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FND Australia Support Services

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24.01.2022 Sadly too many people are having adverse experiences when they reach out for care. We spend too much time addressing medical trauma. People living with FND symptoms dont need to deal with medical trauma in addition to managing the complex, disabling and frightening symptoms. Please be kind and compassionate when working with people living with FND.

24.01.2022 Fantastic tips on living with FND, from Lenny @Functional Lenny. Check out her vlog page. https://www.youtube.com/channel/UC890wPtiptH0ge1B9rNbYsg

24.01.2022 Another beautiful and inspiring song written by one of our fellow FND members. - RISE UP Kerilyn Mcinerney https://www.youtube.com/watch?v=vSTRWR-RyL4

23.01.2022 Have you checked out Lennys FND videos? A series of excellent helpful lived experience videos on FND. https://www.youtube.com/user/Lentilboots

23.01.2022 People dont need medical trauma on top of the debilitating and disabling FND symptoms. Medical trauma has a negative impact on the nervous system. People need compassionate care. Kindness costs nothing. :)

22.01.2022 Joint Hypermobility in Functional Neurological Disorder Short research survey - University of Melbourne This research is investigating the association between joint hypermobility and functional neurological disorder. This may help us better understand what causes functional neurological disorder. ... https://www.surveymonkey.com/r/5FGRF6Z

22.01.2022 https://siimland.com/how-to-increase-neuroplasticity/ Utilising the power of neuroplasticity to wellness and maintaining function while living with FND. Tips for maintaining brain function.

22.01.2022 FYI Did you know that in the International Classification of Diseases 11th Revision [ICD-11] FND is now called Dissociative Neurological Symptom Disorder http://pre.gcp.network//dissociative-neurological-symptom-

22.01.2022 THOUGHT FOR THE DAY :)

20.01.2022 FND specialist telehealth counselling services and occupational therapy.

20.01.2022 FND Aus talks to Dr Baizabal about the pathogenesis and patholophysiology of FND https://www.youtube.com/watch?v=eLupA9ldoOQ Trigger Warning - references to mass hysteria and factious disorder - are not FND but included in discussions

19.01.2022 Alicia Humphry demonstrates important techniques to assist with speech FND difficulties. Thanks to Alicia Humphry for sharing her experiences.

18.01.2022 WANT TO KNOW MORE ABOUT NDIS? SEE THIS ONLINE WEBINAR TO LEARN MORE https://www.eventbrite.com.au/e/accessing-the-ndis-an-intro

18.01.2022 https://fb.me/e/27gEoJYTK

17.01.2022 Early life trauma can impact the developing brain, and may be relevant to some individuals with FND. https://www.technologynetworks.com//new-findings-reveal-ho

17.01.2022 The fnd podcast with detty and Jacinta. https://thefndpodcast.simplecast.com

17.01.2022 Improving the Patient Experience for People with a Diagnosed Functional Disorder Research Buddy Ref: CUR10974 Applications close: 05 August 2020 A research team from Perth Childrens Hospital (PCH) and Curtin University are seeking input from an adolescent aged 15-18 years who has attended the Adolescent Medicine speciality at PCH or Princess Margaret Hospital (PMH) for treatment of a Functional Disorder... https://crm.cciprogram.org/vacancies/10974/

16.01.2022 FND PROGNOSIS NB: Children have better outcomes than adults

16.01.2022 https://www.epilepsysociety.org.uk/non-epileptic-seizures

16.01.2022 APPLICATIONS CLOSED. THANK YOU TO EVERYONE WHO APPLIED Seeking one Research Assistant with lived experience of FND, to contribute to de-identified qualitative data analysis for our FND project in partnership with the University of Sydney. Please contact [email protected] to apply or for further information. Applications close 9am 15th Jul 2020.

15.01.2022 WHILE IT IS OFTEN THOUGHT THAT PEOPLE WITH FND HAVE NO STRUCTURAL DISEASE OR DAMAGE TO THE NERVOUS SYSTEM, RECENT RESEARCH SHOWS THAT PEOPLE WITH FND DO SHOW DIFFERENCES IN GREY MATTER COMPARED TO HEALTHY CONTROLS, IN CRITICAL AREAS RELATED TO MOTOR AND EMOTIONAL PARTS OF THE BRAIN. Patients with functional movement disorders exhibited increased volume of the left amygdala, left striatum, left cerebellum, left fusiform gyrus, and bilateral thalamus, and decreased volume of ...the left sensorimotor cortex (whole-brain corrected p 0.05). Volumetric differences did not correlate with measures of disease duration or patient-rated disease severity. This study demonstrates that patients with functional movement disorders exhibit structural gray matter abnormalities in critical components of the limbic and sensorimotor circuitry.. These abnormalities may represent a premorbid trait rendering patients more susceptible to disease, the disease itself, or a compensatory response to disease.

