Articles on Medical Diseases and Conditions

Tag: Fatigue

Mobility and managing everyday life: Exercises

A physiotherapist would normally recommend a programme of management geared to the diagnosis of your mobility problems.
The main aim of exercising is to:

• try and keep as many muscles as possible in good working order;
• strengthen those that have become weak;
• help keep joints mobile;
• help prevent them from getting stiff;
• help your coordination and balance;
• improve your circulation – and in doing so help other body functions;
• help reduce spasticity in more advanced MS;
• help prevent pressure sores.

Types of exercise

A number of different types of exercise might be recommended depending on this diagnosis.

• For your overall fitness, general exercises may be recommended, not necessarily linked to any particular movement symptom of your MS.
• Exercises to improve your cardiovascular fitness will increase your heart rate, and are good for your circulation.
• Stretching exercises will decrease the risk of spasticity and contractures. These exercises work by stretching muscles and tendons to increase their flexibility and elasticity.
• Resistance exercises, with the use of weights or other devices, help increase the strength of muscles that have been weakened.
• Range of motion exercises focus on improving the degree of motion of joints in the body, and aim to overcome, as far as possible, difficulties caused by stiffness in joints or problems in tendons and ligaments.

There are several different ways in which exercises may be undertaken:

• What are called active exercises are those that you can undertake yourself without any help, and you may use weights or changes of position to give more resistance (to increase the value of the exercise).
• Self-assisted exercises are ones in which you can use one part of your body to assist another, e.g. by using a stronger arm to assist a weaker arm.
• Active assisted exercises are those in which another person is needed to help you from time to time, but in which you still do most of the exercising yourself.
• Passive exercises are those performed on you by others when you cannot easily move yourself, e.g. moving your arms or legs for you, to increase the range of motion.

As you can see from these different types of exercise, you will not always need to have the physiotherapist present. Even in relation to passive or active assisted exercises, other people, once they know how to help, can assist you. Indeed the normal pattern is for you to have an assessment and a small number of sessions with a physiotherapist initially – usually five or six over a period of a few weeks – and then for you to work on the agreed exercises on your own or with a member of
your family. You would probably return to the physiotherapist for periodic assessments thereafter to check how you are getting on.

Self-help exercises

Overall, one could say that exercise will help you maintain your maximum independence. Some floor and chair exercises are shown in Figures 8.1 and 8.2. Passive exercise is shown in Figure 8.3.

Regular sessions

Many people with MS find it puzzling, or even very disturbing, that physiotherapists will see them and assist them directly for several sessions, and then end regular consultations. This is for the following reasons:

• Pressures of time and resources mean that it is difficult for physiotherapists to continue to give regular (weekly or fortnightly) sessions beyond the initial phase of therapy.
• The training of physiotherapists emphasizes their evaluating role, in which the onus is on transferring responsibility as much as possible to the patient (client) for continuation of an agreed exercise programme.

An important feature of exercise is that it continues on a regular basis and that as much as possible is undertaken by the person with MS. Unfortunately, there is often a conflict between the view of physiotherapists, who consider that one of their main tasks is to ensure that people with MS undertake an agreed programme on their own or with family assistance, and the views of people with MS, who often feel that the support provided by regular and continuing visits to a physiotherapist is vital. It is often difficult to resolve this conflict, although some pattern of occasional consultations can often be agreed.

Caution

Be careful not to get overheated or exhausted, which may on occasion lead to a temporary increase in some MS symptoms (see Chapter 6). Your own commonsense will normally tell you when you are exerting yourself too much. Generally, if you exercise carefully and regularly, with periodic breaks, you should find that you can get the most reward from the exercise.

Figure 8.1 Floor exercises.

Figure 8.2 Chair exercises.

Figure 8.3 Passive exercise.

Having a helper

In general, the physiotherapist should have indicated how a friend or partner can help but, apart from following those instructions carefully, the following broad points may apply:

• Get them to encourage you to undertake as much movement as possible, but don’t let them impede your movements.
• They should allow you to perform a passive exercise (an exercise undertaken with/on a person by another person), as smoothly as possible.
• They shouldn’t apply increased pressure at the most extreme points of the movement and, if a spasm occurs when they touch a limb, wait to see whether the spasm ceases and then let them help for as long as the movement is comfortable.

