Compiled by Helen L. Fiorini B. Sc. (Hons)
What is Motor Neurone Disease?
Motor Neurone Disease (MND) is a relatively rare, progressive, neurological disorder affecting at any one time up to 6 in 100,000 of the population. It targets the motor nerve cells in the brain i.e. those nerves that innervate the muscles of the body. Without the impulses transmitted through these cells muscles are unable to function and waste away. Depending on where along the chain of transmitting nerve cells the disease affects, the muscles may either appear weak and ‘floppy’ or appear spastic (a type of rigidity), or a combination of both. These would all lead to slow, clumsy and uncoordinated movement.
The Effect on Communication and Swallowing by MND
The person affected generally first complains of tiredness and the disease may initially affect either the muscles of the feet, hands or those involved in speaking. In the latter case, as these muscles also control chewing and swallowing, early signs could be swallowing difficulties. Speech requires very precise co-ordination but less muscle power and stamina than the act of eating. Hence it is frequently the case that swallowing may appear more affected than speech in the earlier stages.
As the disease progresses not only is mobility affected but so is the ability to communicate not just through speech but through writing and gestures too. Thus a thorough assessment by a speech language pathologist is essential, as is regular review so as to compensate for lost abilities. In this way the individual may continue to communicate effectively and eat without fear of choking. This is important as under nourishment due to fatigue or fear of choking would hasten the person’s physical decline and lead to preventable complications. A holistic approach through an integrated multidisciplinary team management of problems encountered is the only way to ensure that the person so affected is given all the assistance possible to enjoy the best possible quality of life that circumstances allow.
Tips for Communicating Better with Someone with MND
Some tips to reduce the effort needed to communicate:
- Reduce background noise
- Sit close by so the person with MND does not have to shout
- Sit facing the person so as to pick up as many visual cues as possible whilst they are speaking
- Unless previously hearing impaired, MND does not affect hearing so don’t shout
- However a person with MND may speak in a low voice so you may need to have yours checked. A speech amplifier may also be needed.
- Establish a familiar routine so as to anticipate the person’s needs
- Have a variety of means to communicate with; e.g. pen and paper, white board and marker, alphabet chart, and/or eye pointing chart
- Establish a yes/no non-verbal response e.g. blink eyes twice for yes, once for no
- Provide choices or structure questions for yes/no answers
- Motor Neurone Disease Association (https://www.mndassociation.org/)