Until there's a cure ... there's care

The affect of MND includes many aspects.  Information and strategies about nine aspects are listed below.

1. Moving about

People with MND may need assistance moving around. Some people have a tendency to fall, sometimes without warning.

Lifting

Incorrect lifting techniques can cause great discomfort to the person being lifted, and may lead to severe strain on the carer's back muscles.

Strategies:

An occupational therapist, physiotherapist or district nurse will be able to suggest equipment to help with lifting, and teach the correct methods for lifting and transfer.

  • Try to prevent a person with MND from falling, not only because of the risk to the person, but also their carer, who may have to cope alone in getting them up from the floor. In instances where no one is available to safely lift someone up from the floor the emergency services can assist. Call “000” and advise the operator of your circumstances. Bear in mind that they may not have the capacity to respond immediately.
  • As with many things, prevention is the best strategy. Get advice from an occupational therapist on safety precautions such as handrails, and aids for mobility and balance.
  • Physiotherapists can also make recommendations for safety, such as plastic splints for ankle stability.

2. Tiredness

Fatigue is common with MND. By recognising the factors that worsen symptoms and by learning how to conserve energy, people can greatly improve their quality of life.

Symptoms:

  • Slower movement and speech
  • Short answers, lower voice volume, dull tone of voice.
  • Shortness of breathe, increased sighing.
  • Anorexia.
  • Irritability, anxiety, crying episodes, decreased smiling, preference for being alone.
  • Lack of care about things previously considered important, for example deterioration in appearance and grooming.
  • Increased forgetfulness.
  • Lack of interest in daily planning.

Factors that may aggravate fatigue include immobility, over-exertion, sleep disruption, pain, weak breathing, stress, anxiety, smoking, alcohol and some medications.

Plan activities in advance.

  • Take regular rest periods. Rest between activities and before going out.
  • Don't exercise to the point of excessive fatigue, cramps, or muscular weakness. Discuss with a physiotherapist exercise to alleviate stiffness, muscular tension, or pain.
  • Pace yourself by moving slowly, with frequent rests. Take a few breaths before recommencing a task. Keep heavier tasks for times of greater energy. Stop if you become breathless.
  • Use mechanical aids to make tasks easier.
  • Take shortcuts where possible, and sit rather than stand.
  • Try to establish a regular sleeping pattern.
  • Make your environment easy to move around in.

3. Breathlessness

Causes:

Many people with MND have decreased lung capacity because of muscle weakness. Any activity that requires increased respiratory effort will have an abnormal effect on a person with MND. This may be exacerbated by an ineffective cough that makes it difficult to clear the airway of mucus and saliva, and can result in lung infections.

Some people with MND also experience the feeling of not being able to get enough air, rather like the sensation of being in an overcrowded room. If shortness of breath becomes distressing your doctor should be consulted immediately.

Strategies:

Non Invasive Ventilation (NIV) may be prescribed by a respiratory physician or another medical professional. NIV is the use of a small portable machine to support a person's own breathing efforts delivered via a mask. It does not require any surgical procedures to use and the person with MND, their carer or paid workers can be easily trained in its operation.

Position is important. Sitting in a slumped position restricts lung capacity. Sitting up may be better than lying down, as the abdomen can cause upward pressure on the diaphragm and restrict lung expansion.
When sitting, the bottom should be well back in the chair, the back straight and well supported, the head in the midline and also well supported.

If excessive saliva or mucus is a problem, seek the advice of your doctor and speech pathologist about controlling it. A physiotherapist can also teach effective coughing. Excessive saliva may make it necessary to position the head so that the saliva can drain out of the mouth.

Avoid contact with people who have colds or flu, and consult your doctor about the need for influenza vaccination.

Try to keep the bedroom and living areas at a comfortable, steady temperature (around 18º and 21º respectively). Keep the rooms well ventilated, and avoid smoking or being in the presence of smokers.
Routine chest physiotherapy can be beneficial, but should not be too vigorous. The physiotherapist may also suggest a program of breathing exercises to help maintain lung expansion. Shortness of breath may be helped by breathing in a calm and purposeful way until the sensation has passed.


4. Insomnia

Causes:

  • Discomfort arising from immobility.
  • Pain due to stiffness of joints or muscles.
  • Muscle spastically.
  • Shortness of breath.
  • Excessive saliva or dry mouth.
  • Taking stimulants at bedtime.