14.01.2022 FND RESEARCH - STAGE 2 FND AND JOINT HYPERMOBILITY CAN YOU HELP IN THE RECRUITMENT OF A CONTROL GROUP? Please forward the following link: https://www.surveymonkey.com/r/MMCJBW3

14.01.2022 https://youngcarersnetwork.com.au/young-carer-bursary Bursary for young carers

14.01.2022 The Young Carer Bursary Program supports young carers to continue with their education. The program offers 1,000 bursaries of $3,000 each year. Young carers across Australia can apply from late July until early September. Applications for Young Carer Bursary Program 2021 open from 9:00 am 28 July to 5:00 pm 8 September 2020 AEST. Do you or someone you know provide unpaid care and support to a family member or a friend? There are over 235,500 unpaid young carers aged 25 year...s and under in Australia, so theres a good chance that we all know a young carer. The bursary enables young carers to return to, or continue their education. There are 1,000 bursaries to the value of $3,000 available each year. Young carers across Australia can apply from: 28th July until 8th September. https://youngcarersnetwork.com.au/young-carer-bursary

14.01.2022 Introducing our new recruit to the FND Clinic, Counselling program - Mr Brent Pethers. For referrals to the telehealth counselling program please email [email protected]

14.01.2022 MASSIVE CONGRATULATIONS TO FELLOW FND'ER Kerilyn Mcinerney "It has been difficult being so sick to keep going at times but I wanted to share this to spur you all on! Anything is possible! I change my focus and encourage myself to complete my goals. Music is also a huge healer for me and everyone! You can do it too! I know you can! Here’s my news:... AUSTRALIAN SONGWRITERS ASSOCIATION NATIONAL SONGWRITING AWARDS 2020 I'm very proud to announce that my song WAITING ON THE OTHER SIDE has been announced in the Judges Shortlist in 3 categories, for the 2020 ASA National Songwriting Awards. It has been shortlisted in the Open section, Rock/Indie section and Country Section. The song now goes into the next judging round for the National Top 30 finalists"

13.01.2022 "Functional neurological disorders are often wrongly considered a rare medical curiosity of the past. However, these findings suggest that, while they are largely absent from public discourse, they often appear in the news incognito, hiding in plain sight." https://neuro.psychiatryonline.org//appi.neuropsych.190100#

13.01.2022 https://www.epilepsy.com//truth-about-psychogenic-nonepile

11.01.2022 Have you checked out Lenny's FND videos? A series of excellent helpful lived experience videos on FND. https://www.youtube.com/user/Lentilboots

10.01.2022 Who has an assistance dog to help manage symptoms of FND? How else can assistance dogs help a person with FND?

10.01.2022 With thanks to Lenny @Functional Lenny for these helpful tips on living with FND and dealing with setbacks. Check out Lenny's vlog. https://www.youtube.com/watch

08.01.2022 At our awareness day in March 2020 we launched the 2020 FND Survey. 548 people with FND completed this survey. 114 Australians, 411 from UK and 23 people from other countries. Only 10% of people reported being diagnosed in the first three months after symptoms onset. We know that people with the best recovery and wellbeing outcomes are diagnosed early after symptoms onset, have a positive experience of diagnosis and referred to immediate MDT care. More awareness and FND educ...ation is needed to improve the rate and experience of FND diagnosis. Too many people are left suffering for years prior to receiving a diagnosis. #InvestInFNDAus #Voices4FND Functional Neurological Disorder/FND Action FND Dimensions- Meet Ups

08.01.2022 FND does not stop people living their dreams or designing new dreams. Meet Cassandra Grey, amazing disability advocate, law student and student co-chair of a group designing a Disability Inclusion Action Plan for QUT. Cassandra's Message: "Never give up. Never stop trying. Never stop fighting. We are so strong and capable. We can achieve great things even with FND FND changed my life drastically. But with FND I built a new life, found my passion and achieved things I th...ought would be impossible when I was newly diagnosed. I thought my life was over with FND especially when treatment/rehab didn’t work. I couldn’t see a life past my symptoms. Now I’m going into my final semester of my law degree next year and next month I’ve been invited to speak on a panel alongside the Australian Disability Discrimination Commissioner and other incredible lawyers, advocates, academics and people with disabilities as part of the Conference of State Parties for the United Nations International Treaty Convention on the Rights of Persons with Disabilities. All while dealing with FND. Don’t give up" See more

07.01.2022 Thanks to David Bond for sharing his FND story with Bay FM radio. Great awareness.

06.01.2022 More information to follow soon - Priority Population - Disability https://www.youtube.com/watch?v=UOulSBfReLY

06.01.2022 Genetic predisposition to functional movement disorders https://jnnp.bmj.com/content/91/8/814.full

06.01.2022 At the moment our FND tailored telehealth counselling program is full. We have a waitlist. If you are still interested please still enquire but you will be initially waitlisted till a position comes available.

