Motor Neurone Disease Care
A general guide to caring for a person with Motor Neurone Disease
Motor Neurone Disease is a rare and devastating condition which leads to degeneration of the spine and musculatory system, weakening muscles as it progresses (muscular dystrophy) and having a significant affect on a person’s motor skills.
The effect of muscle weakness can affect the way a person walks, moves, grips objects, talks, eats, drinks and breathes. It can also affect cognitive ability, thought processes and emotional wellbeing.
The disease is most common amongst the 40-70 year old age group and early signs can include general fatigue, slurred speech, jerking of the limbs and/or tripping and difficulty in swallowing.
Initial symptoms may only appear in, for example, one leg or arm, but then spread to include all the limbs. Other visible signs include:
Walking becomes increasingly difficult to the point where it can be dangerous due to unexplained frequent trips or falls.
Tasks that involve the use of hands and arms become more and more difficult. This can be life changing for someone who has worked with their hands all of their life.
As the muscles around the mouth, tongue, and throat become weaker, it can cause difficulty in swallowing, which will affect the ability to communicate and to eat.
Sneezing and coughing become weaker. This can cause problems as it can be difficult to clear the lungs due to mucus or irritation.
As the chest muscles are also affected, any exertion may result in breathlessness and a feeling of total exhaustion. Breathing may become more and more difficult.
The type of care that you can expect will depend on your need. Your care package may include:
Help with personal care.
Support with taking medication.
Assistance with household task including gardening and looking after pets.
Organising meals and doing shopping.
Accompanying you when you attend medical appointments.
Arranging for you to take part in social activities.
Being an advocate. Being a companion.
Look after you at night.
If you live alone, by having a live-in carer will make sure that you have support at night when MND symptoms can be more troublesome.