Guidelines

Most of the guidelines are quite sensible if you think about them.

• Try and undertake those exercises that you have been recommended to do by a physiotherapist regularly, preferably every day – unless the physiotherapist indicates otherwise.
• Whether you have been given advice by a physiotherapist or not, it would be wise to try and move around as much as you can, and to sit and stand as erect as possible. Posture is very important. When
it is bad, it may produce muscle and joint strains, and secondary back problems. Furthermore, bad posture in a wheelchair or other chair may have more profound constrictive effects on your breathing and chest.
• Try to exercise within your own capacity, i.e. do not get overtired, and try not to worry if you perform less well on a bad day. Everybody’s performance varies from day to day.
• Also try and recognize when you need professional advice about problems that you are experiencing and that are not being helped by your current pattern of exercises.

Sports

The diagnosis of MS in itself should make no difference as to whether you continue to play sports or not. The key issues are whether you enjoy playing the sport, whether you feel that you can play the sport as well, or nearly as well, as you did before, and whether you feel that there are any inherent problems, e.g. a significant risk of injury, that might affect your life in other ways. People without MS have to consider these issues as well. You might be able to change your approach to sport later, perhaps by playing at a different level, if you feel that there may be problems for you at the highest competitive level. Nevertheless, sporting exercise is good for you, especially if you enjoy and benefit from it.

Fatigue and exercises

If you feel too tired to exercise, the key to solving this problem may be working out ways in which you can take advantage of the times when you feel less fatigued in order to do modest but well-targeted exercise. Look carefully at the day-to-day activities you undertake, to see whether they might be rearranged and result in less fatigue. Sometimes, introducing rest periods and using specific aids for certain activities will result in less fatigue, and the chance to undertake limited and helpful exercises. You may also need, perhaps in consultation with a physio- therapist, to review the exercises to make them less vigorous. After all, it is not only a question of getting your exercise regimen right, but of getting a good balance between exercise and relaxation.

Weakness and exercise

Physiotherapy, or exercise in general, cannot ‘mend’ the damaged nerve fibres that lead to less effective control of muscles. Weakness in the legs, and problems of balance, may be due directly to less effective nerve conduction, but exercise may help other causes of weakness. Devise a programme of exercise with your physiotherapist making sure that any special exercises that you do undertake, e.g. resistance exercises through using weights, are in fact likely to help you.
After an MS attack, some people find that they cannot walk. Whilst normally some recovery is usual from the symptoms experienced at the height of an attack, the extent of this recovery can vary a lot. If demyelination has been quite substantial, there is little you can do through an exercise programme to reduce this damage, but you should still do leg exercises in order to keep your muscles as strong as possible, and to maintain flexibility so that, if more spontaneous recovery occurs, you will be able to take advantage of this. In any case it is very important to continue undertaking leg exercises, so that you can sit more comfortably and avoid some of the problems that can come with prolonged sitting.

Spasticity and exercise

A regular programme of stretching and related exercises can help muscular development, or at the very least help prevent the muscles wasting away. Keep your joints, tendons and ligaments as flexible as possible. Avoid positions where spasticity is more likely. Keep your head as central as possible when doing exercises and, if spasticity does occur, do a passive exercise as smoothly as possible to relax your muscles. On occasion it has been found that towels dipped in iced water and applied to the relevant area for a few minutes at most may help the muscles to relax. Unfortunately, as MS progresses, even with the most helpful exercise programme, additional means – usually prescribed drugs – may be necessary to assist the spasticity. You should consult your neurologist or GP about these.

