Swallowing difficulties (Dysphagia)

The Problem

As muscles begin to waste, swallowing becomes difficult and the person may be tempted to eat and drink less, and avoid foods that cause problems. They may also reduce their food and drink intake as a way of reducing the number of trips to the toilet.

These can all lead to:

• weight loss, feeling tired and loss of strength
• constipation (from dehydration, change of diet and poor mobility)
• dentures can become loose
• skin may become loose, dry and flaky with a risk of developing pressure sores
• if food goes down the wrong way into the lungs it can cause chest infections (called aspiration)
• weight loss due to poor nutrition can also accelerate the disease.

Eating and drinking is a very social activity where family and friends catch up at dinner parties, so a person’s inability to eat and drink normally in a social context, can have a big emotional impact on people suffering from MND.

It is important to note that people experiencing swallowing difficulties can be more prone to chest infections.

Support you can give

Ideally, arrange consultations with specialists soon after diagnosis, so that the person is fully aware of what to expect in regard to the changes they will face in eating and drinking. This way they are better prepared to manage this part of the disease.

• a speech and language therapist (SLT) can assess the person and advise about eating and drinking techniques to ensure a safe swallow
• a dietitian can provide guidance on food types and consistencies to keep the person nourished (they usually work closely with the SLT)
• an occupational therapist (OT) can advise on posture, equipment and aids to help as weakness develops in arms and hands
• a physiotherapist can provide advice on posture, exercise, assisted exercise and how to deal with any experience of choking.

You could also advise or support as follows:

• ensure the person maintains good fluid intake
• eating small meals may be less tiring
• make food more appetising, add garnishes, create a colourful plate of food and ensure the person eating can see and smell the food
• find out whether the person has any food preferences which can be accommodated (follow dietitian advice) and incorporate these foods into the diet to create interest in eating and promote wellbeing
• allow plenty of time for the meal
• keep food warm or reheat if necessary
• encourage eating in a relaxed, quiet environment which may reduce anxiety.

Gastrostomy

One treatment used for dysphagia is to have a gastrostomy tube inserted. This is a thin feeding tube surgically implanted into the stomach through a small cut on the surface of the stomach. This method may also mean that a person gets the necessary nutrition but continues to eat a small amount orally with friends or family to maintain some pleasure in social eating. The tube must be kept clean and clear but it shouldn’t restrict daily activities; the person should continue to bathe and swim normally if they wish.

It’s advisable to have the tube inserted before the breathing muscles are significantly weakened, even if it isn’t used for feeding until sometime later. There are different ways of doing this depending on the person’s health at the time, for example PEG – Percutaneous Endoscopic Gastrostomy and RIG – Radiologically Inserted Gastrostomy. Gastrostomy is not suitable for everyone and will not be chosen by some people either.

The pros and cons of this option should be discussed to enable the individual to make an informed choice. Understanding the factors that influence decision making about artificial feeding can help professionals to support people with MND to decide whether gastrostomy is for them. Any discussion the person with MND has about gastrostomy should cover:

• how alternative feeding can affect quality of life
• any possible side effects
• how gastrostomy may be included in an Advance Decision to Refuse Treatment (ADRT)

Drooling/ Sialorrhoea

Drooling of watery saliva can be treated with a number of medications. One widely used medication is a hyoscine hydrobromide skin patch. It was originally designed to treat motion sickness, but has since proved useful in drying up the flow of saliva. Amitriptyline, atropine eye drops applied under the tongue, glycopyrrolate, or botulinum toxin injections are alternative medicines that can also be used to control drooling.