FND Living is run by people with Functional Neurological Disorder (FND) to offer support to people with FND living in Queensland and wider Australia and their family, friends and carers.
After misdiagnosis in 2017, then an FND diagnosis in 2018 but no access to treatment, Nerine moved back to QLD at the end of 2019. Although she was linked in with some fantastic and knowledgable health professionals she struggled to find practical information. In early 2021, she started the North Brisbane Support group and it has grown steadily since.
Belinda was one of the first people to join the North Brisbane group and has since moved to Toowoomba and linked in with people with FND in that community and started a formal group. Despite her youthful appearance, Belinda is an FND Veteran, having been diagnosed in 2016. Belinda came to the first catch-up and to her dismay, not only did she meet new people but then proceeded to get into mischief, get stranded on a train because she was laughing too hard and has been having altogether much more fun than one ought with a condition like FND.
Mark was one of the first blokes to join the North Brisbane group. He was diagnosed in 2021 (though it’s likely he’s had FND since 2011) and joined us just two weeks later, looking for information. He says he got answers to so many questions in that first meeting and we are delighted he decided he liked us enough to keep coming back. (We are also grateful for the brownies his daughter sometimes makes for us). He claims that the answers from the combined lived experience of the group have helped provide a better insight into the discussions he’s had with his medical team. Mark has become a firm friend to many of us and he is still learning new things every time he comes to our catch-ups.
Sue came to our group in 2022, suspecting she’d had FND since a mild stroke in 2020 but was not yet formally diagnosed. Sue was determined to get answers and used her inside knowledge of the health system to finally see a neurologist to confirm her suspicions. Her superior sleuthing skills unearthed our group and we are pleased she found us worthy. Apparently, she’s learned a thing or two from us, including realising that while she is definitely not imagining things, “yes, FND is all in her head” because really, where else is a brain meant to be? With contagious exhuberance, Sue recently trekked over to the UK to meet up with the team at FND FrieNDs, paving the way for an international friendship.
We all have FND and we all experience a different combination of symptoms. One of the main benefits we bring is that we all have lived experience and we love sharing things that have worked for us, just in case it helps you. Sometimes our FND presents some challenges – for example, this website has been under development for 6 months but although it has taken us a little longer to get there, I hope you’ll agree it’s been worth it.
We provide support including practical strategies, resources, and a safe space to support each other, so that people with FND can better manage their symptoms and get on with living. We currently host in-person support groups, provide an informative website and actively advocate to provide a voice for people with FND.
Functional Neurological symptoms are commonly seen in neurology clinics and yet there is still little-known about the condition and very few practical supports to help with daily living.
Knowledge of the condition within the health sector is often limited or outdated. There are frequently significant delays in accurate diagnosis and limited options available in terms of treatment. Functional Neurological Disorder has significant impact on lives, yet most information is limited to treating individual symptoms – focussing on the condition rather than how to live a full life with (or in spite of) the condition.
Our goal is to inform, connect and support people with FND, so they can find meaning in their changed life and help them do things that bring joy.
FND Living – same you, new journey!
We’d also like to thank our newest contributors – people with FND who share ideas and information with us: Alex A, Audrey M, Greg M and Suzi F.