Swimming

Swimming is a good form of exercise for everyone, but especially for people with MS, because your body weight is supported by the water. Weakened muscles can operate in this environment and will strengthen from the resistance. In addition, as swimming involves many muscle systems in your body, it can help to increase coordination.
Your main practical problems may be issues such as where the changing rooms are in relation to the pool, and obtaining assistance to reach, and return from, the pool. There are now more and more swimming pools and leisure centres offering special sessions for people who need special help, and it might be worth trying one of these sessions at first. If such sessions are not available, try lobbying your local leisure centre/swimming pool for one. It may be worth asking whether there are quiet times of the day when the pool will be freer, and assistance is more likely to be available.
Functional electrical stimulation (FES) can help some people with
‘foot drop’. A small box sends electrical stimulation to muscles in the lower leg, so that you can regain useful movement. This is connected to a pressure pad in a shoe that enables the impulse to be triggered when you are walking, improving mobility. (See Appendix 1 for address of the FES Team.)
One point may prove to be important and that is the temperature of the water. The temperature that many people with MS find comfortable is about 30°C (86°F). Much lower temperatures appear to be too cold, although still tolerable, whereas much higher temperatures, often found in jacuzzis or spa baths, are sometimes associated with the onset of (temporary) MS symptoms. Also, in relation to your swimming activities, if you have troublesome bladder control, it may be worth discussing this with your neurologist or GP beforehand to try and ease your concerns.

Foot drop and exercise

‘Foot drop’ occurs when the muscles of the foot and ankle become weak, caused by poor nerve conduction, and either your ankle may just ‘turn over’ or, more commonly, your toes touch the ground before your heel – in contrast to the normal heel–toe action – and this might lead you to fall. This is quite a common problem in MS. There are two ways of dealing with it. One way is by exercising the relevant muscles as much as possible, through passive exercises if necessary. However, this may not be enough to prevent the problem once it has occurred. A special brace may be helpful, which supports the weakened ankle and allows you to walk again with the normal heel and toe action, if your leg muscles are strong enough to allow this (Figure 8.4). You may need to consider using a wheelchair or scooter, at least occasionally.
One of your feet ‘turning in’ is another problem that some people with MS have. In this situation the muscles turning the foot out have weakened, and the muscles and tendons on the inside of the foot have become shortened – largely due to disuse. In addition the ankle joint may be more rigid and stiff. Thus it is vital for people with MS to try and prevent such a situation occurring by exercising the muscles controlling the ankle as much as possible. It will be important to seek some help from a physiotherapist when the problem has arisen to ensure that you undertake the correct exercises and, if necessary, have a supporting brace.

Figure 8.4 Leg brace.

Wheelchairs and exercise

Although it may sound paradoxical, it is almost more important for someone confined to a wheelchair to undertake regular exercise than someone who can walk. You should try and undertake exercises that maintain the movement and flexibility in your joints as much as possible
– through the ‘range of motion’ and stretching exercises described earlier. As far as possible, try and maintain also your upper body strength – this is particularly important for good posture, which itself will help prevent some of the more problematic aspects of being in a wheelchair for a long time. Exercising your neck muscles will also help you to maintain a good posture. If possible, it is very helpful just to stand for a few minutes each day, with the help of someone else or with an increasing range of equipment now available for this purpose. It is known that bone density tends to decrease (causing ‘osteoporosis’) more quickly if weight is not borne by the legs and feet on a regular basis and low bone density is also one of the contributory factors of fractures. This is another reason why standing should, if possible, be undertaken – even if only for a very short period. As with sitting in a chair, you ought to learn specific exercises to be able to shift your weight on a regular basis, to prevent skin breakdown at the points where your body is in contact with the wheelchair, and ultimately to prevent pressure sores. (See Figure 8.2 for exercises that you can do sitting down.)

Pressure sores

As noted earlier, exercise can help prevent pressure sores. They are very dangerous once they arise, and yet they are entirely preventable. Basically, as the name suggests, they arise when the skin begins to break down from too much continuous pressure, from a chair or bed, for example, on key points of your body. Once this pressure has been applied for a long time, blood circulation to the area lessens or ceases, the tissues get starved of oxygen, and the skin and related tissues break down. Such pressure sores are particularly dangerous because, left untreated, they can lead to infection of the underlying bare tissue or to blood infection (‘septicaemia’), which can threaten your life. Most people do not get pressure sores because they move very frequently and thus pressure is never exerted on one point of their body for long enough for a pressure sore to develop.

