In this blog, we are going to discuss exercise for people with motor neuron disease.

Motor neuron disease (MND) covers a number of conditions where messages from the motor neurones gradually stop reaching the muscles (neurodegeneration). This leads to muscle weakness often with visible wasting. Other symptoms can include muscle cramps and spasms, stiff joints, speech problems, difficulty swallowing and breathing and changes to thinking and behaviour. People are affected in different ways and not all symptoms will affect everyone. The course of the disease is difficult to predict as symptoms progress at different rates. MND is life shortening and there is no cure.

Research

The following information is from Motor Neurone disease: Assessment and Management. Appendix N Research Recommendations N.8. Exercise programmes:

‘MND patients are often advised to avoid physical activity in order to minimise overwork muscle damage and fatigue. However, deconditioning secondary to reduced activity can compound the muscle weakness, and deconditioning caused by MND impacts on independence, quality of life and carer burden. 

Two RCTs (randomised controlled trials) were appraised in a recent Cochrane (2013) meta-analysis. The studies were of low quality but indicate that both aerobic and resistance exercise programmes produced a significant mean improvement in the ALSFRS (ALS functional rating scale) measure of function without effect on quality of life, muscle soreness or fatigue. A large randomised controlled trial is required to determine whether exercise is beneficial or harmful for people with MND.’

You can read the full article here: https://www.ncbi.nlm.nih.gov/books/NBK367768/

NICE recommendations for exercise (2016)

Consider an exercise programme for people with MND to:

  • maintain joint range of movement
  • prevent contractures
  • reduce stiffness and discomfort
  • optimise function and quality of life. [new 2016]
  • Choose a programme that is appropriate to the person’s level of function and tailored to their needs, abilities and preferences. Take into account factors such as postural needs and fatigue. The programme might be a resistance programme, an activeassisted programme or a passive programme. [new 2016]
  • Check that family members and/or carers (as appropriate) are willing and able to help with exercise programmes. [new 2016]
  • Give advice to the person and their family members and/or carers (as appropriate) about safe manual handling. [new 2016]
  • If a person needs orthoses to help with muscle problems, they should be referred to orthotics services without delay, and the orthoses should be provided without delay. [new 2016]

(NICE Guideline, No. 42. National Clinical Guideline Centre (UK). London: National Institute for Health and Care Excellence (UK); 2016 Feb.)

Recommendations: Exercise for people with motor neuron disease

As all clients with MND will have different types and symptoms and will be at different stages of the condition. The main advice is to manage the symptoms to improve quality of life.

Physical activity can help to strengthen unaffected muscles and maintain flexibility in muscles that are affected. Mobility will help prevent stiffness and low intensity cardiovascular exercise can be beneficial for people with breathing difficulties by helping to maintain lung capacity. All exercise needs to be slow and gentle and tailored to individual needs. 

  1. Treadmill walking. This can be beneficial to improve and maintain gait and leg strength and clients can use the side rails for support.
  1. Mobility and exercises to improve range of motion and improve circulation.
  1. Upper body strength work. This can help maintain strength to help with every day activities such as standing from sitting.
  1. Gentle stretching, working specifically on affected muscles. These may need to be trainer assisted or passive.
  1. Functional exercises that mimic ADL (activities of daily living) such as balance, posture and stretching. 
  1. Swimming and exercising in water, if appropriate.
  1. Relaxation and breathing exercises. The position of the client needs to be considered if breathing and swallowing are affected. Some people with MND have reported that using music has been a calming process and helped to reduce stress.

If you are referred to work with a client living with MND then it is advisable to speak to any healthcare professionals they are already working with such as physiotherapists or occupational therapists, ensure you have medical clearance from their GP and partake in further CPD training to expand your knowledge.

Author: Helen Tosdevin