Category: Managing your Multiple Sclerosis

Managing Your Multiple Sclerosis is not a book about what MS is, its causes and diagnosis. It is a practical guide to its management and there is more information to be found in Multiple Sclerosis – the ‘at your fingertips’ guide, which can be found in your local bookshop, library or possibly your nearest health clinic; also the MS Society can provide you with many information sheets on this subject. This new book was written by popular demand from readers of the first book who wanted to know more about practical steps that they could take in their day-to-day living with MS.

  • Hearing problems

    Multiple Sclerosis is not known to cause significant symptoms in hearing (although there can always be the occasional exception), even if a test called an
    ‘auditory evoked response’ reveals some damage to the relevant nervous pathways. Very, very occasionally some hearing loss may occur temporarily as a result of the MS but, if your hearing loss is gradual or persistent, it needs investigating for other causes. Sometimes in order to diagnose and help problems with your speech, an audiological assessment may be carried out; however, any problems – as we have noted – are almost certainly not caused by the Multiple Sclerosis itself.

  • Eyesight

    Optic neuritis

    What is called optic neuritis is probably the most common visual symptom of MS, perhaps appears in 50% of people with MS, and indeed may well appear before any other symptoms of the disease are obvious. Optic neuritis (inflammation of the optic nerve, which is at the back of the eye) may result in various kinds of vision loss or difficulty. The acute form may result in temporary loss or disturbance of vision in one eye, and very occasionally vision loss at the same time in both eyes – although one eye may follow the other in being affected. Vision loss or disturbance may most often be in the centre of the eye, but it may also be in peripheral vision. Chronic optic neuritis can result in a range of continuing visual symptoms. Even those people with normal sharpness of vision (visual acuity) may have a reduced capacity to deal with contrasts in their visual field, or have reduced colour vision.
    When such a symptom appears, it can be a very worrying development for people with MS – as can be expected in anyone if a sudden loss of vision occurs. In almost all cases vision reappears and is often almost back to normal after a period of time. However, this process may take several weeks. Symptoms of optic neuritis can worsen for up to 2 weeks after its initial onset, then most people recover rapidly and have improved back to their pre-attack state after 5 weeks. Recovery in a very few cases may take up to a year. Some people who have had an attack may feel that the quality of their vision is not quite as it was, and they can be left with some problems in relation to colour vision, depth perception and contrast sensitivity. Optic neuritis can also be present without any obvious major symptoms, although on careful checking minor abnormalities can often be detected in such cases.
    It is important to say that there are a range of other conditions that may result in condiditons similar to optic neuritis. In relation to MS itself there is strong link between the presence of optic neuritis and the disease in the form of CNS lesions – mostly the larger the number of lesions detected by MRI the more likely MS is the cause.

    Treating optic neuritis
    Corticosteroids have been the main basis of medical treatment for optic neuritis for some time, even though there is conflicting research about the effectiveness of their use. The basis of the use of these drugs is that they have some effect on the immune system. In relation to what can be described as inflammatory eye disease, it is thought they could help in reducing the inflammation. A combination of methylprednisolone and prednisone may be given, although this may vary. Because in most cases (even the most severe), vision returns to something like its previous state in a reasonable period of time, some neurologists are reluctant to give powerful steroid drugs, which can have significant side effects. So, although it is worrying for people with a sudden onset of these symptoms, waiting for the return of vision or the lessening of visual disturbances is often the strategy that is followed.
    With the advent of beta-interferon type drugs in MS (where optic neuritis can be one symptom), there has been increasing pressure to give such drugs at an earlier stage in the condition. In principle, if the MS could be detected earlier – and optic neuritis is a frequent symptom occurring before MS has been diagnosed – then optic neuritis would probably be a symptom that responded to such a treatment. However, definitively diagnosing MS at such an early stage may not be easy, and there is still much debate about how appropriate the beta-interferons are to give to all people at that stage of MS.

