Swallowing hard: dysphagia and MS

Some people with MS have difficulties chewing, swallowing or controlling food or drink in the mouth.

This is more common in advanced MS but mild or occasional difficulties can occur earlier or during relapses.

In this blog, Jane from the Information Team talks about swallowing difficulties in MS, tips and tricks that may help you and how others can be supportive

Swallowing is a fairly automatic process for most people. We bite then chew our food, decide it feels about right, send it to the back of the throat and then swallow as we briefly hold our breath. We learnt to do this when we were very young and may have given it very little thought ever since.

Swallowing is a really complicated process involving a number of nerves and muscles in the mouth and throat including the ones that stop food going down the wrong way into your windpipe or lungs. The brain is involved in coordinating it all. You can watch a brief explanatory video about swallowing (1.24 mins) or a slightly more technical one (2.29 mins) that shows better how the nervous system is involved.

The medical term for difficulty swallowing is dysphagia.

MS can affect swallowing in several ways:

• Your muscles may have become weakened so that they are not working as well as previously
• MS may have damaged the nerves involved in one or more of the processes involved in swallowing so that some messages don’t get through at the right time and the different parts of the swallowing process get out of sync’
• MS can alter the way that you sense the presence of food and drink in your mouth and throat and so you misjudge what’s happening in your mouth.

About a third of people with MS experience some swallowing difficulties. They are more common in advanced MS but mild or occasional difficulties can occur earlier or during relapses.

Swallowing difficulties range from the annoying to the possibly life threatening and can arise at any stage of the process of swallowing. They may include:

• Difficulty controlling liquids or saliva in your mouth perhaps leading to dribbling
• Not being able to chew properly
• feeling like food is catching in your throat or has got stuck even though it hasn’t really
• getting food lodged in your throat leading to coughing or choking.

If you have swallowing difficulties it can knock your confidence to eat and drink in public. If you have problems with certain types of food, you may be particular about going only to cafes and restaurants that have the right menu items for you. You may be worried that others misunderstand your needs and think you are being fussy.

Serious difficulties with swallowing can lead to weight loss if you are not getting enough calories to maintain your weight. If food goes down the wrong way into your lungs, known as aspiration, this can cause chest infections. If you don’t drink enough, you may become dehydrated and this increases the risk of bladder infections.

People who have swallowing difficulties often have speech difficulties as many of the same nerves and muscles are used.

• Take your time over meals. If necessary, have smaller meals but eat more often
• Cut up your food more, take smaller mouthfuls and chew well before swallowing
• Concentrate on swallowing. It’s best to avoid eating at the same time as anything that could distract you like checking your phone, chatting or watching the kids
• Sip a drink in between mouthfuls as this can help your food slide down
• Watch your posture. Sitting up straight on an upright chair generally works best
• Think about which types of food cause you problems. Is it dry foods, like biscuits, or “thin” foods, like water-based drinks? You could try cutting down on these to see if it helps.

Although there is a lot you can do yourself, you may find it helpful to discuss your symptoms with your MS nurse or neurologist. They may refer you to a speech and language therapist for support.

How can others help?

• Be supportive. It’s the MS causing the difficulty not the person. Swallowing difficulties can be annoying, and sometimes frightening, for people with MS so a bit of understanding goes a long way
• Ensure that meal times are calm without too many distractions. This can help someone focus on their food and swallowing it. Feeling nervous or embarrassed about eating and drinking is only going to increase the tension and make coughing, choking or dribbling more likely
• Definitely don’t expect them to talk at the same time as chewing or swallowing!
• Everyone is different so find out what helps and what makes swallowing more difficult then consider adapting menus to fit
• Cook them their dream meal based on the above. You know they deserve it!

Jane, MS Trust Information Team