved. There are considerable silent areas at the front of the brain which are not essential to life and whose function is now becoming understood. Extensive damage in these areas may cause personality changes and other subtle psychological and functional damage, but have little obvious physical effect. Quite minor damage in more vital areas will be very serious.
Unfortunately, although the frontal, areas of the brain are often involved in stroke, it is seldom that these alone are affected. Most of the obvious functions of the brain voluntary movement, sensation, sight, smell, speech and hearing have their central computing mechanisms on the outer layer of one or both of the large upper hemispheres. This outer layer is called the cerebral cortex and the functions of the various areas of the cortex have been accurately mapped out by observing people with known areas of damage or disease.
Immediately behind the frontal parts of the brain are the outer layers which are responsible for voluntary movement (motor areas) and sensation (sensory areas). The nerve connections descending from these areas are amongst the most commonly affected in stroke.
Hemiplegia means half paralysis and this is the most obvious and best known of all the effects of stroke. The motor areas of the cortex are about half-way back along the surface and from these areas massive bundles of nerve fibres pass downwards through the substance of the brain, into the swollen brain stem and down the spinal cord, carrying messages to all the muscles of the body. But in the brain stem and the upper part of the spinal cord, all the great motor nerve trunks originating in the right half of the brain cross over to the left side of the spinal cord, and those on the left side cross over to the right side. As a result of this, if damage is caused to that part of the right half of the brain, concerned with voluntary movement, the paralysis will affect the left half of the body. If the left half of the brain is damaged, the paralysis will be on the right side.
These nerve fibres converge to form inverted pyramids as they descend and cross. This is called the pyramidal system and is concerned with voluntary, skilled movement particularly of the fingers and hands. The other section of the motor system, although capable of bringing about some voluntary movement, is concerned primarily with the many unconscious and automatic movements like breathing, the heart beat, the automatic parts of eating and such functions as sex and sleeping.
This extra-pyramidal system starts in the same motor area of the brain as the pyramidal system, but the nerve fibres do not run directly down to the brain stem and cord. Instead, they make various detours to other parts of the brain parts concerned with coordination and control before running down into the spinal cord. These detours carry the extra-pyramidal fibres around that part of the brain most vulnerable to cerebral haemorrhage or inadequacy of blood supply. The extra-pyramidal connections are also more spread out than the direct, closely-packed pyramidal fibres. As a result, and fortunately, the extra-pyramidal system is much less likely to be functionally damaged than the pyramidal system.
This is of tremendous importance to the stroke victim who suffers a cerebral haemorrhage in the area through which the pyramidal tracts run and loses lost nearly all pyramidal function on one side. For, if the extra-pyramidal system is intact, there is the possibility of this system taking over, to some extent, the function of the pyramidal tracts. But it will not be able to do so unless the person concerned has proper treatment from the very beginning.
Since each half of the brain has its own pair of large arteries to supply it the carotids and vertebrals it would be quite a coincidence if both sides were damaged simultaneously, so it is very unusual for paralysis, or loss of sensation or visual loss, to affect the two sides equally.
Let s look more closely at hemiplegia. Obviously, the damage to nerve fibres carrying movement messages may vary in extent, so that the loss of power in the muscles to which they are connected may range from slight weakness to total paralysis. This variation will depend on the number of nerve fibres affected by the blood supply loss (ischaemia) or bleeding (haemorrhage).
In cerebral haemorrhage, the destruction will often be widespread, but in every case, the severity of the paralysis or weakness will be greatest at the onset and, if the affected person survives, will, almost always, tend to get less with time. This is because although some of the fibres are permanently destroyed, many of them are able to resume their function once the swelling caused by the lack of oxygen has settled. But this is not the whole basis of recovery. It is now believed that closely adjacent nerve fibres, not previously used for the function now damaged, can partially take over. This is an important observation with a bearing on the degree of recovery possible and it also highlights the importance of correct training during the recovery period.
Loss of muscle power is not the whole story in hemiplegia. There is also usually loss of sensation, and this contributes to the disability. In addition, the paralysis of voluntary movement is often associated, paradoxically, with a strong tendency for the affected muscles to go into a tight involuntary contraction when stretched. This is known as spasm or spastic paralysis and it is due to the the nerves from the muscles to the spinal cord, and from the cord to the muscle, being intact. Normally, the messages from the brain damp down and over- ride these local reflex arcs but when higher control is lost, the local reflexes can take over and can operate powerfully. The result is that any local stimulus to the muscles such as squeezing or stretching will cause a strong reflex contraction via the spinal cord so that the arm, or leg, cannot relax or even be moved passively by someone else without difficulty.
It is essential that this spasm should not lead to permanent distortion. Without treatment, this may happen over the course of a several months, even a year or more, and will lead to deformity that can t be corrected. Treatment to prevent this is vital and should be started at the earliest possible moment. This is discussed in the next chapter. The following case illustrates what may happen if treatment of hemiplegia is neglected.
The fate of Mrs Gowers
Mrs Gowers was an unlucky woman. She had always had a bitter aversion to dependency and lived alone in a cold and gloomy detached house in Hampstead. She had an income several times her needs and hardly spent anything. Her one remaining relative was waiting with ill-concealed impatience for her money. Mrs Gowers had no illusions about her nephew s attitude and did not encourage his visits. But she believed that blood was thicker than water and had let him know that he was her heir.
One day the nephew let himself in and found that his aunt was still in bed. He called to her and she indicated that he should come into her bedroom. She was lying in a large bed, tightly clutching an old-fashioned bottle of smelling-salts in her right hand and glaring at him. Her left arm was lying limp.
Well, well, auntie! he said, cheerfully, What s up? Not like you to stay abed at this time. Anything I can do?
I m perfectly all right. she said, snappily, Just gone a bit weak in my left arm. I ll have to have a day or two in bed, that s all. He noticed that her face seemed a bit crooked and that, when she spoke, her lips puffed out occasionally, so that the p s and b s were breathy.
Look here, auntie. Are you sure you re O.K.? You don t seem quite right to me. Perhaps I should get a doctor...
I forbid it! Categorically! I just want you to ask Mrs Poole if she could look in every day instead of twice a week. I need a few things... shopping... a bit of help. Tell her she ll get something extra for her trouble. You ll telephone her, won t you?
If that s what the old trout wants, he thought, no skin off my nose. With any luck, this should be the beginning of the end.
The result was that Mrs Gowers remained in bed, being ministered to by her daily woman, for nearly a year. At length, even Mrs Gowers indomitable character could not prevail against her helper s growing anxiety and, finally a doctor was called.
Dr Martin was horrified at what he found. After a glance at the bed, he opened the window to dispel the smell of the bedsores he knew he would find. Mrs Gowers had a complete paralysis of her left side (left hemiplegia) and because she had had no proper positioning or passive movement of any of the joints on her left side for so many months, the spasm which had followed the paralysis had produced terrible shortening (contractures) of the affected muscles. Her head was twisted to the left side and her left shoulder and arm were drooping. Her left elbow was permanently bent so that the forearm was turned inwards and her wrist and fingers bent into a claw-like shape. The doctor found it impossible to straighten her arm or raise her shoulder.
Her left leg was turned permanently outwards at the hip. Her foot was dropped so that it was almost in a straight line with her leg, but turned inwards. Her whole body was twisted and leaning to the left and, for months, she had had to be supported by a pile of pillows to prevent her from falling to the left side. After her initial resentment, she accepted the doctor s attention and admitted, reluctantly, that she had suffered agonies from pressure on her buttocks and hip bones until the bedsores had become so large as to destroy the sensation altogether.
Who s been attending to you? Isn t there a nurse? Haven t you been registered with a GP?
The truth is, doctor, that I ve always prided myself on seeing to myself. I can t bear to be dependent on anyone else. I m afraid I ve become a stubborn old woman. Foolish, too, I suppose.
The doctor shook his head, but said nothing.
When she had been moved to hospital for proper care and investigation it was found that the stroke had involved the pyramidal tracts only and that her extra-pyramidal motor system was intact. The doctors decided that it was better not to tell her that, had she had normal management following the stroke, all the permanent bodily deformity could almost certainly have been avoided and she would probably have been able to walk again. As it was, she would remain gravely disabled.
The loss of sensation commonly accompanying one-sided paralysis ( hemiplegia) is much more serious than just an absence of feeling in the skin. The person concerned may not know, without looking, where a hand, foot, arm or leg is positioned in space and there may be an almost complete unawareness of one half of the body even, surprisingly enough, a kind of denial of ownership of the affected limbs. There may be a serious alteration in body image and of its position in relation to other objects and a total inability to identify simple objects, such as a door key, by feeling them. Such sensory loss can cause serious disability and can make certain occupations impossible. It may also greatly increase the difficulties of those trying to promote the patient s recovery.
Loss of the ability to move one side of the body is the most obvious effect of stroke, but it is not necessarily the most serious or distressing. When stroke affects the right side of the body damage has been done to the left half of the brain and it is almost always there that the centres for communication speech, writing, reading, comprehension are situated.
Aphasia is the term used for disorder of language ability caused by damage to the nervous system, and this may include, to a varying degree, the ability to understand or express spoken or written language. The ability to spell, do simple calculations or to tell the time may also be affected. The terms dysphasia and aphasia are often used interchangeably. Don t worry about the difference. They really mean the same thing.
It is important to distinguish between the upset of communication caused by a blocking of the input of information from that caused by the individual s inability to express information. Unfortunately, some strokes are followed by a defect of both comprehension and expression. After a stroke, some people are completely unable to speak, while others can speak fluently, although not always sensibly. The difference is entirely a matter of which part of the half-brain is affected. Careful studies have shown that if the damage is towards the front of the left half of the brain, there will be a problem in expressing information and possibly inability to speak at all. If the damage is towards the back, there will be no disturbance of the ability to speak, but, unfortunately, what is said may not convey the desired information.
Speech defect may be caused by intellectual disturbance or may be a purely mechanical difficulty in which the muscles of the tongue, lips and palate are affected so that normal speech is impossible. Eating may also be affected.
After a stroke, difficulty in reading (alexia) is quite common and may be due to actual brain damage or to other factors, such as visual disturbance (see below) or loss of the power of concentration.
True alexia results from the inability to make sense of consecutive letters or words. However, if letters or words are written vertically rather than horizontally, they can usually be more easily read. This observation has led to a method of reading training, using vertical orientation of words, which, if started early, can achieve good results.
Alexia and the associated difficulty in writing (agraphia) may be present to varying degrees. Difficulty of this kind frequently also involves problems with numbers and, tragically, in the case of musicians, a loss of the ability to comprehend
musical notation. There is usually a failure of both input and output so that the person can neither read printed language nor indicate the meaning of a word spelled.
The degree of recovery from alexia is very variable. It is not uncommon for a rapid and complete recovery to take place, but, unfortunately, it is more common for recovery to be partial so that there is a limitation on the understanding of what is read. Sometimes there is no recovery at all. The degree of recovery depends on the extent of the damage and, importantly, on the level of literacy before the stroke.
Writing difficulties are usually the result of right-sided paralysis in right-handed people, but damage to the back part of the brain, on the left side, can cause great difficulty in recalling the particular kind of movements needed to form letters on a page. A person may still be able to spell a word given in speech, but will be unable to write it down. The disorder is complex and includes disturbance in the mechanical process of writing, loss of the ability to spell when writing, and difficulty in finding the correct word to write. Sometimes letters may be misplaced, omitted or reversed or a word may be written as an anagram or some letters repeated several times.
Sometimes a stroke affects arithmetical ability. This defect is usually associated with aphasia, but may, in rare cases be found on its own. This can be particularly distressing, for example, in the case of accountants who have had strokes, from which they have fully recovered except for the ability to handle numbers. One such unfortunate could not even accurately write down two-digit numbers dictated to him. Happily, when general recovery is good, the arithmetical facility will usually return, in time. Calculators and computers can, of course, be a great help in such cases.
Effects on vision
A considerable part of the extreme back of the brain is concerned with vision, and interruption of the blood supply by way of the vertebral arteries the main source of blood to this part of the brain will always affect vision. Visual loss from this cause is different from loss resulting from defects in the eyes. As in most cases of stroke, the brunt of the injury falls on one half of the brain and this produces a loss of vision in the corresponding halves of the field of vision of each eye. Nothing will be seen to one side of a central vertical line.
Loss of half of the field of vision doesn t mean that there is a sort of black cloud covering half the field. This kind of visual loss is called hemianopia and most patients have difficulty in describing it. Indeed they are frequently unaware of it and activities like driving are very dangerous, because the affected person is often apparently unaware that part of the field of peripheral vision is gone.
Reading, too, may present problems, especially if the left half of the field has been lost. The eyes may succeed well enough in keeping the place on the page, but the sudden jerk back to the beginning of the next line takes them into the blind half of the field and the reader loses his or her place.
Differences between the two sides of the brain
For the great majority of people, the left half of the brain is the verbal or communication side. We have seen something of the effects of damage to this side but there are other differences between the two halves. The right side handles space relationships and our perception of them. This means the ability to appreciate the size and shape of objects and to judge their distance from us or each other. An artist with right-sided brain damage would still be able to manage the mechanical aspects of drawing or painting, but would produce seriously distorted work because of the inability to assess the relationship of the parts of the drawing to each other.
The effect of this defect is much more widespread than this and activities like washing, eating, shaving, and so on, are likely to be made extremely difficult if the person concerned cannot tell right from left, or the inside of a garment from the outside, or the distance from a plate to the mouth. Strangely enough, the person with left-sided weakness often seems unaware of his difficulties and will usually attempt tasks beyond his ability, sometimes putting himself and others in danger. Also, because speech and communication are not affected it is easy to underestimate the difficulties and, perhaps, to fail to provide sufficient help.
In contrast, the person with right-sided paralysis will go very slowly and clumsily and may be unable to communicate.
Depression and other psychological upset
About a quarter of the people who suffer a stroke develop a true depression due to brain damage. This is not just the natural reaction to the catastrophe, although the effects of the two causes will overlap. True depression shows itself by a flattening of the mood so that there is no response to events which would normally give pleasure or satisfaction. There is also loss of appetite and weight, severe insomnia, failure of motivation and a general lowering of spirits.
There are several other very characteristic psychological responses usually caused by damage to brain function and it is important that they should be recognised as such. They are:
Sudden emotional upset, with storms of weeping, which may be brought on by causes which would not normally have any effect on the emotions. These outbursts may have no relationship to the underlying mood of the person at the time and are clearly abnormal in nature.
A tendency to swing suddenly from happiness to sadness and back again with little cause.
A sense of hopelessness and a conviction that nothing can be done to help.
A severe and disabling loss of confidence.
Stroke often leads to an apparent loss of intellectual power. There may seem to be disturbance of the mental processes, with difficulty in grasping complex thought, and mild to severe loss of memory. I say apparent because it is very difficult, in some cases, to be sure that these effects are the direct result of brain damage rather than the secondary effects of the person s awareness of, and emotional reaction to, what has happened. This is especially true of loss of concentration and attention span and many of us would be affected in a similar way if we suffered severe disability without any question of brain damage.
Even so, genuine loss of memory and severe shortening of the attention span are common following a stroke and in many cases, they are due to actual disturbance of the relevant brain function. People affected in this way may seem childish, slow, irresponsible, lacking in interest in anything outside their own complaints and concerns and, sometimes, apparently cut off from reality.
When memory is affected by stroke, matters which have been familiar for years tend to be retained much more strongly than recently acquired knowledge. Things learned since the stroke are liable to be rapidly forgotten. It is better, therefore, for the stroke patient to be in familiar, rather than strange, surroundings and, when new skills have to be learned, these should always be based firmly on pre-existing knowledge.
These psychological effects often seem to bring about a radical change in personality but it is difficult to assess how far this is due to actual brain damage. Often, the change is so obvious that brain damage must be assumed to be the cause. Personality change may be very hard to tolerate and may cause as much hardship to the spouse or carer as to the patient. The quiet, modest, reserved person may become loud and boastful; the shy recluse may become aggressively social and overtly sexual; the dominant personality may become submissive; the miser spendthrift, and so on. Often someone who formerly took a great pride in his appearance will become sloppy and will neglect personal hygiene. Happily, these changes can usually be corrected by patient guidance and re-education.
Recovery from stroke
Sometimes recovery is almost total, sometimes slight, but, if the patient survives, some recovery almost always occurs. Most of it occurs in the first few weeks after the stroke; thereafter, progress tends to be slower. But recovery can, and does, continue for a very long time and proper management can increase the degree to which function is restored.
One of the most important of the many factors affecting recovery is age. This is well illustrated in the case of David who was lying in a deep coma, his breathing maintained by a mechanical air pump and his feeding provided by a permanent tube into his stomach. His parents were at his bedside, constantly talking to him in the hope of getting some sign of response. But as the weeks passed and he never made any voluntary movement, hope began to fade and the visits of his parents became less frequent. Only the physiotherapist seemed to believe that her devoted work to keep David s muscles from stiffening and contracting was worth the trouble. To my shame, I admit that I eventually concluded that the efforts to keep David alive were misguided.
Then one morning, to everyone s surprise, David began to move his arms and, progressively, over the next few weeks, his coma lightened and he began to respond to stimuli. But what kind of brain function could be expected after so much damage and such a long period of deep coma? David proved everyone wrong and recovered full consciousness and full awareness. Gradually his speech came back, not just the scanning, hesitant monotone so common in such cases, but a normal well-modulated voice expressing progressively more intelligent thought. After about four years no one, except those close to him could possibly have know of his previous condition.
This kind of story may not be of much comfort to the majority of stroke victims who do not have youth on their side. But some degree of recovery is the rule rather than the exception and observation of large numbers of older patients has shown that in many cases the degree of recovery is remarkable. These studies have also pointed to some important factors governing the extent of the recovery.
Factors affecting the degree of recovery
There are more of these than might be imagined.
The more severe the stroke, the greater the long-term effect on behaviour and skills, and the longer the time needed for recovery.
Strokes which come on gradually and progress slowly tend to cause less damage than sudden major strokes, and recovery from them will usually be better.
Thoroughly learned and long-held skills are less likely to be lost or impaired than poorly or recently acquired abilities.
People with high intelligence and strong character are likely to make a better recovery. People with emotional problems before the stroke will tend to make a less full recovery.
Abilities acquired early in life will be less severely affected than those acquired later.
The degree of recovery of function can be markedly affected by experience after the stroke.
Treatment is much more effective in influencing the degree of recovery if given sooner rather than later.
These last two points are especially important.
An understandable reluctance to put any strain on the patient, and a feeling that rest is necessary, can have exactly the opposite effect from what is desired. Stroke patients may have to be treated very firmly, even against their expressed will and desire if the fullest degree of recovery is to be achieved. As will be seen, the effective management of stroke recovery often turns out to be a sustained battle between the stroke victim and those concerned to achieve the best possible degree of recovery.
Learning to Walk Again
So far, the discussion has been concerned with the scientific background to stroke how the brain works, its dependence on a good supply of blood, and the consequences of any interruption of that supply. Hopefully, some readers may have been able to profit by this information and take steps to reduce their own chances of suffering a stroke.
But probably the majority have a relative, husband or wife who has already suffered this misfortune. For these the matter is far from theoretical and will have become a major fact of life, involving distress, anxiety, social and perhaps economic disruption, and worrying alterations in relationships. If nothing could be done to improve matters, this book would never have been written. But the fact is that, given understanding and the correct approach to the various problems of the stroke victim, the functional ability and quality of life can often be greatly improved. As illustrated by the distressing case of Mrs Gowers, the failure to take proper action at the proper time, may, after the initial natural improvement, lead to a progressive worsening of the patient s state.
This chapter is mainly concerned with the means of restoring the fullest possible degree of mobility and, in suitable cases, normal walking. Obviously those who have suffered massive brain damage with widespread destruction of the nerves from the brain to the muscles, will, sadly, never walk again. But even in these cases much may be done to improve their condition. It would be a fundamental mistake to assume, in any particular case, that the outlook is hopeless. Many wonderful recoveries have been achieved, but only in those who have been properly managed. Nature, left alone, will invariably produce a poorer functional result.
Early treatment is vital
The need for early intervention is well known to doctors and nurses dealing with stroke patients. Except for the gravely ill, all those treated in hospital will have the benefit of a good start in the management of their rehabilitation. But once patients are over the critical early stage and their condition has stabilised, few hospitals can retain them. So either they must be transferred to a stroke rehabilitation unit, or the responsibility must falls on the patients, themselves, or on relatives, assisted by visiting nurses and, perhaps, physiotherapists.
Treatment in stroke rehabilitation units is associated with a lowered death rate and a level of disability, and this should be insisted on. The ideal care of a stroke victim involves work by many different specialists including doctors, nurses, physiotherapists, occupational therapists, speech therapists and other. In the course of this kind of ideal management, patients and their relatives are given much advice to reduce the probability of a second stroke which is often a serious matter. They will be told of the importance of controlling weight; of good low-fat, low-salt diets; of taking exercise; of reasonable alcohol intake; and, above all, of avoiding smoking. They will de advise about the continuation of a small daily dose of aspirin which will have been started earlier.
But patients who can safely be discharged from hospital or from a stroke rehabilitation unit become the responsibility of themselves or their spouses or relatives. Anyone faced with this kind of responsibility, whether to themselves or to another, may feel helpless and unhappy perhaps even hopeless. Such a reaction is entirely natural and understandable. Despair over the future, severe depression, even terror, are the emotions common in this situation. But these are negative and destructive feelings which must be firmly put aside and replaced by constructive optimism based on knowledge of, and belief in, the correct management. The degree to which the state of the mind affects the body can t be over-emphasized. Positive, constructive thoughts actually do improve the condition and the functional abilities of the body.
