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.