Blog

15 Jun 21

How to Live Safely with MND

Sally Withers | Healthcare Tips , NDIS/Disability

According to MND Australia, every day two Australians are diagnosed with MND and two die from the disease. There are currently over 2,100 Australians living with MND. 

What is MND?

Motor neurone disease (MND) affects the nerves (motor neurones) that communicate between the brain and the muscles that enable us to move, speak, swallow and breathe. As motor neurone disease progresses, these messages gradually stop reaching the muscles, leading to stiffness and weakness. 

At what age does MND start?

MND can affect adults of any age, but it is most common in older adults and slightly more common in men than women. Most people with the condition first develop their symptoms when they are in their 60s. The life-time risk of developing MND is 1 in 300.

According to Fight MND About 10% of MND is familial – meaning that the disease is passed down from generation to generation within the same family.  The remaining 90% of people diagnosed with MND are classified as having sporadic disease meaning there is no family history of MND at the time of diagnosis. 

Life Expectancy of a person with MND

MND is a life-limiting disease, and although MND progresses differently for each person, the average life expectancy is 2-3 years.

Is there a cure for MND?

There is currently no cure for MND, but symptoms can be managed to help improve quality-of-life and potentially extend life expectancy. 

Although there is no cure for motor neurone disease (MND) yet, research has shown some interventions can help people with MND to live better for longer

The way that people manage their earlier symptoms of MND can affect how later symptoms can be managed. By having discussions early on in the diagnosis period about symptom management helps people with MND to plan ahead as well as understand and comprehend what they may experience 

Ways to ease MND pain and discomfort

  • Electrically operated beds and chairs and special cushioning can assist the person with MND improve their mobility and comfort 
  • Special cushions and mattresses can provide extra ‘padding’ and pressure relief, especially if the person has lost weight. 
  • Warm packs and baths are often useful, but care needs to be taken with temperature control 

Managing eating & swallowing with MND

Some people with MND experience swallowing difficulties which may see the need to change the way they eat and what they consume. 

 The following suggestions may help when eating:

  • Using special cutlery and arm rests to support the arms 
  • Raising the plate by placing it on a box or a few books 
  • Eating high calorie and high fat foods 
  • Eating different textures and types of food 
  • Eating little and often, and not trying to eat a main meal in the evening when tired
  • Swallowing is generally easier when the person is sitting as straight as possible with the head upright; avoid tilting the head back or bending it forward towards the chest; some people find swallowing easier if the head is slightly forward 

Strategies to help people with MND sleep better

  • If you can, try not to remain in the same position in bed for too long 
  • Consider purchasing an electric bed, as it can be adjusted to a variety of positions to aid discomfort 
  • Side bed rails, bedside furniture and additional pillows can provide additional support and comfort
  • Muscle soreness or pain from joint stiffness may be relieved with medication prescribed by the GP

Managing MND fatigue

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

Some strategies for managing MND fatigue:

  • Plan daily schedule & activities in advance 
  • Take regular rest periods 
  • Rest between going out 
  • Do not exercise to the point of excessive fatigue, cramps, or muscular weakness 
  • Move slowly, with frequent rest breaks, taking a few breaths before recommencing a task 
  • Keep heavier & more strenuous tasks for those times when you have a greater amount of energy 
  • If breathlessness occurs, stop what you are doing and take a break & rest 
  • Discuss, with an occupational therapist, aids and equipment that can make tasks easier  
  • Make the personal environment safe and easy to move around 

How to keep active with MND

Most people with MND develop mobility problems to a greater or lesser extent. 

  • It is unlikely that people living with MND will stay in bed for long periods, but they may need help moving around. Some people have a tendency to fall, sometimes without warning.  
  • Allied health professionals like Occupational Therapists and Physiotherapists can advise about access around the home and assist in the provision of appropriate aids to improve mobility and safety.

A personal alarm can help MND sufferers feel safer at home & away

A personal safety alarm can help protect users including MND sufferers in the event if they fall or feel unwell.  A user needs to only press one button on the personal alarm and an alert for help will be raised and sent to the MePACS Response Centre. Wearing a personal alert alarm provides that reassurance and peace of mind that if something happens there are trained professional available 24/7 who will respond within 2 minutes. They will communicate via the alarm unit to understand the situation and call the relevant help.   

MePACS Home & Mobile Personal Alarms

mepacs home and mobile unit

A MePACS Home Alarm is a compact device that can be worn in the house and the garden. The lightweight pendant can be worn around your neck or on a wrist strap and it’s also water resistant, so can be worn in wet areas like the shower or bath where most falls occur.  

A MePACS Mobile Alarm is a lightweight and durable device that can be used when you are out and about. With the added feature of fall detection capability within the mobile alarm you and your family can be rest assured that if you are out and about that the alarm can detect if you have a fall.  

With personal alarms to suit both MND and a range of disabilities as well as independent lifestyles, you can rely on MePACS to help you feel safer both at home and away.  

Unfortunately, with MND there is no cure. However, with early planning and intervention management can help individuals to live a longer and better quality of life. 

 

*This information does not intend to replace advice from a qualified health professional. Speak to your GP first about any health concerns.

MePACS is a registered National Disability Insurance Scheme provider. Find out more about our 24/7 fast response personal alarm service: www.mepacs.com.au/ndis or call our friendly team on 1800 685 329.
Join Now