One of the big fears and issues in MND is swallowing. The muscles of the mouth and throat may become weaker so that eating and swallowing may become more difficult. Initially the swallow may feel different but may worsen so that it becomes difficult to swallow food and drink. Swallowing should be assessed and reviewed regularly by a speech and language therapist (SLT) in the specialist MND clinic, who will also liaise with a person’s community based SLT. The goal of the SLT and the dietician is to maintain optimal levels of nutrition and hydration and to reduce choking episodes. The SLT and the dietician will advise how to modify the consistency of food making it easier to swallow and ensure you are getting the appropriate supplements to maintain a balanced diet.
For some people the swallow may become so difficult that it becomes impossible to consume enough food to maintain their normal weight and eating gradually becomes more difficult and stressful. Alternative methods of feeding may be considered.
A Radiologically Inserted Gastrostomy (RIG) may be required. A RIG is a procedure to insert a small tube through the skin directly into your stomach. The procedure requires hospital admission. The decision as to whether or not to have a RIG inserted can be a difficult one so it is important to discuss any concerns with the MDT.
The dietician will advise on how to use the RIG and how feeds are given. They will monitor the feeding regime and advise on the amount of feed required according to specific needs. The hospital dietician develops a very close working relationship with the community dietician and public health nurse providing ongoing advice and support.
Choking is very frightening to witness and to experience. Choking episodes usually occur because of secretions that trickle down the throat due to weakness in the muscles which help us swallow. The specialist team may be able to provide aids such as suctions machines, nebulisers and medication that may help relieve the symptoms. The speech and language therapist (SLT) may suggest different approaches to eating and drinking in addition to modifications made to the consistency of food and drink. There are a number of things to do to help somebody with MND in a choking episode until the episode passes.
- Try to remain calm
- Put the person in an upright position
- Open the window to give them more air
- If the person has a suction machine or cough assist, use it as advised
- If the episode continues and the person is very distressed please ring emergency services immediately
The salivary glands produce two different types of saliva, thin watery saliva and thick mucus. The membranes of the respiratory passages also secrete thick mucus, known as phlegm. Everybody produces and swallows about 1 litre of saliva each day. If swallowing becomes difficult for a person with MND, it may become difficult to swallow their saliva resulting in it dribbling and drooling out of the mouth. This is a very distressing and embarrassing symptom but as with every symptom, there are a number of treatment options available. Some people like to use a portable suction machine to remove the saliva in their mouth. There are a number of medications that may be prescribed to reduce the amount of saliva produced, a patch can be placed behind the ear, can be very useful if the swallow is affected. Botox injections maybe prescribed for patients who have gastrostomy tubes in place.
Some patients may experience thickened mucus in the mouth and throat, which is difficult to clear, or phlegm in the airways, which is difficult to cough up due to weakness in the breathing muscles and an ineffective cough. This mucus may be thick and stringy and cause the airways to become partially blocked. This can be very distressing for patients and their caregivers. Humidification and nebulisers may reduce the viscosity or thickness and stickiness of the mucus making it easier to clear. The specialist physiotherapist may recommend using a breath stacker, which involves a cough assist to help clear these secretions.
Some people may experience a dry mouth which may be caused by the medication they are taking which can result in reduced fluid intake or breathing through their mouth. The dosage of medication should be checked and changed if necessary. Artificial saliva available in the pharmacy may be helpful. Good oral hygiene is important to avoid mouth infections.
Discuss with the dietician and SLT to explore the best ways to increase fluid intake.
For more information on Eating and Drinking when swallow is affected, please see our Eating and Drinking Information leaflet HERE.