Applying the principles in this book will not be easy. There will be resistance, even resentment, and the task will be especially difficult if there are communication problems. But, somehow, cooperation and good motivation must be obtained if full success is to be achieved. If you are a stroke patient, then the mere fact that you are reading this book suggests that your motivation is already good. Perhaps even, if good advice has been obtained, you may already have made a determined effort to get out of bed and get your faculties working again. Cases like that of Mrs Gowers occur only in the most exceptional and unusual circumstances. Even a minimal amount of common sense care, based on a few simple instructions, will prevent that sort of thing happening.
Lying in bed is dangerous
The first aim in rehabilitation is to get out of bed. Most elderly readers, especially the more active, will be aware of the importance of maintaining physical activity if strength is to be retained. Three or four weeks in bed, from whatever cause, is a disaster for elderly people. Many never recover the strength they had before and those who do have to work long and hard. About one tenth of the remaining muscular strength is lost for each week spent at total rest. Even healthy young people take a longer period of time to return to full strength than the period they have spent in bed.
But the situation is positively dangerous with older people and it is no exaggeration to say that a fair number are actually killed by bed rest. Physical disuse causes rapid muscle wasting, not only to muscles paralysed by stroke, but also to the normal muscles. Softening and weakening of the bones (osteoporosis) from loss of mineral salts an protein occurs and the danger of massive clots forming in the leg veins is considerable. These clots can come adrift and cause sudden death by embolism in the lungs.
So a first priority is the resumption of physical activity. In the very early stages, there will be a limit to this, although sometimes only by purely emotional factors. The patient often feels sorry for himself and just wants to be left alone to lie in bed and feel resentful. In many cases the loss of body image, which is a consequence of the stroke, will add to the difficulty. A patient may actually feel that one side of his body doesn t belong to him and is of no concern, and in such cases it may be necessary to reinforce the awareness of the body by using a mirror.
A major additional danger concerns weight. An overweight stroke patient will be more sedentary than the average and will usually have a poor power-to-weight ratio. With reduced activity and, as the muscles begin to atrophy, the effective strength will very rapidly drop to the point where it is insufficient to allow recovery. Very fat people who suffer strokes even quite minor strokes are unlikely ever to walk again unless a supreme effort is made to get the weight down quickly. In addition, overweight people may simply be too heavy for the helper to move so all sorts of problems will arise. These observations should persuade stroke victims of the importance of weight reduction. Immediate dieting is essential nothing fancy or extreme, just eating a lot less than usual, and concentrating far more on vegetable and fruit foods than on mat and dairy products.
Spasm the enemy
Spasm is a subject of critical importance to all, especially to the stroke victim. Although it has already been mentioned it is important to be clear what spasm is and how it comes about.
Damage in stroke occurs only in the brain and nothing at all has happened to the muscles themselves or to the nerves from the spinal cord to the muscles or those from the muscles to the cord. All these are intact and able to function. Even the connecting nerve bundles in the spinal cord are intact. The only thing wrong is that the nerve bundles passing down through the substance of the brain from the surface, whose job it is to tell the spinal nerves to stimulate the muscles into contraction, have been interfered with. The messages passing down from the brain surface, known as nerve impulses, in addition to directing and initiating voluntary action, have a powerful controlling, smoothing and coordinating effect on the lower nerves running out of the spinal cord.
When the nerve impulses from the brain are absent, or abnormal, the lower nerves tend, after a time, to act on their own. But they cannot do this in a purposeful and smooth manner and the result is that the muscles affected are not only unable to perform voluntary actions but are also liable to go into uncontrollable contraction on the slightest stimulus. This condition, in which the muscles are unable to act under the control of the will, but readily contract in a purposeless manner, is called spastic paralysis and this is a very common feature of hemiplegia.
Almost all of the main muscle groups act in opposing pairs. For instance, the muscles which bend the elbow are opposed by the group which straighten it but these opposing groups are not necessarily of equal strength. In order to stand upright and to walk, we have to fight gravity which would, without muscle contraction, cause us to collapse on to the ground. So the muscles which oppose gravity those, for instance, which straighten the knees or bend the elbows tend to be stronger than their opponents. Since spasm affects all muscles equally, the stronger ones will prevail and joints will be bent as a result of spasm of the anti- gravity muscles. This, in fact, is what happened to Mrs Gowers.
This spasm must not be allowed to pull the body into an abnormal and fixed position of deformity. If it is not properly treated, an abnormal posture results and makes it impossible for the two sides of the body ever to be the same again. The head will flop over to the paralysed side. The hip, the knee and the ankle will be extended (just as they have to be to defy gravity) and the leg will rotate outwards. The elbow, wrist and fingers will be bent and the shoulder will be pulled backwards. So, right from the beginning, as soon as the patterns spasticity begin to develop, the limbs must be positioned in such a way as to reduce the spasm. This is so, whether the person concerned is lying in bed, sitting up in a chair or even standing.
The positioning is done as follows:
the neck and spine must be straightened
the shoulder, on the affected side, must be raised
the elbow, wrist and fingers straightened, with the thumb held away from the hand and the palm facing outward
the leg must be held away from the body with the hip slightly bent and the foot turned upwards.
This kind of positioning can, and must, be adopted with the affected person lying, in turn, on the healthy side and on the paralysed side. If necessary, pillows must be used to keep the limbs in the appropriate position. Sitting up in a chair will help the positioning of the legs, but the affected arm must be supported on pillows to keep the shoulder elevated and the elbow extended. It is particularly important to avoid a fixed bent deformity of the wrist and a cock-up splint will often be necessary to achieve this.
When the person is lying, the position greatly affects the amount of spasm. This is because information from all parts of the body is still being fed to the undamaged parts of the brain resulting in feedback which influences the amount of spasm. For instance, the position of the head has a great influence on the amount of spasm and if it is turned away from the paralysed side, spasm will increase. If turned towards the weak side, the spasm will be less. Because many stroke patients have a strong tendency to dissociate themselves from the paralysed side of their bodies even to behave as if it did not exist turning away is common and it must be actively resisted.
Lying on the back, except for short periods to relieve pressure discomfort, should be strongly discouraged. This is because it promotes spasm in the anti-gravity muscles and will quickly cause the body to take up the undesirable stroke position. If the patient does, briefly, lie on his back, great care must be taken to prevent abnormal positioning. A pillow should be put under the shoulder on the affected side to hold it forward and the arm must be pulled away from the body with the elbow straight and the wrist extended backwards. Likewise, the hip, on the paralysed side, must be propped forward with a pillow and the knee slightly bent with the foot resting on the bed and the paralysed knee on top of the other.
Starting to move again
Movement should start as soon as no danger will result and certainly sooner rather than later. The first steps are to get the patient to roll over, sit up in bed and balance on the side of the bed. Until the patient is able to do these things alone, your help will be needed. The physiotherapist will advise here. Remember that the patient needs help on the paralysed side, so support should always be given from that side, rather than from the side which can support itself. This may sound obvious, but carers will often, thoughtlessly, support the good side.
Begin by practising rolling over, at first assisted, and then, as soon as possible, without assistance. The sooner the patient learns the trick of rolling on to either side, the sooner some measure of independence, however small, is achieved. This first exercise is not always as easy as it may seem. Rolling from the good side to the paralysed side is usually easy enough, but rolling on to the normal side from the weak side can be very difficult and requires a good deal of practice. The proper sequence is to clasp the hands together, with the arms extended and use the good arm to pull the paralysed arm straight up in the air, thus raising the weak shoulder. The head then turns to the good side and the extended arms follow, so that the balance of the body, assisted by the weight of the extended arms, begins to tip towards the sound side. The trunk, hips, legs and feet then follow round in turn.
When this sequence has been followed, the position which results is the correct anti-spasm one. Assistance with rolling over may be necessary, to begin with, but only the minimum of help should be given, and the aim should be to achieve active rolling, in both directions, without assistance, as quickly as possible. Because of the importance of the arm in positioning and rolling and because the arm on the weak side is, in a sense, a dead weight , there is a strong tendency for the shoulder joint on the affected side to suffer injury even dislocation. This may easily happen, especially if the helper is unaware of the danger of inadequate support and of the risks of pulling on the paralysed arm. Special care must be taken of the weak arm during passive rolling movements and when dressing or moving the patient. As hemiplegia is often associated with sensory loss in the affected half of the body this may prevent the patient from being aware that the shoulder joint is being injured.
Some patients learn tricks to assist in rolling for example, hooking the sound foot around the weak leg to assist the turn. But this encourages the patient to compensate for weakness by the use of the good side and simply promotes spasm in the paralysed side. Proper rehabilitation is therefore impeded. Loss of the muscle power on one side is often accompanied by loss of sensation so that the patient wants to ignore the paralysed side.
The carer must try to identify with the patient. Questions about what is being experiencing must be asked, from time to time. And it must always be remembered that spasm is the enemy and that any movement or position that brings it on must be carefully avoided.
Even at this early stage the carer may feel that there is a major problem. The patient may be withdrawn and uncooperative, showing no sign of appreciation of what is being done and perhaps even actively resisting help. There may be outbursts of rage or inappropriate emotion and total lack of interest in the efforts made to improve functional ability. Every effort should be made to avoid discouragement. Any improvement achieved will not only give the patient hope, but will also make the carer s life easier.
Most stroke patients go through a stage in which they are extremely self-centred and, apparently unconcerned about the feelings of anyone but themselves. There are few exceptions to this and many responses may seem unkind or even cruel. But it would be wrong of you to react as one might to a person who has not suffered brain damage. Great patience is required and this is bound to fail at times.
Sitting up in bed
The first step towards getting out of bed is sitting up and learning sitting balance. Sense of balance will always be seriously impaired and it is important not to do too much at one time. The patient should not be left alone in a new position unless it can be maintained for a reasonable time and should sit well up in the bed, in a properly upright position and well supported by pillows so that the spine is not bent over to the weak side.
The arm on the weak side must also be properly supported in the anti-spasm position. Remember that the elbow must be mainly straight, the shoulder forward, the arm rotated outwards so that the palm is upwards and the wrist extended backwards The leg on the weak side must also be in the anti-spasm position turned a little inward, the affected hip forward and slightly bent and the knee also a little bent and turned towards the midline of the body.
It is a basic mistake to assume that the bedside table should be placed on the patient s strong side. Although the spine should not be allowed to take up a permanent twist, by muscle spasm, to the weak side, it is nevertheless important that active voluntary movement to that side should be encouraged. This is best done by ensuring that the patient has to turn that way to reach the bedside table. This discourages spasm, encourages recognition of the affected side of the body and greatly assists rehabilitation. In particular, motivation in the right direction is provided automatically. Very likely the patient will object, will want easy access and will want to ignore his affected side. The carer should explain the reasons and then be firm. But it is important to watch out for the position of the weak arm and ensure that it is not endangered in the process.
Working across the weak side is an important principle in the rehabilitation of a hemiplegic person and this point should be carefully noted. Pressure on the muscles of the weak side tell the brain that support is needed on that side and, as explained, this is mainly the job of the extra-pyramidal motor system. In a great many cases of hemiplegia, the extra- pyramidal system is still largely intact and it can supply the directions needed to the appropriate muscles which then contract in a purposeful manner. In other words, properly applied weight-bearing results in automatic support of the parts concerned. The same principle applies, with equally good effect, to walking.
Getting out of bed
Once sitting up in bed is achieved, no time should be lost in proceeding to get out of it. Again, the principle of working across the weak side is used. The patient will, therefore, have to get out of bed on the paralysed side and the first step is to learn how to prop up on the weak elbow and practice getting balance in this position while rolling far enough over to the edge of the bed to allow the good leg to cross over, and rest on top of, the weak leg. Although the eventual aim is to manage the whole business alone, the patient should not be allowed to go any further than this without assistance.
Having checked that the good leg is resting on top of the other, the carer should take a firm grip of the patient s good hand and, place the other hand behind the heel of the weak, lower, leg. By pulling gently on the hand and, at the same time, easing the legs over the edge of the bed and downward, the patient can be moved smoothly into a sitting position. As soon as this is done the position should be checked. Excitement over success must not lead the carer to forget the cardinal importance of proper positioning and the reason for correct positioning to avoid spasm.
The feet should be placed firmly and flat on the floor, about eighteen inches apart and parallel to each other so that neither is turned in or out. This is important because the correct positioning of the feet ensure that the thigh is not allowed to rotate outwards that is, to fall into the spasm position. The knees should be bent to a right angle, or as near as the height of the bed and of the patient will allow. If the bed is very high, some kind of stable low platform should be used.
With the arms stretched out sideways, so that the hands are on the bed, the patient should now be encouraged to begin shifting the weight from one haunch to the other and, as soon as this can be done, to begin shifting the body, by this alternating shift of weight, towards the edge of the bed and back again. The weight placed upon the weak arm in doing this will provide the stimulus necessary for reflex support. When this can be done satisfactorily, the fingers should be clasped together and the two arms held straight out in front while the haunch-walking continues. This provides excellent practice in balancing and in overcoming the natural tendency to fall to the affected side. Haunch-walking is also an aid to balance practice and should be done as vigorously as strength will allow. Try to get the patient to lift each hip clear of the bed, in turn.
These exercises are an important preliminary to relearning to walk, and should be done three or four times a day, or as often as the patient s strength will allow. Once haunch-walking has become easy, the next step is to get the patient up into a chair. A strong upright chair should be put alongside the bed with the edge of the seat on the patient s weak side. The patient should now be encouraged to lean on the good arm sufficiently to allow half standing, partial turning to the good side, and sitting down smoothly on the chair. The ability to do this without assistance is a boost to morale and a useful exercise.
Getting back into bed follows the same sequence in reverse, but involves the problem of raising the paralysed leg. At first assistance will be needed. Some patients learn to hook up the weak leg with the good one. This is certainly acceptable in an emergency and is an aid to independence, but it goes against the principle that all bodily movement should, if possible, be active. Passive movement taking hold of a weak limb and moving it may be useful, but it doesn t help in rehabilitation. Obviously a good deal of passive moving is necessary, especially in the early stages, but it is always a second best and deprives the patient of the opportunity to improve.
The next stage is to get the patient to stand, and the method of doing this is also useful in getting back into bed. It is essential to understand the right way to do this before trying. This is how. The carer should ensure that the patient s feet are close together and should stand in front of him with the feet on either side of his. The carer s knees should be bent slightly so that they are positioned on either side of the patient s knees, and act as a sort of clamp for his. The carer is now in control of the patient s legs. The carer s hand is now put under the elbow of the patient s weak arm so that the forearm provides a rest for his. The carer can now lean over the patient a little and the patient puts his good arm round the carer s shoulders. The carer s arm is now put round the patient s waist.
This important position is more than just a way of raising a hemiplegic patient to his feet, or shifting him from a chair to a bed. It becomes almost a symbol of caring and provides confidence in standing and in weight-bearing on the affected side and is an essential stage towards unaided walking.
It will not, of course, be much good if the patient can stand only when held in this way, so some form of temporary support is needed. Two substantial chairs should be positioned on either side, seats outwards, with the backs level with the waist, and the patient should be persuaded to use the tops of the backs as parallel bars for standing practice. Much persuasion should not be necessary if the patient has been sitting long, for the relief of standing is welcomed.
Now is the time for the patient to learn to stand up alone. This can be practised in several ways, but, at first, it is best to provide the support and confidence of the two chair backs. When used as an aid to standing up, the chairs should be placed reasonably close, one on either side, so that they do not tend to fall inward under the patient s weight. The two chairs should be placed just in front of the chair in which the patient is sitting so that the latter will have to lean forward a little with both arms stretched out to the parallel chair backs. These should be used only as a means of support and of maintaining balance while the patient stands up by leg and back power alone not by dragging on the good arm. The exercise of rising to the feet and then resuming the sitting position should be repeated many times until strength and confidence have improved.
At this point it is very important to check that the spine is straight with the head held high and central. One thing that must be avoided at all costs is the common tendency to put all the weight on the good leg, so that the hip on the weak side is higher and the heel of the foot on the affected side off the ground. This, unfortunately, is the typical stance of the hemiplegic and once established may be difficult or impossible to correct. One out of three people who have had strokes and have progressed this far, develop this kind of stance and have, in consequence, a permanent and quite severe limp. The ankle becomes extended and only the ball of the foot rests on the ground. This condition may become permanent, with shortening of the tendon running down to the heel (the Achilles tendon) and may be correctable, if at all, only by surgical operation. So attention should be paid to this, right from the beginning. The whole sole of the foot on the weak side must rest firmly on the ground and the hips must be level.
The time at which walking should be started will vary from person to person, but, in any case, walking should always be preceded by at least a week s daily standing and sitting practice. Longer than this will often be necessary. Skilled guidance in a physiotherapy department or rehabilitation centre is most important at this stage and should be arranged. It is natural to want to progress as rapidly as possible and care should be taken not to induce wrong habits which may be difficult to undo. If there is a delay in arranging proper physiotherapy, it may be best to limit the patient to sitting and standing exercises until professional advice can be obtained at a physiotherapy unit. In particular, crutches or a walking stick should not be used as these are likely to limit the extent of long-term success.
Walking is such a natural and unconscious activity to a healthy person that few really appreciate what a complex process it is. It is of great value to analyse what happens. The control of balance involves a great quantity of information being relayed to the brain from the eyes, the semicircular canals deep in the ears, the leg muscles and tendons and, indeed, every movable part of the body, and the integration of all that information by the brain to produce the appropriate signals to the muscles of locomotion. After stroke, a varying amount of this information may be denied and the integrating part of the brain may also have been damaged. So, quite apart from the one-sided weakness, balance itself may be defective and this may add to the difficulties. Fortunately, the brain is amazingly adaptive, even in the elderly, and, although some feedback information may be lost, the remaining sources can be called upon automatically to make good the deficit.
Walking involves forward momentum, the transfer of weight to one heel and then from that heel to the toe (with a lift which allows simultaneous swinging forward of the other leg), a firm push-off with the toe against the ground, to maintain the momentum, and then the repeat of the process on the other side. Obviously, a person with hemiplegia is not going to be able to carry out this process on both sides, but, so long as the weight can be borne on the affected side making use of the extra-pyramidal system and reflex muscle contraction and the foot can be flexed enough to allow the strong foot to come off the ground and swing to the front, momentum can be used to carry the body forward. In the ideal case a remarkably natural gait can be achieved.
Unfortunately many stroke patients are unable to bend the foot voluntarily and suffer a toe drop so that the toe scrapes along the ground during the swing forward. For these, a light leg caliper or brace may be necessary. This is attached to the shoe and has side pieces running up the leg to be strapped just below the knee. Whether or not a brace is necessary will be determined by the staff at the physiotherapy centre. The brace is very inconspicuous and is almost entirely concealed under the trousers or slacks.
In the early stages of walking practice at home, there will be a lot of anxiety about falling. This can be reduced by practising walking with a wall close to the weak side for any necessary support. The patient should not, however, rely on the wall and should move away as soon as confidence improves. If the hand on the weak side has a reasonable grasp, confidence can be improved by using a central walking balancing aid adapted from a sweeping brush with the handle shortened a little and a rubber tip pushed over the top of the handle. This should not be used as a walking stick or crutch but simply as an aid to balance. The ends of the head of the broom are held in two hands and the tip of the handle rests on the ground in front.
Above all, the patient should aim for naturalness in walking. Any limp or dip should be carefully scrutinised and investigated and, if possible, eliminated. This may not be easy, but the effort is well worth while. In re-learning to walk, the stroke patient actually makes use of the tendency to spasm which if allowed to develop unchecked would probably make walking impossible. The object is not simply to drag oneself around somehow on two feet, but to do so in such a manner that no casual observer would suspect that there had ever been paralysis.
If possible walking sticks should be avoided. When there is no other resource, a walking stick can certainly be a great help for balance and strength, but if used at an early stage might limit the degree of final recovery. In a sense, using a walking stick is an acknowledgement that the patient has decided to compensate for the weakness by using the normal side and has given up hope of improvement. When a long period has elapsed since the stroke, a walking stick may be a boon, but its correct use is not always well understood. This is dealt with this, along with the use of other aids to mobility, in Chapter 9.
Preventing a second stroke
This is a short chapter but a very important one and it contains a lot of advice that may literally be vital.
The risk of having a second stroke is, of course, much higher than of having a first one because most of the risk factors are still present. Present estimates, based on large numbers of cases, are that a person who has had a stroke has, on average, an 8 per cent chance of suffering a second stroke in each subsequent year that is, about one chance in twelve. A person who has had a TIA has an 8 per cent chance of having a stroke in the first month and a 5 per cent (1 in 20) chance of a stroke each year thereafter. Anyone who has had a TIA has a 5 per cent chance of having a heart attack in each subsequent year.
These figures emphasize the importance of doing everything possible to reduce the chances of a second stroke or a heart attack. Fortunately there are things that can be done. If they are done properly, and persisted in, they will make a substantial reduction in the risk of these serious events.
The most obvious and in spite of what you may have been told the easiest measure is to stop smoking entirely. This is far too dangerous a situation to be influenced by silly stories of people who smoked until they were ninety-five. Of course there are, but the other 99 out of the 100 killed themselves by smoking. Just stop. Suffer for a day or two and you will get over it. And never, under any circumstances, smoke another cigarette. In this situation, the old phrase nails in my coffin couldn t be more appropriate.