Strategies:

  • Try not to remain in the same position in bed for too long.
  • Satin or silk sheets may help moving about in bed.
  • An electric bed can be adjusted to a variety of positions at the push of a button (side rails, bedside furniture and extra pillows can give added support).
  • A segmented overlay mattress and specialised pillows distribute body pressure more evenly.
  • Muscle spasticity may be relieved with quinine sulphate. Where pain from muscle tightness and joint stiffness is more disturbing, Lioresol (Baclofen) is a commonly used muscle relaxant. Analgesics such as aspirin or paracetamol relieve mild discomfort.
  • Joint pain may be relieved by stretching or range-of- motion exercises before retiring. A physiotherapist may be able to find the origin of the problem and recommend a remedy.
  • Breathing may be helped by elevating the head and chest with an extra pillow or two. This relieves pressure on the diaphragm and improves lung expansion.
  • It may be necessary to have an assessment by a respiratory physician to determine whether breathing intervention is necessary. Respiratory devices are available.
  • Before going to bed, avoid conflict, violent TV shows, over-exertion, caffeinated beverages, smoking, and heavy meals. Too much food puts pressure on the diaphragm and aggravates breathing problems. Warm milk, ovaltine or custard may induce drowsiness.
  • Go to bed and wake at the same time each day,  and reduce daytime napping. Make sure the bedroom is quiet, cool, dark, and comfortable. Light bedclothes allow easier movement and are more suitable for those who perspire freely.
  • Impaired swallowing reflexes may cause choking on saliva or mucus. This is annoying, especially for those with an ineffective cough. Sleep with the head elevated to prevent secretions from moving toward the cough reflex centre.
  • A slow rhythmic back rub or a light massage of aching muscles promotes relaxation. One exercise for reducing stress is deep abdominal breathing. Soft music or reassuring conversation can promote sleep.

Consult with a doctor or medical team to develop strategies tailored to the needs of the person with MND.


5. Cold limbs

People with MND are prone to getting cold. Some strategies are the following:

  • Wear warm clothing. Wool is better than synthetic materials.
  • Use sheepskin slippers, seat pads, woollen rugs and leg-warmers.
  • Gentle massage and frequent changes of position help circulation and stimulate warmth.

6. Swelling of the Feet and Legs

Swelling may be caused by a build-up of fluid in the tissues, especially in the feet and legs. It is important to consult your doctor, as there are several possible causes.

In MND it is most likely to be due to poor circulation resulting from inactivity and the affects of gravity. Occasionally the hands are affected as well as the feet and legs.

Strategies:

  • Keep the affected parts elevated on cushioned support.
  • Massage and gentle exercise will help to disperse the fluid.
  • Elastic stockings or crepe bandages may be prescribed by your doctor to keep the swelling down.

7. Pain, Stiffness and Cramps

Intense pain is not usual in MND but some pain or discomfort may arise from stiffness in joints, muscle tension and cramps. Muscle wasting can cause the weight of the arms to pull on the neck and shoulder joints, causing pain in those areas.  Physiotherapists can assist in developing strategies specific to the person with MND.

Strategies:

  • Supporting the arms may alleviate the problem.
  • When walking around, use slings or specially adapted clothing.
  • When seated, use cushions, armchairs or tables for support.
  • Physiotherapy and careful positioning are of general benefit.
  • Muscle relaxing drugs may be helpful, but can have side affects of drowsiness and weakness.
  • Cramp can be alleviated by gently massaging the affected part and keeping it warm until the pain subsides. The carer can learn to do this, moving the affected limbs to ease the pain. Cramp in the calf should be treated by straightening the leg and gently stretching the affected muscle. Cramp in the thigh can be relieved by straightening the knee and lifting the heel. Cramp in the hand should be treated by spreading out the fingers and pressing then downwards onto a firm surface. Medication such as Quinine may help in reducing attacks.
  • Regular turning and re-positioning will help to prevent sore areas of skin from developing, especially where bones are close to the surface.
  • Arrange clothing carefully to avoid sitting or lying on creased material.

8. Neck weakness

Weak neck muscles cause the head to drop.

Strategies:

  • Use reclining chairs, headrests, lightweight collars or chin supports.
  • A velcro or elasticised band placed around the forehead and attached to the back of the headrest of the chair is a useful way of preventing the head from dropping forward.
    Occupational therapists can offer useful advice.

9. Arm Function

We tend to take for granted what we do with our hands. We also take for granted the tools we use - cutlery, kitchen utensils, pens, toothbrushes and telephones.

When muscle weakness makes everyday tasks difficult, changing to a different type of tool or using a different method may make it possible to continue doing a particular task independently.

Some ideas are very simple. Many people devise their own means of overcoming problems or use ordinary labour-saving devices. There is also a wide range of specially designed equipment available. Use them if they're helpful. Accept help from other people, especially for ordinary tasks; it conserves energy for essential or more interesting activities.

Occupational therapists are qualified to suggest equipment, aids and strategies to assist with day to day tasks.