    Eye movement abnormalities

    Eye movement abnormalities are quite common in MS. These can take many forms depending on the nature of the neurological damage. They might involve rapid but regular eye movements (usually described as
    ‘nystagmus’) or take a range of other forms including a temporarily fixed gaze. Many of these abnormal movements may not even be recognized by the person with MS, and are more likely to be noticed by others. Occasionally people with MS experience a more troubling form of nystagmus, which involves very slow but regular eye movements associated sometimes with dizziness and nausea. Nystagmus is a difficult condition to treat successfully, for the damage that causes it can be very different in different cases. Clonazepam (Rivotril) can sometimes help the problem, as can baclofen or gabapentin and scopolamine, although it is often a case of trial and error in their use.

    Uhtoff ’s phenomenon

    Another occasional symptom is a visual disturbance after exercise, a meal or hot bath (‘Uhtoff ’s phenomenon’), almost certainly due to increased body heat affecting nerve conduction. Such a visual disturbance will normally disappear as body heat falls.

    Other sight problems

    Although it is unusual for someone with MS to lose their sight completely (even if this is only temporary), many people have episodes during which their sight will become worse. Only one, or both eyes may be affected, and your sight may be disturbed in various ways, including:

    • double vision (‘diplopia’)
    • a blank field or spot in the middle of your vision (‘scotoma’)
    • loss of peripheral vision
    • blurring of vision
    • problems with colour vision, or certain contrasts, such as an unusual balance between light and shade in the visual field
    • pain on eye movement from inflammation of the optic nerve.

    Visual disturbances may be especially noticeable at night when light is much less, although there may be the impression in daylight of colours being pale or ‘washed out’. You may feel you need to leave a light on at night to assist your vision in the evening.

    Management
    These visual symptoms are not, unfortunately, correctable by glasses or contact lenses, because they are caused by nerve damage or inflammation. Although these disturbances can be very disconcerting, they do usually settle down on their own over hours, days or, occasionally, weeks, but there may be some residual loss of vision over time. Probably the most sensible approach is to wait, if you can, for the visual disturbances to correct themselves. You may be able to deal with the double vision temporarily by putting a patch over one eye, but this strategy will slow the natural adaptation of the brain to double vision. Sometimes prisms placed in glasses can help to reduce the effects of double vision by bringing the two images together. High-dose corticosteroids (such as methylprednisolone or dexamethasone) can clear problems earlier, but like other powerful drugs, they can cause side effects. You will need to be aware that visual problems can increase with fatigue, infection, stress, etc., and so managing these issues will help those visual problems.

    Cataracts

    Cataracts (clouding of the lens of the eye) may occur more frequently in people with MS partly because they are linked with the extensive use of cortisone treatments, which have been relatively commonly used in MS. Cataracts can, however, be surgically removed and this can result in a substantial improvement in vision.

  • Eyesight and hearing problems

    Problems with vision are very common with Multiple Sclerosis. More than 80% of people with MS experience visual problems at some point. These problems can arise from damage caused by MS to many different pathways of the visual system. Eye movement abnormalities can also develop as a result of this damage. Thus it is important to acknowledge that eye problems are very likely to be the result of MS and to seek support on this basis. However, eyesight problems can occur for many other reasons than MS – people may have short or long sight or other visual problems, for which glasses or contact lenses will be useful and, as people age, some of these problems will become more evident. So be sure to have these problems, and those specifically caused by the Multiple Sclerosis itself, checked out.

  • Diet and nutrition

    There are two broad ways in which diet and nutrition can be considered in relation to MS. The first and less contentious relates to your general health: ideas about what is a good diet for general health do, of course, change from time to time. The second deals with the possible beneficial or harmful effects that some diets themselves might have on either symptoms or, more fundamentally, on the underlying cause of the Multiple Sclerosis.
    Diet is the most obvious and easy to implement factor that could be changed by people with MS, and many people have focused on this issue. Also, health care professionals are often very interested in diet and its effects on all aspects of general health. Although there has been research on diet and MS, it has not been a core interest of most researchers because Western populations are largely well-nourished – obesity and overeating, on the contrary, are major health concerns.
    There have been many diets that have been suggested to affect either specific symptoms or the cause of MS. There is little evidence that any of these diets has the effects that their supporters suggest – however, we here discuss a number of the more plausible diets.