The next thing to do is to attend to your blood pressure. There is no safe way you can neglect this. It must be carefully and repeatedly checked by a doctor or nurse who knows exactly how to do it and who knows that a single reading is probably meaningless. In April 2001 the British Medical Journal devoted two detailed articles, in consecutive weeks, to the technique of measuring the blood pressure, so there must still be medical people who aren t really getting it right. Raised blood pressure can be brought down by proper treatment, partly by your doctor and partly by you, and this can save your life.
The next risk-reduction strategy is in you own hands. The chances are that you are taking in more food energy than you are expending in exercise. Whatever other factors may apply, obesity can t occur in any other way. All excess of intake over expenditure is laid down as fat. Check your weight daily on accurate scales and make quite certain that you never exceed a stated figure. You can work out what this figure should be by discovering your body mass index (BMI). This is your weight in kilograms divided by the square of your height in metres or kg/m Your BMI must be in the range 20 to 25, and preferably at the lower end of that range. People with a BMI greater than 27 suffer a notable increase in illness. One fifth of the men and about a quarter of the women in Britain, and an even higher proportion in the USA, have a BMI of over 27.
Obesity is very important because it is both a direct and an indirect risk factor for a second stroke or a heart attack. Obese people have higher blood pressure and they have a higher incidence of diabetes of the maturity-onset variety which is a risk factor for stroke. They also take insufficient exercise, which is another risk factor. Incidentally, it is worth mentioning that they have an increased incidence of cancers of the breast, womb (uterus), ovaries and gall-bladder in women, and of the colon, rectum and prostate in men. Obesity is also associated with orthopaedic problems, such as osteoarthritis and foot trouble, and with depression. The connection between obesity and heart attacks is independent of the effect of high blood pressure and of smoking.
Controlling your food intake is not easy, but it is vital. If you can t succeed on your own, consider asking for professional advice and perhaps having a course of behaviour therapy.
A change in your diet is essential. Concentrate on fresh vegetables and fruit, white meat such as fish and chicken. Never eat butter. Drink only fully-skimmed milk. Avoid beef protein and fat, and never eat creamy confections. Ice cream is dangerous because it is so easy to eat too much of it and it can contain plenty of calories. Make sure you get plenty of vitamins, using supplements of C and E and daily fish oil capsules. Be careful not to overdose with vitamins A and D. That can be dangerous. You should have your blood cholesterol levels properly evaluated. This, too, must be done by someone who knows what he or she is doing. Home checking kits are not good enough. There is more to this than just figures.
Low salt no additional salt in cooking or as a table condiment, will make a worthwhile reduction in your blood pressure and, although food will taste very bland and often uninteresting, you will, eventually, recover your pleasure in eating.
Finally, get into the habit of taking regular daily exercise. This is really important. A brisk walk or as brisk as your condition will allow for at least half an hour every day will make a great difference to you. It will improve your morale, reduce depression, help to keep your appetite in check and your weight down, lower your blood pressure, and improve your physical performance. There is everything to be said for it, and nothing to be said against it.
You can walk your way into a new life.
Psychology and Stroke
Our psychological state has a tremendous influence on our bodies an influence which can hardly be exaggerated and it operates continuously, gradually modifying the structure of our bodies, both in obvious ways, such as altering our bearing and carriage, and in more subtle ways of which we are much less aware until the evidence of bodily illness is forced upon us. A faulty state of mind can, indirectly, lead to damage to the structure of our arteries, high blood pressure and stroke.
But the condition of the body also has a considerable bearing on the state of the mind and an event as major as a stroke will affect the mind profoundly. Because the brain is the seat of all mental activity, damage to its structure can also directly affect the mind. The consequences of these important points are dealt with in this chapter.
Is there a stroke personality?
The answer to this question is a very definite Yes . Careful research has shown that some people, simply by the nature of their personalities, and the resulting behaviour patterns in their relations with others, are prone to illness. Anyone aware of stress and tension in their relationships or who suspect that their attitudes and responses may not be entirely healthy should certainly be taking precautions. Although it is probably impossible to make any really radical alteration in personality, it is not difficult to recognise the patterns of behaviour which are dangerous to health and which can lead to serious illness. Whenever possible, these patterns should be avoided or amended.
For at least thirty years, medical men have believed that among the small number of factors responsible for causing the changes in the arteries which lead to stroke or coronary thrombosis, one must include the possession of a particular type of personality. In one trial a group of over 3,000 men was divided into the high pressure, competitive go-getters (Type A personality) and the calm, relaxed, laid-back category (Type B personality). These men were then followed up for eight years and it was found that the Type A men had significantly more atherosclerosis than the Type B. Since coronary thrombosis is commoner in younger people than stroke, this was used as the index of artery disease and the early study showed that Type A people were twice as likely to have a heart attack as Type B people.
In more recent years critics of the theory have pointed out that it is often hard to identify these personality types with certainty and, although everyone recognises the extreme case, there are many who fall into neither category. Those who support the theory are able to give good descriptions of the Type A personality, and much research work has been done to try to improve the identification of a wider range of those at risk.
The Type A man (Type A women exist, but are less common than Type A men, and seem to be quite well protected against the undesirable effects) has a powerfully competitive nature with a constant sense of urgency and a determination to make the best use of his time. He does everything at top speed and tries to get through work as quickly as possible. He walks and drives quickly, always anxious to arrive and to get on with the next job. He talks rapidly and impatiently often failing to finish sentences and frequently interrupts. He has high motivation, is determined to succeed and, in the words of one of the originators of the concept, ...is aggressively involved in a chronic, incessant struggle to achieve more and more in less and less time.
Careful studies on medical students and others have shown a fascinating correlation between the personality type and the amount of adrenaline and cortisol produced under stress. The medical students allowed the researchers to take blood samples as they were waiting, tense with anxiety, to go in to examinations. The results were clear. The type A people produced much higher levels of these hormones than the others. And we know that repeated high levels of these powerful substances tend to lead to arterial diseases atherosclerosis and high blood pressure.
The personality type theory, which is obviously of major importance, has been refined even further by the discovery that the characteristic of the Type A personality most likely to be associated with atherosclerosis is hostility. Studies have shown that those people who demonstrate their competitiveness and impatience by strong hostility and indifference to the advantages and rights of others are in a very dangerous state. Personality can be reliably assessed by means of psychological tests, the best and most successful of these being the Minnesota Multiphasic Personality Inventory (MMPI). This is a test in which the subject is asked to tick true or false to more than five hundred statements. From an analysis of the responses a remarkably detailed account of the personality of the subject can be obtained. The MMPI easily identified people with high hostility ratings. And when these people were followed up they had a mortality rate from arterial disease such as stroke or coronary thrombosis six times as high as those with low hostility ratings.
There are good physiological as well as psychological grounds for this remarkable finding. Unconcern for others often arises, in competitive people, from a feeling that if you don t protect yourself, others will take immediate advantage. Inevitably, this state of mind causes aggressive behaviour which, in turn, leads others to respond in the same way. This leads to anxiety and insecurity and, inevitably, further aggression. It also leads to alienation and isolation and this is well known to be a most unhealthy and stressful situation. Distrust and fear of personal disadvantage, especially in a competitive context, means constant alertness a state well known in the jungle and in the physiological laboratory. The need to be ready to fight or flee, at any moment, leads to the frequent production of adrenaline and cortisol and these hormones raise the blood pressure and increase the tendency of the blood to clot. Atherosclerosis, with the attendant risk of stroke or coronary thrombosis often results, in this indirect way, from such hostility.
Unquestionably, openly expressed hostility is dangerous even speaking loudly for emotional reasons is known to raise the blood pressure, and plenty of people have suffered apoplexy in the heat of an angry tirade. But research has proved that when hostility is habitually bottled up, the effects on the health of the individual are often even more serious. A study of Type A men at Duke University, North Carolina, suggested that those who felt they should conceal their aggression against others and who succeeded, in spite of intense frustration, in avoiding a blow-up , were the ones most greatly at risk. Indeed, the research workers went so far as to suggest that this might be the only really important factor leading to a high risk of atherosclerosis and that it might have been the scattering of individuals of this particular characteristic within the Type A group that led to the higher than normal incidence of arterial disease.
This theory has yet to be proved, but if it is correct, the implications are important. Hard work, a sense of urgency and a determination to succeed may, it seems, be harmless so long as aggression is adequately controlled and, in particular, not bottled up . We should all take a long, careful look at the nature of our relationships and the ways in which aggression is generated. Perhaps, if we understand how dangerous it can be to continue to live in such a way, we may be able to avoid it and spare ourselves the worst of the consequences.
Making the psychological adjustment
The psychological effects of actually experiencing a stroke are well recognised and it is helpful if the carer is familiar with them so that the major events taking place in the mind of the victim can be understood. The mental response to suffering a stroke is essentially a grief reaction and the victim is actually mourning the loss of faculties and powers. At this stage the patient will not believe that recovery is likely, and part of the carer s job is to get this fact across, positively and effectively. Information of this kind is vital to the patient s mental security, but the carer will not be believed unless the statement is based on an authoritative source of medical information such as this book.
Grief is the natural reaction to bereavement, that is, loss of any kind of a person, money, a relationship or a faculty and is a process of adaptation. It passes through a number of recognisable stages which are apparent to different degrees in different people. These include alarm, shock, denial, mitigation, anger, guilt, acceptance and adjustment. Not all of these may be recognised and often the stages overlap. Moreover, different people adjust at different speeds and the progress from one stage to the next is not smooth. This is likely to cause confusion and the behaviour of the patient may be very difficult to cope with. Help may, for instance, be rejected especially if the patient is in the stage of anger, because everyone, including the carer, is likely to be blamed for what has happened.
In stroke, the significance of these phases is as follows:
ALARM this will be caused by the first TIA and may be severe. But, with repetition the level of alarm will drop and, eventually, the person may become almost indifferent to it. This is a great pity as early alarm of this kind can provide motivation for a change of lifestyle which could prevent stroke from occurring. Alarm at the time of the full stroke will be even more severe, even intolerable, and will often be quickly followed by shock.
SHOCK this follows a full appreciation of what has happened and often acts as a kind of anaesthesia against the horrors of reality. The patient may show apparent indifference, perhaps even amusement a sort of shock euphoria and the carer must not be surprised at this or think that it is necessarily the result of brain damage. More likely it is the result of emotional damage and will probably pass into the stage of
DENIAL denial is an important defence mechanism used to reduce anxiety. It is not only employed by the patient but possibly also by the carer. Behaving as if very little had happened, avoiding talking about the patient s disability or anything connected with it, and engaging in a period of feverish activity with very little purpose are all signs of denial. But this mechanism has its function. It is a useful way of gaining time to come to terms with the problem and it will gradually pass. This may take longer for the patient than for the carer. Actively prolonging the period for the victim by reinforcing denial of the truth should be avoided. The care should look out for indications of gradual acceptance and gently pursue the truth.
MITIGATION this phase need not occur but when it does it indicates an attempt to avoid the full distress of the situation by trying to make light of it. It is not a fully mature response and, if persisted in, will delay full acceptance and may undesirably postpone the acceptance of important early treatment.
ANGER this indicates the end of denial and the full realisation of the implications of what has happened. In many cases it passes fairly quickly but sometimes it persists to the great detriment of the patient. Anger will always be directed and, unfortunately, the carer may be the recipient. It is necessary to be very understanding and not to expect reason or logic when this powerful emotion is involved. Sometimes the anger is directed against God, and it is common, in this stage, for religious faith to be lost in a storm of bitterness against a Creator who could do such a thing. If religion has been an important element in the life of the sufferer, faith will probably be restored when the stage of resignation has been reached.
GUILT this may take various forms. Some people cannot accept that such a calamity could come upon them unless they deserved it. Stroke may be deemed by some to be a punishment and these people will experience guilt. Again, the stroke victim may feel that the family has been let down, possibly deprived of the standard of living they had come to expect. Commonly, the wife of a stroke patient will come to believe that she is responsible for what has happened by having driven him to work too hard. This is, of course, nonsense. Stroke is never caused by overwork and, in any case, it is doubtful whether anyone can ever be driven to overwork. But if such guilt arises, and is accepted as justified, it may cause a reflected guilt in the mind of the patient, who is likely to be well aware that this is not the cause.
ACCEPTANCE this is the stage at which the stroke patient comes to terms with disability and, hopefully, begins to direct energy and attention towards rehabilitation.
ADJUSTMENT after full acceptance a period of adjustment to the new situation occurs. So long as this adjustment is positive and constructive and is directed towards achieving maximal use of the remaining faculties, this is a healthy response.
These stages of reaction are a normal and, indeed, essential, part of the process of adaptation. To some extent they are protective and provide time for mental healing. So the carer should go along with them up to a point. But it is still necessary to see that the patient doesn t get stuck at one of the early stages. It is simply no good persistently denying what has happened, or cooperating in an insincere conspiracy to pretend that everything is going to be all right in the end. Reasoned optimism and a positive outlook, based upon known facts, are essential, but, as the truth gradually becomes apparent, it is important to acknowledge it openly.
Mental factors influencing recovery
It is a basic mistake to think that the degree of recovery possible is entirely a matter of the degree of damage to the brain. Obviously this is an important factor, but it is by no means the only one. Different people with the same amount of brain damage may recover to remarkably different extents and many factors are involved. Some of these such as the person s previous standard of health, the basic stability and flexibility of the personality, a generally optimistic outlook, the financial status and so on cannot be controlled. But others can, and it is important to be aware of these.
The most influential mental factors are:
The nature of the carer s attitude to the illness and to the patient s expectations of recovery.
The extent to which the illness is understood both by the carer and the patient.
The success with which the carer is able to maintain the patient s sense of continuing importance to others.
The success with which the carer is able to keep up a meaningful relationship with the patient and maintain the patient s relationship with others.
The success with which both carer and patient are able to keep emotions on an even keel.
These factors can make a great difference to the outcome. The victim must struggle, and will not do so unless there is a good reason. It is not uncommon for those with no motivation and these are likely to be people who never had much inclination for life even before the stroke just to turn their faces to the wall and wait for death. So it may be up to the carer to give the patient reasons to live and one of the most effective of these is the belief that someone is genuinely concerned.
If, somehow, the carer has succeeded in really grasping what the patient is going through in really getting inside the patient s mind and if the patient understands this, then much will have been achieved. Failure in this will probably lead to misunderstanding, perhaps resentment and bitterness and even a permanent blighting of the relationship.
The mind of the victim
Stroke is a devastating calamity, occurring usually when the person concerned has reached maximum earning capacity, and may have begun to look forward to the rewards of a lifetime s hard work. Instead, there may have to be a radical alteration in life-style, in social and economic status, earning power, future prospects and capacity for human relationships. Professional or business activities, which have been of absorbing interest even of central concern may have to be abandoned, and hobbies and sports may be impossible to pursue. Social activity may be seriously impeded and artistic and cultural interests cut off. Small wonder, then, that grave damage should be done to the mind of the victim and that the whole psychology should be altered for the worse. It is not surprising that stroke causes depression sometimes suicidal depression.
Almost always, if the victim is a family man, he will have been secure in his position as head of the group. Even to those who do not often think about it, their status as undisputed leader and provider is an important one and the loss of this status is demoralising. Often it will be necessary for this role to be taken over by a wife or by some other member of the family and then decisions will be made which may not be to the satisfaction of the patient. Commonly, because the patient is unable to communicate, wrong assumptions are made about the degree to which he is able to understand what is going on. When this is so, frustration and anger may be extreme.
It is often assumed by relatives that apparently petty, child-like and hostile behaviour is just the result of brain damage. To some extent this may be so, but it should be remembered that much of the behaviour of the stroke patient is a perfectly natural response to what is an intolerably painful situation. And if, instead of sympathetic understanding, there is resentment by the family at lowered income and the need to do menial tasks for the patient and this resentment is reflected in the attitude, then a very unhappy state of affairs is inevitable one in which the patient will react with opposition, complaint and even savage aggression.
Depression is easily understood and is usually a reaction to the circumstances. The feeling of uselessness, the loss of self-esteem, the frustrations and the inability to communicate, inevitably lead to depression. Depression is especially common in those people who remain in full possession of their mental faculties but who are unable to speak or communicate in other ways. And it is more likely to affect those who, before the stroke, were of a gloomy and pessimistic nature than those who had a naturally cheerful disposition.
When depression is a natural consequence of the patient s awareness of the catastrophe, it is called reactive depression and it is identical to what would happen to someone who had not suffered a stroke but who had to put up with the same degree of life damage. Because the damage to the brain functions is always greatest at the onset, depression does not usually start immediately after the stroke, but generally comes on several weeks, or even months, later. If it doesn t occur at all then it is a rather bad sign, because it suggests that the patient doesn t really understand what is happening. Obviously, a person who shows reactive depression to a stroke has retained considerable intellectual power. So, although it is upsetting to the relatives, it should be regarded as an encouraging sign, indicating that the essential function of understanding is largely unimpaired.
Depression shows itself in a number of ways. Commonly, the patient seems to turn inwards and give up all attempts at communication. There may be refusal to listen even when matters of great importance are being discussed. There may be a general failure of cooperation, even in such things as eating and excretion, and, in particular, there may be unwillingness to go along with attempts at rehabilitation.
If there is a strong element of frustration associated with the depression, the effect may be very serious and attempts at suicide are not unknown in such cases. Well-meaning and persistent attempts to try to force the patient to perform tasks which were formerly easy, but are now almost too difficult, may lead to gathering frustration, resentment and anger and a profound depression. This situation may progress to an emotional crisis what used to be called a nervous breakdown with weeping and aggression and an obvious wish for total withdrawal from the humiliating demands of the would-be helper. This kind of acute breakdown of motivation will usually last for only a few hours but may, occasionally, last for days. Ideally, such crises should not occur and when they do, they may imply a failure of communication.
Persistent depression can interfere seriously with rehabilitation and, along with fear, a sense of hopelessness and a lack of purpose, should be avoided, or strongly combatted, if possible. Negative outlook is fostered largely by faulty attitudes in those looking after the patient. Stroke patients usually understand much more than they are able to indicate and can think much more clearly than might be inferred from their behaviour. An appreciation of this and a determination to allow them to do as much as they can for themselves and, indeed, to exercise as much control as possible over their own affairs, is the surest means of combatting depression.
It is difficult to know how far emotional instability, which is so common after stroke, is simply a reaction to the disaster a perfectly normal grief response to the loss of life-quality or how far it is caused by brain damage. Stroke patients weep a lot but some also laugh more than is appropriate or seemly. Crying, in response to a reminder of what he or she was, or was once capable of, is probably a normal response. But inappropriate tearfulness or laughter indicates a disorder possible quite minor of brain function. Fortunately, emotional instability usually clears up completely within a few months. But while it is present it can be distressing or annoying and serves no useful purpose. Note that a display of inappropriate emotion can often be stopped by directing the patient s attention elsewhere and the attempt should always be made.
The effects of stroke are so complex that you can t always be sure that the emotion displayed is actually being felt. The patient may show all the signs of enjoyment while being miserable, or manifest furious anger while not actually being angry at all. The signs of emotion are usually taken at face value and it is very difficult not to react to them in the normal way. This is especially so with emotions such as anger which seem to threaten us. So, unless unusual patience and forbearance are shown, there will always be misunderstanding and unnecessary trouble. To someone trying only to help, an aggressive response is always painful.
The situation is not helped if the spouse usually a wife thinks that she is guilty of bringing about her husband s stroke by her demands financial, social, even sexual. This is a common reaction among the wives of hard-working, successful men who suffer strokes. Such a reaction is understandable but illogical. Strokes are not caused by hard work, but by a basically stroke-prone personality, a lifetime of body abuse by over-eating, inadequate exercise and smoking, and by the inheritance of genes predisposing to arterial disease. The tendency to build up stress by engaging in high-pressure, competitive work is not likely to be the result of a wife s urging, but will almost always be a constitutional quality.
Hostility to other people, especially if constantly repressed, is, as we have seen, a stress factor predisposing to arterial disease, but even if a wife recognises that this might have been the cause of her husband s illness, she can hardly blame herself for that.
Worry about Sexuality
A major cause of mental upset is the fear of the loss of sexual power. Often, this fear is without foundation, as many who have suffered even quite severe strokes remain physically capable of effective sexual performance. But sexual ability is so sensitively affected by the state of mind that a stroke is almost bound to diminish sexual power through its damaging effect on the patient s own sense of physical and social worth. Once this mechanism is understood, confidence in sexual capacity may begin to be restored.
This important subject is dealt with in Chapter 8.
This is a very difficult problem and one which may cause much unhappiness. The stroke victim may be a person of wealth or influence, accustomed to wielding power. Major questions may arise when such a person is thought to be no longer competent to discharge legal rights responsibly. The extent to which speech can be understood and rational decisions made are often questioned in such cases. Inability to recall the names of objects or people or to express any concept in words, often leads to a strong presumption of lack the necessary legal responsibility to manage personal and family affairs. It is very difficult to assess the intelligence of a person when the usual routes of communication are blocked.
But it is important to remember that most stroke patients who are aphasic understand much more than they are able to show, and have a greater ability to think than is apparent. The inability to communicate does not mean that nothing is going on inside the patient s head. Indeed, many stroke patients who are almost completely uncommunicative are experiencing a rich, if somewhat depressing, intellectual life. Should you fail to appreciate this, and act towards such patients as if they were mentally defective, the result will be a deepening of the depression and a tremendous impulse to hostility.
So stroke patients should always be given the benefit of the doubt and should be assumed, until it is proved otherwise, to be capable of normal mental activity. Of course, experience may show that this is not so. If decisions are made which are obviously at variance with common sense, there are grounds for suspecting that the patient may not have legal competence. But you must be extremely careful not to reach a conclusion on inadequate grounds.
