On this episode we talk about National Carers week that has just passed, what it is like to be a caregiver and what uplifts Rod to help him throughout the day. Happy belated national Carers week.
Carers week happens annually every year as they have written "National Carers Week is an opportunity to recognise, celebrate, and raise awareness among all Australians about the diversity of Australia's 2.65 million carers and their caring roles. " their website is still up and running and literally it is a wealth of information and resources available to the caregivers. Strongly encourage to go every year for connection education and celebration of the caregivers. https://carersweek.com.au/about/?gclid=EAIaIQobChMI8bii2JPQ8wIVpDdyCh05mAHCEAAYASAAEgJD4_D_BwE
What uplifts you? What helps clear Rods mind and helps him get set for the day is this motivational speech/talk from Matthew McConoughey academy award winning actor, writer and philanthropist hi speeches and talks uplift and Inspire.
https://youtu.be/UuuhZ9ViXKM-
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.
Disability advocacy is acting, speaking or writing to promote, protect and defend the human rights of people with disability. The Australian Government, and some state and territory governments, fund independent advocacy to help people with disability who face complex challenges or are unable to advocate for themselves, and do not have family, friends or peers who can support them as informal advocates, to access advocacy support.
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/
