Eating is a social activity and problems that affect chewing and swallowing can have a big impact on how much you enjoy meal times. For example, some people with Parkinson’s have told us that they feel self-conscious or embarrassed while eating because of their symptoms.
It’s important to look out for symptoms related to difficulties with eating and swallowing. These can develop slowly over time and you may not notice them, so family, friends or carers should know what to look out for too.
If you’re not able to swallow properly, you may experience:
- inability to clear food from the mouth
- food sticking in the throat
- a gurgly voice
- coughing when eating or drinking
- choking on food, liquid or saliva
- problems swallowing medication
- pain when swallowing
- discomfort in the chest or throat
These things can lead to a number of long-term problems, including:
- not eating enough to maintain good general health (known as malnutrition)
- not drinking enough, which can lead to other medical issues, like constipation or dehydration
- loss of appetite
- being less able to manage to eat certain foods (even though you may still enjoy them)
- heartburn or reflux
- a chest infection caused by food or liquid going into the lungs rather than the stomach. If the food we swallow enters the windpipe instead of the food pipe (oesophagus), the body reacts by coughing to stop it getting into the lungs. But in some cases, people with Parkinson’s can experience ‘silent aspiration’. This is when food enters the wind pipe and goes down into the lungs without any of the usual signs of coughing or choking, It can lead to problems like aspiration pneumonia, where the lungs become damaged or infected.
- food blocking the airway and stopping breathing (known as asphyxiation)
Talk to your GP as soon as you can if you have problems with eating or swallowing – they may refer you to specialists who can help.
Less efficient jaw and face muscles
Parkinson’s can cause the muscles in your jaw and face to be less efficient, which affects the control you have over chewing and swallowing. Less efficient muscles may also reduce the tightness that you have when closing your lips, making it hard to swallow.
Problems with tongue muscles
Parkinson’s can also cause problems in the tongue muscles. The tongue is important in swallowing. We use it to move food around and push it to the back of the mouth to trigger the swallowing reflexes. Parkinson’s can also impair the reflexes that protect our windpipe from food and drink. A problem coordinating breathing and swallowing may make this problem worse.
Slow muscles carrying food to your stomach
Parkinson’s may also slow down the muscles carrying food down into your stomach. Food moving slowly down your food pipe to your stomach can make you feel full up. But once it arrives at your stomach you realise you’re still hungry. By this time the food on your plate may have gone cold and be unappealing.
Dry mouth can be another feature of Parkinson’s and can affect the comfort and pleasure of eating and drinking. Saliva helps us to break down food as we chew it and enables us to taste our food. Tasting your food produces more saliva that lubricates what you’re chewing and makes chewing and swallowing comfortable.
Sometimes issues with eating and drinking aren’t to do with the physical aspects of swallowing, but more to do with the practical side. These may include difficulties getting food up to the mouth or balancing a cup to drink. Tiredness or difficulty concentrating at meal times can also be an issue.
If you’re worried about, or are experiencing, any of the problems in the previous section, the following professionals can help:
- Speech and language therapists work with people with swallowing problems. Clinical guidelines say you should be able to see one. In most areas you’ll be able to contact a speech and language therapist through the speech and language therapy department at your local hospital. Your GP, specialist or Parkinson’s nurse can also refer you.
- Occupational therapists can provide advice or equipment to make eating and drinking easier. Your GP, specialist or Parkinson’s nurse can refer you.
- Dietitians can offer advice about eating a good diet and about types of food that may be easier to swallow. If you’ve lost weight they may recommend nutritional supplements. Again, your GP, specialist or Parkinson’s nurse can refer you.
- Your Parkinson’s nurse or specialist will be able to suggest alternative medication options if you struggle to swallow – for example, a patch or liquid instead of hard tablets.
Your speech and language therapist will start by asking about your swallowing difficulties, for example what happens when you try to swallow, or if it’s different with different types of food. They may want to examine your mouth and observe you while you take small mouthfuls of food or drink, or even at a mealtime. If necessary, they may refer you for further tests. These include the following:
- Fibreoptic endoscopic examination of swallowing (FEES) – a small flexible tube with a light at the end is passed down the nose into the back of the throat to observe food and liquid as it passes over the back of the tongue.
- Videofluoroscopy – this is carried out in an X-ray department. You’ll be asked to eat and drink foods mixed with a substance that shows up on an X-ray. It can help pinpoint any swallowing problems.