Many stroke victims, even those with severe aphasia, are perfectly capable of managing their own affairs, and are entitled to do so. When questions of inheritance arise, disappointed relatives, aware of the contents of a new will, may be tempted to seek a remedy in trying to have the testator declared legally incompetent. In this event, the stroke victim is entitled, at the very least, to skilled medical and psychiatric assessment, and proper legal representation, before a decision is made.
Problems of Communication
One of the most distressing and frustrating effects of stroke it that way it can cut the communication between the thoughts and emotions of the victim and the minds of other humans. Here is a typical case:
Sense shut in
The door of my consulting room was open and the nurse outside was talking to the patient as she might talk to a small child. When he was wheeled in his face was working and he was trying to speak.
A-ab...a-ab, yes, a-ab... was all he could manage.
I don t know what was in his mind but I knew that the Commander was a cultivated and educated man, that his intelligence was unimpaired, his memory barely affected and his interest in scientific and artistic matters keen.
The nurse was a kindly, sensible girl who would normally have been entirely respectful. Yet, talking in a slow, loud voice, as if he were deaf, and using language appropriate to someone with a mental age of about four, she had been going on about what a naughty boy he was to let his right hand fall into the spokes of the wheel-chair. I wondered if he were choking with rage inside, or whether he had now learned to accept this kind of thing philosophically. To get the message across to the nurse indirectly I started to talk to the Commander about the disaster of the space shuttle explosion which had occurred a few days before. He listened intently, his eyes fixed on my face, and nodded appropriately. It was clear that he was grateful.
Why do we treat stroke patients in this way? The nurse s attitude was obviously determined by the extent to which the patient could communicate with her. Although people s appearances influence us a good deal, it is essentially the quality of their minds which cause us to react to them in a particular way. But if their minds have no ready access to us, we are apt to treat them as if they were mindless. The Commander, deprived of his habitual channels of communication speech and facial expression existed for the nurse only as a rather clumsy and helpless individual, who could not even thank her for what she was doing for him. He could write, but being paralysed in his right side, he had to depend on his left hand and writing was very awkward.
The nurse was well aware that many stroke patients have suffered much more serious functional damage than just one-sided paralysis and loss of the ability to speak. She knew that many also have a severe defect of understanding and that some of them, although able to talk freely and fluently, don t make any sense. She knew that many stroke patients are irritable and bad-tempered, many are withdrawn and uncommunicative, even if they are able to speak, and that many are so wrapped up in their own distress and resentment that they can t concern themselves with anything else. What she had not perceived was that, frequently, this kind of behaviour is precisely the sort of response you would expect from someone who is being treated in an inappropriate manner and who is incapable of pointing this out. Perhaps it was because she had so often had to deal with patients with whom no sort of communication was possible that she tended to treat them all in this way.
The cause of aphasia
About one stroke patient in three suffers some damage to the function of communication, particularly if the right side of the body is paralysed. The right side of the body is controlled by the left side of the brain and it is in the left half of the brain that the power of speech, and all the other faculties concerned with communication, are normally situated. So cerebral ischaemia or haemorrhage involving the right half of the brain produces a weakness of the left side of the body but would not normally affect speech. The great French scientist Louis Pasteur suffered a severe right brain stroke but went on to make one of the most important advances in all medicine the discovery of germs.
In a very small number of left-handed people, the right half of the brain is dominant and if such a person had damage to the right half of the brain, speech would probably be affected.
The Commander s case was a little unusual in that the damage to the speech area in the left side of his brain was confined to a comparatively small segment concerned only with the mechanical aspects of speech. He knew exactly what he wanted to say, and the precise words with which he wished to express his thoughts; his ideas were fluid and appropriate and sometimes they were bursting to get out. But when he tried to speak, the only sounds he could make were meaningless noises. He was a quick-minded man who had been capable of clear and effective expression and suffered great frustration in trying to converse by such means as answering yes or no questions. I had watched him practising left-handed typing on a laptop computer with a word processor program, to improve his communication.
The Commander had actually suffered more subtle damage than simply one-sided paralysis and loss of the power of speech. Examination showed that if, having covered his eyes, I moved one of his fingers or toes passively into a new position, he would be completely unable to say in which direction it had been moved. Likewise, if a small object, such as a coin, were put into his hand and he was encouraged to try to identify it by feel, he would be unable to do so. Happily, with the passage of time, and by dint of sheer, stubborn determination, the Commander mastered his word processor (although he always had to look at his fingers when typing) and went on to write a book on Naval Intelligence in World War ll.
Types of speech defect
Speech defects are a little more complex than so far indicated and the speech centre
can suffer various types of damage. In the most general terms, speech defect can be divided into two categories. On the one hand, there may be a defect in the ability to understand speech, so that normal expression is impossible. On the other hand, although understanding may be perfectly normal, the central control of the breath, the mouth cavity, and lip and tongue movement, may be defective so that the coordination necessary for normal speech is impossible. Quite apart from these defects, the muscles used for speech may be weak. Paralysis of one side of the face is very common in stroke and, inevitably, the muscles around the mouth will be affected causing slurred, puffy speech. This kind of speech defect is basically different from that caused by a defect of the central, nervous control of the function of speech.
There may be loss of the ability to name familiar objects or to understand the meaning of words. There may be actual word deafness, or loss of the power to string words meaningfully together, so that speech becomes a sequence of unrelated words. The patient may be unable to originate speech but may be able to repeat words spoken by others. Worst of all, there may be a total loss of all the communication functions, so that the patient neither takes in nor gives out any information. This is a tragic situation in which the individual is, so far as we can judge, wholly cut off from the outside world. There is no way of knowing what such an experience can be like, but there may be some comfort in the thought that, in all probability, there is a dampening of consciousness so that suffering is minimised. Those who recover from such a situation seldom have much recollection of what it was like.
Assessing the damage
It is important for a relative or spouse of a stroke patient to find out as soon as possible what is going on inside the patient s mind. A realistic assessment of the severity of the damage must be made to discover how much insight the patient has into the situation. To this end, effective communication, if this is at all possible, is vital. A failure of communication will be a disaster, both for the patient and for the carer. Understanding what the stroke victim is going through, identifying, and, above all, trying to make sure that the carer s concern is understood, will do more for morale and motivation towards recovery than almost anything else.
Effective communication may take some time and it may be difficult to decide how much succeess is being achieved. The carer should prepare for the worst but act as if assuming the best. There should be no baby talk and no patronising attitudes. Normal behaviour talking normally about normal subjects and about the illness is best. Deliberate, slowish speech, without shouting is helpful. Short sentences with pauses will give time for assimilation. But, as soon as possible, the carer should try to establish whether or not this is necessary.
A channel of communication must be established as soon as possible a yes or no code of nods, head shakes, hand pressure, etc and tested regularly. If, at first, there are inconsistencies, these may well resolve in time. For instance, the patient may, initially, signal, or say, yes when no is meant, and may not even be aware of it. But the probability is that the patient is aware of the error, and signs of severe frustration and annoyance may be evident. The majority of stroke patients get back a considerable faculty of speech but the degree of recovery is very variable and the recovery phase may be a period of grave hardship.
Some of the effects of stroke are obvious the inability to move one side of the body, the loss of feeling in the skin, the loss of speech function, the incontinence, and so on. But other effects are more subtle and tend to be concealed and it is important that the carer should be aware of the more important of these. Indeed, it s only the carer who is likely to be in a position fully to assess the change. A relative will have more time to devote than medical staff and will probably be able to find out a lot more than the doctor. Even more important, the trouble taken in doing so will mean a great deal to the sufferer. Patient and careful investigation will be necessary, but the trouble is likely to be rewarded.
However, attempts to assess the situation should not humiliate or embarrass the patient. The attempts should be private and should be clearly explained. As soon as something has been learnt of the state of the person s mind, reactions should be adjusted accordingly. The patient must not be forced to respond to trivial tests over and over again as this will serve no useful purpose and will only annoy.
Apart from speech function, other things to consider are:
The state of the reasoning power.
The state of the memory.
The ability to recognise or name objects.
The awareness of the function of objects.
The ability to read and to understand what is read.
The ability to write.
It is important to recognise that the loss of the ability to perform learned physical skills, such as writing, may be quite independent of physical paralysis. Obviously, paralysis will make certain actions impossible, but stroke can deprive the patient of skills such as brushing the teeth, playing a musical instrument, driving, etc, even if the muscles used for these skills are still capable of functioning.
How to assess the mental powers
As speech defect can be, and often is, entirely independent of any change in the mental status it must not be assumed that because the patient can no longer talk there has necessarily been some mental deterioration. But it is important to try to find out. Hasty conclusions must be avoided. A clear distinction should be made between memory loss and loss of reasoning power and remember that the ability to name or recognise objects can be damaged by stroke although the mental powers, in the broader sense, may be entirely unimpaired.
When the channel of communication has been made, it should be explained that, to discover the extent of the damage caused by the stroke, some tests are necessary. The patient should be asked if there is any objection. If the intellectual powers are unimpaired the patient will greatly welcome the chance to show it. If the mental powers are severely diminished, this suggestion will not be understood and is unlikely to cause distress.
The test is so arranged that questions can be answered by using a yes or no code, but if the patient can write, this will make things much easier. Even if only left-handed writing is possible this may be better than using a code. The test should be worked through slowly and conscientiously and a careful score kept. It may be repeated at intervals of several weeks to check progress of recovery. The following is a suggestion of the sort of questions to ask but these can be varied in accordance with the patient s previous knowledge.
Test of higher brain functions
Each correct response scores four points. Errors score nothing.
Ask the following questions.
1. Is the present Prime Minister called Callaghan, Heath, Blair, Major, Thatcher?
2. What year is it? (Start five years back)
3. Is it Summer, Autumn, Winter or Spring?
4. Is it morning, afternoon or evening?
5. Take 7 away from 93. Is the answer 90, 89, 87, 86 or 85?
6. Take 7 away from 51. Is the answer 47, 46, 45, 44 or 43?
7. What town/village are we in? (Give five alternatives, four wrong.)
8. What street are we in? (Give five alternatives, four wrong.)
9. What is the house number? (Give five alternatives, four wrong.)
10. Are you downstairs?
Get together a watch, a ball-pen, a pencil, a ruler, a table knife and a book. Hold up each in turn.
11. Is this a knife? (Score for correct answer of no )
12. Is this a ruler?
13. Is this a pencil?
14. Is this a watch?
15. Is this a ball-pen?
16. Is this a book?
Hold up the watch.
17. Is this for writing with?
Hold up the ball-pen.
18. Is this for cutting with?
Hold up the pencil.
19. Is this for writing with?
Hold up the ruler.
20. Is this for telling the time?
Hold up the knife.
21. Is this for reading?
Hold up the book.
22. Is this for drawing lines with?
23. What is your name? (Give five alternatives, four wrong.)
24. What is my name? (Give five alternatives, four wrong.)
25. How do you think you have done in the test? Well? So-so? Badly?
It would be wrong to think that this kind of test gives more than a rough indication of the percentage of damage to brain function, but it will tell you a great deal about the specific nature of the damage and is capable of providing valuable guidance. A score of one hundred indicates that the stroke has not affected orientation in time and space, has not grossly disturbed the reasoning power, and has had no severe effect on the memory.
Don t be unduly disturbed by a low score. Remember that progress and gradual improvement are the rule rather than the exception. And remember, too, that a person recovering from stroke will have good days and off days, so that performance may, at first, vary quite a lot. The test should not be done too often despite the anxiety of the carer.
The response to tests of this kind will help you to avoid the kind of unthinking and ill-informed impatience so often shown to stroke victims by those who don t really understand what is going on. Unfortunately, many stroke patients will be unable to cooperate in the testing in the early stages but a patient who is mute and unresponsive soon after the stroke may, some months later, be back at work apparently in full possession of all faculties.
Restoration of the power of speech
This is a major task, but one in which the devotion, love and patience of a carer or partner can be amply shown. It is not a job to be undertaken without skilled supervision and the primary responsibility for the management rests with the speech therapist who should be involved at the earliest possible stage. The success of speech therapy depends more on the patient, and on the severity of the damage, than on the knowledge and skill of the therapist and there are, regrettably, cases in which even the most devoted care will lead to nothing. But if the potential for recovery is there, the degree of success will depend considerably on the therapist and the carer.
A good therapist will be aware of the vitally important role the concerned partner can play in bringing about maximal recovery, and will always try to involve relatives and friends in the process. But it should be understood that, even under the best circumstances, recovery will inevitably be slow.
Factors affecting recovery
The older the patient at the time of the stroke, the worse the outlook. The level of intelligence, literacy and, to some extent, education will also affect the outcome. The inevitable anxiety and depression after a stroke will lead to lack of concentration and thus impede recovery. Damage to other brain functions memory loss, disorientation, visual disturbances, giddiness, and so on, will impose more problems and make the outlook proportionately worse. Impairment of understanding will reduce communication with the speech therapist but if therapy is delayed until a late stage, it is likely to be much less successful.
In a great majority of cases, at least some degree of spontaneous recovery of the faculty of speech may be expected. Most of the natural recovery takes place in the first four or five weeks and any recovery enjoyed after that is due largely to speech therapy. This may be true even if no formal therapy is provided. It has been found that many stroke patients, determined to communicate again, actually develop new ways of conveying information to others and that this activity contributes to recovery. One of the most important elements in promoting recovery is the patient s morale. Indeed, some experts have suggested that the whole benefit from speech therapy comes from the improvement in patient motivation resulting from devoted attention.
Whether this is true or not, there is every reason to believe that if the patient thinks that the work being done is half-hearted, casual or uncaring, there is unlikely to be much benefit from it. So it is important for those in contact with a stroke victim to maintain an attitude of expectant optimism and encouragement.
How to act towards an aphasic person
Aphasia has nothing to do with mental defect and patronising attitudes are deplorable. The carer should try to be normal at all times but it will probably be greatly appreciated if you speak a little slower than usual, with clear expression and simple language. Don t put too much into one sentence many aphasic people are easily confused by complexity. Time must be allowed for ideas to be assimilated. Every channel of access must be used. The carer should always supplement expression by gesture or any other available means. If the written word is more easily understood than speech, or if writing proves to be an aid to comprehension, then this should be used to communicate, however slow and tedious this may be.
When the patient is struggling for words, there is a strong temptation to finish sentences. This should be avoided the patient is as much concerned with getting the word out as with conveying meaning. The approach should be natural with respect for the patient s dignity.
Aphasia from the patient s point of view
One of the most common problems the aphasic person will have is a simple inability to find the right word. Remember how frustrating it is for someone who is not aphasic to try to recall a name, and then imagine what it must be like to have this problem for the majority, or even all, of the words you need. What the aphasic person has to do is to hunt for another word with the same meaning or to talk around it and find, if possible, an alternative way of expressing the same thing. This may be very difficult but the attempt must be made.
Even worse than this universal forgetfulness is the difficulty of producing the names of well-known objects. An aphasic may look at a telephone and be perfectly well aware of what it is used for may be perfectly capable of using it correctly but may be totally unable to associate the object with the word telephone . If asked what it is called, the response may be: It s for calling Michael. Even when a mental concept of the word can be formed, there may then be the additional difficulty of articulation.
Memory loss is not confined to words. All sorts of data may be submerged it is unlikely that data has actually been destroyed. In all likelihood the information is still present and there is always the chance that access will be restored. Information stored recently is much more likely to be inaccessible than long-held data. This is because material which has been stored for a long time will usually have been repeatedly recalled and used, and we know that this is the best way to improve the accessibility of stored information. An important consequence of this fact is that it is unkind to shift a stroke victim away from a familiar environment as this may cause great difficulty. The right place for a recovering stroke victim is at home, in familiar surroundings and associations and visited frequently by well-known friends.
Methods of speech training
Although the carer can do a great deal to help with speech training, and is in many ways the most important member of the team, the professional speech therapist has an essential part to play. Her first job is to make a detailed assessment of the degree of the defect and of the extent to which speech is affected by involvement of the muscles of the lips and tongue (dysarthria) as well as the speech and comprehension centres in the brain (expressive and receptive dysphasia). Having made this analysis, it is very important for the speech therapist and this is something all speech therapists recognise to ensure that friends and relatives, and especially the person chiefly responsible, are fully briefed on the particular difficulties and are then guided in the best way to proceed with the training.
Unfortunately, the therapist may decide that very little can be done. But even among those deemed least likely to recover, a remarkable degree of restoration of speech has occasionally occurred. You should never be too pessimistic the trend, in almost all cases, is towards gradual recovery and this may continue for weeks or months. A continuous improvement, should not, however be expected. More often, recovery seems to occur in jumps, with long periods when little improvement seems to be taking place. It is important to maintain, if possible, an attitude of confident optimism. This may be very difficult in the face of little apparent progress, but it may be an essential factor in maintaining the patient s motivation.
As is now clearly understood, communication problems often involve more than just speech difficulty. If language comprehension is severely affected this will, of course, make training additionally difficult. Happily, studies have shown that a defect of speech understanding is the problem most likely to resolve spontaneously, so this should not be allowed to cause too much discouragement.
Many different approaches to speech re-training have been developed and most of these have had some success. Approach varies from patient to patient and some experimentation may be desirable. Each case is unique and must be given individual attention, dictated by the therapist.
One very promising method of speech re-training is MIT melodic intonation therapy . The idea is based on the observation that some severely aphasic people, quite unable to speak a particular word or phrase, are able to sing it. Musical skills originate in the right half of the brain and, of course, aphasic people almost always have a defect in the left half. The therapist gets the patient to sing short phrases in imitation of her own performance, and then gradually increases the length and complexity of these phrases. No particular sense of musical pitch is required and some very odd droning noises come from some patients, with excellent effect.
An additional technique used in the MIT system makes use of the characteristic rhythm of the phrases being tried. As the therapist speaks or sings a particular phrase in a clear and rhythmical manner, the patient taps out the rhythm with a pencil. This precise rhythmical pattern is then repeated frequently by the patient, while tapping, and at the same time attempts are made to speak the phrase. The method depends on the principle that the sound of the rhythm, and even the movement of the hand to achieve the tapping, provide information about the phrase clues which are often sufficient to make the difference between failure to speak at all and the ability to articulate. Once the phrase can be sung, and then spoken, with the tapping, the latter is gradually withdrawn and eventually spontaneous speech becomes possible.
MIT has been used all over the world to help patients and has often been very successful but it is not of value in all cases of aphasia. Those best helped, as might be expected, are the people whose comprehension is well preserved and whose problem is essentially one of producing the required sounds and rhythms.
All methods try to make use of various avenues of communication. For instance, an attempt to understand speech will often be more successful if the spoken words are accompanied by successive pointing to the same words in print or writing, or to a relevant picture. It is not a good idea to try to convey the sense of words one at time or to encourage the speaking of single words. Short phrases are always better. Another channel of communication which has proved valuable as an aid to recovery is sign language. There are several sign languages and all can be useful. Although a person who has had a left brain stroke with speech defect will usually also have problems in using a sign language, trials have shown that some patients make real progress in restoring speech by using this method.
The more elaborate sign languages are often about as difficult to use as natural language, but one particular system, derived from the North American plains Indians and called Amerind has proved very useful both as an aid to recovery and as a practical aid to communication. Amerind can be done with one hand only a very useful feature for people with hemiplegia and is very simple with quite a small number of different signs. The meaning of most of them is fairly obvious and about three quarters of them can be understood without explanation or at least can be understood by non-aphasic people. Obviously, if Amerind is going to be used as a substitute for speech, it will have to be learned by the carer and other members of the family as well as by the patient.
Experience with the use of sign language has led workers to consider whether other methods of non-verbal communication could be useful. If the affected person can be made to learn the meaning of a range of abstract symbols which can be printed on cards or embossed on plastic discs, then communication will be possible simply by presenting these symbols. Oddly enough this idea started with attempts to communicate with chimpanzees using symbols attempts which were encouragingly successful. It has been shown that patients with severe aphasia, both expressive and receptive, can learn to use such a system to communicate.
Modern technology has much to offer the stroke victim, not least in the field of communication, and this is dealt with in Chapter 9.
Psychotherapy for aphasia
Stroke victims have major problems which no one could be expected to cope with in a state of relaxed emotion. Proper motivation is important in promoting recovery and control over the emotions is essential. The disturbance of the language function, alone, is enough to cause a major psychological upset, for speech and human communication are central to our human emotional needs. Except in certain rare cases where brain damage has led to an abnormal lightening of the mood, depression is an almost universal feature of the early weeks of the aphasic.
Unfortunately, conventional psychotherapy involves much verbal interaction between the patient and the doctor, with the patient doing nearly all the talking, and this, of course, is the very thing the aphasic patient can t do. Frustratingly, the aphasic person is longing desperately to make others understand what it is like to be cut off, in this way. For those capable of some degree of communication, however small, psychotherapy, especially in the form of group therapy, can be valuable in a number of ways. The opportunity to express, to a receptive and understanding person or group, the distress and the problems facing one, is, in itself, therapeutic.
Participating in group discussion, so far as possible under the guidance of a skilled psychotherapist, can bring several advantages. Some patients have discovered that a major part of their difficulty in communicating was due to unjustified anxiety that others would not understand them. Group therapy has enabled many to overcome the natural fear of making fools of themselves a fear which had previously been severely inhibiting.
Tranquillizer drugs acting on the emotions do not have a very large part to play in the treatment of aphasia, although if prescribed selectively by an expert, and used over a relatively short period, can help in some cases by relieving anxiety and depression and promoting a mood of optimism.
