Seek regular assessment and advice about respiratory management soon after your diagnosis with MND, even if you have not noticed any changes in your breathing.1
You will have more time to obtain information, discuss your options and decide which strategies are right for you. The strategies below can help with respiratory muscle problems.
The way you position your body while sitting or lying down can assist your breathing. Electric recliner chairs and adjustable beds and wheelchairs enable you to easily experiment with a number of different positions. Some people are more comfortable when sitting in a slightly reclined, or not so upright, position. Others prefer a fully upright position. When in bed, you may find maximum comfort in a semi-reclined position. Regular pillows, boomerang pillows, foam wedges and bed adaptations, such as an electric bed with head-raiser, can support your upper body and head. Your physiotherapist or occupational therapist can advise you about positioning and where to get equipment.
Having an open window in the room and using a fan to circulate air can also assist your breathing.3 A humidifier may also help increase the moisture in the room air. Room temperatures that are too hot or too cold can also make you feel uncomfortable.
Avoid people with coughs and colds. Have an influenza vaccine before winter to reduce the risk of getting the flu. Your doctor or respiratory physician may also recommend a pneumonia vaccine.
If you are undernourished your muscles, including your respiratory muscles, will be weaker. You’re more likely to get coughs and colds. Maintain a healthy diet with the right mix of proteins, carbohydrates and other nutrients.
A well-balanced diet, with enough fluids, will also help you avoid getting constipated. More effort is required to empty your bowel with constipation. Also, because your diaphragm helps you to push down to empty your bowels, respiratory muscle weakness can affect how well you empty your bowels. Eating smaller amounts, more often, may help. Your dietitian, community nurse or general practitioner can advise you about specific dietary issues and constipation.
Breathing exercises may slow the progression of respiratory muscle weakness.4 The exercises help lungs to expand more fully, reducing pooled air in the lungs. One simple exercise is to take five to ten deep breaths, with short rests in between each breath, several times a day. Speak with your physiotherapist, palliative care team, specialist respiratory nurse and respiratory physician about the right breathing exercises for you.
Fatigue can be a major problem for people with MND. Unfortunately there is no advantage in ‘pushing yourself’. Instead, try and save your energy for what you really want to do.
Respiratory nurses, physiotherapists, occupational therapists, rehabilitation specialist staff and other health professionals can teach you how to save your energy, and share advice on equipment and labour-saving devices.
Anxiety or worry about breathlessness can affect how well you breathe. Controlled breathing and other techniques can help you to relax and make breathing easier. A calm, confident approach by your carer is also helpful. Your physiotherapist, palliative care team, specialist respiratory nurse and respiratory physician can advise you about the right techniques for you.
A weak cough can make it more difficult for you to clear thin liquids or thick and chunky foods that may accidently enter your airways during eating and drinking. Your speech pathologist and dietitian can provide you with advice and recipes for foods and drinks, including advice about thickening agents. Your physiotherapist can show you and your carer how to use an 'assisted cough' to clear your airways.
When your cough is weak you may be more likely to get chest infections or have difficulty in getting rid of excess saliva. Your doctor or healthcare team may suggest:
A speech pathologist, physiotherapist or doctor can provide you with advice and more information about saliva management and techniques to improve cough effectiveness.2
Other strategies for managing breathing with motor neurone disease include medically supervised use of medications such as opioids or benzodiazepines1, or supplementing breathing with non-invasive ventilation.