- You may also be referred to other health professionals, including an ear, nose and throat specialist or a gastroenterologist, who specialises in the digestive system.
Following an assessment, your speech and language therapist will work with you and other relevant specialists, such as a dietitian, to come up with a self-management plan to suit your needs.
This might include:
- adjusting your sitting posture and head posture when eating or drinking
- exercises to strengthen your lips, tongue and throat muscles, cough strength and breath hold during swallowing
- changing your diet to make food and liquid easier and safer to swallow. This may include avoiding hard, dry or crumbly food, moving on to softer, moist food, or thickening drinks to make them move more slowly in the mouth
- avoiding taking mouthfuls of food or drink that have different consistencies together, like cornflakes and milk, or peas and gravy
- changing how you eat and drink, particularly the speed you eat and your mouthful size, to reduce the risk of coughing and choking
- talking to your GP, specialist or Parkinson’s nurse about the timing and doses of your medication. Eating your meals shortly after taking levodopa (one of the main drugs for Parkinson’s) may improve your swallowing, though the overall benefits of levodopa for swallowing are still unclear
Using these and other methods, you can limit the risk of choking, coughing and things going down the wrong way. These methods may also make swallowing less difficult and meal times more comfortable.
There is a variety of special equipment you can use to help you eat and drink more safely and comfortably.
For example, you could use a special straw that stops drinks falling to the bottom of the straw once they’ve been sucked up. You can also use adapted cups that are shaped to allow you to drink without tilting your head.
Your speech and language therapist can tell you more about the equipment available.
Speech and language therapists can also work with your family, friends and carers. Sometimes your family may not realise that swallowing problems are the reason why meal times are difficult for you. Helping them understand your problems and giving practical advice on what to do can help make everyone feel less anxious and make meal times more enjoyable.
Speech and language therapists can give you useful techniques and exercises to practise to help with swallowing problems. As well as following their advice, you can also try the following:
- Try to take small mouthfuls. This will give you more control over your chewing and swallowing and will reduce the possibility of food slipping to the back of your throat before you’ve chewed properly.
- Avoid taking another mouthful until you’re sure you’ve cleared your mouth and throat.
- Take your time.
- Sit upright in a chair that supports your body.
- Reduce distractions, such as watching TV.
- Refill your cup or glass when it’s half empty, so you don’t have to tilt your head back to drink, which can make food or drink go down the wrong way.
- Try drinking very cold liquids, which can encourage swallowing, first thing before breakfast or with a meal.
- Try drinking thicker drinks, which move more slowly and are easier to control, so are less likely to go down the wrong way. Powdered thickeners are available on prescription, as are pre-thickened juices. Your speech and language therapist will be able to help you with this.
When swallowing food or drink the following process can help:
- Take a small mouthful of food or drink, close your lips, chew well, and then take a deliberate swallow.
- Swallow again to make sure all the food or drink has gone.
- Try to squeeze hard with all the muscles in your mouth and throat. This will push food down to your stomach and stop it getting stuck in your throat.
- Try licking with your tongue round your mouth to check all the food is gone.
- Repeat the process.
Some people with Parkinson’s may find that eating out with family and friends becomes difficult. You might get anxious about messy eating, or being unable to cut up your food or control it on the fork or spoon.
People with Parkinson’s and their carers have told us that it can be less embarrassing if people around them are told why there are problems.
One lady, whose husband has Parkinson’s, says her strategy when eating out, if they become aware of being watched, is to get up quietly and say, “I’m so sorry if we’re troubling you. My husband has Parkinson’s.” She says people become caring and interested and they enjoy their meal in peace.
It can be useful to take any drinking or eating aids out with you when you eat away from home. You could also phone the restaurant first to make sure they can provide what you need.
However, some people with Parkinson’s may prefer to eat somewhere private – it’s important to let people know what your preference is.
Some people with Parkinson’s have told us that because they eat slowly, it sometimes gives the impression they’re bored or have finished their meal. Because of this waiters take their plate away. If this happens, remind them that you need to take your time.
Families who find eating with a relative who has Parkinson’s difficult should talk about the problem. Explain to children that their relative hasn’t changed as a person, but their Parkinson’s can make eating hard for them and they need support, time and understanding.
The important thing to remember is that you have to feel safe and comfortable when eating and that good nutrition is necessary for good health.
Many people with Parkinson’s develop problems controlling their saliva, which can lead to drooling or dribbling. The medical term for this is sialorrhea.