    Essential fatty acids

    One of the areas of nutrition that has been researched in relation to MS has been that of ‘essential fatty acids’, which form part of the building blocks of the brain and nervous system tissue, and are essential to the development and maintenance of the CNS. Actually essential fatty acid is rather an odd phrase in lay terms, for we are used to thinking of anything ‘fatty’ as very bad for you. However, there are many kinds of
    ‘fats’, ranging from the saturated fats, often found in meat and dairy produce, too much of which is not good for you, to the unsaturated and polyunsaturated fats, many of which are found in vegetable sources, and from some of which key essential fatty acids are derived – these are broadly very good for you. About 60% of normal nervous system tissue is made up of these ‘essential fatty acids’.
    Some research has suggested that several of these essential fatty acids are present in lower quantities in the CNS of people with MS than in that of people without the disease; one theory has been that MS arose because, in their early years such people were deprived of (or unable to assimilate) these essential fatty acids in the development or maintenance of the structure and function of the CNS. However, the reasons for this lower level of fatty acids remain a matter of speculation. Is it a cause or effect of the disease? Does it occur very early in life? Some scientists have thought that the obvious remedy would be to increase the intake of these fatty acids. However, things did not prove to be as simple as that, for many of the essential fatty acids are produced indirectly by the breakdown in the body of particular constituents from the food that we eat.
    The use of oil from the evening primrose plant, and some other oils, has become quite common amongst people with MS, for they do provide some of these constituents in a relatively ‘purer’ form but its effectiveness has not been proven scientifically. It is not clear, however, even if the level of the essential fatty acids is returned to ‘normal’, whether this will affect the course of Multiple Sclerosis, if the CNS damage has already been under way for some time. Research on this point has not proved conclusive, although many people with MS still feel that, on a precautionary basis, they wish to continue taking these essential oils.
    It would not be wise to assume that, if you eat more of the food containing essential fatty acids, it will have a definite and positive effect on your MS or its symptoms. There are several reasons for this:

    • The deficiency in essential fatty acids in the brain may be a result of some other process that causes MS; remedying this deficiency may not of itself produce major benefits in relation to the disease.
    • The particular fatty acids, often in relatively short supply in the brain tissue of people with MS, are not ones that you can just eat
    in increased quantity; they are actually produced by the body itself through a conversion process from other less complex fatty acids, and these you can eat. It is this conversion process in the body, which changes simpler forms of fatty acids into more complex
    ones needed by the brain, that appears to be defective in people with Multiple Sclerosis. So, even if you have eaten good quantities of the simpler fatty acids, they may not be converted into the vital and more complex ones.
    • The process of eating and digestion itself may reduce the amount of the simpler fatty acids being absorbed into the body.
    • The relationship between increasing the intake of brain-building fatty acids and the subsequent symptoms of MS is not clear. In principle, whilst more of the fatty acids should assist nervous system function, the relationship between one and the other, and particularly in reducing any symptoms that you might have, appears to be very complex.
    • It is likely that any damage to the nervous system from lower levels of essential fatty acids is longstanding, and has occurred, at least
    in part, very early in life, so it would be very optimistic to expect major changes as a result of a change of diet perhaps several decades later.

    Nevertheless, there are a number of studies, not many of them scientifically well designed, which suggest that there may be specific benefits to MS from increasing your intake of those foods that help form complex essential fatty acids, and from decreasing your intake of saturated fats. Although many people believe that this broad strategy can help fight the disease, most scientists and doctors do not.

    Which foods are involved?
    To get technical for a moment, there are two important families of essential fatty acids for brain function. The first of these is called the ‘omega-6 group’, with linoleic acid as its ‘parent’ – the parent meaning the basic fatty acid from which all the others in the family are derived. The second is the ‘omega-3 group’, with alpha-linoleic acid as its
    ‘parent’. In each case more complex fatty acids are formed in the body from simpler ones. Foods rich in the omega-6 family are those such as:

    • sunflower and safflower seed oil
    • evening primrose oil
    • offal such as liver; kidney, brains, sweetbread
    • lean meat
    • legumes (peas and beans).

    Food rich in the omega-3 family are:

    • green vegetables
    • fish and seafood
    • fish liver oils
    • linseeds
    • certain legumes.