Stroke and the Sex Life
Sexuality is such a deep-rooted element in human biology that it affects all our relationships, intimate or otherwise. In close human associations, satisfactory mutual sexual expression leads to confidence, happiness and contentment. Sexual expression does not simply mean physical sexual intercourse, but includes all the effects of the partners awareness of the physical, mental and emotional differences between them. The sexual act itself is, or should be, an expression or demonstration of the feelings of love, appreciation, gratitude and solidarity experienced by the partners. In younger people, the purely erotic and sensory element may assume an overwhelming importance, but in a mature relationship sex can be directed outward so that the concern is more with the partner than with oneself. The resulting warmth and closeness may be one of the most important sources of contentment, and its absence a cause of great distress. Sexuality can also be used destructively, sometimes as a means of gaining power over the partner, and negative sexual relationships of this sort can damage the quality of life.
Sexuality in later life
We live in a society whose values are largely youth-oriented and in which a powerful emphasis is placed on sex. As a result, there is often an unthinking equation of sex with youth and vigour and a widespread assumption that elderly people are past sexual activity. Indeed, there is even the view that any form of sexual activity on the part of elderly people is intrinsically disgusting. But sexuality is so fundamental in human nature indeed in all mammalian nature that it is not going to go away. Sexual interest is as perennial as life itself. Older people, for reasons of discretion, dignity, patience and an awareness of their declining attractiveness, will tacitly conform to this stereotype and will rarely protest their rights. In this way, the myth of elderly sexlessness is perpetuated.
But elderly people are not sexless. Many older people are more aware of their sexuality than they were when younger. There may, perhaps be less emphasis on the erotic elements and on physical beauty, with more concern for character and achievement. But the preoccupation, nevertheless, is with a member of the opposite sex and the emotions involved may be every bit as strong as those felt by younger people.
Age has other disadvantage particularly its effects on the physical ability to express sexuality. Men worry about their potency and women about their fading looks and it is true that physical sexual power declines gradually with age, especially in men. But the belief that there is an exactly corresponding decline in sexual interest is mistaken. The decline in sexual activity is more often because of loss of opportunity than because of lack of inclination. The belief that the menopause signals the end of a woman s sexual life is another common myth. in fact, the relief from the risk of pregnancy commonly leads to a new and more satisfying phase of the sex life.
Sexual feelings do not disappear just because a person has had a stroke and may be disabled. The need for sexual expression may even be greater after a stroke and this fact cannot be ignored. The aspirations, feelings and desires may be very strongly experienced even if there is no possibility of physical expression, and to ignore or be unaware of this may cause much harm to a relationship. On the other hand, because it is the state of mind that matters, a reduction in the ability to express sexual feeling physically may be less important than you might imagine.
An intensive study of the sexual problems of disabled people showed that over half of the large number of disabled interviewed had severe sexual problems, damaging to their happiness. And the more severe the disability the worse the difficulties experienced in obtaining sexual satisfaction. Many of these problems arose from defective mental and emotional attitudes towards sex and the disability. And many of the people interviewed were badly in need of advice, help and encouragement.
As in all human endeavour, it is the state of mind and the quality of the motivation which decree the outcome. Enlightenment, determination, courage are needed. There must be open and realistic attitudes to sex and the conviction that, even with disability, a full and gratifying expression of love through sex is possible.
The effect of stroke on sexual activity
There are several reasons why normal sexual expression may be affected by stroke. As we have seen, a stroke is a profoundly alarming and depressing experience which tends to turn people inwards and away from others. This reaction commonly involves a reduction in sexual energy, and severely depressed patients may even lose all interest in sex. The idea of self-image is also important in this context. A person who has suffered loss of physical capacity as a result of a stroke will often have a damaged body image and be unable to believe that he or she is still sexually attractive. If the healthy partner can make the sufferer feel that he or she is still important, accepted and desired as a person, all may be well.
There is a widespread belief that sexual intercourse is actually dangerous to a patient who has had a stroke, in that it may involve a risk of a further attack. The risk is very small and certainly does not justify abstinence if sexual feelings are strong. There have been a few cases, in men, in which a stroke has occurred during intercourse and, as you might imagine, people to whom this has happened are not likely to want to take the risk again.
The danger is mainly from the sharp rise in blood pressure during the male orgasm, but the same kind of pressure rise can result from a wide variety of causes, many of them unavoidable. Any strong emotion or sudden physical strain may raise the blood pressure and, since strokes do not recur every time this happens, it follows that the danger is not great. But it is sensible to try to take sex calmly. Men, especially, should avoid over-energetic sexual activity, leaving much of the work to the cooperative partner. The intensity of the orgasm, too, is to some extent under voluntary control.
Older men do not reach orgasm so easily and it is important to dismiss the notion that sex is incomplete or unsatisfactory without an orgasm. This is often merely a matter of pride, related to the significance of retained fertility. If the woman experiences orgasm this may often be a happy point at which to stop. It is deeply satisfying, to most men, to induce an orgasm in the partner. Remember that the phrase sexual intercourse implies a two-way process, literally a running between, in love .
During stroke, damage may be done to those parts of the brain concerned with sexual responses, but it is important not to make assumptions about this, as there are many other causes of loss of libido, some of which are remediable. Sensory nerve damage, too, can interfere with normal sexual sensation so that much of the physical satisfaction of sex is lost, with severe frustration or waning interest. It is most important for the healthy partner to be aware that skin caressing, on the side with no feeling, is pointless and may even be emotionally damaging. The partner must concentrate on the sensitive side. Actual paralysis need not be such a severe barrier to satisfactory sexual expression as you might think, particularly when the partner is well-motivated, loving and imaginative.
Stroke sometimes causes such a profound change in personality that a partner may feel that he or she is living with a different person often, although not always, a less pleasant one. This can certainly cause difficulties. It is not uncommon for the personality change to involve a much greater interest in sexual expression than before. This is sometimes directed away from home, and grave inter-personal problems, calling for great strength of character and tolerance, may arise. Medical advice will be warranted in such cases.
The effects of stroke may make the patient much less attractive than before. And, in cases where physical dependence is great, the need for the partner to provide constant bodily attendance may have a negative effect on interest in sex. Much depends on to what extent the patient retains the love, respect and affection of the partner and this, of course, will depend on the degree of mental change. You can t live indefinitely on memories of past attitudes and, regrettably, it may often be true that the stroke victim has become, in more ways than one, a different person . Such tragedies may have no obvious remedy.
Sexual potency after stroke
Fear of losing sexual pleasure is justified, but it is a mistake for a man, for example, to equate sexual power with masculinity and status as a male. The macho impulse dies hard and is rather primitive. Loss of potency can result from so many causes that it is very difficult, even after full medical investigation, to be sure of the cause. As a general rule, if the bowel and bladder control are retained, then the organic sexual function should be unimpaired. Erection and ejaculation can operate satisfactorily even if the lower part of the spinal cord is completely disconnected from the brain by an injury such as a fractured spine.
However, organic factors other than the effects of the stroke may be operating. For instance, if there is high blood pressure which needs to be treated, the drugs used may cause some loss of potency. Some of the more selective drugs used for high blood pressure are much less liable to have this effect, so the medication may have to be changed. Many stroke patients are diabetic and this is a fairly common cause of impotence in the male. Other drugs which may cause impotence are alcohol, barbiturates, sedatives such as Valium, drugs used in the treatment of cancer and Parkinsonism, Cimetidine, Lithium and various drugs used for depression and other mental disorders.
Age has an effect on sexual capacity and some degree of loss is entirely normal. Studies have shown that at least a quarter of all men of seventy or over have experienced a substantial loss of capacity, even in the absence of any organic disorder. This usually means an inability to obtain or to sustain a full erection, and this problem may call for more direct and positive genital stimulation than before. But, again, you must be wary of jumping to conclusions, for many such men have been shown to be capable of a full erection during sleep.
The principle cause of impotence following stroke, however, remains the psychological effect of the catastrophe on the victim. In most cases, the remedy is, literally, in the hands of the partner. The loving embrace, the caress, sexually stimulating touching and holding all potent symbols of caring and need are the best treatments for psychological impotence. Anxiety must be dispelled, relaxation and freedom of touch encouraged, humour promoted and patience enjoined. Failure must never be made a cause of overt distress.
Hemiplegia and sexual intercourse
The physical difficulties of sex after a stroke are a challenge which should be met by free discussion, if necessary with medical advice, and a determination to achieve mutual satisfaction to the fullest possible extent. Full sexual intercourse may be impossible, but that is no reason for assuming that sex is impossible. Men must remember their partners needs and appreciate that, for most women, sexual interest and desire are hardly affected by age and certainly not by the menopause.
Mutual concern is vital to success. The most powerfully erotic stimulus to your own sexuality is the sexual excitement of your partner. Unless the stroke patient is so severely disabled as to be virtually motionless, he or she must remember that his or her own contribution is essential. This is very much a case in which sound investment pays good dividends.
The variety of sexual positions available to the hemiplegic person is, of course, limited. if the disabled person is the man, it will generally be necessary for the woman to take a more active part than she may have done in the past. She may find it necessary to become the dominant partner and may do this both in a physical sense and also by taking the initiative in love-making. This can also add variety and interest.
If the woman is the stroke victim, imaginative and thoughtful amendment in technique may be necessary. Prudery and hang-ups about discussing and changing methods and positions can deny much-needed satisfaction and comfort. The range of positions is far wider than most people imagine even for those suffering a physical handicap. A slavish restriction to the missionary position may be the cause of much unnecessary deprivation. There is no reason, nowadays, except for shyness or inhibition, why anyone should not have access to a great range of information on the subject of sex. Great numbers of books have been produced and if you are bashful you can order them from a book club or catalogue.
Prudish attitudes to masturbation should, if possible, be dispelled as this natural activity is a means of achieving sexual satisfaction for those so disabled as to be incapable of full intercourse. Masturbation, skilfully performed by a partner, can be an eloquent expression of love and regard. Oral sex may also be important, remembering that respect for the partner s attitudes to this is essential. When oro-genital sex is acceptable to both, it may prove an effective solution to an otherwise insoluble problem.
The whole area of the skin is potentially sexually sensitive and whether or not it becomes so depends largely on the human sensitivity and enlightenment of the partners. Those who hasten to immediate genital contact, or engage in sex fully clothed, are not only omitting an essential stage in the process of arousal but are also denying themselves a great deal of pleasure.
Imaginative and patient touching, holding, stroking and caressing can form the basis of greatly heightened sensuality. Experiment, open-mindedness and a willingness to make your response clear, are necessary. No part of the body should be considered taboo and often it will be found that tactile stimulation of the most unexpected areas may give intense pleasure. Interestingly, those areas most likely to be avoided by the prudish, may be the most productive of pleasure and a sense of intimacy. Unequivocal attention to parts of the body secretly thought to be uninteresting or unattractive to the other, may be very good for the ego and, in turn, for the attitude towards the partner.
But never forget the warning about the importance of the awareness of sensory loss. Remember that the stroke patient with loss of sensation on one side often considers that the unfeeling part of his or her body does not belong . A little absent-mindedness, and your partner might actually think you are making love to someone else. Many disabled men who have suffered reduced libido require stimulation to be applied with both sensitivity and continuity. It may be difficult for the man to convey this to his partner, for any attempt on his part to guide her may have a negative effect.
Discussion is essential. Skin stimulation, when effective, will produce at least some degree of erection and this must be cherished and promoted by a progress to direct, tactile stimulation of the penis. All too often, a promising erection may be lost. Often it will be necessary for the woman to sustain the penile stimulation right up to the point of insertion and, even then, any fumbling or delay may be fatal. The method of penile stimulation must also be skilful and acceptable to the man. There is no substitute for frank discussion and demonstration.
Inadequate erection is common, but this need not prevent rewarding sex. The strongest stimulus to erection is the feeling of penetration. One way or another this should be achieved even by limp stuffing ! Vaginal lubrication is important and is in itself strongly stimulating to the man. If nature needs some help, try K-Y jelly. This has become so popular for this purpose that the manufacturers feel obliged to print on the tube, This is NOT a contraceptive ! Every pharmacist sells it and it is very safe.
Sexual positioning is dealt with comprehensively in other books, but imagination is cheaper. The principles are that nothing is unnatural except that which causes pain or distress and that variety is the spice of loving. Within the limits imposed by disability, the greater the variety the better.
Getting further help
It is surprising how much can often be done for stroke patients with sexual problems if the barrier of shyness or embarrassment can be overcome and advice sought. This is most easily achieved by applying to an organisation specifically concerned to deal with these problems in a matter-of-fact manner.
Check the Internet. You will find plenty advice on this in Chapter 11.
Technology Can Help
Technology can help stroke patients in a number of different ways and many ideas involve very low technology indeed. It can help in rehabilitation, in compensating for various forms of physical disability, in providing entertainment not otherwise available and, above all, it can help in communication. But first, a mention of one or two very useful gadgets which can make life a great deal easier for those who have to manage with one hand.
Kitchen aids for hemiplegic people
There has been a lot of progress in the design of special implements for one-handed people but many useful gadgets, not designed with them in mind, are available in hardware stores. It is surprising how easily some domestic implements can be adapted to hemiplegic use. There is, for instance, a very handy wall-mounted gadget for taking off screw caps. This uses a strong, adjustable composition plastic strap which can be tightened round almost any size of screw cap. It is fixed to the device at one end and free at the other. Once the strap is applied, the bottle or jar may be turned with one hand. The same gadget can be used for other holding purposes.
Small vices are available which can be attached to the edge of a table and which have holding clamps adjustable to any position. They are popular with people doing fine work and are sold by firms dealing in electronic parts for constructors. Other useful aids are wall-mounted can openers, some of them electrically operated; electric carving knives; and electric irons which have no cord to get in the way, but which pick up current and boost the heat each time they are laid down on the special stand. Many such devices designed for the able-bodied are of special value to the disabled. Further ideas are given in Chapter 12, especially in the section on gardening.
An immense amount of thought and care has gone into developing devices specially designed for people who can only use one hand, and all kinds of ideas have been developed. Before considering these in detail, some further useful kitchen aids should be mentioned.
Many simple devices to hold things like potatoes and apples, for preparation, are possible. For instance, if a you can get someone to drive a few clean two-inch nails through a board, you can stick fruit or vegetables on the spikes and cut one-handed. The same board may have two short pieces of beading to form a raised edge at one corner so that slices of bread can be secured for applying a non-dairy spread (people who have had strokes should never eat butter). Such boards are even more useful if fitted with rubber sucker feet to prevent them from moving. Special knives are available that work on the rocking rather than the sawing principle, and these may also be helpful while eating. Plate guards can be clipped on to plates to prevent food from being pushed off. Non-slip mats, pan holders, even suction cups can be very helpful to stabilize objects in the kitchen so that they can be used one-handed.
There is an ingenious egg-cup with which you can lift an egg out of the boiling water with one hand and secure it firmly for one-handed eating. Some of these egg-cups have a rubber sucker base by which they can be firmly held on a smooth surface. There are saucepans with magnetic feet to hold them firm while the contents are being stirred; levers for turning taps, keys or latches; electric plugs with handles on the back which make them much easier to insert and remove. The are no end of helpful gadgets.
Such aids can prevent disabled people from developing a sense of helplessness or uselessness. It is critical to contentment and peace of mind to be able to contribute usefully in the home and be spared the sense of being a burden to others.
Help in the sitting room
People whose movements are restricted are very dependent on the telephone for maintaining essential contact with relatives and friends. A very useful device in this context is the telephone shoulder rest into which the receiver can be clipped so that the hand is freed. The need to hold the receiver can be dispensed with altogether by using an instrument incorporating an amplifier and a loud-speaker so that you can talk and listen some distance from the phone. Advantage can also be taken of the phones with memory systems which store twenty or more commonly used numbers, automatic SOS calling by pressing one button, and facilities which will automatically recall an unobtainable number. All these advantages are commonplace and can be obtained cheaply. The new telephone can simply be plugged in, in place of the old.
For people with artistic inclinations it is even possible to make some use of the paralysed arm. The forearm is laid in a light plastic gutter support which has four ball-bearing runners on its under side. The arm is secured with two Velcro bands and the wrist is tilted back a little into the proper anti-spasm position. But the real point of the gadget is that it has a holder at the level of the fingertips for a pencil or a paintbrush or some other tool. Because the gutter can move freely over any smooth surface, a hemiplegic person who retains shoulder movement and this is very common can, with difficulty, write or paint or perform other useful tasks with the weak arm, even if the hand is entirely useless.
This is the modern version of an earlier system of suspension of the arm on strings and pulleys and is simple and cheap. Some people prefer to have the support for the weak arm suspended on balanced cords, but this requires some sort of overhead structure and limits mobility. Frames on castors can be obtained which can be placed close behind the chair. From these are suspended the supporting cords and either springs or counterpoise weights may be used to cancel the effects of gravity on the paralyzed arm. Stroke patients should always be encouraged to engage in activities made possible by devices of this sort.
Many patients have difficulty in getting out of comfortable armchairs, and chairs with mechanisms for raising the sitter into an almost vertical position are invaluable. They may be electrically operated or use a simple tilting seat principle. The Rolls Royce versions of these chairs also enable the person to recline into a lying position and may even have electrically operated leg rests. There are comfortable chairs with gliders efficient castors which make it easy for them to be pushed about the room even under the full weight of the stroke patient. And, for those who wish to use a tray across the knees, there is an ingenious bean bag table of which the supporting part moulds itself to the knees and thighs while the upper, plastic-covered surface can easily be set horizontally or at a tilt, as required.
Help in the bathroom
Hand-grips can be of enormous value throughout the home. Carefully placed, and firmly attached with rawlplugs, suitable metal grips provide a cheap and wonderfully helpful aid. They are easily secured to almost any surface and they should especially be considered in the toilet and bathroom where they might make the difference between independence and humiliating reliance on others.
The problems of the hemiplegic person in the bathroom are important. Getting into and out of the bath may pose so many problems that it is often better to resort to a secure bath board set across the width, on which to sit while washing. But it must be entirely secure. Such boards must be designed so that they can neither slip into the bath nor turn sideways. Used in conjunction with a hand-held shower with rubber attachments for the bath taps, the daily all-over wash becomes a practical possibility with a gain in morale. Lost soap can be a problem and soap on a rope is a good idea. Back-scrubbing is difficult even for someone without hemiplegia, and a long-handled brush is useful. A non-slip bath mat is essential. If you can afford it, you can buy a hoist and bath lifter that will gently lower you into the water and, when you are finished, hoisted you out again.
Shaving with the left hand can be difficult, but skill will come with practice. Men and women who are accustomed to razors may find it an advantage to switch to electric shavers which can easily be used with the unaccustomed hand.
Toilet privacy is, of course, greatly valued, and hemiplegic patients unable to attend to themselves will bless the designers of the automatic WC which can flush-wash the nether regions with warm water and then apply a blow of hot air to dry the bottom a sort of super-bidet. There are various other appliances to facilitate cleansing. There are even gadgets which enable menstruating women who can t insert tampons to do so. Commodes are very convenient for those who can t safely go far from the bed. These come in a bewildering variety of designs and some incorporate a chemical system to sterilize and deodorize the contents after use.
Aids to getting about
Wheelchairs, leg braces, crutches, walking frames, quadripods and ordinary walking sticks can be of considerable value to those who can t manage without them, but it is a great mistake to adopt these aids prematurely while there is still the possibility of making it under your own steam. But there will be many who have reached the limit of their improvement, and aids to mobility can be invaluable for them. There are some important facts you should know about these aids.
These come in all degrees of sophistication and price. Many can be folded to fit into a small space such as a car boot or the limited space of a small invalid vehicle. Modern electronic control of battery power and developments in battery technology have greatly improved the design of self-powered wheelchairs so that steering and speed can even be controlled by moving a small lever with one finger. The battery can be charged at night simply by plugging into the mains, but a spare should be kept in case of failure. Powered wheelchairs use smaller wheels than self-propelled chairs and their tires are usually thicker and give a very soft ride. They come in three main types:
Those intended for indoor use which require smooth surfaces to run on and cannot negotiate even slightly raised obstructions.
Those for general purpose outdoor use, capable of travelling across rough ground and mounting kerbs. Many of these chairs are too wide and long to be used conveniently indoors.
An intermediate design capable of good indoor performance, but limited in difficult outdoor conditions.
With self-propelled chairs it is important to ensure that the tyres are always properly inflated and this is most conveniently done with a small mains-operated pump. If the tyres are allowed to go soft, the chair will require much more force to move it and the brakes may not work. Insecure brakes can be dangerous especially when the owner is getting in or out of the chair.
Aids to walking
Walking frames are made of very light alloy but are amply strong enough to bear the whole weight of the patient. Although they give excellent support they do not allow for more than very slow progress and great patience is needed. Walking frames tend to get in the way of the feet, and do not encourage normal walking. If weight can be taken on the arm on the affected side, elbow crutches should be substituted as soon as possible.
Elbow crutches can be very useful, but should also be looked on as a transitional aid to mobility. They can be used in a number of ways. People who are shaky and insecure should start with four point walking. The four points are the two feet and the two crutch tips and this gives high stability. Only one foot, or one crutch moves at a time and the sequence of forward movement, starting with the two crutch tips well ahead of the feet, is: right foot, left foot, right crutch, left crutch.
From this secure but slow sequence the patient can graduate to three point walking in which the weight is taken on the sound leg while both crutches are moved forward together. The weight is then taken on the crutches while the affected foot is allowed to swing forward. If the foot on the paralyzed side can t take weight at all, there is another form of three point walking. Here the two crutches go forward together and the weight is taken on both while both legs swing through. In two point walking, the right foot and the left crutch move forward together, then the left foot and the right crutch together.
