The Caregivers Hangout| Covid and Rods experience

FND awareness week 2022 During Christmas New Years period it became apparent that all was not going to be well for Rod. He got Covid and he talks about his experience with covid. Thankyou for sharing Rod your experience.

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.

What to do if you have a positive for covid:

https://vm.tiktok.com/ZSeV7dJuH/

Carers advice : looking after someone with covid

https://www.carersaustralia.com.au/coronavirus-information/covid-19-advice-for-carers/

Managing covid and government information australia:

https://www.health.gov.au/health-topics/aged-care/advice-on-aged-care-during-covid-19/managing-home-care

My aged care : caring for the elderly with covid

https://www.myagedcare.gov.au/caring-someone

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.

To listen to Rods My FND Reality : his Caregiving story click below

https://thefndpodcast.simplecast.com/episodes/my-fnd-reality-caregiving-talking-to-rodney

Carer Gateway is an excellent resource provided by the federal government to help support caregivers by giving resources, support , education, forums and more. We recently had an interview with Catholic care who runs Carer Gateway to learn more about them you can listen to their interview below :

https://thefndpodcast.simplecast.com/episodes/supporting-caregivers-carer-gateway

For more information on Carer Gateway

https://www.carergateway.gov.au/

their phone number is 1800 422 737

also join their Facebook page to keep updated and their support groups.

For the FND Australian support services Facebook group to talk and share support of other caregivers looking after FNDers / support advocates click on the link below

https://www.facebook.com/groups/588224248292396

For more information about NDIS checkout Carers Australia @ www.carers australia.com.au

https://www.carersaustralia.com.au/ndis-carers/what-is-the-ndis/

https://imprintmerch.com.au/collections/lets-have-the-chat

from masks to bags hoodies and tshirts check them out!

What 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 :)

https://open.spotify.com/playlist/5lvGhN4Ab3AtwBj42L5DDA?si=i1RzVbhmQ3GeJ6a3Iu7sHw&dl_branch=1

https://imprintmerch.com.au/collections/lets-have-the-chat

from masks to bags hoodies and tshirts 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-2.0

An excellent podcast episode which explains what Functional Neurological Disorder is. Have a good listeners brilliant!

https://www.neurokid.co.uk/

A website for young people and families living with NEAD and neurological symptom

https://fndportal.org/

Amazing website with information and links to fnd

Information on Non Epileptic Seizures or NEAD

https://www.sth.nhs.uk/clientfiles/File/Epilepsy/pil2072.pdf

FND 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.

Click below to hear more about FND Australia Support services and who Dr. Katherine Gill is

https://thefndpodcast.simplecast.com/episodes/the-fnd-podcast-with-detty-dr-katherine-gill-and-fnd-australian-support-services

FND 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:

itsmeitsmeitsfnd

https://open.spotify.com/show/6RSjTADQCw9tA4Udnutf0L?si=JZy4CAfuSB6FWaBCi8Avgg&dl_branch=1

Bed Life and Beyond by Rach also a lovely FNDer

https://pandoralocksmith.wordpress.com/about/

John McLeans Fnd Journey

https://m.facebook.com/JohnsFND/?ref=page_internal&mt_nav=0

Lmtd Life with FND

https://m.youtube.com/channel/UC3xLKpn7gkgvVoH29ulu4IA/videos

FNDer amplified: Meg Jacks

follow on Instagram @ Meg.jacks_

TicTok: @megjacks

Instagram follow Emma’s journey :@emmas_fnd_fun

The Fnd Podcast always suggests that you always talk with your gp and or specialist with any treatments in regards with FND

People Amplified on the FND Podcast by Maggies Corner ,brilliant incredible humans who you should look up / check out

Dylan Alcott

Athelete , paraolympics , podcaster , raising awareness and voices of the disabled

Instagram :@ listenable_podcast @dylanalcott

Website: www.abilityfest.com.au

Elle Stella

Business Success Coach , Paraolympian & intuitive healer

Instagram: @iamellesteele

Website: www.iamellesteele.com

Carly Findlay

Activist, writer, Blogger with a condition called ichtchyosis.

Instagram: @carlyfindlay

Website: www.carlyfindlay.com.au

Sophie Butler

Shes empowering women, disabled after a spinal cord injury , she inspirational and has an amazing attitude

Instagram: @sophjbutler

YouTube: https://youtu.be/wgfAYDlXXvM

Meg Jacks

She is a fellow FNDer who is very open about her journey with FND and has helped raised awareness with FND

Instagram: @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 representation

Instagram: @thedisabledhippie

Nina Tame aka the Lunch Lady

She’s a single mum who’s disabled and a disability advocate. Parenting with disability

Website: https://hellolunchlady.com.au/parenting/parenting-around-the-world-nina/

Chloè Haden

she is an Australian actor YouTuber singer dancer and she’s autistic. She beings awareness about Autism and talks openly about life with Autism.

Instagram: @princesssapien

Website: https://www.chloehayden.com.au/

Youtube: Chloè Haden

Style like U

Founded 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 Dawson

who 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 : @luuudaw

Website: https://lucyintheskywithencephalitis.wordpress.com/2021/03/16/all-my-links/

Cripple Media

Cripple 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 awareness

Instagram: @cripple media

Website: https://cripplemedia.com/about/

Aaron Rose Philip

For more information check out this wonderful article here

https://www.uncrazed.com/aaron-rose-philip-makes-runway-debut-says-disabled-talents-matter/32893

Instagram:aaron_phillip transgendered disabled fabulous Model check him out

Nicole Parish

she 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 Forest