Figure 8.5 Pressure sore areas.

Danger areas are the lower back, the shoulder blades, the insides of knees, hips, elbows, ankles, heels, toes, wrists, and even sometimes ears (Figure 8.5). Pressure sores are more likely if you are in a wheelchair, or are sitting or in bed for long periods of time.
Initially, a pressure sore may just look like an area of reddened skin, or even a small bruise. It can look like a blister or weal, which may break to reveal a small or even a large hole where the skin has been damaged more fundamentally. It is likely to be very painful but, if sensation has been lost, you may not be aware an ulcer is forming so visual checks are also necessary. It is important to act immediately and contact your doctor, for once the damage has occurred it is very unlikely to get better without considerable treatment.
Preventative therapy, i.e. regular movement every hour or two, is vital, especially for people in wheelchairs or in bed. If you can stand for even a short time, or shift your weight from time to time and from place to place, this is helpful. There are also a number of products that may help:

• ripple mattresses
• foam rings
• gel or air cushions
• water beds
• pads
• specific textures of clothing and bedding, especially sheepskin.

Sometimes the bedclothes can be lifted off the body by means of a cradle. You should wear nightdresses or pyjamas that chafe as little as possible.
The usual person to treat pressure sores is a District Nurse who will come in regularly to manage them. The treatment usually involves antibiotic cream or powder in and around the area. The aim is to prevent infection and to restore circulation, by keeping the skin clean and dry. The sore may be left exposed to the air during the day, but dressed with a sterile dressing at night. More serious sores may require substantial hospital treatment.
There is a great deal of development work currently underway on the management of pressure sores because, not only are they very painful, inconvenient and potentially dangerous for people with MS, but they are also very expensive to treat, at home or in hospital, and often involve very long-term nursing and medical care.

July 15, 2009
Fatigue, cognitive problems and depression: Fatigue

Fatigue or tiredness is one of the most debilitating symptoms of Multiple Sclerosis and one that worries many people. Up to 90% of people with MS experience overwhelming tiredness at least some of the time. Fatigue in MS is often associated with:

• heat (or being hot);
• activity – using motor skills, or being mobile;
• sleep disturbances;
• particular mood states (such as depression – see later section);
• some cognitive problems that may occur in MS (see later section).

At present there is no one known cause of fatigue in MS. Some argue that the best way to manage fatigue is to consider it as a symptom arising from several different sources and thus requiring different techniques to manage it. In fact it might rather better to talk of ‘Multiple Sclerosis fatigues’ in the plural. We could distinguish what we might call:

• normal fatigue resulting from everyday exertion etc., which is managed by rest;
• ‘Multiple Sclerosis fatigue’, which seems to result from the MS itself and for which it is difficult to find any other immediate cause, and which may well require drugs to control it;
• muscle fatigue, which may appear in an arm or leg, for example after or during a walk; rest may be needed and cooling may be helpful here;
• fatigue from depression, often managed through the treatment of the depression itself;
• fatigue from drugs themselves, occurring as a side effect – being aware of this possibility should prompt you to consult your doctor if fatigue seems to be related to a drug you have taken;
• fatigue from the underuse of muscles – just as fatigue can result from overuse, it can also result from underuse, it is important to keep your muscles in the best condition you can.
• fatigue from managing Multiple Sclerosis – living with MS is fatiguing for most people, so pacing your activities as well as taking advantage of as many helpful pieces of equipment as possible will be important;
• fatigue from loss of sleep – this is of course a problem not just for people with MS and will compound other kinds of fatigue, so the reasons you are losing sleep need to be addressed.

Management of fatigue

Although it is important that your symptom is recognized as genuine by medical and other healthcare staff (which has been a problem in the past), you will probably have to manage many of the day-to-day aspects of fatigue yourself, for drug therapies (see below) are often only partially successful.

Self-help

• Identify activities that appear to precede the fatigue and avoid them whenever possible.
• Develop ‘pacing’ strategies, trying to work intermittently with rest periods, or use some other ways of relaxing during the day.
• When the fatigue seems to be related to particular times of the day, focus your activities at other times.
• Try longer term ‘pacing’ too, trying to balance activities over periods of days or weeks.

