Motor Neurone Disease (MND) is the name given to the group of diseases in which the nerve cells (or neurones) that control the muscles slowly degenerate.
MND impairs and slowly stops the ability of the neurons to pass messages from the brain to muscles. This means it becomes increasingly difficult, and eventually impossible to move, speak, swallow and breathe. With no viable nerves, the muscles slowly but surely waste away.
The progression and onset of symptoms look different on a case by case basis, but many individuals may initially notice difficulty in performing simple tasks such as tying a shoelace, holding a pen, or turning a key in a lock.
Common Symptoms:
Pain and discomfort: are not caused directly by MND, but may have several indirect causes. Your GP should be able to prescribe a suitable painkiller.
Muscle cramps and spasms: may be relieved by changing position when relaxing in a chair or bed. If this is not helpful your doctor may be able to provide a muscle relaxant.
Stiff joints: can be helped with gentle exercise. A physiotherapist will be able to determine an exercise programme appropriate for your needs.
Bowel problems: are not usually caused directly by MND, but constipation may occur due to restricted mobility and/or changes to diet. Increasing fluid and fibre may help, or ask your doctor to prescribe a laxative. Diarrhoea can sometimes happen with a severely constipated bowel. Ask your Public Health Nurse or GP for advice.
Speech and communication issues: occur for some people living with MND. A speech and language therapist (SLT) can help with techniques and suggestions for communication aids.
Eating and drinking difficulties: may become an issue if swallowing is affected. A speech and language therapist (SLT) can help with techniques and a dietician can advise on changes to diet or equipment to help maintain calorie intake.
Saliva and mucous: may cause issues if problems occur with swallowing. Saliva may pool in the mouth or it may become thick and sticky. In both cases your GP will be able to prescribe medication to help.
Coughing and a feeling of choking: may occur as a result of food or saliva becoming lodged in the airway. A speech and language therapist (SLT) can teach you techniques to help manage these episodes.
Breathing: Respiratory muscle weakness affects most people with MND. When this happens you will need a breathing assessment from a respiratory consultant.
Cognitive changes: may occur for some people living with MND, where difficulties with memory, learning, language and poor concentration may be experienced. This is commonly known as cognitive change. Some of these effects may be quite subtle, while for others the change can be more pronounced and noticeable.
MND Quick Facts
- Over half of people with MND are under the age of 65*
- MND is more common in men
- About 10% of MND is familial – meaning that the disease is passed down from generation to generation within the same family.
- The mean age of onset is 58-63 years for sporadic MND and 40-60 years for familial MND
Supporting Persons with MND
It can be a shock for the whole family when someone is diagnosed with MND, and can quickly lead to feelings of isolation, helplessness and hopelessness. That’s why it’s important for the individual and their family to enlist help and feel supported. With the right palliative and medical care, people with MND can improve their quality of life. Here’s how you can support a person with MND
Managing Fatigue
Fatigue is a
common symptom of MND, which is why it’s necessary to conserve energy. It’s helpful to plan your favourite activities in advance, establish a regular sleeping schedule, and make your home environment as comfortable and easy to move around as possible.
Promoting Better Sleep
People with MND often struggle with sleep due to symptoms of joint pain, excess saliva, and difficulty breathing, on top of the general stress of their diagnosis. Nurses and/or carers can aid in a better night’s sleep by providing light massages to aching muscles, assistance in moving into more comfortable positions, and reassuring conversations to promote relaxation.
Specialised Meal Preparation
Because difficulty swallowing is a common symptom of MND, it’s crucial to modify food intake and swallowing technique in order to prevent choking hazards. Caregivers can support specialised meal preparation with puréed (vitamised or blended) foods that are smooth, moist and free from lumps, and thus easier to swallow. It’s also beneficial that you are still served the foods you love, in a variety of flavours and colours, which not only promotes better flow of saliva but also mood regulation too. Carers will also be able to assist with reducing the size of each mouthful and modifying swallowing technique to prevent any choking.
Specialised Equipment
Mobility, communication and respiratory support devices are just some of the types of equipment that can help MND sufferers. It can enable them to be more easily cared for and to stay more connected with their families and communities.
Speech and Communication
Seeking a speech and language therapist who has experience working with MND can help to communicate with a person with MND. As Speech starts to deteriorate it will become increasingly difficult for both parties to communicate with each other.
For further information on Motor Neuron Disease please check out this website:
https://imnda.ie/