Crutches can cause problems on the stairs and great care is needed to place the crutch tip well back from the edge of the tread. A crutch slipping off a tread can lead to a serious accident. Placing the crutch tip well back tends to make one lean forward and this is safe when going upstairs, but should be avoided when coming down. It is best to make full use of the banister rail, for support, and it will be easier when this is on the weak side so that one crutch can be used on the strong side with the second crutch tucked under the arm. If the banister rail is on the strong side when coming downstairs, it may be better to turn and come down backwards so as to have the benefit of the fullest support. If children are about, watch out for toys or other small objects left on the stair treads and be especially careful if the nap of the carpet tends to catch the tip of the crutch.
Quadripod walking sticks are especially useful if there is difficulty with balance. The four little feet give a stable support on which the patient can lean and, once the balance is sure, the stick can be swung forward for walking. Some similar models are made with only three feet, but these are not to be recommended as they are much less stable. The quadripod stick is helpful as a transitional device between crutches and the ordinary walking stick, but, again, the area of the base, while good for balance, can obstruct foot movement.
Of all aids to mobility, the ordinary walking stick is certainly the most useful, but this, too, should be discarded as soon as it is possible to manage without it. It is important that the walking stick should be the correct length so that the posture may be as upright as possible, with neither forward nor sideways lean. The length should allow a slight bend at the elbow. Some light alloy walking sticks are adjustable, but these must be non-collapsible. A firm rubber tip is desirable as is a comfortable grip.
The best way for a hemiplegic person to use a walking stick is to hold it in the hand on the strong side and to follow the natural swing of the arm so that the stick is forward as the weak foot comes to the ground and the weight of the body can be shared between the stick and the weak leg. To begin with, most of the weight will tend to be taken on the stick, but you should always try to share the weight so that the weak leg is exercised and heavy limping is avoided. If the arm on the weak side is strong enough to take the strain, an alternative way is to use the stick as a sort of splint for the weak leg, holding it close to and parallel with the weak leg so that the two come to the ground together. In this way, the stick reinforces the weak leg.
A lot of emphasis has been put on the importance of positioning to avoid spasm and the resulting abnormal positions of the limbs. But in spite of the best of intentions, many people will end up with foot drop and inversion so that the toes will tend to catch on the ground making natural walking very difficult. For these, some form of foot support may be essential. Various supports are available and it is seldom necessary to resort to the clumsy and ugly external metal braces of earlier years. Special footwear may be used to prevent ankle extension, or light plastic splints may be worn inside normal shoes. If calipers are worn to control foot drop, they must be carefully fitted and properly adjusted to the individual. Chafing of the longitudinal iron pieces against the leg must not be permitted as this may cause great discomfort or even, if there is sensory loss, ulceration of the skin.
High technology aids to communication
The plight of the stroke victim in full possession of mental powers, but unable to speak, is a dire one and any device allowing communication will be of great value. Early attempts to aid communication were painfully slow and cumbersome, most of them involving some sort of letter board or word list on which the desired letter or word could be indicated by pointing. This was dreadfully slow and frustrating. Today s communication aids are becoming ever more sophisticated and readily available. A major breakthrough occurred with the development of cheap speech synthesisers and these now form the basis of most modern communication systems for people who can t speak.
Speech synthesisers have become possible as a result of the enormous increase in the amount of data which can be stored in the electronic chips called read only memories (ROMs). ROMs programmed with short word lists are now so cheap that they are commonly found in toys. These tiny chips can be used in two different ways. Either they can be stored with data corresponding to complete words, or stored with smaller packets of data corresponding to all the basic sounds (phonemes) from which words are made up. In the first case, the chip will have a vocabulary limited to the number of words which can be accommodated perhaps a few thousand. In the system using stored phonemes there is no limit to the number of words which can be produced, but, of course, the system must provide a means of deciding which phonemes are needed and then some way of stringing them together to make intelligible words.
In both cases the synthesizer uses a microprocessor to organize the way in which the required addresses in the ROM, in which the words or phonemes are stored, are looked up and the contents retrieved.
Clearly the system storing complete words is much simpler, and a communicator might consist simply of a word board, on which the required word can be indicated by touch or other means, the ROM, the microprocessor, a way of converting the digital data from the ROM into analogue signals, a low-power amplifier and a small loudspeaker. But such a system has limited use as only the words built in are available. The phoneme system, on the other hand, needs a computer with a fair amount of software to run it, and the input must be in a form which the person using the system can operating. A standard keyboard may not be practicable for a stroke-disabled person. If, as is common when there is speech loss, the right hand is paralyzed, input will be much too slow and it will not be possible to produce synthesized speech quickly enough.
A compromise between the two systems is possible. Using the phoneme system, the operator can, at leisure, put together desired words, phrases or even complete sentences, and then give each of these a code consisting of one or two letters. A two-letter code will cover seven hundred words, phrases or sentences, and each can be called up by pressing only two keys. This requires a good memory. In chapter 12 is an account of further advances which make it possible for a person who can only operate a single two-way switch to use a standard computer keyboard.
A phrase or sentence in synthesized speech can sound quite natural heard once. But as those who have heard Stephen Hawking expresing himself will know, it is the precise repetition of the same sequence of sounds, strung together in exactly the same way, which is unnatural. This aspect is being studied by electronic and acoustic engineers and, although it is perhaps too much to expect that the tones should convey appropriate emotion, at least some random variety in voice quality will be achieved.
An important advance has been made by researchers at the Institute for Perception Research in Eindhoven, Holland who have worked out a method of breaking down speech into smaller units than phonemes. These are called diphones and they give much more subtle control over speech synthesis than does the use of phonemes. Diphones flow together to give natural-sounding speech and about two thousand diphones can represent almost any spoken language. As with pictures, the smaller the elements making up the whole, the greater the detail and realism, and so it is with diphones. Patients may look forward confidently to ever more natural synthesised speech, and aphasic people, using such devices are likely to produce voices of better quality than before the stroke!
Computers for personal communication
A different, and in some ways more versatile, approach to communication is by way of the monitor screen. Personal computers are now so cheap and compact that this has become a reasonable and economical proposition for most people. If used only for direct communication, a printer will not be required and that will reduce the cost. There are many ways in which the computer revolution has improved life for people disabled by stroke. More of these are dealt with in Chapter 12, but here we are concerned only with the important question of communication. Graham Goodge s case shows how important this is.
How graham s life was changed
Graham had been unlucky at school. He was intelligent enough but didn t seem to get on too well with his teachers and, as a result, felt little encouragement to work. He spent a lot of time in class day-dreaming. He was an imaginative boy but paid very little attention to his studies and had left school, soon after the war, with three rather poor O level passes. He had tried various jobs such as working in an insurance office and a house agent s business but hadn t settled in any of them. He had even tried to sell household accessories from door to door. For a while he had a reasonably successful business repairing television sets but the growth of domestic prosperity and the popularity of the rubbish tip knocked the bottom out of the repair business, and Graham was unable to compete.
Things went from bad to worse, and for long periods he was on the dole, living a miserable and seemingly pointless bachelor existence with few friends and very little happiness. Finally, well into his fifties and deeply depressed, he tried to gas himself. But even in this he was unsuccessful. A neighbour smelt the escaping gas, kicked in the flimsy door to his apartment and dragged his unconscious body outside. When Graham came round it was to the realization that his suicide attempt had precipitated a stroke and that he was paralysed down his right side. Although his mental processes were unimpaired, he had completely lost the power of speech.
In the hospital he met a middle-aged widow, an attractive and lively part-time nurse, and, largely through her efforts, he regained the power of walking and they became friends. Some quality of resignation and helplessness in him appealed to her. Within a few weeks Muriel decided to give up nursing and devote herself to him, and they were married. For the first time in his life, Graham found that he had a motive for succeeding, but now he felt that there was nothing he could do about it. Above all, he wanted to communicate with her. He had so much to express, so much love and appreciation for her kindness and support, that it was torture to remain silent, able to express his thoughts only by scrawling awkwardly, with his left hand.
Graham had kept up his interest in electronics and, one day, when he was standing in a shop with Muriel his attention was caught by a computer display. Idly, he touched a few keys and when Muriel felt a gentle nudge and turned, she saw the words I love you, darling. On the screen. Then, with almost frantic haste, Graham was tapping out a message to her which he had been trying vainly to get across all morning.
The point was not lost on Muriel and she insisted on buying him a PC. It was the beginning of a revolution for Graham. Within a week he had set up his coms station by his armchair and had run a cable under the carpet to a second monitor screen by Muriel s chair. A tactfully quiet bleep made to sound on Muriel s monitor by pressing one of the control keys was the signal to attract her attention to the screen, and Graham would usually have the message already on display before sounding it. Muriel would turn, glance at the screen and answer in a manner as natural as if he had spoken to her audibly.
Soon he had mastered the word processing program and was becoming a skilled and rapid, left-hand typist. With this new ease of communication, his confidence and assurance grew and he began to study programming. His first major development was a way of speeding up, even further, the rate of communication with his wife. In a matter of days he had written a program which established a large glossary of common phrases in the computer s memory, each one of which could be recalled by a two-letter code and displayed on the monitor screens. So now, his conversations with Muriel were able to proceed at a rate not far short of slow speech.
Muriel had suggested that Graham should join The Stroke Association (see Chapter 11) and it occurred to him that his experience might be of interest to other stroke patients, so he started typing a short article for the CHSA newspaper, pointing out the value of the microcomputer as an aid to communication. To his satisfaction it was accepted for publication and this encouraged him to consider the possibility of further writing. Several other computer programs now followed and Muriel began to be interested, so he started to explain Basic to her.
The need for economy and clarity in his explanations proved to be a good discipline and, one day, Muriel said, I hope you ve been saving these explanations.
Why? he asked, on the monitor.
They re very good. Seems a pity I m the only one reading them.
Thus was Graham Goodge launched on his one-handed career as a writer on personal computers. It was the height of the early home computer boom and publishers couldn t get enough material to satisfy the enormous public demand for books and articles on the subject. Graham sold two manuscripts and with the advances was able to upgrade his coms station and buy a good laser printer. He was now proud of the quality of his manuscripts and further sales soon justified the cost of a photocopier. Muriel was spending more and more of her time helping him. At one stage she considered learning to type but, knowing how much it meant to Graham to be producing his own manuscripts, said nothing.
If could use right hand for shift key, typed Graham, Would be lot faster.
Well, why don t you?
Muriel had seen stroke patients in the rehabilitation department of her hospital sitting under a kind of frame from which were suspended balanced cords to support the paralysed arm, and she suggested something of the sort to Graham.
If you re only going to use it for the shift key, that should be easy enough.
OK typed Graham.
The outcome exceeded both their expectations and Graham found that, with his right hand supported in a suspended gutter and the fingers carefully positioned, he was able, by dipping his right shoulder, to get his hand so placed that he was able to use his right thumb for the space bar and the index finger for the shift key. Gradually, as his skill increased, he used his right hand more and more. Although it never acquired the speed and accuracy of his left hand, the use of two hands soon had him typing at an almost professional rate.
Graham had found his vocation and never looked back. With Muriel s support and research assistance he later became a successful professional writer of non-fiction with a dozen books and hundreds of magazine articles to his credit.
No sense of proportion, said Muriel with a hint of tears in her eyes, as she opened a letter from one of Graham s publishers offering a contract for a new book. Making a virtue of necessity isn t enough for you. Oh no! Triumph out of bloody adversity s more your style!
Language! typed Graham, smiling lop-sidedly.
Other computer applications
Word processing is only one of the almost unlimited uses of a personal computer (see Chapter 12). The microprocessor the central controlling chip at the heart of the computer is now so cheap that it is used in all sorts of gadgets and machines. Microprocessors now run automatic washing machines, sewing machines, tape recorders, central heating systems, toys no end of devices very much more efficiently, and much more cheaply than was ever possible before.
It is a simple task for a microprocessor to receive information from a dozen different sources some of it contradictory weigh up the significance of it in accordance with criteria laid down by the designer and produce in real time (that is, while everything is actually happening) a response which has taken everything into account. Suppose, for example, a powered wheel-chair designer wanted to enable the driver to control speed, steering and braking with a tiny, finger-operated lever; and suppose he wanted to avoid the motor slowing down too much when the chair went up a slope, but not run ahead too quickly when going downhill; and suppose he wanted to prevent the operator from putting the chair into reverse while going forward, or try to move off while the brakes were on; and to give speech-synthesized warning when anything was done wrong. A microprocessor would coordinate all these requirements and do the job standing on its head and go on doing it for years with complete reliability. There is enormous scope for the use of microprocessors in aids to people who have had strokes and the applications are limited only by the ingenuity and motivation of the bio-engineer. We can confidently expect that disabled people will be able to exert ever-greater degrees of control over their environments.
For stroke victims who can speak but are unable to use a keyboard, the answer is voice-recognition software. This is now cheap enough to be afforded by anyone who needs it. Such programs can be trained to recognize the words of the particular user and, once the system has been conditioned in this way, words spoken into a microphone will appear at once on the screen. This makes writing and e-mail correspondence possible for many who would otherwise be denied these important activities. Voice recognition software now comes with many of the better word processing programs and can be an invaluable aid to stroke-disabled people.
These programs can respond to all necessary computer commands spoken into the microphone, so that corrections and even detailed editing of text can be done. This opens the door not only to better human communication but also to the possibility of rewarding creative activity for people disabled by stroke.
Other people have rights, too
The role of the family
Doctors are busy people and have their hands full just coping with their acutely ill patients. Of course they are aware of the difficulties experienced by the families of stroke patients, but it is hard to see how they are going to be able to find time to do anything about it. Once a stroke patient is out of danger, the busy hospital doctor can afford to spend very little time with that patient. New patients are constantly coming in and other lives have to be saved. So after the patient has had a spell of management in a stroke rehabilitation unit, the job of attending to the new stroke victim has to fall to some member of the family. And, regrettably, however devoted the younger members of the family may be, they will usually have career or marital responsibilities, and it will be unrealistic in most cases to expect them to accept a major caring role.
Sometimes, a daughter or daughter-in-law will accept this task perhaps at the cost of her career or even the sacrifice of a marriage. But in the great majority of cases, the job is left to the closest one usually the spouse on whom falls the responsibility of providing the vital physical attention, comfort and moral support necessary for recovery or even survival. This chapter is dedicated to those who find themselves in this situation.
Like it or not, the carer is stuck with a major task a task which may alter the whole way of life and, perhaps seriously damage its quality. Because stroke is a condition mainly affecting elderly people, the probability is that both patient and carer are well past their physical prime. Add to that the distress, anxiety and loss of amenity and perhaps income, and the need to take on many tasks formerly the responsibility of the patient, and it is apparent that the carer s burden is a heavy one. No one should be expected to carry this major responsibility without help or advice.
The carer is likely to have had very little preparation for the patient s release from hospital and may have been told hardly anything about the business of looking after an invalid. The community nurse in Britain, or the home care nurse in the USA, is usually a great help but she is busy too and really hasn t enough time to pass on all that should be known. In addition, the carer is likely to be feeling tired, lonely and greatly in need of a bit of assistance.
How much should the carer endure?
Few carers enjoy any real compensation for the heavy burden imposed on them and many, understandably, feel resentful. But few are willing to express the full degree of resentment felt and this is sometimes a pity as the repression of such very natural and reasonable feelings can make them worse. Of course, the expression of such feelings to the person whose misfortune has caused them would be indefensible, but the honest acceptance of them, and the expression of them to some other understanding person, can be therapeutic. Stroke clubs (see below) can offer an opportunity for the expression of such feelings and it will often be a great relief to find that other people, especially those you respect, have the same kind of feelings.
One person s confession will tend to lead others to admit similar reactions. At one stroke relatives meeting the wife of a stroke victim admitted that she had come to hate her husband because of the severely damaging effect his illness had had on her life. This led another to admit that she had come to believe that it would have been better if her husband had died because she could not bear the life so terribly damaged by his disability that they were now leading. Such feelings are natural, logical and widely held and should not cause guilt.
Many heavily burdened carers have asked themselves the question How much should 1 have to take? The following story may help to answer this question.
The McLeods were a devoted couple who had had a good life together. Ups and downs, of course, like anyone else, but supportive and caring and on the whole very happy. David McLeod was a British Naval architect and had spent most of his working life in Admiralty dockyards and his wife Constance had borne with patience and good humour the many moves from Rosyth to Malta and from Gibraltar to Hong Kong. But she had always looked forward to the day when they could finally settle down in Scotland in a little bungalow of their own and make a proper home.
At last, David retired on pension and they bought a house in Tayport rather larger than Constance would have chosen; but they could afford it and David had always been rather inclined to ostentation. David was building a deck extension in the garden and one afternoon Constance went out with a cup of coffee to find him lying on a heap of wet cement, breathing noisily and with his face all lop-sided and twisted.
The Consultant at Dundee Royal Infirmary spoke to her gravely. Aye, well, it s a pretty massive stroke, I m afraid. He s had a big cerebral haemorrhage, and ye must prepare yourself for the worse.
You think he s going to die, then? asked Constance, desperately trying to control herself.
Yes I do. I m afraid there s very little hope for him.
But the Consultant was wrong and David did not die. After two or three days on the critical list, he recovered consciousness and, although he was unable to speak, Constance was overjoyed to discover that he could recognize her and could communicate in writing, using his left hand. At first, David s progress was rapid and, within a week he had recovered, not only the power of speech, but also nearly normal strength on his right side. His character, however, seemed to have changed and, from being a positive-minded, dominant man he had become weakly and apparently wholly lacking in motivation. A month after his admission, David was discharged from hospital and Constance gladly welcomed him back to their home overlooking the broad reach of the river Tay.
Constance was fit and healthy but she was a small woman and David s sixteen stones of passive weight presented problems. Had he been his usual self, he would have relished the problem and probably come up with a bright idea for some sort of hoist. But Constance was not getting any cooperation and he just lay there looking at her resentfully as if the whole thing were her fault. It was a difficult effort even to turn him over in bed, but this had to be done frequently because, apart from the question of bed-sores, David was doubly incontinent and soiled the bed linen several times a day.
Although he could speak, his remarks were confined to self-pitying complaints. Soon after returning home he established the habit of crying out for Constance in a high-pitched voice whenever he had the slightest inclination. Often there seemed to be no reason for this but Constance could not bring herself to ignore him and always went to him. He was especially prone to call her during the night Constance had had to retire to the guest bedroom because of his incontinence and his restlessness and she soon reached near-exhaustion from lack of sleep.
Constance was a person of great strength of character and was determined to do her duty. She was an optimist and expected every day that some improvement would occur so that she might see some possibility of an end to her perpetual and thankless task. But the weeks passed and, in spite of her every effort and the regular exhortations of the community nurse, David could never be persuaded to cooperate in anything and refused even to allow her to try to get him out of bed.
I have rights, too, you know, said Constance, And this is when I start exercising them.
With sudden resolution she flung back the duvet. Roll over to the side of the bed! she ordered.
Constance went to the far side of the bed and with a strength she didn t know she possessed, heaved up the edge of the mattress so that David half rolled, half slid across to the edge. At that point she hardly cared whether he fell out of bed or not.
What re you doing? he asked querulously.
Constance compressed her lips, took hold of his ankles and swung his legs over the side of the bed.
You ll do me an injury. protested David weakly.
Nonsense! With a supreme effort, Constance forced him into a sitting position and stood back, leaving him to balance or fall over as he chose. David chose to balance and sat, precariously with his hands on the edge of the bed.
Now get up on yer feet!
No way! I ll never stand up again. Ye don t seem t understand that I ve had a stroke.
From which you ve made an almost complete recovery, said Constance.
I can t stand! I m paralyzed!
Nonsense! Get up!
David tried to fall back on the bed, but Constance grabbed his hands and pulled so that he fell forward on to his knees.
Now look what you ve done! he cried.
Something inspired Constance to stand back and leave him. You couldn t stay like that if you were paralyzed. she said firmly, You d better get up on your feet. She went over to the window and turned her back on him.
What s got into you? asked David, Don t you love me any more?
No I don t! said Constance, You re not the man you were. And I m fed up with your selfishness. You d better start fending for yourself because I m not going to be your skivvy any more.
David began to walk towards her on his knees and when she heard the sound she turned, went across to him and, with a feeling close to desperation, put her arms round his waist and dragged him up on to his feet. When she let go of him, he stood swaying for a moment. Constance looked at his face and watched the slowly dawning expression of surprise mixed with shame. It was the first time for months that she had had evidence of any concern beyond the purely selfish and it was, for her, a moment of deep joy. She went to him and took him in her arms.
David s real recovery dated from that critical moment, and within a few weeks he was back working on the deck and giving a hand with the housework.
Don t infer from this story that many stroke patients are malingering. But it is important to grasp that the majority are likely, if not pushed quite hard, to do much less for themselves than they are capable of. There are many reasons for this, some psychological and related to the sense of resentment suffered by most stroke victims (Why should this happen to me? ), and some the result of organic brain damage affecting the will to action. It is very bad for patients to fall into a kind of hopeless lethargy. There is no doubt at all that the end result may be radically different if proper pressure is applied to stroke patients to make them try.
The kind of life the carer enjoys (or suffers) depends very much on the patient s needs. Regrettably, only too often, the whole purpose of a carer s life centres around concern for the patient. Whatever the circumstances, however, a carer is entitled to a private life and some measure of private satisfaction.
The relationship of the carer to the patient is often complex. On the one hand there is dependence and need and, on the other, constant giving. But dependence doesn t always promote the gratitude you might reasonably expect. Sometimes it breeds resentment, particularly in people formerly self-reliant and capable. Such resentment is difficult to take and may lead to resentment in the carer. So the more the stroke patient can achieve alone, the better the relationship.