People with MS may do something that they enjoy or indeed have to do, knowing that they will have a couple of ‘bad fatigue days’ following this activity. However, ‘fatigue management strategy’ tends to be a complicated business, taking a lot of energy in itself to think through all the possibilities that might occur.

Professional support
Specific and carefully planned exercise programmes have been found to reduce feelings of fatigue, but only temporarily. Behavioural therapy can help to alleviate other psychological symptoms that might exacerbate the fatigue, but these non-drug professional approaches have not been successful so far for most people with Multiple Sclerosis over the medium and longer term.

Drugs
Some drugs have helped, the two most well known being magnesium pemoline (Cylert), which stimulates the CNS, and amantadine hydro- chloride (amantadine; Symmetrel), an antiviral agent. It has also been suggested that fluoxetine (Prozac) may help in managing MS fatigue.
Some antidepressants, particularly those that have a low sedative effect, may help the tiredness even if you are not clinically depressed. Beta-interferon drugs may have some effect on fatigue if, indeed, they help the immune system.
Fatigue may be one thing that affects cognition, although it is still not yet clear exactly how this happens. Some people with MS feel fatigued almost simultaneously as they notice problems with their memory or concentration (see below). Self-rated fatigue is linked with certain forms of memory problems, as well as reading comprehension. However, if fatigue is treated with a prescribed drug, it does not appear to influence cognition. In order to try and understand this process, fatigue in people with MS has been compared to that in people with chronic fatigue syndrome (CFS), but it is not clear whether the two are the same; indeed, when fatigue severity is the same between the two groups, people with Multiple Sclerosis showed more widespread cognitive problems.

July 15, 2009
Fatigue, cognitive problems and depression

Until a few years ago, the symptoms associated with MS that we discuss in this chapter were often ignored or underplayed by doctors and neurologists. This was, in part, because MS was considered then to produce mainly – often only – physical symptoms directly (and obviously) related to the damage occurring in the nervous system. Other symptoms seemed – at the time – to be very difficult to relate to nervous system damage in this way, so fatigue, cognitive problems and, to a substantial degree, depression, were often seen as not related to the disease process itself. There has been a very substantial change over the last decade and now much greater professional attention is being paid to people who have these symptoms.

July 15, 2009
Sexual relationships: Problems during intercourse

Incontinence

If you haven’t had one already, visit your doctor for an assessment of the problems you have with incontinence. Try and ensure that you have no urinary infections, which can make your bladder problems worse if left untreated.
The following advice can help reduce the risk of ‘accidents’ during intercourse:

• Reduce your intake of fluids for an hour or two beforehand.
• If you are self-catheterizing, do so shortly before you begin.
• If you are taking drugs to reduce urgency because of a bladder storage problem, take these about 30 minutes beforehand
to ensure as far as possible that no spontaneous bladder contractions occur.
• You may need to ensure more vaginal lubrication, with something such as K-Y Jelly.
• Check out gently and sensitively positions in which you both feel comfortable, and in which you feel you are less likely to have problems with leakage.
• If the woman has an indwelling catheter, then several positions may be better than others (remember also to empty the collecting bag, and tape the catheter to prevent it moving): a rear entry position may be easiest to manage, lying on your sides with the man behind; or, while the man kneels, the woman could lie on her back with her legs over his shoulders.
• Alternatively if the man kneels and, as it were, sits on his knees with the woman in front of him with her legs over his shoulders, then gentle movements in this position should be more comfortable. If the woman has problems with spasticity in her legs, then such a position is likely to reduce the possibility of annoying cramps and rigidity.
• The male partner could use a condom, which might be useful for other reasons as well.

Pain

Low levels of sexual arousal can reduce lubrication in the woman, but it can also be due to damage to nerve pathways in the mid- and upper spinal cord area, which leads to inadequate stimulation of the lower nerve pathways to the genital area; certain drugs taken for other purposes – such as urinary problems – also dry up vaginal secretions. Sometimes lubrication can be helped by direct stimulation of the genital area; or try to set up an environment which is relaxing and conducive to sexual thoughts and experiences. As far as additional lubrication is concerned, K-Y Jelly or a similar water-soluble substance can be very helpful. Substances like Vaseline are not recommended because they do not dissolve in water, and they are likely to leave residues which could give rise to infections. They can also create holes and tears in condoms.