06.01.2022 FND Australia Support Services is partnering with Swinburne University of Technology and the NSW Mental Health Commission in the Health Literacy project. Our disability group has been recognised as a priority population. You are invited to participate in this online survey. Later, interviews and workshops will be conducted which you can chose to be involved in, to help design material and vignettes which may be used in health professional training. The link to the online sur...vey is https://swinuw.au1.qualtrics.com/jfe/form/SV_1FvmBPxJGpQ3gjj If you would like a copy of the participant information form emailed to you, please contact [email protected]

06.01.2022 https://www.scientificamerican.com//decoding-a-disorder-a/

04.01.2022 Presentation - FND: Kids and Schools with Dr Kate Gill [Occupational Therapist, President and Founder FND Aus]; Geoff Jubb [Treasurer and Dad of a Young Person with FND] and Pat [FND Counsellor and teacher at Student Learning Program - NSW School] https://www.youtube.com/watch?v=ikXC0A57L0k&t=766s

04.01.2022 Just so we are clear. FND is a REAL neurological disorder with real neurological symptoms. There is no gain in FND, only major loses. FND is NOT synonymous with any of the terms below.

04.01.2022 Introducing Swati Mahna, providing FND friendly counselling services for people with FND and/or their carers. To engage in counselling with Swati please email [email protected] for a self referral form. Cost by nominal donation to the charity.

03.01.2022 Art and FND, #ArtandHealth #Mindfulart #ArtandCommunication, #ArtandExpression Great work Odette Placido https://www.artshealthnetwork.com.au/tme-2-art-and-my-fnd/

03.01.2022 #kindness #generosity #brighteningpeoplesday One of our lovely members - Kelly Ramadge has kindly gifted 10 people from our FND community with a box of gorgeous products from the Body Shop. Such a beautiful way to brighten peoples day. Thank you Kelly.

03.01.2022 Genes - Environment and FMD FULL TEXT AVAILABLE https://jnnp.bmj.com//early/2020/06/23/jnnp-2019-322636.fu

03.01.2022 At times people with FND will require life saving medical interventions due to symptoms of FND. We can not allow historical misperceptions about FND to impact on patient care. A number of people with FND, do at times, lose the ability to swallow. At these times intravenous fluids and nasal gastric feeding is a life saving intervention. Denial of this care places people at risk of death and compromises their health and wellbeing. Five days with no fluid or nutrition while ...in hospital care is not OK. FIRST DO NO HARM Thanks to Amelia Tang for sharing this important message.

03.01.2022 Congratulations to A/Professor Kozlowska and co-authors on the publication of this book. Open Access - Free Download. Such a valuable resource. Kozlowska, K., Scher, S., & Helgeland, H. (2020). Functional Somatic Symptoms in Children and Adolescents: The Stress-System Approach to Assessment and Treatment. London, Palgrave Macmillan.... Link to the website: https://www.palgrave.com/us/book/9783030461836 Building upon three decades of major scientific advances, this Open Access book sets out the stress-system model for functional somatic symptoms in children and adolescents. This approach provides both a new understanding of how such symptoms emerge typically, through a history of recurrent or chronic stress, either physical or psychological and points the way to effective assessment, management, and treatment. In addition to chapters on the emerging science of functional disorders, the book gives central attention to the role of the clinician. The book begins by exploring the initial encounter between the paediatrician, child, and family, moves through the assessment process with the mental health clinician, including the formulation and the treatment contract, and then describes the various forms of treatment that are designed to settle the child’s dysregulated stress system. The book’s aim is to give trainees and practicing clinicians, including paediatricians, neurologists, psychologists, and psychiatrists, a framework for understanding functional somatic symptoms and how the stress-system approach leads to clinical interventions that put the child (and family) back on the road to health and well-being. See more

02.01.2022 Recognising and explaining functional neurological disorder https://www.bmj.com/content/bmj/371/bmj.m3745.full.pdf

02.01.2022 Understanding and working with Chronic Pain https://www.physio-pedia.com/Chronic_Pain_and_the_Brain

02.01.2022 https://bpspsychub.onlinelibrary.wiley.com//10./bjhp.12478

01.01.2022 People don't need medical trauma on top of the debilitating and disabling FND symptoms. Medical trauma has a negative impact on the nervous system. People need compassionate care. Kindness costs nothing. :)