It is also very important for the carer to have some independence in another sense. At least some time ideally one day a week must, at all costs, be spent away from the patient. This is not as heartless as it sounds. Much experience has shown that an intolerable situation can be made bearable if there is a regular break to give relief. This is something a carer is entitled to expect and demand, but how it is achieved is another matter. Local authorities run day care centres, minders can be found paid or volunteer; it may even be possible to organize a minder rota through a stroke club or stroke relatives club. Temporarily exchanging responsibility for one person for responsibility for another may not seem much of a deal. But change can add variety and interest and may be almost as good as a rest.
It may be possible to get some time off by moving one stroke patient temporarily to the house of another so that one carer can attend to two patients. Such arrangements are really only feasible for members of a friendly stroke club. Members of these clubs have a common purpose in improving the quality of life, both for the victims and the carers, and will always consider such suggestions positively.
This is another difficult question likely to lead to soul-searching because of the inevitable conflict of rights and duties. Should the carer, for instance, insist on having his or her own bedroom? Human company and sex may be very important to both, but to one forced to be in the presence of a demanding patient throughout most of the day, there may be a strong need for night-time privacy.
Day-time privacy, too, can be important for mental comfort, and having somewhere to retire to, if only for an hour or so at a time, can recharge emotional batteries. This will not usually be a problem if the patient remains in bed during the day, but if the patient spends all day in the sitting room, it may be necessary to explain, kindly but firmly, that one needs to be alone from time to time.
Gardening can be an ideal way of combining privacy with an absorbing and refreshing interest and offers a diplomatic means of getting away for a time. Gardens must not be allowed to fall into neglect, so regular attention is needed.
The patient may die
You must recognize and accept that the mortality rate in people who have had strokes is quite high, and the possibility of death within the foreseeable future must always be considered. The carer must think of the future and it is important not to put all concern into the one activity of caring, to the exclusion of all possible future interests. An absorbing occupation is essential for happiness, and it is difficult for the busy carer to pursue such occupation. Many try to achieve satisfaction in caring. But it is dangerous to arrange one s life wholly around an occupation that might suddenly be withdrawn.
It is not heartless to recognize the possibility of the death of one s charge and, however reluctant you may be, this is a factor you really mustn t repress. Future social prospects must also be considered. If, through unremitting devotion to a patient, no other social contacts have been made or no other friendships maintained, the carer could be cutting off from associations which could be valuable in the future. And in the event of a bereavement, the situation is worse with no friends to offer consolation and sympathy.
Dealing with stress
Most people who accept responsibility for the care of a stroke patient suffer a continuously stressful life. Stress is a natural and necessary bodily response to the demands made upon it and the greater and more alarming the demands, the greater the stress. Sudden acute demands such as the need to respond to serious danger will produce an acute stress reaction with an outpouring of adrenaline and the body s own natural steroid to fuel the response.
This is the well-known fright, fight or flight reaction and with it we are able, sometimes, to perform wonders. Without these hormones we would be likely to come to grief. But if the hormones are not used as nature intended and we don t respond physically to the threat, the adrenaline and steroid simply rev up the engine and the result is severe anxiety. If this happens frequently, stress-related diseases like high blood pressure, duodenal ulcers and heart disease are likely.
Less severe demands, such as those experienced by the carer, still produce a definite stress reaction but, again, if the stress is not properly used or dissipated, the result will be a chronic state of fatigue and irritability with bad temper, anxiety, restlessness and often insomnia. The responsibility of attending to the wants of a stroke victim can be extremely stressful and most of the persistent factors causing this stress physical exertion, mental perturbation, anxiety, frustration, resentment from various causes, and so on have already been discussed. The effects are too well known to require more than mention. What is not well known is the proper way to handle this stress.
The first step is to recognise the stress and its effects and then take all reasonable measures to reduce it. Finally, because some measure of stress is unavoidable, you must learn how most effectively to live with it at minimum risk.
It is not difficult to recognize the presence of stress. Start by appreciating that the situation itself will almost certainly cause stress, then look for some of the following signs: a feeling of guilt, half-repressed anger, depression, a feeling of frustration, a sense of nagging insecurity, fatigue, insomnia, irritability, and an absence of calmness. These signs are unmistakable and should not be ignored. Chronic stress is very bad and is liable to lead to ill-health or even a complete breakdown.
How to reduce stress
The carer should carefully decide which of the many problems cause the most disturbance and annoyance. With Constance McLeod it was David s refusal to do anything for himself and his incontinence. Constance could not do much about the latter but she could, and did, make a tremendous effort to deal with, and overcome, the former. Of course, it will not always be possible to attack a central concern so directly as this and it will seldom be possible to get rid of it altogether.
But, identifying the areas especially responsible for stress will put the carer in a position to examine them carefully and see what can be done to reduce their effect. Whatever help other members of the family can give should be accepted gladly. If someone else can take over for a day, this may be a way of enlightening others about the size of the task, enlisting their sympathy and, hopefully, getting more help. One should always aim for a definite commitment to regular, weekly attendance. A day off once a week can work wonders and it is by no means unreasonable to expect help of this sort from other members of the family. No doubt there will be excuses, but if these are based on work responsibility, and the income from that work is fairly good, then there is no reason why you shouldn t expect a financial contribution towards providing relief assistance.
Local authorities and welfare services may also be able to assist here. Your full rights in state benefits should be obtained. Leaflets showing rights to attendance allowance, invalid care allowance, mobility allowance and so on are available. If you are in doubt as to entitlement, claim anyhow and if unfairly turned down, appeal.
Advice on what is available in the way of technological and other aids is given in Chapter 9 of this book, and you can decide whether any of these aids could make a contribution to stress reduction. Financial assistance can often be provided for these aids. For instance, it might make a major difference to the carer s stress, as well as greatly improving the quality of the patient s life, to have a stair lift installed giving access to both floors of a house. These lifts are expensive but wonderfully useful and most of the cost might be available from local authority funds. Don t forget that you can get a tax concession as a full-time carer.
Another way to reduce a cause of stress is to set priorities for responsibilities and, if necessary, allow some duties of lesser importance to go by default. A carer may be house proud and hate to see the place becoming dusty and the polish smeared. Well, in the context of increased duties, it may now be less damaging to health to allow standards to drop a little than to battle morning-to-night to maintain them. There may even be no one else to see how things are looking. Domestic pride can sometimes be an expensive luxury and you might be much better off with a new balance involving lowered standards and a little more time for much-needed rest and recreation.
Emotional reactions to the many frustrations and anxieties involved in caring duties should be watched. The catastrophe which has struck may have led the carer to wonder whether, and to what extent, he or she may have been responsible. This is a very common reaction, especially among wives of husbands who have had driving personalities. Was it my fault? Did 1 push him too hard by my extravagance or by my nagging demands for a better house or a bigger car? Was that row we had the cause of the stroke? This kind of reaction is natural and understandable but pointless, mistaken and damaging and shouldn t be entertained for a moment. Strokes, are not caused by a flaming row or by a wife s ambitious for social advancement.
Stress can be dissipated, or made less dangerous in several ways. One of these, surprisingly, is physical exercise but this should always be of a kind totally unconnected with the stressful situation. Stess hormones have to be used up one way or another and the healthiest way to do this is by exercise. In younger people, this should be strenuous squash, tennis, hard prolonged jogging, and so on but in more elderly people, a quiet walk in a park or a sedate swim, done as a regular thing, can be most valuable. Formal relaxation can also be an effective way of dissipating stress. This has to be taken seriously and it may be a good idea to join an evening class in relaxation or Hatha Yoga so as to learn how to do it properly.
All measures to reduce stress will, in the end, benefit both carer and patient. The carer becomes a more pleasant person to live with, will tend to lose resentment, and will have more energy to devote to the many needs of the dependent charge.
One of the best ways of getting help is to arrange for the patient to join a stroke club. This will benefit both patient and carer in a number of ways, some of which have already been mentioned. If the patient is badly disabled the carer will probably also have to go to the club and this will give the opportunity for some badly-needed social activity and the chance to compare notes, and discuss problems, with the relatives of other stroke victims. indeed, this aspect of stroke clubs has fostered Relative Support Groups , for the purpose of such discussions.
Stroke clubs have sprung up all over the country and there are now hundreds of them meeting usually once a month in local community centres or church halls. These, like other group activities for people with problems, have achieved a great deal more than might have been expected and it is now clear that the relatives almost invariably derive as much benefit as the patients. In a stroke club one meets others who have had exactly the same experience people with the same burdens and anxieties and some worse off. Other relatives share misfortunes, and are very pleased to give advice.
The emphasis in the majority of stroke clubs is on group support and friendly social activity. Members are encouraged to join in group games and competitions involving, for the benefit of people with aphasia, nonverbal activities such as chess, checkers, Mahjong, card games, dominoes and so on. Such games will often be played with great skill by those who are unable to read or speak. This is especially true if the person concerned was good at the game before the stroke occurred. Skills of this kind may sometimes be entirely unaffected even by severe strokes. But, in addition to the fun, there is also the serious purpose of educating both the stroke victim and members of the family in all aspects of the management of stroke. This is done both by informal discussion and by arranged lectures and talks by experts.
The social aspects of stroke clubs are a very important means of maintaining morale. Visits and outings of all kinds are regularly arranged so that stroke victims and their relatives may have a change of scene. Close friendships and valuable new relationships are frequently formed. Stroke clubs are considered to be one of the most encouraging and valuable developments in the management of stroke rehabilitation.
If difficulty is experienced in locating a nearby stroke club, check some of the addresses in the next chapter.
Sources of help
People who have suffered a stroke, and those who have to look after them, are often badly in need of outside help. Happily, many organizations exist that can provide it. Every effort should be made to take advantage of such help.
Help from the Internet
By far the most extensive and accessible source of information about help for stroke victims and their carers is, of course, the Internet. A few minutes search with a browser such as Google or Yahoo will quickly show that just about everything anyone might want to know about stroke, and about what can be done to help, is available there. It seems that every country in the world has its own National Stroke Association and that all of them are dedicated to the assistance of ordinary people whose lives are affected by stroke.
The Internet knows no boundaries and it is as quick and easy, and as cheap, to consult the British Stroke Association at http://www.stroke.org.uk as it is to log on to the American Stroke Association on http://www.strokeassociation.org.
You will also find that a great deal of material on stroke comes from specialist clinical professional who are really addressing their colleagues worldwide and, quite naturally, use their own well-understood medical jargon. You may find material of this kind frustratingly difficult to understand, but remember that the Stroke Associations are constantly monitoring the scientific journals and the Internet reports for significant advances, which they will then describe in lay language for the ordinary reader.
There is, of course, a great deal of rubbish on the Internet and you have to be reasonably careful. The secret of not being led astray by false promises and offers of miracles is to know at all times where your information is coming from. Hundreds of highly reputable medical schools, hospitals and Universities are publishing reliable material on stroke and on their research into stroke causes, effects and treatments. National Stroke Associations can be relied on for the accuracy of their information. But it is easy to be led astray and even to be hurt by mistaken or ignorant publications on the Net. This is because there is no restriction on what is published there and, in consequence, no safeguards as to its scientific accuracy.
Be especially careful about Web sites that are produced by people in the alternative medicine world. The scientific medical community will neglect no avenue of research that might lead to useful advances in medicine and, although they may sometimes seem coldly disinterested by comparison with the caring approach of herbalists, homeopathic practitioners, aromatherapists, or those practising any of the more extreme forms of alternative medicine, remember that their work is strictly based on rational grounds and is carefully controlled and critically reviewed by their peers. You will certainly come across claims for treatments that can t be substantiated and that may often be based more on wishful thinking than on reliable, detached observation. To pin your hopes on some of these is to risk profound disappointment. No one denies that management by some supplementary medicine practitioners can provide comfort and consolation, but there has never been any objective reason to suppose that these therapies can cure the effects of stroke.
Help with disabilities
Stroke associations and other semi-official bodies are greatly concerned to pass on up-to-date and useful information on aid for disabled people. There is a great deal on the Internet to supplement the general ideas put forward in Chapter 9 of this book.
Bear in mind, however, that much of this material is essentially concerned with commercial advertising and that it is easy to be pressurized into buying expensive equipment that may not prove as useful as the Web site might suggest. The best thing to do is to take the advice of associations dedicated to promoting information on this subject. Here are a few useful addresses:
The Stroke Association
Stroke House, Whitecross Street
London ECIY 8JJ
Tel: 020 7566 0300
Disability Information Trust
Mary Madborough Centre
Nuffield Orthopaedic Centre
Headington, Oxford OX3 7LD
Tel: 01865 227 592
5 Shandwick Place
Edinburgh EH2 4RG
Tel: 0131 229 8632
Disabled Drivers Association
Nonwich NRI6 IEX
Tel: 01508 489 449
Disabled Living Foundation
380-384 Harrow Road
London W9 2HU
Tel: 020 7289 6111
Helpline: 0870 603 9177
Employment Opportunities for
People with Disabilities
London EC3N 1NT
Tel: 020 7481 2727
Greater London Action on Disabled People
33 Brixton Road
London SW9 7AA
Tel:020 7346 5800
Textphone: 020 7346 5811
Independent Living (1993) Fund
PO Box 183
Nottingham NG8 3RD
Tel: 0115 942 8191/2
John Grooms Association for Disabled People
50 Scrutton Street
London EC2A 4XQ
Tel: 020 7452 2000
RADAR (The Royal Association for Disability and Rehabilitation)
12 City Forum
250 City Road
London ECIV 8AF
Tel: 020 7250 3222
Textphone: 020 7250 4119
Voluntary Organisations Disability Group
London SWIP 4QD
Tel: 020 7802 8200
(holidays for disabled people)
20-32 Pentonville Road
London N 1 9XD
Tel: 020 7833 2594
29 Crawford Street
London W1H IPL
Tel: 020 7724 0473
Carers National Association
20-25 Glasshouse Yard
London EC1A 4JT
Freephone Carers Line: 0808 808 7777
The British Stroke Association commits about two million pounds every year to research by universities, medical schools and hospital departments all over the country into the causes, prevention and treatment of stroke. They have a Research and Development Committee which consists of distinguished research scientists and clinicians, who study applications for research funds into stroke and who award grants to legitimate researchers whose work they believe to be worth-while. You can read about the grants awarded for the current and the previous year, with a brief account of the research and details of those performing it, on http://www.stroke.org.uk/rescurrent.htm.
Typical of their activities is the fact that in the year 2000 the Association dedicated 03,000 for research into the high incidence of stroke among African, Afro-Carribeans and Asians in the UK.
The American Stroke Association publishes an excellent on-line journal covering all aspects of stroke. You can find it on http://www.stroke.ahajournals.org and you can download it and read it off-line. This, too, is a highly reputable organization, run by scientific experts and experienced clinicians. You many be quite sure that when any significant advance in stroke management or prevention occurs, both of these organizations will pass the facts on to you in language you can understand.
Coming to terms with permanent disability
Coming to terms with a disability is a battle that the sufferer fights alone. Decisions have to be made about the direction of future life, and courage and resources have to be found to reach a point where he or she can say Well, life isn t so bad, after all. Happily, there are many ways in which patients can be helped to reach this point and much effort has been expended, by many devoted people, to ease the way. This chapter is addressed to the stroke victim, to bring to his, or her attention some of the many ways of coming to terms with disability and minimizing the distress it causes.
Sufferers from stroke illness should not think themselves unique. There are plenty of other people in the same situation and many worse off. About twenty per cent of people who have had strokes, and survive, are never able to return home. Most of the others show some degree of recovery. Thirty per cent are able to resume a fairly normal life and about ten per cent show no outward sign of any problem. But about half of the people who suffer strokes every year end up with significant permanent physical or mental incapacity. Indeed, stroke is the largest single cause of severe permanent disability.
The stages in the psychological reactions to the effects of stroke have been covered in Chapter 6. We must now consider the later stages when further recovery is unlikely and it is apparent that there are going to be permanent effects. Hopefully a high standard of occupational, physio- and speech therapy has achieved maximal recovery in walking and speech. But now that these stages are past and physical adaptation is as complete as it is likely to be, what happens? The real question is how best to make a virtue of necessity. The aim, first and last, must be to live life to the full and, if humanly possible, to achieve more than had been expected before one became aware that old age had been reached.
This may seem paradoxical and asking rather a lot, but the suggestion is put forward with full seriousness. The great majority of healthy people waste much of their lives and never realise a fraction of their potential. The change of lifestyle, the more sedentary and restricted life imposed by disability may, if there is sufficient determination, concentrate attention and unrealised abilities into new and more productive channels, and the result may be surprising.
The worst thing to do is to remain aggrieved, sorry for yourself and bitter. If the remainder of life is not to be ruined, you simply must turn and look outwards, cultivate appropriate new and absorbing interests and drive them to the limit. You must learn to work harder than ever before to forget about rest it s not necessary and get absorbed in something new, creative and fascinating. Something like running an accountancy business from a wheel-chair; managing an agency; taking a degree; writing new computer software; engaging in modem communication with the rest of the world; working to qualify for an amateur radio licence; writing music; taking up oil, water-colour or acrylic painting; mosaic creation; stained glass window construction; writing biographies, fiction, specialised non-fiction, magazine articles.
Perhaps none of these things is appealing. Or it may be that, for years, despite a hankering to be an opera composer, a novel writer, a painter or a computer programmer, nothing has been done about it because of lack of spare time. It makes no difference either way. The reasons for taking up an absorbing new occupation, now, are very serious. Much too serious to be brushed casually aside because of mere disinclination or apparent lack of interest. It is important to recognise that interest is a commodity of priceless value and that it will come only with deliberate indulgence in new activity, growing knowledge and experience. Interest can grow to fascination. Interest displaces misery, self-preoccupation, boredom, depression. Contentment is a matter of filling the mind with a concern that constantly prompts curiosity.
There is going to be a great deal of time to spend and time can be a curse or a blessing depending on whether or not one has something to do with it. The object must now be so to fill the mind with interest that there are simply not enough hours in the day.
In addition to the sudden access of leisure time, the new circumstances are, inevitably, going to make it more difficult to keep up with many old friends. This is an unfortunate fact of disabled life that one must learn to accept. Some few may be faithful but, to those who are severely physically disabled, the majority of acquaintances are almost certainly lost for ever. So, one must find new friends and the way to do this is to establish real interests and then proceed to seek out those who share them. Some of the activities mentioned have the means of doing this built in. The spread of the personal computer has brought communication possibilities of unprecedented scope within reach, allowing extension of personal range of contact. Writing, too, both private and public, has been made very much easier, as we shall see shortly. Again, people who attend evening or day adult education classes, whether disabled or not, have a common interest. Except in remote areas, classes are available in an extremely wide range of subjects.
It would be terribly wrong to imply that all activity in old age has to be sedentary. Most stroke sufferers are at an age at which they would, in any case, have begun to settle down to a physically less active life. But some may have been accustomed to sporting activity and this may have been very important to them. Unless one is seriously disabled, there is often scope for continuing to engage in sport of one kind or another. Depending on the type and degree of disability, this may be either as a participant or as a spectator. One should not be too pessimistic about this. There are many inspiring examples of almost incredible feats of athleticism and skill among those who have suffered the kind of physical disability common after stroke.
Some may be tempted to try to pass the time by playing simple games, reading light fiction and watching video or DVD films. While there is, of course, a place for unchallenging games and passive entertainment, and these may be the only resources for those whose mental powers are affected by stroke, it is a great mistake for mentally active people to think that time can be satisfactorily filled by such means. Time must not be regarded as something to be disposed of, and if this is how the stroke patient regards it then he or she is already in trouble and badly needs the advice contained in this Chapter. There are games, such as chess or bridge, which may challenge one s mental resources to the limit and these may be, or may become, an absorbing part-time activity.
Life-enhancement by computer
We have seen how the personal computer can be used as to aid direct communication within the household for those with speech disablement. Much wider applications exist, however, and no considerations, such as old age or the absence of a technical background, should ever prevent anyone from making excellent use of computers. Think of them as very clever pale grey boxes that do useful things for you touch certain keys. It s entirely unnecessary to understand how they work. All you need to know is what you can expect to happen when you tell the computer to do something. Pressing the wrong keys may cause problems and may sometimes waste work already done, but can t harm the computer.
Computers are so critically important to people disabled by stroke can make such an enormous difference to the quality of life that you should make every effort to overcome prejudices you may have against them. A common excuse for rejecting the idea of using a computer is that you re too old. This is nonsense. There is now a large army of over-seventies enthusiastically using computers for all kinds of purposes and loving it.
The writer of this book introduced an eight-six year old friend to personal computing a few years ago and it is now one of the most important things in his life. He has become so enthusiastic that he is now in his third update model. Among other things, he has scanned and reproduced a large collection of family photographs, organized all his financial affairs using a spreadsheet program, mastered word processing so that he can print all his wife s poems, and engaged in extensive e-mail communication with friends.
Many people think that a word processing program is complicated and very difficult to master, but this is simply not true. One reason for including the subject here is that people who, earlier in life may have used a typewriter will find that a word processor is, in fact, very much easier to use than a typewriter especially for a disabled person. Recollections of the physical difficulties of using typewriters should not be allowed to influence stroke sufferers. The one-handed typist, struggling with a standard electric typewriter has major problems. Mistakes are inevitable, corrections are difficult, spoiled paper is awkward to replace and editorial changes are so tedious to make that one is likely to leave the work in a less than perfect state.
