Mobility and personal care in MND

Mobility

The Problem

MND affects people in different ways, but most will experience some form of physical disability. This will affect movement and mobility, although the rate of progression can vary widely. Lack of mobility presents a number of challenges for a person with MND and for those caring for them.

Changes to mobility can happen rapidly and needs change faster than the services can be put in place. It is important therefore to plan sensitively and as early as possible for the future needs of the person with MND and their family where appropriate.

Support you can give

In the early stages of mobility problems, people may be able to use walking aids such as walking sticks and Zimmer frames, however as the disease progresses you will need to discuss longer term solutions with them.

In the long term, people living at home will need specialist equipment such as grab rails in the home, disabled bathroom facilities, a stair lift and a specialist wheelchair.

A full assessment is normally carried out by a physiotherapist and/or occupational therapist, who identifies the movement and handling needs of the person with MND and also their carers. They will normally discuss:

• safe techniques for handling people with MND
• how the limbs, head and neck should be supported during transfers
• equipment that may help, such as sliding sheets, hoists, profiling beds, mattress elevators, riser-recliner chairs and turning tables.

Muscle cramps and stiffness

As MND progresses the limbs gradually become weaker. Muscles can become stiff, also known as spasticity, resulting in joint aches and pains. These factors may increase the risk of falls.

Support you can give

Muscle cramps can be helped by physiotherapy and, in some cases, a medication called quinine. Cramps typically improve in the later stages of the condition.

For muscle stiffness physiotherapy can be helpful by recommending supporting exercises which:

• Maintain mobility for as long as possible by preventing muscles from becoming stiff
• help maintain maximum range of movement (ROM)
• help maintain comfort and reduce problems associated with muscle weakness
• strengthen muscle groups not yet affected by MND (which can help to
• compensate for those that have weakened or wasted)
• help maintain circulation through active muscle movement.

In some cases, medication such as baclofen, tizanidine or small doses of benzodiazepines, eg clonazepam may be prescribed to help relax the muscles. Dosage of muscle relaxants should be carefully adjusted to avoid increased weakness and decreased mobility.

Pain relief

If the person experiences pain, it may be due to a number of factors including the muscle cramps and stiffness as above. Other causes may be immobility, poor posture or skin sensitivity. Occasionally there may be some neuropathic pain.

For the relief of skin sensitivity consider a pressure relieving mattress and ensure the person is appropriately supported to change position and maintain skin integrity.

If painkillers are necessary the type recommended will depend on how severe the pain is. Mild to moderate pain can often be controlled using non-steroidal anti-inflammatory drugs (NSAIDs) such as ibuprofen.

Personal care

The Problem

Changing levels of mobility and independence means many people will need help with personal care, including washing, dressing, and using the toilet. The very personal nature of these tasks makes this a sensitive area, and it is important that you understand not everyone will be open to help straight away.

MND does not normally affect people’s ability to control their bladder or bowel function, but loss of mobility can make it hard to get to the toilet quickly enough. This can be very distressing for people with MND.

Support you can give

Simple things like going to the toilet are complicated by MND and can cause unnecessary distress if not addressed quickly. By putting some simple and effective processes in place, you can help support the person with MND to maintain their dignity and keep as much control over their personal care as possible. For example, you can:

• prepare things in advance and set up a routine
• ensure privacy in all areas of personal care as this is vital and ensure personal space is respected
• ask the person with MND what they would like to do for themselves
• make sure you treat people compassionately, and as you would like to be treated
• help them as soon as they request to use the bathroom, and also discuss the option of strategic bathroom breaks when they are travelling so the situation is less likely to become urgent for them while out and about.

One of the first tasks for many people with MND is to make changes to their bathroom and install equipment, especially hand rails, toilet risers, bath/shower seats and hoists.

Some recommend a Clos-o-Mat toilet which combines functions of a WC and bidet with addition of warm air drying.