Uniting FND Therapy Sessions | Flares, Lego , Parenting and Fnd Galore

On this episode on Uniting FNd Therapy Sessions we talk about FND , from Flares, What Jake packs in his fnd bag parenting with FND and more. It’s always an interesting conversation on life with FND and just life in general with Jake. . Follow Jake on Instagram on @punkchef41 and his podcast it’s me it’s me it’s fnd & Facebook page and Instagram FND & US. Fnd and Us is also run by Steph and Rach Follow Steph on Instagram @_fnd_and_me follow Rach on @unwireddesigner they are also incredible xo Notes:Not all disabilities are visible stickerclick Here to viewwhen I mention the claw im referring to the dystonia in my hands :https://www.fndaction.org.uk/supporting-dystonia-awareness-week-29th-april-7th-may-2017-functional-dystonia/How to manage yourself in a flare , this was an interesting article that I found that I could relate to A Chronic illness flare kit https://thediscerningyou.com/chronic-illness-flare-kit/an article on how to survive a flare uphttps://www.psychologytoday.com/au/blog/turning-straw-gold/201901/7-ways-survive-flare-when-you-re-chronically-illIt’s so true that some of us may criticise ourselves for being in a flare in the first place this was an interesting perspective : don’t blame yourself for being in a flarehttps://www.bezzymigraine.com/discover/real-talk-mig/health-a-flare-does-not-mean-youve-done-something-wrong/Hidden disability sunflowers scheme lanyards fnd action uk:https://www.fndaction.org.uk/fnd-action-join-the-hidden-disabilities-sunflower-scheme/recommendation: black adderhttps://youtu.be/vDVxq76-qOwEmergency crisis kits for chronically  ill I’ll admit there is some good ideas here!https://themighty.com/2017/10/chronic-illness-crisis-kit-products-emergencies-flare-ups/what’s in jakes fnd bag? Flashlight, first aid kit phamplets , emergency, excercise book to write if can’t communicate, text to speech and more. What do you have?https://www.medicalrecords.com/2021/09/02/blog/11-people-with-chronic-illness-show-us-whats-in-their-bagfnd treatments : including alternative therapies check out FND action https://www.fndaction.org.uk/treatment/recommendation from detty ;parenting with disability : we’ve got thishttps://www.booktopia.com.au/we-ve-got-this-eliza-hull/book/9781760642938.html?gclid=CjwKCAjwquWVBhBrEiwAt1KmwljkzlExyP3163f8_BtVm__wjtZGWticg29oc6XqEeJHRQ6IeQGwJxoCLBkQAvD_BwEa compilation of stories from disabled parents about parenting disabled. It is achievable. You can with fnd it is not easy. But we do the best we can. ”When writer and musician Eliza Hull was pregnant with her first child, like most parents-to-be she was a mix of excited and nervous. But as a person with a physical disability, there were added complexities. She wondered- Will the pregnancy be too hard? Will people judge me? Will I cope with the demands of parenting? More than 15 per cent of Australian households have a parent with a disability, yet their stories are rarely shared, their experiences almost never reflected in parenting literature.In We've Got This, twenty-five parents who identify as Deaf, disabled or chronically ill discuss the highs and lows of their parenting journeys and reveal that the greatest obstacles lie in other people's attitudes. The result is a moving, revelatory and empowering anthology. As Rebekah Taussig writes, 'Parenthood can tangle with grief and loss. Disability can include joy and abundance. And goddammit - disabled parents exist.'Contributors include Jacinta Parsons, Kristy Forbes, Graeme Innes, Jessica Smith, Jax Jacki Brown, Nicole Lee, Elly May Barnes, Neangok Chair, Renay Barker-Mulholland, Micheline Lee and Shakira Hussein."Finding your passion or something to focus on can help with fnd .https://www.bezzyra.com/discover/living-well-ra/health-the-value-of-pursuing-hobbies-when-youre-living-with-a-chronic-illness/‘little puppy buddy getting acquainted with the