Movement and mobility are likely to be affected by MND and symptoms progress over time. As MND progresses, everyday tasks may become more difficult. It could be something as simple as getting out of a chair or you may have problems communicating should your speech be affected.There is a wide range of equipment, technology and controls that can make a real difference to maintaining your independence and quality of life. Some of the key items are available through our equipment loan service.
These items are made readily available, however, it is important to note that you will need to be assessed and the item must be requested by the appropriate healthcare professional on your Multi-Disciplinary Team (MDT) e.g. Occupational Therapist, Speech and Language Therapist, Assistive Technology Advisor or Public Health Nurse.
If the IMNDA does not have the specialised item you require within its equipment stores and the item cannot be accessed through health or social services, the IMNDA may be able to fund the purchase of the required item.
MND is best managed in an MND Clinic offering specialised multidisciplinary care. Having multidisciplinary care, or in other words the attention of a number of professionals all working together is ideal because each profession brings its particular perspective and expertise. People attending a specialist multidisciplinary care team (MDT) have access to support from diagnosis onwards, have fewer hospital admissions, increased survival time and improved quality of life. The specialist MDT develops close relationships with community primary care teams, palliative care teams, nursing homes and other hospitals ensuring rapid and flexible response to the person’s changing needs.
There are many symptoms that may occur following the diagnosis of MND depending on which part of the body is affected, the arms, the legs, the mouth (bulbar) or the breathing system. It is important to understand that MND is an individualised illness and so no two people are the same. It is also important to say that not everyone will experience all the symptoms and how one person is affected by the symptoms will differ from another. It must also be said that not every symptom experienced will be caused by MND. Something else may need investigation. For this reason, we recommend that people talk to their neurologist, GP or specialist nurse about any concerns or worries they might have.
Identifying and discussing the problems and symptoms that may occur can be very frightening. However, it is best to consider everything, to be prepared for all possibilities so that people can be reassured that whatever symptoms may develop, there are treatments and interventions that will help the person and their family to cope.
Muscle weakness and cramps
Muscle wasting in MND causes weakness. Depending on which nerves are affected the muscles may become weak and floppy or weak and stiff with painful cramps. The neck muscles can become weak and the head can sometimes fall forward and the chin rests on the chest. This can be extremely uncomfortable and it may affect balance. Again there are professionals to advise. The occupational therapist and physiotherapist may advise the use of a collar or neck support. Sitting in a reclining chair with good head support can also help alleviate the discomfort.
If the muscles in the legs become weak, walking may become difficult and a person could be at risk of falls. The physiotherapist may at first recommend using a support in the shoe to help lift the foot and stop it catching on the ground. The occupational therapist may recommend using a lifting and reclining armchair which makes it easy to get out of the chair and into a standing position. If the muscles get weaker, the physiotherapist may advise using a walking stick. If a person has difficulty climbing the stairs, the occupational therapist may recommend a stair lift. If the muscles get even weaker, the occupational therapist may recommend using a wheelchair. For every symptom, there is a recommended intervention.
Understandably, many people are reluctant to use a wheelchair. It can make them feel as if they are losing their independence having to use one. However, the opposite if often the case. There are benefits in wheelchair use as it can actually increase independence, enabling conservation of energy and help to get out and about more.
Some people may experience weakness in their arms and hands. A weakened grip can make it difficult to pick things up. The occupational therapist and physiotherapist will recommend specialized aids and equipment to help with these kinds of activities of daily living. The physiotherapist will recommend an exercise programme to maintain joint movement, reduce stiffness and discomfort, and maintain strength and flexibility in muscles not affected. Some people may experience pain in the shoulder joint, making it difficult to lift their arm while dressing. Pain can be relieved by taking medication and if necessary, the shoulder joint can be injected with a local anaesthetic.
If it becomes too difficult to transfer in and out of a chair or bed, the occupational therapist may advise using a hoist. They will help the person and family decide on the most appropriate piece of equipment and provide training to the caregiver in the use of equipment to make sure that everybody is safe.
Muscles that become stiff (spasticity) due to the illness may develop painful cramps. Taking regular exercise may help. The physiotherapist will be able to demonstrate how to move the limb to ease the stiffness in joints and muscles and muscle relaxants may be prescribed.
Staying in the same position
Pain may be experienced as a result of having to stay in the same position for extended periods of time. Being helped to change position may be sufficient to eliminate the pain. An electric profile bed with an appropriate mattress may be required to ensure comfort during the night.
The occupational therapist may advise using cushions on the chair to help relieve pressure. If it becomes more difficult to move and the pain is causing discomfort painkillers may be required. Initially pain relief such as paracetamol may be sufficient, stronger pain relief can be used when necessary. Advice on what is best at any time is always available.
These are very specific devices that enable people with very little movement to control a wide range of practical options in their home. They might include opening and closing doors and curtains, turning on and off the TV or radio, a buzzer for assistance or using an eye gaze for communication.
The appropriate healthcare professional and/or the assistive technology advisor will assess particular needs. The equipment requested is often very specific to the individual person’s needs and may take a number of months from assessment to supply depending on the equipment required. For this reason it is really important to plan in advance to ensure the appropriate equipment is ordered and delivered at the right time to maintain independence and avoid crisis management.
Sometimes this is very difficult as the person has to anticipate that the illness is going to progress and they may feel that by agreeing to get equipment they are giving in to the disease. It is better to think how helpful it will be to have equipment even before it is needed to practice using it and to know that it is there when/if needed.
Some people may experience pain, even though the nerves that sense pain are not directly affected by MND. The pain maybe caused by muscle cramps, stiffness, immobility, skin sensitivity, and stress on joints from muscle weakness and oedema (e.g. swelling of the ankles caused by immobility).
The physiotherapist and occupational therapist may advise a passive exercise programme, which means that they may recommend careful positioning to relieve discomfort. If the person is experiencing skin sensitivity, good skin and pressure care is vital, lightweight bed clothing, pressure-relieving mattress and cushions may help relieve the symptoms. Simple pain relief may be sufficient.
Muscle relaxants may help. However, the best pain relief is the pain relief that is needed, so stronger pain relief such as morphine can also be used when necessary. People are fearful of using morphine and some are worried that it may shorten their life or that they may become addicted but many people have taken morphine medicines for months, even years without side effects.
Fatigue or lack of energy is a common symptom associated with MND. It can range from mild weariness to extreme exhaustion. There are a number of ways of dealing with this and minimising fatigue through management strategies.
Occupational therapist and physiotherapists know how to advise on energy conservation techniques and labour saving devices. The dietician can advise on good nutrition and people find it most helpful when they follow that important advice. It is also helpful to schedule regular rest periods during the day, and sometimes to use a wheelchair to save energy.
Adaptations to the environment can make it more accessible such as using a stair lift to get upstairs or moving the bed downstairs. Fatigue related to breathing difficulties should also be discussed with the multidisciplinary team as respiratory supports may relieve these distressing symptoms.
For more information on this, please download our Movement & Mobility Fact Sheet.