Spasticity

Check with your doctor that the general control of your spasticity is as good as it can be. Try and keep your muscles as well toned as possible through regular exercises, and use appropriate drugs such as baclofen as necessary to give additional control.
There are also certain positions for sexual activity that appear to make the muscular spasms less likely, although it is important that you explore other possibilities than those mentioned below, for you may find another position that suits you both very well. For a man who may have difficulty with spasms or rigidity in his legs, then sitting in an appropriate chair (without arms) would allow his partner to sit on his penis either facing him or with her back to him. For a woman, lying on her side may help, perhaps with a towel or other material between your legs for more comfort. Your partner can then approach you from behind. Another possibility is to lie on your back towards the edge of your bed with the lower part of your legs hanging loosely off the bed.

Fatigue

As with other symptoms associated with MS, it is important to discuss this with your doctor who will assess the best means of managing it. Although there are one or two drugs which may help (for example amantadine or pemoline) and which – if prescribed for you – might be taken a few minutes before sexual activity, currently the best help is through various appropriate lifestyle changes.
Consider when you feel least fatigued. Although this may not necessarily be the time when you feel that you should be having sex – such as in the morning, or during the day, rather than at a more conventional time – you may be less tired and enjoy it more. Rather than thinking of sexual intercourse as the major element, you could agree with your partner to engage in some other less energetic sexual activities
– such as gentle stroking or foreplay – that you could participate in more frequently. As with so many other aspects of living with MS, it is a question of finding ways to adapt to the situation through experimentation.

July 15, 2009
Symptoms of Multiple Sclerosis

There are many symptoms associated with MS that occur to a greater or lesser degree. Some are more debilitating than others; some cause more inconvenience. They can, for example, include problems with:

• urinary and bowel function
• pain and changes in sensation and dizziness
• tiredness
• depression and cognitive or memory impairment
• mobility
• speech and eating difficulties
• problems with eyesight and hearing.

‘Attacks’ and ‘remissions’
Symptoms of MS often appear quite suddenly, although they may be relatively mild early in the disease, as the protective myelin sheath of the nerve concerned is damaged so much (see earlier section) that the transmission of messages to the muscles or sensory organs is
interrupted. Sometimes this process af fects one set of nerves, and sometimes it af fects several sets. This is often called ‘an episode’, or
‘attack’ or, when it recurs, an ‘exacerbation’, ‘relapse’ or ‘flare-up’ of MS.
Symptoms may almost disappear as some repair of the myelin takes place, particularly early in the disease, and ‘inflammation’ or swelling around the damaged areas subsides over the course of a few hours or sometimes days. When such symptoms disappear or become less severe, this process is usually called ‘a remission’, but there is always likely to be some residual damage to the nerves involved. Thus the same symptom is likely to reappear again, but this may not be for days, weeks, months, and sometimes for many years. As the disease progresses, dam- age will occur at new nerve sites and, from time to time, new symptoms will appear.
Some people have one or two attacks or relapses and then there are no further symptoms for many years. At the other extreme some people may experience almost continuous progression without any distinct remissions or attacks, but just a general decline in either sensory or muscle control, or both. In between these two extremes is the most frequent pattern of MS, consisting of shorter periods of attacks or relapses, separated by longer periods of gradual recovery, i.e. remissions.