vacuum The FND Podcast with Detty acknowledges the traditional custodians of the land in which we stand, the Bundjalung, Awakabal, Djinduburi , Arawak, Boon wurrang & Wurundjeri People. The FND Podcast pays respect to their Elders past, present and emerging.The FND Podcast with detty : song resonating at the moment maybe our song :The new normal by Kahlid to hear it it is on our playlist or click below to view lyrics and listen on YouTube.https://youtu.be/o3sXlxg4d5cWhat has the team been listening to? What are are their song preferences ? In a flare and would like to listen to some songs? Head over to our playlist! Thank you Maggie for making it :) we have recently updated the list which features an eclectic list; itunes playlist : the fnd podcast with detty playlist or click on the link below for the playlist https://open.spotify.com/playlist/5lvGhN4Ab3AtwBj42L5DDA?si=i1RzVbhmQ3GeJ6a3Iu7sHw&dl_branch=1FND TSHIRTS BAGS MASKS AND MORE ; FND PODCAST MERCHANDISE-CLICK BELOWhttps://imprintmerch.com.au/collections/lets-have-the-chatfrom masks to bags hoodies and tshirts featuring Friends of FND and FND will not hold me back : all proceeds going to FND Australia Support Services also FND Podcast merchanise check them out!HELPFUL RESOURCES:A website all things Functional neurological Disorder written by Professor Jon Stone who is the leading FND researcher and Consultant Neurologist in Edinburgh, Scotland.https://www.neurosymptoms.org/Neurosymptoms has an app that you can download now too. Look up neurosymptoms or Jon stone and you will find it there.https://www.health.qld.gov.au/news-events/podcast/my-amazing-body-the-brain-2.0An excellent podcast episode which explains what Functional Neurological Disorder is. Have a good listeners brilliant!Dr Mohsin Butt is an excellent doctor who explained what FND is perfectly click here to watch his explanationhttps://vm.tiktok.com/ZSeYtCw7W/https://www.neurokid.co.uk/\A website for young people and families living with NEAD and neurological symptomhttps://fndportal.org/Amazing website with information and links to fndInformation on Non Epileptic Seizures or NEADhttps://www.sth.nhs.uk/clientfiles/File/Epilepsy/pil2072.pdfFND ORGANISATIONS:https://www.fndaus.org.au/FND AUSTRALIA SUPPORT  SERVICES INC: A wonderful resource for people in Australia with FND: from reasearch into FND, finding medical specialists and services and just information about FND. Solely dedicated to all things FND and helping those with FND in Australia.FND Australia Support services App:Androidhttps://apksos.com/app/fndaustralia.comApplehttps://apps.apple.com/au/app/fnd-australia-support-services/id1613121706Click below to hear more about FND Australia Support services and who Dr. Katherine Gill ishttps://thefndpodcast.simplecast.com/episodes/the-fnd-podcast-with-detty-dr-katherine-gill-and-fnd-australian-support-servicesFND Action is a patient-led charity who offer a caring and supporting hand to people living with Functional Neurological Disorder (FND) in the UK.https://www.fndaction.org.uk/FND Dimensions aims to develop a network of ‘peer support groups’ across the UK either in face to face meetings or online via methods such as Skype. By bringing people together on a regular basis, this helps alleviate the isolation that many FND patients feel. It also gives  opportunity  for others to open up dialog and to talk to others in a similar position about the day to day challenges, issues or concerns with one another.http://fnddimensions.org/A really helpful article and explanation of what FND is: 'https://threadreaderapp.com/thread/1367576277956370432.html?fbclid=IwAR1GZpXe7IgC9qVlIr7ygA9RslPy6nxhQIumdUw9XMu2fs8MsMf8SwYZeVQ Other podcasts/ blogs / vlogs to follow:itsmeitsmeitsfndby none other than our Jake! HTTPS://www.tomplender.comTom Plender : follow this amazing creative human his art, music and writing on fnd https://open.spotify.com/show/6RSjTADQCw9tA4Udnutf0L?si=JZy4CAfuSB6FWaBCi8Avgg&dl_branch=1Bed