Living with, or caring for a loved one with, a neuromuscular condition can be tough at times. There are many sources of support you can turn to when you are feeling down or needing some extra help, including state and territory neuromuscular organisations and other community organisations. You can also seek support from your GP, a psychologist, counsellor or social worker.
Your state or territory neuromuscular (NMC) organisation can provide information and advice on what support they can offer such as local support groups, camps, programs, services in the local area, access to equipment, advocacy or assistance in times of crisis. They can also provide an ear to listen if you need someone to talk to or guide you to get the assistance you are needing.
The following community organisations can help you manage your mental health or social and emotional wellbeing and cope with tough times.
The term social and emotional wellbeing is used by many Aboriginal and Torres Strait Islander people to describe the social, emotional, spiritual, and cultural wellbeing of a person. The term recognises that connection to land, culture, spirituality, family, and community are important to people and can impact on their wellbeing. It also recognises that a person’s social and emotional wellbeing is influenced by policies and past events. The Australian Indigenous Healthinfonet has information covering topics such as staying strong, grief, loss and trauma, anxiety and stress, depression and other mood disorders. It also provides information about programs in your State or Territory and details of who to contact for crisis support.
- Beyond Blue, 1300 224 636
Beyond Blue provides information and support to help everyone in Australia achieve their best possible mental health, whatever their age and wherever they live.
- Embrace Multicultural Mental Health, (02) 6285 3100
Embrace Multicultural Mental Health (the Embrace Project) is run by Mental Health Australia and provides a national focus on mental health and suicide prevention for people from culturally and linguistically diverse (CALD) backgrounds. It provides a national platform for Australian mental health services and multicultural communities to access resources, services and information in a culturally accessible format.
- Headspace, 1800 650 890
Free online and telephone service that supports young people aged between 12 and 25 and their families going through a tough time.
Head to Health is an Australian government website that helps you find the right digital mental health resources for your needs. If you’re trying to improve your own mental health or support somebody else with mental health issues, Head to Health provides links to trusted Australian online and phone supports, resources and treatment options.
- Kids Helpline, 1800 55 1800
Kids Helpline is Australia’s only free, private and confidential 24/7 phone and online counselling service for young people aged 5 to 25.
- Lifeline, 13 11 14
Lifeline provides 24-hour crisis support and suicide prevention services to Australians experiencing a personal crisis.
- ReachOut, (02) 8029 7777
ReachOut is Australia’s leading online mental health organisation for young people and their parents. Their practical support, tools and tips help young people and their parents get through anything from everyday issues to tough times.
- Youth Beyond Blue, 1300 224 636
The Youth Beyond Blue website is a dedicated site for young people aged 12-25 and their parents. This website provides important information on mental illness and who can support you, such as friends, family, health professionals.
Palliative Care Australia explains “Grief is how we respond when we experience loss. Grief is a normal, natural and inevitable response to loss and it can affect every part of our lives. Grief can seem like a roller-coaster ride with ups and downs, or it may feel like we are being battered about like a little boat in a storm. Sometimes it can seem overwhelming and frightening. Grief allows us to gradually adjust to our loss and find a way of going on with our lives without the person who has died.”
Further information about understanding grief can be found on the Palliative Care Australia website.
If you are experiencing difficulties with grief you can talk to your GP or seek assistance from any of the organisations listed above.
A Mental Health Care Plan can help you access subsidised treatment provided by mental health professionals for anxiety, depression and other mental health concerns.
A Mental Health Care Plan is a plan your GP writes with you about treating a mental health condition. You don’t have to be diagnosed with a mental health condition to talk to your GP about making a mental health care plan.
A plan helps you to access eligible allied health professionals like psychologists or social workers who can help you to feel better and live well. If you have a mental health care plan you are entitled to a Medicare rebate on up to 10 individual sessions or group appointments with a psychologist or social worker in a calendar year. After 6 sessions, you will return to your GP to revisit how your treatment is going, and then if needed, you can access the next 4 sessions.
Talk to your GP about a Mental Health Care Plan and your treatment options to help you manage your mental health and wellbeing.
Seeing a psychologist, counsellor or social worker can be incredibly helpful if you, your child or other members of the family are having a tough time or struggling with negative thoughts and feelings. Learn more about what services are available and how to access them here:
COVID-19 is a new form of a coronavirus that causes respiratory illness. Symptoms include fever, coughing, a sore throat and shortness of breath. The virus can spread from person to person through:
- close contact with an infectious person (including in the 48 hours before they had symptoms)
- contact with droplets from an infected person’s cough or sneeze
- touching objects or surfaces (like doorknobs or tables) that have droplets from an infected person, and then touching your mouth or face.
COVID-19 is a new disease, so there is no existing immunity in our community. This means that COVID-19 could spread widely and quickly.
COVID-19 and neuromuscular conditions
There is not yet any scientific evidence about the risk of serious complications from COVID-19 for people with a neuromuscular condition. However, people with disability, including neuromuscular conditions, are considered a higher risk of serious illness if they get the disease as they are more likely to have:
- weakened respiratory and cardiac muscles
- other chronic health issues
- weakened immune system.
So it is important to take extra care to protect people living with a neuromuscular condition from coronavirus. This includes the person with the condition, as well as families, carers, disability support workers and medical professionals.
How to protect yourself
The best ways to reduce your risk include:
- self-isolating at home
- practice social distancing at least 1.5 metres from other people
- asking people who need to come into your home or who assist you to wear gloves and masks
- disinfecting surfaces daily
- make sure you continue to go to any scheduled appointments with your GP or specialist but if you are worried about going to see them in person, contact them to arrange a telehealth consultation.
- speak to your pharmacist about having medication delivered to you
- consider getting groceries and other essentials delivered. A priority service is available for NDIS participants.
- Coronavirus (COVID-19) advice for people with disability (Australian Government) has excellent information about how to protect yourself, services and support available to you, information for families, carers, support workers, health professionals and home care providers
- The Muscular Dystrophy Association (US) has a dedicated section of their website for COVID-19 Recommendations for the Neuromuscular Community
- Muscular Dystrophy NSW's Coronavirus information provides links to up-to-date Australian and international resources
- The Coronavirus Information Hub from Muscular Dystrophy QLD has an extensive library of resources to assist members of the neuromuscular community with decision making during this time
- Muscular Dystrophy WA has an excellent list of useful links for updates and resources relating to COVID-19 and neuromuscular conditions
- The Parent Project Muscular Dystrophy has a range of information for people living with DMD and their families regarding COVID-19 Vaccination & Duchenne: What You Need to Know
On this website, you can find information about seeing a GP, mental health treatment plans, mental health professionals, rural and remote support, seeing a social worker or finding help on-line or via phone.