Progression of symptoms

Multiple Sclerosis is known as a progressive neurological disease, even though we are still not good at predicting when, how and in what ways it will progress. Most people will experience a recurrence of the same symptoms that they had before, although the degree and the timing of that recurrence is difficult to judge precisely.
From time to time, new symptoms will probably appear, as the course of the disease affects another nerve pathway. It is hard to say what those new symptoms will actually be in any individual. They may be linked in some way to those you have already experienced, but completely new sen- sory or motor (movement-related) symptoms may appear. It is important, however, not to be constantly preoccupied in waiting for a new symptom to appear. It may occur in weeks or months, but you may be one of the more fortunate people with MS who never has another new symptom.
As a very rough guide, at any one time about one-third of all people with MS appear to be experiencing no serious relapses, about one-third are having a distinct relapsing-remitting course with relapses of varying severity, and about one-third are experiencing a chronically progressive course. About one-third of all people with MS have serious disabilities and require significant everyday support, and a further third require
what might be described as significant lifestyle adjustments to manage their lives with Multiple Sclerosis.

Symptoms that can catch you unawares

Two particular symptoms are reported by people with MS as having quite an effect on many aspects of everyday life in unexpected ways.

Fatigue
Lots of people with MS complain that they sometimes feel extra- ordinarily tired. This tiredness, which is usually described as MS fatigue, can be very unpredictable and difficult to manage. You need to pace yourself carefully and be prepared to adapt your life from day to day, even hour to hour. This fatigue and ways of managing it are discussed in Chapter 7.

Bladder problems
Up to 80–90% of people with MS have some problems of this kind, although the nature of these problems dif fers widely. Early on in the disease there may be very few difficulties: a little more ‘urgency’ perhaps, i.e. wanting to urinate more suddenly and possibly more often, or having some problems over control, e.g. unexpectedly leaking a little. Whilst these particular problems may be considered medically to be modest or minor, for people with Multiple Sclerosis they involve quite a lot of thought and careful planning. Much later in the disease process these problems can become substantial, and require several strategies to manage them (discussed in Chapter 4).
An important point concerning all bladder problems associated with MS is that some recent studies have found a high proportion of those with urinary problems also have bladder infections that may exacerbate those problems considerably, as well as possibly causing pain. Such infections can be cured, in most cases with appropriate antibiotic treatment. So get help from your doctor on this issue and don’t just assume that all your difficulties with your bladder are caused directly by the MS itself.

Outlook

Medium term
In general the progression of MS is slowest, and the outlook (often called the prognosis), is best for people who are diagnosed under the age of 40, and who have an initial relapsing-remitting history. However, the longterm prognosis, even in these cases, is impossible to predict with any certainty. A rather more helpful – although not entirely accurate – prediction can be made after assessing your disease for 5 years or so, taking into account the number as well as the severity of relapses over this period, and comparing your symptoms now with those 5 years previously. The working basis of the ‘5-year rule’, as it is sometimes referred to, is that what has happened to you in the first 5 years will be a reasonable guide to what is going to happen in the medium term. Even this rule cannot be considered by any means infallible. It is just a guide.

Longer term
From recent research only about a third of people with MS appear to be seriously disabled, to the extent of requiring major assistance (such as a wheelchair) for their mobility, within 15 years following their diagnosis.
Many people – certainly when they are first diagnosed, or indeed when they suspect they have Multiple Sclerosis – consider being in a wheelchair as the thing they most fear about the disease, and what they most wish to avoid (see the section on Chairs and wheelchairs in Chapter 8). This could be, in part, because of the premium our society places on being independent and mobile, and the ways in which people in wheelchairs have been treated in the past. Moreover, it is always difficult to picture yourself in the future, in a situation when you have less of something than you have now, but this will happen to all of us at some point, whether we have MS or not. The experience of life is that almost all of us adapt to such situations pretty well when they occur, even though in prospect they may be rather daunting. In any case, as far as both coping with mobility and the public perception of people in wheelchairs go, there is a positive change taking place.

Management of symptoms

Symptom management in MS is often a complicated process. The symptoms may occasionally be wide ranging and so variable that a variety of strategies are often required:

• lifestyle changes
• drug therapies
• psychological or counselling support
• physiotherapy, speech and occupational therapies
• use of equipment
• home modifications
• and, in some cases, surgery.

Many symptoms or disabilities involve using more than one of these strategies, depending on their seriousness. The most important approach for all those involved in managing your symptoms is to find an appropriate balance between all the strategies, especially when several symptoms occur at the same time. There is much more about managing the symptoms and lifestyle changes in the rest of this book.

July 13, 2009