People living with a Functional Neurological Disorder (FND) are being given a chance to identify their triggers and 'retrain' their brain thanks to a new group treatment program at Mater Hospital Brisbane.
FND affects the functioning of the nervous system and the brain, causing it to send and receive signals incorrectly which causes a wide range and combination of neurological symptoms.
Mater Psychosocial Occupational Therapist Mary Matthews and her team are working to reduce the stigma of this condition and empower patients through an outpatient FND Group Treatment Program, which was developed after reviewing the FND outpatient experience of isolation and a desire to meet others with the same diagnosis.
Symptoms of the disorder include blackouts or drop attacks, paralysis or limb weakness and abnormal movements that suggest the presence of an underlying neurological condition, however none of the symptoms are explained by an organic disease.
Ms Matthews said FND mimicked other conditions, with many patients being misdiagnosed.
She said FND was more common in women and occurred more frequently in people between the ages of 20 and 50, although adolescents and older people could develop it.
"To treat the condition, neurologists complete an initial assessment which may include a diagnosis using the Hoover's Sign and the tremor entrainment test, and then refer onto occupational therapists, physiotherapist and/or psychologists," Ms Matthews said.
"This assists with helping the patient to identify their triggers and retrain their brain by unlearning abnormal and dysfunctional movement patterns and relearning normal movement."
Mater Neurologist Dr Daniel Schweitzer said there was ongoing stigma around FND within healthcare systems.
Dr Schweitzer diagnoses about 10 new patients at Mater every month with FND.
"FND is one of the most common conditions that I encounter in my clinic," he said.
FND is described as a 'crisis' by neurologists and is the second most common reason for a neurological outpatient visit, according to Dr Schweitzer.
"There may be a reluctance among healthcare practitioners to manage patients with FND because the cause of the problem is not due to a structural (or organic cause) but is rather caused by a range of other factors, including but not always psychological factors, that are not well understood in clinical practice," he said.
"FND is a common neurological condition anecdotally. The prevalence of FND in the Australian community is unknown. We do not have a national database which means that the estimated prevalence most likely under-estimates the true prevalence of FND in the community."
Ms Matthews said the wait list for public outpatient psychosocial occupational therapy treatment in Queensland was 'ever growing' and a group program at Mater addressed the need for timely treatment.
"We designed the program using key evidence-based material that is normally used in individual FND therapy sessions and adjusted it for the group setting," Ms Matthews said.
"There's not enough help in the public sector for these patients. The condition may not always be cured but it can be managed.
"My caseload is varied. I have treated a young boy with FND who was bullied at school. I also have women who have been victims of domestic violence and in difficult relationships, as well as victims of childhood abuse.
"There are many factors that contribute to the presentation of FND and every case is different which can mean treatment is tailored. Stress is a big factor in triggering this condition."
With an increase in referrals of patients with FND to Mater, Ms Matthews said the first group had six participants and the weekly program included a discussion and practical activity to manage symptoms to assist with education, grounding, breathing and recognition of emotional awareness and processing.
"The participants in the groups have been very engaged and assisted each other with strategies and support. They have remained in contact and are very motivated to advocate for increased awareness of FND," Ms Matthews said.
"Throughout the sessions I help patients monitor what they are going through and identify what their triggers are. I will teach them techniques to alleviate their individual issues."
FND sufferer Misty Feeney, from Slacks Creek, said the group therapy sessions had offered her hope and a strong focus following her diagnosis in 2021.
"It gives me validity and a backing knowing there is something wrong with me," Ms Feeney said.
"It's not an easy path but there is hope just knowing the more neuropathways we form and regulation techniques we use, the better our symptoms will be for it, ideally reducing episodes or flare ups.
Ms Feeney said complex trauma from her childhood had been a "roller coaster ride of emotions".
"I look like a normal person. I used to work as a senior medical receptionist at a medical centre but now
I'm unable to work with all my ailments including chronic pain and depression," Ms Feeney said.
"I have been through a lot in my lifetime. I have been held up at knife point, had death threats at work, and suffered miscarriages.
"I've always felt something was 'off'. Part of FND for me is headaches, migraines, aches and pains and my body just shutting down. Before my diagnosis I would wake up and my brain just shut down my entire body and I couldn't move."
Ms Feeney said the group sessions gave her a space to feel safe.
"Knowing others were going through something similar really helped as well as opening up about what I was going through," she said.
