As we enter the final month of 2024, this will be the last frequently asked questions blog for the year. It is important to note that the MND NSW Infoline will close at 12pm on 24 December and will not reopen until 6 January. During this time if you have any questions or issues that arise, we encourage you to contact your health or medical team for support.
1. As a carer, how can I practice self-care?
Carers often put the needs of the person they care for before their own. It is important that carers look after their mental, emotional and physical health to sustain them in the caring role.
There are several strategies to support mental and physical health, these include:
- Speaking to someone: can help to relieve and manage stress, this person could be a counsellor, friend or other carers.
- Counselling: seeking professional support to help discuss concerns and to manage stress.
- Support Group: join a carer support group, provide the opportunity to speak to people who share similar experiences.
- Relaxation and mindful techniques: these techniques can help to manage stress and to help to enjoy day-to-day pleasures.
- Think about your needs: it is important that you are still able to enjoy social activities and to take a break from caring when possible.
- Eating well: Eating a diet consisting of a variety of foods is important for good health.
- Sleep: adults need between 7-9 hours a day, if you are struggling to reach these hours, speak with your doctor for advice.
- Exercise: it is important to make sure that you are exercising daily, this can include standing rather than sitting or taking the stairs rather than the lift.
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2. Where can I find information about the disability support pension?
The Disability Support Pension (DSP) is a source of financial support if you have a physical, intellectual or psychiatric condition that is likely to persist for more than 2 years that stops you from working. The amount of financial assistance that you can receive through the DSP will depend on your age and living conditions. To access the DSP, you need to meet non-medical and medical rules.
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3. How does Riluzole works, and what are the potential side effects?
Riluzole does not cure MND, but research indicates that it can slow the progression of MND and may increase life expectancy by up to 19 months. In Australia it is made available at a more affordable price for eligible people through the Pharmaceutical Benefits Scheme (PBS). It can come in both tablet and liquid form and can be purchased from a pharmacy with a script from a neurologist.
Riluzole works by blocking the release of a neurotransmitter called glutamate. In ALS it is believed that motor neurons release too much glutamate which overstimulates the neurone this is thought to cause the neurones to deteriorate and eventually die.
Side effects of Riluzole are typically minor with most common side effects including fatigue and nausea, however, some people experience effects to liver function.
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4. What is the role of the multidisciplinary care team?
A multidisciplinary care team is a collection of medical specialists and allied health professionals that have a coordinated approach to care. These teams may work in the community, hospital, clinic or residential care settings.
The team may consist of:
- General Practitioner.
- Physiotherapist, Dietitian, Occupational Therapist, Speech Pathologist.
- Palliative Care Team.
- Respirator Special.
- Registered nurse, MND Nurse, clinical nurse consultant or clinical nurse specialist.
- Social worker, psychologist or accredited counsellor.
- MND Advisor.
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5. What needs to be considered in order to make a bathroom accessible?
As someone with MND experiences a mobility decline, it is important to ensure that the bathroom is accessible. There are several factors that can assist in making a bathroom accessible:
- Is it large and spacious enough for a wheelchair and other equipment to fit in.
- Can the floor be slippery?
- Are there modifications made including:
- Hobless shower area.
- Hand shower.
- Grab rails.
- Shower stool or chair.
- Bath board.
For further support regarding making modifications to a bathroom, it is recommended to speak to an Occupational Therapist.
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