    The difficulty is that most of these foods contain only small quantities of the relevant fatty acids, and then only in their simplest form. However, one or two foods have been found to have not only larger quantities of essential fatty acids, but to have them in a form that is closer to that needed by the brain. For example, the oil of the evening primrose plant has become a very popular dietary supplement for people with MS, because it is unique and contains large quantities of a substance called gamma-linoleic acid, a more complex form of linoleic acid, which is converted into further important fatty acids by the body. Some other rarer oils may also contain good quantities of gamma-linoleic acid.
    In principle, the effects of taking these fatty acids could be profound on some key characteristics of the underlying pathology of MS, but in formal clinical trials the results have not been as good as hoped for, although there is some evidence from one or two good trials that attacks of MS may be fewer over time in those taking additional fatty acids. However, these results do not approach the more dramatic findings from studies on the latest immune-based drugs.
    Many people with MS continue to take evening primrose oil even if, for example, they do not follow religiously all the other dietary recommendations, either as a kind of ‘insurance policy’, in that they are doing something that they hope will help the MS, or – and there are reasonable grounds for this – knowing that is not actually harmful, and may be helpful to your general health. It is likely to be a more costly alternative than modifying your diet to include some of the other foods containing essential fatty acids, but may be easier to manage. We must state again that the effectiveness of evening primrose oil has not been proven scientifically.

    Saturated fats

    People argue about whether changes in your saturated fat intake will make any difference to your MS. If, in general, essential fatty acids are
    ‘good’, then you could increase your intake of these as we have noted, and/or reduce your intake of the ‘bad’ saturated fats. Of course, there are general health grounds for suggesting that you should lower your intake of saturated fats, but some people who have devised low saturated fat diets for their MS claim that such diets may be far more beneficial for their MS. Again, there is little formal evidence that reducing your intake of saturated fats will specifically stabilize or improve your MS.

    Exclusion diets

    Cutting out saturated fats is an exclusion diet, but there are other diets that cut out many more specific substances. MS symptoms are considered by some people to be an allergic reaction to certain foods or drinks, and this view has led to other exclusion diets. One such diet is the
    ‘gluten-free diet’, in which it is argued that gluten has produced damage in the digestive and elimination system and has made the Multiple Sclerosis worse. Thus by eliminating gluten it is hoped that damage to the intestine can be prevented. Such diets were developed from those for people with coeliac disease who cannot absorb fats when gluten is present from cereal grains. At one stage these diets gained considerable popularity, but the burden placed on people with MS to stick to a very rigid gluten-free diet, together with disappointing results for many people and a lack of scientific support, has led to their decline.
    The relative success claimed for very different diets in particular individuals suggests not so much that these diets are improving MS, but that concomitant problems are possibly being helped in some way by the diets. Of course, if your general health is better, you will feel better, and certain (but not all) symptoms of your MS might be a little improved. The key issue is balancing whatever benefits that you may be gaining against the costs, time and resources that you have to devote to maintaining what can be a formidable dietary regimen.

    A healthy diet

    There are certain general dietary principles now widely accepted for general health which, on those grounds alone, should be considered by people with MS. These include:

    • very little intake of saturated fat (with very limited dairy produce, and generally only certain specific cuts of meat, liver for example);
    • plenty of fish;
    • a plentiful intake of vegetables and salads – either raw or as lightly cooked as possible;
    • pulses;
    • plenty of fresh fruit;
    • a good intake of most nuts, seeds and seed oils (but excluding those containing saturated oils and certain nuts containing saturated fats, such as brazil nuts);
    • as little as possible refined carbohydrates, sugar, processed or packaged foods;
    • cutting down on alcohol consumption, and
    • cutting out smoking.

    In addition, if you want to supplement this diet with liver and/or evening primrose oil, for example, it will not do you any harm, as long as you don’t feel these supplements are adding greatly to your budget.
    Most of these recommendations are broadly in line with more general nutritional advice for a healthy lifestyle, although they may be rather more draconian in relation to eating meat, for example than those general diets. So, even if you do not believe the various claims – some verging on the miraculous – that have been made by individuals for the diets devised for themselves or for their partners with Multiple Sclerosis, there are good grounds for following the broad guidelines. You may feel healthier on this kind of diet just because your general health might have improved. If symptoms of your MS have been helped, that would be a bonus.

