Hot topics in April at the MND info line included, preparing for a power outage, types of ventilation, managing fatigue and more. We have chosen the top-5 questions and responses to share with you.
1. How can I prepare for a power outage so I can continue using non-invasive ventilation (NIV)?
It is important to have an emergency plan and consider an alternative power supply to ensure continued access to NIV in the event of a power outage. A Bilevel Positive Airway Pressure (BiPap) machine is commonly used by people with MND which requires electricity or battery to operate.
Below are some suggestions which can help you prepare for a power outage:
- Speak to your respiratory specialist and your allied health team to find out whether there are back-up batteries for your device/model. Some models have a backup battery already installed.
- Register as a life support customer with your power company. By registering you will be kept up to date regarding scheduled outages and will be marked as a priority if there are power supply issues. Ausgrid also have an Action Plan Checklist to assist in planning for a power outage- Life Support Checklist and Action Plan.
- Consider purchasing an uninterruptible power supply (UPS). This is a device that provides power if there is a problem with normal electricity supply. These devices can provide power for up to 6 hours. Generators can also provide power temporarily to these machines.
- Have the contact details of your power company easily accessible so you can contact them quickly when there is a power outage.
In the case of an outage or a breakage to the NIV and the person using NIV becomes anxious and breathless, there may be need to call an ambulance and be taken to hospital until power is restored or the machine is replaced.
For further information:
2. What is the difference between invasive ventilation and non-invasive ventilation (NIV)?
The major difference between non-invasive ventilation (NIV) and invasive ventilation is that NIV provides ventilation support using a face mask whereas invasive ventilation requires an artificial airway through a tracheostomy or endotracheal tube which needs a surgical procedure. Invasive ventilation requires a machine to provide air to the lungs for 24 hours a day and is used when a person can no longer breathe on their own. In Australia invasive ventilation is used in less instances with MND.
3. What are strategies to manage fatigue?
Fatigue is a common symptom of MND. There are several ways fatigue can be managed.
Strategies to help manage fatigue include:
- Eating enough to maintain energy levels.
- Resting between activities.
- Using aids and equipment to help with tasks to save energy.
- Getting some assistance to help with cleaning, personal care and food preparation.
For specific strategies tailored to you, speak with your occupational therapist, physiotherapist and dietitian.
For more information:
4. What are some strategies to support with managing cognitive and behavioural changes?
Some people who are diagnosed with MND experience cognitive and behavioural changes, there are a few strategies that can help manage symptoms.
Strategies to help with cognitive and behavioural change include:
- Increase understanding of symptoms with friends and family.
- Simplifying communication and directions.
- Keeping to a routine.
- Using aids to help with memory.
- Accessing counselling.
For further support contact your general practitioner, neurologist, MND Clinic or palliative care team. For further information, visit:
5. What is allied health?
Allied health is a term used to describe qualified practitioners who have expertise in preventing, diagnosing and treating a range of conditions and illnesses. Allied health practitioners are an important part of the multidisciplinary health team for a person living with MND.
Examples of allied health practitioners include:
- Occupational therapist- provides advice regarding mobility, function, everyday activities along with equipment and home modification recommendations.
- Physiotherapist- provide advice about pain management, mobility, breathing and positioning. Physiotherapists can also advise about passive exercise programs and stretching.
- Speech pathologist- help manage communication, swallow and saliva symptoms.
- Social worker- provide general counselling and information about community services.
For further information regarding multidisciplinary care and allied health visit:
- Multidisciplinary care
- MND Aware Living with MND - Aspects of care
- What is allied health? - Allied Health Professions Australia (ahpa.com.au)
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