Life and Beyond by Rach also a lovely FNDerhttps://pandoralocksmith.wordpress.com/about/John McLeans Fnd Journeyhttps://m.facebook.com/JohnsFND/?ref=page_internal&mt_nav=0Lmtd Life with FNDhttps://m.youtube.com/channel/UC3xLKpn7gkgvVoH29ulu4IA/videosFNDer amplified: Meg Jacks follow on Instagram @ Meg.jacks_ TicTok: @megjacksInstagram follow Emma’s journey :@emmas_fnd_funPeople Amplified on the FND Podcast by Maggies Corner ,brilliant incredible humans who you should look up / check outDylan AlcottAthelete , paraolympics , podcaster , raising awareness and voices of the disabledInstagram :@ listenable_podcast @dylanalcottWebsite: www.abilityfest.com.au Elle StellaBusiness Success Coach , Paraolympian & intuitive healerInstagram: @iamellesteeleWebsite: www.iamellesteele.comCarly FindlayActivist, writer, Blogger with a condition called ichtchyosis.Instagram: @carlyfindlayWebsite: www.carlyfindlay.com.auSophie ButlerShes empowering women, disabled after a spinal cord injury , she inspirational and has an amazing attitudeInstagram: @sophjbutlerYouTube: https://youtu.be/wgfAYDlXXvMMeg JacksShe is a fellow FNDer who is very open about her journey with FND and has helped raised awareness with FNDInstagram: @Meg.Jacks_TicTok: Megjacks Julian Gavino(he/him) is a trans-masculine model, writer, coach, and sex-positive disability influencer living with Ehlers-Danlos syndrome and comorbidities. ... In his work, Julian aims to normalize and destigmatize trans and disabled bodies in media — by facing discrimination down and creating space for representationInstagram:  @thedisabledhippieNina Tame aka the Lunch LadyShe’s a single mum who’s disabled and a disability advocate. Parenting with disabilityWebsite: https://hellolunchlady.com.au/parenting/parenting-around-the-world-nina/Chloè Hadenshe is an Australian actor YouTuber singer dancer and she’s autistic. She beings awareness about Autism and talks openly about life with Autism.Instagram: @princesssapienWebsite: https://www.chloehayden.com.au/Youtube: Chloè Haden Style like UFounded by mother-daughter duo, Elisa Goodkind & Lily Mandelbaum, StyleLikeU is a multimedia platform for radically honest docu-style content that gives voice to diverse role models who stand proudly outside of norms and are comfortable in their skin.Website: https://stylelikeu.com/about-us/Lucy Dawsonwho unfortunately became Disabled during a medical situation. Click this link to find out more https://www.theguardian.com/society/2021/aug/25/lucy-dawson-the-model-who-got-a-mystery-headache-a-misdiagnosis-and-a-new-mission-in-life However despite this all she continues now to advocate and model and be bloody amazing.Instagram : @luuudawWebsite: https://lucyintheskywithencephalitis.wordpress.com/2021/03/16/all-my-links/Cripple MediaCripple media is a disability led media which represents the voice of the youth. As they have mentioned that the youth especially disabled have been represented by those who aren’t the youth primarily the teachers or parents , those in the medical fields so they are raising their voices and speaking up and being heard. It’s really important for their voices their oppinions to be heard and what a great idea and platform. A way to educate aswell as raise awarenessInstagram: @cripple mediaWebsite: https://cripplemedia.com/about/Aaron Rose Philip For more information check out this wonderful article herehttps://www.uncrazed.com/aaron-rose-philip-makes-runway-debut-says-disabled-talents-matter/32893Instagram:aaron_phillip transgendered disabled fabulous Model check him outNicole Parishshe is raising awareness on Autism, how she lives with autism, what tools she uses and her love for insects. Follow her on Tik Tok at Sound of the ForestA great news platform for young Australians to get the news firsthand ; available internet podcast and app easily digestible and accessible check it outhttps://www.thedailyaus.com.au/