    Vitamin and mineral supplements

    Most of the diets used by people with MS appear to be also supplemented by various vitamins and minerals. The value of these for MS itself is unclear, although there is a mountain of popular information suggesting that most vitamins and minerals in our bodies need supplementing. However, there is little scientific evidence that the average healthy adult with a reasonably balanced diet needs any significant vitamin or mineral supplements. The key questions for people with MS are:

    • How much has your general health been compromised and do you need supplementation for this?
    • Will additional vitamins and minerals help your MS?

    As far as general health is concerned, it is clearly important that people with MS receive a balanced intake of vitamins and minerals appropriate to their age, gender and situation. This can best be undertaken through a balanced diet, of the general kind we have mentioned above. Supplementation should only be necessary where, for various reasons, it is not possible to follow such a diet. There is little scientific evidence that supplementing beyond this general level will produce significant health benefits, although many popular books appear to suggest so.

    Vitamin supplements
    There is no scientific evidence that serious deficiencies in vitamin intake could produce the kind of damage in the nervous system evident in Multiple Sclerosis. So, conversely, the key question is whether major supplementation could produce beneficial effects. Since the 1920s there have been claims that supplementation with various vitamins (A, B1, B6, B12, C, D, E, K) singly and in combination, administered by mouth, injection or intraspinally, have had some beneficial effect on MS. Most of these studies have not been controlled against a group of people with MS who did not take the vitamins and, for various other reasons, the studies have been scientifically dubious.
    Although some of the studies suggest the benefits of vitamin supple- mentation, it is likely that most of these benefits were the result of the often spontaneous and unpredictable changes in the course of MS, and not the vitamins themselves. High dose ‘megavitamin’ therapy has also become relatively popular. Although there are many anecdotal reports of changes in MS, there is still no reliable scientific evidence that ‘megadoses’ of any vitamin or vitamin combinations have any effect on the course of the disease. The administration of vitamins A and D, in particular, has to be undertaken carefully as they are toxic in high doses. Vitamin B6 may also produce symptoms in the peripheral nervous system at high doses, and vitamin C can produce stomach problems and kidney stones.
    Overall, the formal evidence on vitamins and MS suggests that, apart from taking care that you have a normal balanced intake of vitamins, there is little to be gained from major supplementation of vitamins in your diet.

    Mineral supplements
    A broadly similar position seems to apply here. Many minerals have been tried in Multiple Sclerosis over the years. These have ranged from gold, silver, mercury, arsenic, thorium, metallic salts and potassium bromide to, more recently, manganese, zinc and potassium gluconate. There is a paradox that some of the metals tested earlier, for example mercury, can produce neurological symptoms themselves. The more recent candidates are generally based on a sounder principles, but they have not, for the most part, been subjected to careful evaluation through formal scientific studies.
    There is a problem in devising effective vitamin or mineral therapies, even if it is accepted that there is a key role for minerals and vitamins in MS, in that how the body uses them is poorly understood. Often it is not the presence of a major dose of some mineral or vitamin that is the key, but the fact that they all work in a complex way together. Also, many mineral and vitamin supplements are not taken in a form that the body can easily use, and are in any case changed, as in the case of essential fatty acids, into the different substances needed by the body. This is why it is far better, if possible, to eat a balanced diet rather than go to the expense of supplements.
    In general, there is little evidence that major doses of any minerals or vitamins will help MS, and a number – indeed perhaps most – are toxic when used in large doses, and produce neurological symptoms themselves.

