Multiple sclerosis (MS) is the commonest disease of the central nervous system (CNS) among young adults. It affects more than one million people world-wide and about 85,000 in the UK. About twice as many women as men are diagnosed with MS.
The CNS comprises the brain and spinal cord, which, with the nerves connecting to the rest of the body, form the body’s communication network. Nerves are protected by a covering called the Myelin sheath. This is often likened to insulation materials around an electric wire. In MS, the myelin sheath is damaged. This damage alters the way messages (nerve impulses) are conducted to and from the brain, which will disrupt normal functioning of the body.
MS can affect any part of the body. The most common symptoms are: double or blurred vision; loss of sight in one eye; spasticity or tremors; bladder and bowel problems; poor co-ordination; weakness and fatigue; tingling, pins and needles, numbness and itching. People with MS could also experience difficulties with their speech (see ‘Multiple Sclerosis and Speech Difficulties’ sheet) and swallowing. The medical term for swallowing difficulties is dysphagia. Between 30 and 40 per cent of people with MS experience difficulties with swallowing at some time, though for some people changes are so small that they are hardly aware of them. It is very important to eat and drink a balanced diet so your body gets the right amount of nutrients. Therefore picking up early changes to swallowing can help avoid future complications.
Symptoms of dysphagia in MS
- Problems chewing
- Food sticking in the throat
- Food or drink coming back up
- Sluggish movement of food going down, or difficulty moving food back through the mouth
- Coughing and spluttering during and/or after eating
- Excessive saliva, which may cause dribbling
Monitoring and managing these signs could help you avoid more serious problems that might develop if left unchecked:
- ‘Aspiration’: when food or drink trickles down the windpipe into the lungs – when it ‘goes down the wrong way’. This can be very subtle and you may not even be aware it is happening (this is known as ‘silent aspiration’). However, aspiration can lead to chest infections. If you get several chest infections, it is important that the causes are investigated fully, so that aspiration and swallowing difficulties are not overlooked
- Malnutrition or dehydration: over time, the body might not get all the energy and nutrients it needs if difficulties are left unrecognised and unmanaged.
Managing swallowing problems needs to be tailored to your own needs and situation, which might change over time. MS is an unpredictable condition, so a speech and language therapist may need to reassess your needs several times, to see if your situation has changed, and if techniques are still effective. If you feel your needs have changed, ask for a new assessment. Once the type of difficulty has been identified, the speech and language therapist can work with you to find the best ways to manage it. This will be an individual thing and it is important that you can find techniques that work for you. For example, there may be certain causes, such as fatigue or stress, that act as ‘triggers’ to make swallowing more difficult. Controlling these triggers could help to reduce the difficulties you experience.
What can help?
Different techniques help with different problems, which is why it is important to have the advice of a health professional to help find what suits you. They may suggest some of the following strategies for you, your family or carers:
- Keeping a good, upright posture when eating and remaining upright for at least 30 minutes after the meal. A physiotherapist can help with posture. There may be other changes to posture or movement techniques suggested by a speech and language therapist, tailored to your own needs
- Eating in a relaxed atmosphere. Swallowing can sometimes be easier if you are relaxed. Being relaxed might help you concentrate on your swallowing, or help the muscles involved to work to the best of their ability. Some find it best to eat in a quiet atmosphere, without radio, TV or conversation for distraction
- Not rushing a meal. If the swallowing process is not in perfect working order, it can be helpful to allow extra time to eat and drink
- Chewing thoroughly. This helps make the bolus (ball) of food a good consistency for swallowing, mixing it well with the saliva
- Avoid speaking whilst eating. The two different processes can interfere with each other and could increase the chance of choking
- Adapt the food you choose so it suits you better, but remember to keep it appetising. Some people find that very thin liquids are more likely to go down the wrong way, so use thickeners to make them easier to swallow (your speech therapist will explain this further). You might benefit from eating softened foods, or from moistening dry foods with gravy or custard. Speech and language therapists can suggest appropriate changes to your food and drink, to get the right consistency for you. If you do need to adapt the foods you eat, it is important to still have things you like
- To ensure you are getting the nutrition you need, a dietitian can help you plan what you eat. For example, small, more frequent meals and milky drinks can help you get enough calories if you find it uncomfortable or tiring to eat larger meals.
A particular cause of anxiety for some people is the thought of choking whilst eating or drinking. With proper care and a good awareness of the issue, choking can be avoided. Simple techniques such as those mentioned above can help prevent it.
However, it is possible that swallowing could become so uncomfortable that you no longer take pleasure from eating. Some people decide to have a procedure called a Percutaneous Endoscopic Gastrostomy (PEG for short) where a tube is inserted into the stomach and special food can go directly to the stomach. Some people that choose PEG feeding continue to eat and drink small amounts in the normal way, with extra food and fluids taken via their PEG. This can take the pressure off needing to eat and drink large quantities.
The speech and language therapist, dietician, physiotherapist, occupational therapist, MS specialist nurse, GP and neurologist are available to support and advise you on particular aspects of your condition.
Where can I find more information?
Multiple Sclerosis Society
National MS Helpline
Freephone 0808 800 8000
www.mssociety.org.uk