Support for people living with Essential Tremor
Caring looks different for everyone. Whether you are nearby or far away, young or older, juggling work and family or living together, there are practical strategies you can follow to ensure you are supporting the person living with Essential Tremor (ET), while maintaining your wellbeing.
Not all carers live in the same household as the person they support. You may be balancing caring for your family, work or study and living at a distance can sometimes feel difficult. Regular check-ins by phone or video call, setting up reminders for appointments and organising support services nearby can help you stay connected. Even small gestures, such as sending a message or arranging grocery deliveries can make a big difference in helping the person living with ET feel supported.
For younger carers, supporting someone with ET often coincides with key life stages such as school, tertiary study or starting work. Finding the right balance between caring, education and friendships can be overwhelming at times. It helps to speak with teachers, youth coordinators or employers about your caring role so they can provide flexibility. Seeking out peer support networks for young carers can also reassure you that you’re not alone.
Some carers live with the person they support and provide care most of the time. Daily routines often overlap, such as planning meals, managing appointments and sharing household tasks. Living this closely can strengthen relationships, but it may also become tiring.
Including breaks, organising respite through services and sharing tasks with family or friends can help ensure caring remains sustainable and positive for everyone.
For older carers, providing support to a partner, sibling or friend with ET often means balancing your own health needs at the same time. Caring may involve managing medications, adapting the home environment and assisting with mobility. Looking after your own physical and emotional wellbeing is just as important, so ensure you seek regular health checks, plan time for rest and draw on available support services. Your welfare supports your ability to continue caring.
Many carers balance employment and family responsibilities alongside their caring role and this can be especially stressful when unexpected situations arise. Finding a rhythm that works for your household takes time and patience. It may help to speak with your employer about flexible hours or carer’s leave, use calendars or apps to keep track of commitments and share caring duties with others when possible. It’s also important to accept that plans may need to change and allow space for flexibility. Achieving balance is an ongoing process, but with support and thoughtful planning, it is possible to manage work, family and caring responsibilities in a way that feels sustainable.
Caring for a child or teenager with ET means helping them manage daily tasks while also supporting their growth, independence and emotional wellbeing.
Young children may need extra help with tasks like eating, writing or dressing and will rely on your patience and encouragement as they learn to adapt. Teenagers, meanwhile, might seek greater independence but still benefit significantly from your understanding and advocacy, especially at school or in social situations where ET symptoms may cause frustration or embarrassment.
Partnering with your child’s school is to ensure they receive appropriate support. Communicating openly with teachers, school counsellors and support staff can help raise awareness about ET and how it affects your child. Work together to develop practical strategies such as:
- Allowing extra time for written assignments or exams.
- Providing access to assistive technology or adapted equipment.
- Creating a supportive classroom environment to reduce stress and anxiety.
- Encouraging peer understanding to foster inclusion and reduce bullying.
Advocating for your child’s needs helps create a positive learning experience and builds their confidence.
Children and teenagers with ET may experience frustration, embarrassment or anxiety related to their symptoms. Emotional ups and downs are understandable and caring for their mental health is just as important as managing physical symptoms. You can support your child by:
- Encouraging open conversations about how they’re feeling.
- Helping them develop coping strategies, such as mindfulness, deep breathing or hobbies that bring joy.
- Seeking professional support when needed, such as psychologists or counsellors specialising in chronic health conditions.
- Offering consistent reassurance and celebrating their strengths and achievements.
Caring while also managing parenting, school and family responsibilities can feel overwhelming. It helps to seek support for yourself by talking with other parents, carers or health professionals who understand your situation and can offer practical advice.
Guidance for parents of children with Essential Tremor on finding support
While there are currently no specific support groups in Australia exclusively for parents of children with ET, there are many valuable resources and networks that can assist you on this journey. Here’s how to find the support you need:
The key people in your child’s care are the professionals in their support team. This usually includes the general practitioner or paediatrician coordinating care, alongside the occupational therapist and other members of the multidisciplinary team. They can give advice specific to your child’s needs and refer you to allied health services, school support staff and community programs.
Services like Carer Gateway and Carers Australia offer information, counselling, respite options and skills training to help you manage the practical and emotional demands of caring. They support carers of all ages and conditions, including families caring for a child or young person with ET.
Join peer support groups or forums for carers of people with neurological or movement disorders. These groups provide understanding, shared experiences and practical tips.
Explore young carer support networks if your child is a young carer themselves or part of a family caring for multiple members.
Educate school staff about ET so they are across your child’s needs. Collaborate on adjustments to learning activities, assessments and social inclusion strategies. Most Australian states have disability liaison officers or student support services to assist.
Community groups, local councils or service clubs (e.g. Lions) might host health-related support activities where you can meet others facing similar challenges.
Consider raising awareness in your community about ET and its impact on children and families. Connecting with others can sometimes lead to the formation of new support networks tailored to your needs.
Join the ET community in Australia
We founded Essential Tremor Australia to support the 300,000+ Australians living with ET.
ET is the most common movement disorder, yet it remains widely misunderstood.
We raise awareness to reduce the stigma of ET, advocate for the community, and provide support and information to live well with the condition.