    Nutrition and weight reduction

    This can be a problem for all or us! As we grow older, everyone tends to put on more body weight, unless we become increasingly careful about what we eat and how we exercise. When you are in a wheelchair, or are sitting down most of the day, clearly you are likely to get less exercise than you used to do. Lack of exercise together with a fondness for processed carbohydrates and getting a little older, produces the weight gain. It can be tackled in a number of ways, but for anyone who has evolved a lifestyle – whether by force or design – that has led to weight increase, it is not an easy task to take it off again.
    In seeking to reduce weight it is important to tackle the problem sensibly. Just eating very little is not necessarily the right solution, for your diet must be a balanced one. It is also important to bear in mind that almost all weight loss achieved very quickly is put back on again within a short period of time.
    Even more concerning, in the case of multiple sclerosis, is that in rapid weight loss, a proportion, and sometimes a substantial proportion can involve loss of muscle tissue, even when people are considerably overweight – this is the last thing that people with Multiple Sclerosis should be risking.
    Thus it is important to have a long-term plan of weight loss in which you should not aim to lose much more than a pound a week. This steady loss of weight is less likely to be put on again quickly, and it will not risk muscle loss in the same way as very rapid weight loss. You ought to try and get back to a diet with less processed carbohydrates and more fresh fruit and vegetables. By and large vegetables are bulky but have far less carbohydrates, including saturated fats, than processed foods. It may mean a bit of painful adaptation as you change from sweet, sugary and fat-based foods to others, but it is worth the effort. Perhaps one of the most important things is to try and make this a family affair for you and your partner, friend or children. Food eating is a social activity and being a successful dieter often involves not just getting the moral support of others, but their joining in with you. It will be good for them as well!
    As far as exercise is concerned, there are more things than you usually think that you can do if you are in a wheelchair. You should ask your physiotherapist in particular what exercises you can do. Find out about any classes you could join at local sports and leisure centres: they are increasing in popularity, again on the principle that group support is important in maintaining exercise.  In general, losing weight is easier if you have other things to do, and are not thinking about food as the main highlight of your day. Good luck!

  • Eating and swallowing difficulties

    Issues centred on food and nutrition, including both what you eat and how it is eaten, can become a major preoccupation of people with MS, especially if the disease progresses. Some of the concerns relate to the most appropriate diet for someone with MS, and others relate to the swallowing mechanism, which can be affected in a range of ways in Multiple Sclerosis. Although many people do not develop swallowing difficulties – it depends very much on the particular areas in which demyelination has taken place – when there are problems, they can be difficult to manage easily.

    Some people have major difficulty in swallowing! There are a number of different causes for this difficulty (the medical term is ‘dysphagia’), depending on exactly which muscles are affected in the journey of food and drink from the mouth to the stomach. Problems might be linked to the chewing process, or to the muscles that push the food or drink towards the throat, or to those muscles that coordinate the swallowing process through the throat and oesophagus to the stomach. Of course, there may be other problems, such as food particles remaining in the mouth that could create problems in breathing, for food particles can accidentally get into the airways to the lung. However, normally, the problems that people with MS experience are ones related to delays in the swallowing process, and a slowing down of the passage of food and drink through the throat area. You may also have difficulty in swallowing liquids, especially those that are less viscous and ‘dense’. This is because the liquids pass through the mouth ‘too fast’ before the slower moving muscles have a chance to coordinate swallowing, so you may end up coughing and choking, as liquids run into your airway to your lungs. Usually this problem is solved by thickening the liquids, so that they pass through your mouth more slowly.

    Professional help with swallowing

    As soon as you notice any difficulties with swallowing, it is worth asking the advice of your GP or neurologist at this early stage. They will refer you to a therapist for further advice and support. Increasingly there are more formal evaluations of swallowing problems in order to try and understand exactly where the problems lie. Sometimes this assessment may include what is called ‘videofluoroscopy’, which allows the process of your swallowing to be seen on X-ray following a barium swallow. Occasionally it may also include an endoscopic examination – this involves passing a small fibreoptic tube through and past the throat so that additional information can be obtained. Professional help for swallowing difficulties centres on teaching exercises to try and:

    • strengthen your muscles involved in swallowing;
    • enhance the coordination of your breathing and swallowing
    (so as to avoid choking);
    • strengthen the muscles controlling your lips and tongue
    that help in managing the food in your mouth in preparation for swallowing.

    Self-help in relation to swallowing

    It is possible to give general guidelines as to what you can do yourself to help swallowing, although it must be remembered each person has slightly different problems, and thus not every strategy will work for everyone. However, things to try yourself include:

    • changing the type and preparation of your food – solid foods, particularly those that are only half chewed, are much more difficult to swallow than those which are softer, so you may need to consider chopping or blending food;
    • changing the ways in which you eat and swallow – eating little and often may help;
    • exercising to strengthen the relevant muscles as much as possible;
    • making sure that you do not talk (or laugh) and eat at the same time – problems of swallowing can often be linked to trying to do two things at once!
    • being careful in drinking liquids – in fact, trying to make a runny liquid thicker (more ‘viscous’), similar to the consistency of a thick milkshake.