When you have Parkinson’s, the natural tendency to swallow slows down. We all swallow many times a day, but the slowing down of movement that people with Parkinson’s experience may reduce this. If you swallow less, saliva can pool in your mouth and, instead of you swallowing it, it can overflow from the corners of your mouth. This may happen when you’re concentrating on other things, like watching TV or doing chores.
Some people with Parkinson’s can have a stooped, head-down posture and may find it hard to seal their lips. This can make it harder to control saliva flowing from the mouth.
If you have problems with drooling or dribbling this may lead to irritation, discomfort, cracks and infections around your mouth. This can make some everyday activities, like talking, eating meals or having a drink, difficult. Constant need to change clothes can also be irritating.
In some cases, improving your posture or the way you sit can help. Physiotherapy or occupational therapy may be beneficial. For example, an occupational therapist may be able to recommend a tilting chair that will help your head and neck stay upright. Your GP, specialist or Parkinson’s nurse can refer you to these therapists.
It’s also important to remember to swallow often, as this will stop saliva pooling in your mouth. Some people with Parkinson’s find that chewing gum or sucking sweets helps them to swallow more frequently. But try to make sure these are sugar-free to help avoid tooth decay.
Sipping water can prompt swallowing and help clear the pooled saliva. If you have problems with saliva flowing from your mouth when you lean forward, try humming to keep your lips together.
There is a ‘swallow prompt’ app you can download to use on your smartphone or tablet that may also be helpful.
A speech and language therapist can teach you a number of useful techniques to help with saliva control.
For example, making sure you can seal your lips well is very important, as it will stop saliva flowing from your mouth. Your speech and language therapist can help you with this.
You can also try the simple exercises below at home in front of a mirror. They’ll help you become more aware of what your lips are doing and how tightly you need to hold them closed to keep saliva in.
- Close your lips as tightly as possible and hold for a count of four, relax, then repeat five times.
- Smack your lips together as if puffing on a pipe.
- Stretch your lips in a wide smile, hold for a count of four, and relax.
- Purse your lips as if you’re going to whistle or kiss someone, hold for a count of four, and relax.
Many people with Parkinson’s experience dry mouth problems, and this may be linked to Parkinson’s medication. Because saliva acts as a lubricant during chewing and swallowing, a dry mouth may feel uncomfortable. Saliva is also important to keep your mouth healthy, and stop problems like sores, bad breath, infections, tooth decay and gum disease.
Some tips for dealing with a dry mouth include:
- Get advice about your diet. Some foods make dryness worse. Your GP can refer you to a dietitian.
- Take frequent sips of water, so you’re not dehydrated.
- Use lip balm to keep lips moist, particularly the corners of the mouth.
- Remove and clean dentures at night to give your mouth a chance to recover.
- Ask your dentist or doctor about the possibility of using artificial saliva. Specialist dry mouth products are available on prescription.
- Suck sweets or chew gum to help increase saliva and reduce dryness. But make sure these are sugar-free to help avoid tooth decay and other mouth problems.
It’s important to visit your dentist for regular check-ups. A dry mouth and pooling of saliva and food in the mouth can cause problems with the health of your mouth and teeth.
Your local service at the Northern Health and Social Care Trust may be able to help you find dentists in Northern Ireland.
Your GP or specialist may suggest the following to help control problems with saliva:
- Drugs that can help control saliva production. People with Parkinson’s tolerate some of the drugs used to control saliva better than others. Clinical guidelines say your doctor should only consider drugs after other ways to control saliva, like speech and language therapy, have failed.
- Injections of botulinum toxin (Botox) into the salivary glands. This interrupts nerve messages from the brain that tell the glands to produce saliva. It’s important to discuss this with your GP, as this treatment may have side effects, such as causing your mouth to be too dry.
- Radiotherapy, which helps to restrict the glands that produce saliva.
- Surgical treatment options, such as salivary gland removal.
Discuss all these procedures with your GP, as they’re not suitable – or necessary – for everyone.
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Get involved with research for wearable device for drooling
Researchers are looking for people with Parkinson’s who experience drooling problems and have access to a smartphone to take part in this home-based study.
They are researching whether a smartphone app and a wristband device (a Cue Band) can help manage drooling. The Cue Band, which is similar to a smartwatch, works by sending vibrations to wearers, to remind them to swallow.
Next update due 2023
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