With a word processor, nearly all these difficulties are eliminated. Everything typed on the keyboard appears first on a screen and the effect of any additions, deletions or alterations is immediately visible there. The required key pressure is light; the text flows automatically from one line to the next; margins can be set, as desired, from the keyboard; type can be justified, italicised, or emboldened at will; mistakes are corrected on the screen quite simply, by deleting and inserting new letters or words; and the most detailed editing can be done at the touch of a few keys. The computer will even underline in colour words that you have spelt wrongly and will suggest the correct spelling.
Words, sentences, paragraphs, or even pages of type can be shifted around until everything is exactly right. Only then need the printing be done, by a simple keyboard command. The shift key, and shift lock (for capital letters) require no more force than any other key and this is a great help when using the left hand. Because corrections are so easy, one is encouraged to work boldly and will soon achieve good speed, even with one hand.
At any time, the work can be saved on the hard disk by the touch of a key, to be added to, or printed, later. The work can also be backed up on a floppy disk or onto a CD. A whole book can be stored on a single floppy disk and can be kept for years, and a life s literary work can be stored on a single compact diasc for future reference or revision. Most machines now come with a CD writer drive. Laser printers or bubble jet printers produce superb, high-resolution print to rival that of the finest book printing, and at very little cost. There is no end to the possibilities of the word processor for anyone with writing ambitions, and countless disabled people bless the day they were introduced to this remarkably useful application of microelectronics.
A personal computer with a cheap desk top publishing program actually makes it possible for a person to engage in DIY home book production. It is feasible for a single person to carry out all the functions of the writer, the illustrator, the editor, the proof-reader, the designer indeed the whole writing and publishing function, except for printing and distribution, in the privacy of his or her own home. Camera ready copy of each page of the whole book can be produced on disk, which can then go straight to a printer for mass reproduction. The same can be done, just as easily, for magazines of all kinds, and contributors can send their copy directly into your computer by e-mail, for editing and design arrangement. With ideas, writing, artistic and design ability, anybody could be the producer of a money-making magazine within a month or two.
The big problem is, of course, marketing. But if the book or magazine is of a quality that people will want to read and you are willing to lay out money on advertisements, you can be assured that you will at least cover your costs. This can be an absorbing business.
The keyboard emulator
Most stroke patients have the use of at least one hand and this allows effective word processing using standard equipment. There are some, however, who, while retaining full intellectual power, are very severely disabled physically, and may not even have independent finger use on one side. Happily, even to these, the benefits of computer use may still be available with an additional facility which displays, on part of the screen, or on a separate screen, a complete keyboard layout, duplicating the real keyboard.
It is then possible using a small joystick switch, to cause a highlighted indicator (the cursor) to move about the displayed keyboard to indicate the required letters or functions. These may then be definitively selected by pressing the joystick button, and the effect is exactly as if a key on the actual keyboard had been pressed. All this may sound dreadfully cumbersome and slow, but it is remarkable how much speed can be achieved with practice. Keyboard emulators come in a variety of forms and there are even some that can be used by totally paralysed people, operated by a blow suck switch, a head-supported spot-light, or even eye movements or the sound of the voice.
The latest development, unfortunately still in its infancy, is control of a computer by thought using electrodes that pick up from the scalp the tiny currents generated by brain function.
Another important application of the computer for disabled people is remote communication. There is no practical limit to this, and the possession of a computer, an internal or external device, and a phone connection allows link up to any other computer in the world. Whatever is typed on the screen can be transmitted and you can receive onto your screen whatever anyone else types on their machine. All computers have a socket on the back known as a serial port (sometimes called an RS 232 interface ). The purpsoe of the device connected to the serial port is to convert the form of the data, held within the computer, to a common form so as to enable the micro to be linked with any other computer having a serial port. Because all data is converted to a simple common form, this is possible whatever the make or type of the machines used. Windows PCs can communicate with Apple Macs and it doesn t matter what operating system the machines use. Windows 95, 98, ME or 2000 can communicate with Macs or any other kind of computer.
The information leaving your computer is in binary form, and consists of a rapid succession of two different electrical levels representing 1s and 0s. To be conveyed reliably by telephone lines it has to be converted into the electrical equivalent of audible sounds suitable for transmission by telephone. At the other end, these signals are changed back into electrical levels identical to those sent out. These changes, from electrical to acoustical, and back again, are described as M0dulation and DEModulation and the fairly simple gadget that does this is, reasonably enough, called a MODEM. They have been in use for many years by telephone engineers, but it is only in the last couple of decades that it has become commonplace for them to be used by ordinary people in their own homes.
Having a PC and a MODEM together with the communications software and an account with an internet service provider (ISP) such as Compuserve, America on line (AOL), or Freeserve opens up a whole new world. From the point of view of communication, e-mail is king. There is nothing quite like it. You can correspond with anyone, in any part of the world, for the cost of a few seconds at local phone call rates. And you don t need paper, envelopes, stamps or a walk to the nearest pillar box. You can send a ten page letter, which you compose off-line, from Britain to New Zealand for the price of a 20 second local phone call. Your letter can be received by your correspondent 10 minutes after you have sent it, and you can have an answer within the hour.
Quite standard E-mail software, such as that provided by most ISPs will automatically save letters you have received and opened so that they can be read at your leisure on the screen, or printed out if you prefer it. The software will take a note of the e-mail addresses of everyone sending letter to you so that you can reply by a click on a button. It will build up for you an address book with all your correspondent s e-mail addresses so you never have to type them again. To create a new letter you just click on the name of the recipient, paste in the letter you have written and copied to the clipboard, and then click on the send button. It s extremely easy and a wonderful boon to people disabled by stroke.
Many millions of people all over the world have developed new interests and activities as a result of discovering the seemingly unlimited quantity of information accessible to them from their own homes for no more than the cost of a local phone call. For someone restricted by stoke disability this can be an unparalleled source of life enhancement.
You can get an answer to almost any question you care to pose and be led from there into many wider pathways of knowledge; listen to radio stations from all parts of the world; read all the principal newspapers published anywhere; visit all the principal art galleries of the world and study the great works of art; you can even print them out in full colour. You can play the stock market; use a program to update the values of your portfolio; download all kinds of interesting and useful computer programs; play games; compete with others at chess or any other kind of competitive game; play competitive golf or snooker (but you can also play these games and many other off-line).
You can build up a family tree by participating in genealogy web sites that request anyone with the same surname to type in details. Or you can just search on your own name and find our whether you are known to the outside world. You can call up your bank 24 hours a day and check the state of your accounts; carry out shopping for almost any commodity, also 24 hours a day; study book catalogues; read reviews of your own publications; or investigate commercial enterprises and demand details.
There s really no end to it. Once you have become familiar with a few simple techniques and have discovered the power and utility of the Internet, you will soon bw wondering how you ever managed without it.
This is a fascinating field with wide applications for people who are disabled. Forget the crude, garish work that characterized the early days of the enterprise and may have put you off. Modern graphics software works to a high degree of resolution with an almost infinite range of colours, and offers the artistically-inclined disabled person astonishing control and scope for imagination. The best modern graphics software allows complex manipulation of shapes and areas, with controlled distortion and rotation into any plane, automatic colouring of areas, however large or small, and enlargement or reduction at will. Most people are surprised to discover that the best of these programs can actually sharpen up blurred photographs, remove all kinds of blemishes, do a wonderful cosmetic job on protraits, and combine different images and a variety of ways. The possibilities are limited only by your artistic perceptions and imagination.
Some of these programs, such as the top of the range Adobe Photoshop, are expensive and hard to learn, but there is a wide range of simpler software, often given away free with computer magazines, that is much easier to use and is adequate for all but the most professional needs. These programs overlap with desk top publishing software and allow almost unlimited adjustment to all elements in the composition. They open up the possibility of a whole new, and perhaps highly paid, career for disabled people with the appropriate artistic and design abilities. These are the talents required, not technical know-how.
The on-line office
This development should be of central interest to those whose business or commercial career has been cut short by a stroke. A growing number of firms accountancy, sales, real estate, public relations, advertising are beginning to appreciate that it is extremely cost effective for as many employees as possible to work in their own homes. Using computer communications, the link with employees is almost as complete as if they were physically present in the office.
Although still in its infancy, this trend is growing rapidly. It will be a positive boon to physically disabled, but intellectually unimpaired business people who may be able to enjoy an unrestricted business career, including promotion, without moving out of the home. As early as the mid-1980s Rank Xerox tried out the idea, and their experience was described in a book Networking in Organisations the Rank Xerox Experience (Phillip Judkins, David West and John Drew, published by Gower Publishing, 1986). This book recounts how more than fifty Rank Xerox employees moved from their offices back to their homes, and contains personal accounts of the experience of several of them. it also deals with the principles of networking and the selection and training of employees for this purpose.
There s no need to be put off by the seemingly alarming technology involved. It isn t necessary to be an electronic engineer to use a TV set or a DVD player. Operating a computer terminal has been mastered by many thousands of people much less able than many stroke victims and is simply a matter of a little practice. What really counts is business experience, judgement and capacity for hard work.
Other computer applications
This is a very large subject inappropriate to explore much further in this book. But what has been said may encourage stroke patients to look into the possibilities themselves. The available literature is enormous. Those with business and accounting skills will probably already be familiar with computer applications, but will want to see whether they can now apply their experience even more effectively by means of modern accounting software. Packages of programs covering all aspects of business management and offering ways of improving efficiency, cash flow and profitability are now available from scores of different software houses, for all standard personal computers.
It s well worth looking into developments in data base management systems programs which enable the user, after accumulating data, to access items in almost any way desired. A number of major programs of this type, such as Paradox or Access, and a range of visual programming languages such as Visual Basic or Delphi are designed to allow custom building of a system for special requirements, have been produced. Such programs enable you, without writing more than a small minimum of actual program code, to produce software to you exact needs or that of others. Many people are using these ingenious programs to write data-base management software as a very profitable enterprise..
Spread sheets, report generators, statistics programs, stock market programs, money managers, general ledgers, tax accounting programs, management system, desk organisers, decision makers, computer-aided design systems, educational programs of all kinds, programs on programming the list is endless and the variety, in each of these categories, amazing.
If you are new to the game start by checking exactly what an apparently suitable item of software will do, and confirm that that is exactly what you need. Having settled on the software, think about which computer to buy, comparing prices and ignoring the advertising hype. Look at the hard drive size and the size of the RAM. You don t need high speeds for word processing, spreadsheet or most database work, but you might if you want to get into elaborate computer graphics work. Consider using an operating system such as NT4 or Windows 2000 rather than the usual Windows 98 or Windows ME. NT4 and its update Windows 2000 are more stable and less likely to hang and cause you to lose work than the more popular systems.
Sketching and painting
Computer applications can be very creative, and it is a pity, since computers can do so much for disabled people, that many people find them unattractive. There are, however, many other engrossing interests to develop, often artistic ones, such as sketching, water-colour, oil and acrylic painting, tile making, crockery decoration, tapestry, fine sewing and embroidery, knitting and weaving. In following artistic pursuits of this kind, consult one of the help institutions mentioned in Chapter 11.
Severe muscle weakness is, of course, always a problem, and various supports are available. These can be attached to work tables, benches and wheelchairs. A range of adjustable clamps, grips, vices and mobile arm supports is available. These can be attached to almost anything. They give the necessary positioning for the use of very weak arms and hands, while appropriately locating the boards or canvas for painting or sketching, or frames for embroidery. They include scissors attachments, which can be operated by hand or foot, glass holders, mirrors, adjustable magnifying glasses and lecterns. Writers who feel happier with the traditional pen or pencil rather than with a word processor can also benefit from this system.
Gardening is immensely popular and is a great source of satisfaction to people disabled by stroke. Whether or not it will be possible to sustain the former level of activity will depend on the severity of the disability, but, at worst, and with the assistance of good advice and the support of one or other of the organisations concerned with gardening for the disabled, it should certainly be possible to maintain some interest and pleasure. Perhaps the size of the garden or allotment will have to be limited or interests changed to the cultivation of more exotic conservatory or greenhouse flora. Possibly the stroke victim may even have to think in terms of large window boxes or simply indoor plants, but it is unlikely that the interest will have to be given up altogether.
Gardening on a reasonably large scale may be ambitious but is certainly better than unnecessary limitation. Heavy work may seem impossible but, again, technology can assist. This is not because of the existence of any special gardening aids for the disabled, but simply because gardening has become such big business that many tools and gadgets have been developed to make the work easier for the ordinary, able-bodied person. Working from a wheel-chair calls for tools to extend the reach and there are plenty of these. items intended for one job can, with imagination, be adapted for another. Fruit pickers and long tongs can considerably extend the range of activities. These are available in lengths of from four to ten feet and some can be operated by one hand.
There are branch cutters with considerable leverage and a rachet action which require remarkably little strength; various grabbers and long-handled weeders, capable of one-handed use, some designed to grip and pull out the most stubborn weeds; wheel-rakes which do not have to be lifted in use, ingenious hoes (for example the multihoe ) which can perform a variety of operations very easily; lightweight lawn shears with long handles for edging and general grass cutting; lightweight wheel-barrows; electric trimmers and hedge cutters (not for the one-handed!) and many other useful gadgets. A visit to a large garden centre and a study of the garden tool section should pay dividends.
If you are confined to a wheelchair you might consider a garden in raised pots or even complete raised flower beds. The latter are available in reinforced concrete, galvanised steel or fibreglass and come in a wide range of sizes, some with preserved timber exteriors. Seating can be arranged around these raised beds. A herb garden would be one idea.
Glossary of medical terms
Adrenaline A powerful chemical agent produced by small glands on top of each kidney in response to emergency situations. It raises the blood pressure, increases the heart rate and prepares the body for violent action.
Alexia The loss of the ability to understand written or printed words.
Aneurysm A local ballooning of an artery. There is risk of rupture with severe bleeding. Aneurysms often occur on brain arteries and rupture is one of the causes of stroke. (See subarachnoid haemorrhage).
Aphasia Inability to speak or to understand spoken language. A common effect of stroke. It often occurs as a transient effect following a stroke, but is sometimes permanent. (See dysphasia)
Apoplexy An old-fashioned name for stroke. It was usually applied to cerebral haemorrhage.
Artery A blood vessel conveying blood under pressure from the heart to remote parts of the body. Disease of the arteries is the cause of stroke. (See atherosclerosis, vein).
Atherosclerosis The commonest cause of death. A disease of the inner linings of arteries in which cholesterol, fats and other substances are deposited. This narrows the vessels and reduce the amount of blood which can pass.
Body image The idea, or image, one has of the shape and appearance of one s own body. Body image can be affected by stroke, both by awareness of paralysis and by loss of sensation on one side. An impaired body image can interfere with recovery.
Brainstem The narrowed, lower part of the brain, just above the spinal cord. The brainstem contains vital centres for the maintenance of breathing and heart action, an elaborate set of nerve connections concerned with facial expression, eye movement and balance, and many other important structures. Severe stroke affecting the brainstem is usually fatal.
CT scan (CAT scan) Computer assisted tomography. An advanced form of X-ray in which the signals from a sequence of separate, low-power, narrow-beam radiation scans are put together by computer to form a detailed image. CT scan can show areas of brain damaged by stroke. Recent generation machines can show very fine detail.
Cardiovascular Concerning the heart and the blood vessels.
Carotid artery One of a pair of vital arteries supplying the head and brain with blood. The carotids run up the front of the neck and maintain the supply to the middle and front half of the brain, as well as the face and scalp. Carotid artery disease is one of the main causes of stroke. (See vertebral artery).
Cerebral cortex The outer layer of the main, upper part of the brain. The cortex is mapped out into areas which are the highest physical representation of the functions of intellect, movement, sensation, hearing, speech, vision and so on.
Cerebral haemorrhage Bleeding, from a burst artery, into the substance of the brain or into the surrounding areas within the skull. This is, in general, the most serious cause of stroke. Cerebral haemorrhage often occurs within an area containing the main nerve fibres concerned with movement.
Cerebral oedema Swelling of the brain substance. This occurs around damaged areas and causes a loss of function which is often only temporary.
Cerebral thrombosis The closing off, by blood clotting, of any artery supplying part of the brain with blood. This is a very common cause of stroke. (See atherosclerosis).
Cerebro-vascular accident (CVA) A medical euphemism for stroke. It is not a very good phrase as strokes are hardly ever accidental.
Cerebrum The main, upper part of the brain. It consists of two cerebral hemispheres, joined together and containing the widely-distributed parts by which memory, intellect and emotion are located; movement, locomotion and speech initiated; vision and all forms of sensation experienced; language understood., and artistic and creative activity undertaken. These parts lie mainly on the surface (the cerebral cortex) and are joined with each other, and with deeper brain structures, by massive bundles of nerve fibres. Any of these parts may be damaged in the course of a stroke.
Cholesterol A steroid alcohol found in animal fats and eggs. It is a normal body constituent, but high cholesterol in the diet and in the bloodstream may contribute to disease of the arteries. (See atherosclerosis).
Circle of Willis The important circle of arteries at the base of the brain into which branches of both the carotid and the vertebral arteries run, and by which means the supply to the brain is made more secure.
Coma A state of deep unconsciousness. The affected person cannot be awakened and shows no response to stimuli which would normally be painful, Severe stroke often causes coma and many patients die without recovering consciousness.
Coronary artery One of the two vital arteries coming from the main arterial trunk immediately above the heart, and supplying the heart muscle itself with blood. (See coronary thrombosis)
Coronary thrombosis Blockage, by clotting, of one of the coronary arteries or one of their branches. This is usually the result of atherosclerosis and is always serious. Non-fatal coronary thrombosis can lead to the development of clots on the inner heart lining and these can be carried up to, the brain to cause stroke.
Cortisol The natural steroid hormone. Essential to life, but excessive production, along with adrenaline, in stressful situations, can be harmful.
Depression Sadness, discouragement and despair. A state of mourning resulting from some personal loss, bereavement or tragedy. May also occur without external cause, as a disorder of the mind. Depression is almost universally experienced by people who have had strokes and it may impede recovery.
Disability The loss of power, function or learned skill of either body or mind. Disability is the usual long-term effect of stroke and may vary from the most trifling to the most extreme. The commonest major disabilities following stroke are hemiplegia and dysphasia.
Dysphasia A less than complete disturbance of the communication function. There may be disturbance of speech or understanding of language, or both.
Embolism When a blood clot, or other material lying within a blood vessel, is moved by the blood-stream, from its site of origin to a narrower part or branch of the vessel, blockage occurs. Such movement and blockage is called an embolism, and the material causing the blockage is called an embolus. Embolism is a common cause of TlAs and stroke. (See transient ischaemic attacks).
Emotional lability A condition of emotional instability in which the mood of the person swings rapidly from one state to another from joy to sorrow, from affection to anger, and so on. Sometimes the expression of the emotion is inappropriate or extreme.
Hemianopia A common effect of stroke in which half of the field of vision of each eye is lost. This may be both right or both left halves. This happens because of the way the optic nerves are connected to the brain.
Hemiplegia Loss of the power of movement in one half of the body. The right half of the brain controls the left half of the body, and vice versa. Since stroke nearly always affects one half of the brain only, hemiplegia is very common.
Hypertension Abnormally high blood pressure.
Impotence The inability to obtain, or maintain, a penile erection and so perform full sexual intercourse. The commonest cause, even after stroke, is psychological disturbance, usually anxiety about potency.
Incontinence Loss of control over the urinary bladder or bowel action, so that urine or faeces are discharged spontaneously at inconvenient times. This may be a result of stroke, but recovery is common.
Ischaemia The state of a tissue whose blood supply has been reduced or cut off. This is caused by disease of the arteries supplying the part, usually atherosclerosis. Ischaemia of part of the brain is a very common cause of stroke.
Motor nerve A nerve connected to a muscle. The nerve impulse causes the muscle to shorten and movement to result.
Reflex An action often a movement which occurs involuntarily as a result of a stimulus. A muscle, paralysed by stroke, will commonly go into spasm, by reflex action, as a result of stretching or other stimulus.
Sensory nerve A nerve carrying information about touch, pain, temperature, etc, from the skin, or from an internal organ, inwards to the nervous system and brain. Sensory connections to the brain can be affected by stroke and the result is a loss of the particular sensations carried.
Sexuality The totality of the physical, mental and functional characteristics of a person s gender. Sexuality involves far more than simply a concern about physical sexual relations.
Spasm Involuntary contraction of a muscle. May be prolonged and painful. Spasm is always disabling and may cause disfigurement. it must be avoided if the fullest recovery after stroke is to be achieved.
Spastic paralysis Loss of voluntary movement, with involuntary contraction of muscles on stretching. This is very typical of hemiplegia following stroke.
Stimulus Anything that excites a response.
Stroke in evolution An unfortunate situation in which disability increases step by step. This progression may go on for up to about two weeks, when the full extent of the disability will be clear.
Sub-arachnoid haemorrhage A bleeding between the brain surface and one of the covering membranes. Typically caused by a ruptured aneurysm. This is a common cause of stroke, often in younger people.
Subtraction imaging arteriography A refined form of investigation of artery disease in which two computer imaging pictures are taken, a dye, opaque to X-rays, being injected into the blood-stream between them. One picture is then turned into a negative and the two superimposed. Identical features cancel out leaving the image of the dye in the vessels. This can show up atherosclerosis, aneurysms and other diseases.
TIA (Transient Ischaemic Attack) A brief episode, like a stroke in miniature, caused by temporary shutting off of blood to a part of the brain. Any of the effects of stroke may occur, but only briefly. TlAs are warnings of impending stroke and should never be disregarded.
Vein A thin-walled blood vessel carrying blood, at low pressure, from the remote parts of the body back towards the heart.
Vertebral Artery One of a pair of important vessels running up the neck within the bones of the spine and supplying the back half of the brain with blood. (See carotid artery).