    Managing saliva

    For most people, dealing with saliva is virtually automatic. You salivate and swallow the saliva almost without thinking. In MS, coordination of the swallowing reflex with the amount of saliva you have may become a problem. You may begin to notice what appear to be large amounts of saliva. It is not that you are producing more saliva, but the swallowing of it becomes far more noticeable. In general you have to become more conscious of the process of swallowing, and try and systematically swallow. Indeed swallowing exercises may help you and, paradoxically, by stimulating more regular production of salivation through sucking a sweet (preferably sugar free!) can also help in ensuring that you swallow regularly.
    A problem often arises when you ‘forget’ to swallow for a period of time and then suddenly notice the saliva. You might try a sequence of events as you eat or drink a little at a time, based on the following: ‘Hold your breath, swallow, clear your throat, then swallow again.’

    Choking

    Those who do have serious problems swallowing with MS are always worried about choking. Mostly this can be managed by following the suggestions earlier. Some people still have great difficulty but, if food or drink gets into your lungs, which could possibly lead to pneumonia, then more drastic action may be required. The time being taken to eat and drink may also be now so substantial that you run the risk of not getting adequate nutrition or liquids over a period of time. If this happens, then you may find yourself losing weight, getting weaker and having further problems. It is an important decision to move from normal feeding by mouth (oral feeding and drinking) to non-oral feeding, where food is directly channelled into the stomach (often avoiding the mouth and swallowing completely), but this step may be necessary if problems with nutrition and/or concern over choking becomes substantial.

    Non-oral feeding

    The best way to consider changing to non-oral feeding is to think about it as being a temporary move. For example, after certain kinds of surgery in hospital, not associated with MS, people may be fed on a short-term basis through a tube that passes through the nose and then through the throat directly to the stomach (a ‘nasogastric tube’). This particular kind of arrangement has to be temporary because the throat and nose may become irritated after a while. A more long-term arrangement is to have a PEG (‘percutaneous endoscopic gastrostomy’) in which a tube is inserted through the abdominal wall directly into the stomach. A special feeding formula is regularly pumped through the tube to your stomach. As with any surgical openings through the skin, hygiene is particularly important, and great care has to be taken to prevent infections arising.
    Although it is a particularly difficult step to move to non-oral feeding, for social reasons as well as because of the loss of the pleasures associated with normal eating and drinking, in some cases it may be the best decision, in order to build up your strength if you have been losing a lot of weight, and to prevent fears associated with choking. If you are very careful, it may also be possible to continue to eat or drink a few things orally, at least to retain some of the pleasures of eating normally.
    You should keep an eye on how your swallowing goes, and always consult with your professional advisors about the possibility of gradually changing the balance between oral and non-oral feeding, so that you can try and resume a greater proportion of oral feeding, with a view to removing the PEG method of feeding if you can. This problem, as with many others in MS, needs constant review.

  • Speech difficulties: Further help

    Communication technology is advancing rapidly. The newer computer voice recognition programmes are still very expensive but are improving quickly. Some other computerized systems may be of help but, before you think of high technology solutions, many much simpler devices and procedures may be better, including such things as:

    • picture or word charts;
    • alphabet charts where you can spell out the words that you want with your fingers or eyes;
    • agreed signals with your partner/family/friends for yes, no and other words, or
    • eye blink systems.

    Your choice is likely to be influenced by your own skills, how comfortable you and others feel with a particular system, and the costs (financial and otherwise) that your choice may incur.
    If you are buying a computer, get independent advice on which system is the most appropriate for you. Think about the future also before you buy because computer systems quickly become outdated! There are currently systems, portable as well as desk-top, that automatically print out your messages and translate your words into speech. Some allow you to use single key strokes, not only to create more complex messages but to control other facilities around the home. It is not possible to give individual advice to you here, because of the rapid changes occurring, as well as because everyone’s abilities and needs are so personal. A range of communication aids can be supplied by the statutory services depending on your circumstances, including your local education authority, NHS Trusts, GP fund holders, and the Department of Employment; there are also Communication Aids Centres, in addition to individual professional advice. You should ask your GP, neurologist or occupational or speech therapist for a referral to a specialist centre if possible.

  • Speech difficulties: Helping yourself

    The first thing is to be aware of when your speech is unclear or slurred. Ask others sympathetically to understand what your problem is. People tend to do things more quickly nowadays, and seem to have less patience with others, who may not keep up with their fast pace. This is true even in family settings. Tell people that you are not drunk or have anything wrong with your mental state, just a problem of coordination of your voice.
    Check how long people have the time to talk with you, so that you are not disappointed if they leave in the middle of a conversation. When people understand your situation, they will be willing to spend more time in conversation with you. You can help also by:

    • being much more deliberate in your speech;
    • trying to pronounce your words much more precisely;
    • slowing down your normal pace of speech, and
    • giving yourself more time by pausing periodically.

    Through these means you can maintain a good rhythm, even if you speak much more slowly than you would normally.
    Learn to breathe in ways that assist the production of speech –
    coordinated breathing in sequence with your speech is crucial.
    Don’t try and speak for too long as this could exacerbate the problems with your speech, and both you and your friends may ‘lose the thread’ of what you are saying. After all some of the most memorable or amusing things that we hear are very short and to the point!

  • Speech difficulties: Dysarthria

    When people speak it requires considerable coordination of a large number of facial and related muscles. Your speech may slur because the normal muscular control of voice production has failed through weakness, or because the muscles are not operating in the right sequence. As a result your speech may sound slurred or be uncoordinated. ‘Dysarthria’ is the name given to general problems like this and may be associated with several neurological diseases. Sometimes your speech will just sound slightly slurred, but still be intelligible to others, but with more serious problems of coordination it may be difficult for others to understand you.

  • Speech difficulties: Voice production

    Voice production is a complicated process involving coordination between the relevant muscle groups, which in normal life (without Multiple Sclerosis or other condition af fecting voice production) we tend to take for granted. Speech problems are normally assessed by speech therapists – they need to know just where the problem lies for management:

    • Breathing: You may not be able to exhale in a slow and measured enough way needed for good speech production.
    • Phonation: You may not be able to speak loudly enough or with sufficient clarity or tone of voice.
    • Resonance: This additional quality of sound may be hampered by your palate not working properly.
    • Articulation: Your vocal movements may not be sufficiently precise to articulate sounds properly.
    • Phrasing and continuity: You may have difficulty in putting all the sounds together to produce sentences with appropriate pauses and so on.

    Sometimes speech may be ‘scanning’, which means that each syllable is pronounced as if it is a separate word. Occasionally speech may be
    ‘explosive/staccato’, where a syllable is forced out in a loud manner. Both these problems arise when Multiple Sclerosis affects the ‘cerebellum’, the part of the brain that deals with coordination.
    Each of these areas can be af fected by particular combinations of defective muscle control.
    If you can manage your level of fatigue well, and reduce or shorten the effects of exacerbations or attacks of MS, you may find that you have fewer problems with your speech. However, this will not always be the case and, of course, if the Multiple Sclerosis progresses, it is more likely that problems with speech will arise at some point.
    As far as the sound and tone of your voice is concerned, these change in any case as we grow older, which is why it is generally quite easy to recognize the voice of a child as different from that of an older person. In MS different aspects of voice production may change more quickly as the disease af fects the various muscles of the face, mouth and throat in different ways. Because of the damage to muscle control, your voice may be more difficult to control – it may sound high or low quite suddenly, or your speech may not sound very smooth, or perhaps you may lose your voice in mid-sentence. These problems are mainly caused by the varying, and sometimes sudden, changes in the way that your nervous system is transmitting messages to this sophisticated and normally coordinated system of voice production. There is little that can be done for the neurological difficulty itself. It is mainly a question of being aware of the problems that you have, as well as pacing your speech, and exercising the muscles to try and retain their maximum use for as long as possible.

  • Speech difficulties

    Such things as facial expression, body movement and gesture are all linked with speech, in order to communicate our thoughts and needs. Nevertheless, it is speech itself which is often the focus of concern. As with other symptoms of Multiple Sclerosis, problems with speech can vary, particularly in the earlier stages of the disease. Although the problem cannot currently be remedied by curing the neurological problem, appropriate advice, support and exercises can improve things considerably.