The FND Podcast

My FND Reality | Talking to Tom Plender

Episode Summary

Join me as we talk to others with FND in the community as they share their time, their lived experiences and invaluable and priceless insights with FND. Each person brings to the table their own unique truth of what it is to genuinely live with FND. For that I am absolutely humbled, grateful and show great respect to each person that I have talked to.  We are privileged and honoured to be speaking with Tom and we thank him for his time for talking with me on this FND reality. He is amazing and I’m so glad he shared his journey for giving hope to others and letting us know about Professor Edwards and what he’s done for him. Follow this incredibly talented man on his website @ https://www.tomplender.com/, for his music, his art and writing as well as his Instagram @tplender.

Episode Notes

Join me as we talk to others with FND in the community as they share their time, their lived experiences and invaluable and priceless insights with FND. Each person brings to the table their own unique truth of what it is to genuinely live with FND. For that I am absolutely humbled, grateful and show great respect to each person that I have talked to. 
We are privileged and honoured to be speaking with Tom and we thank him for his time for talking with me on this FND reality. He is amazing and I’m so glad he shared his journey for giving hope to others and letting us know about Professor Edwards and what he’s done for him. Follow this incredibly talented man on his website @ https://www.tomplender.com/ , for his music, his art and writing as well as his Instagram @tplender.

Professor Mark Edwards one of the leading specialists in FND

https://www.stgeorges.nhs.uk/people/mark-edwards/

Here he talks about Functional Dystonia 

https://youtu.be/ir2cQOjOZKU

And here he talks about FND

https://youtu.be/IaPnxYnBiyk

Introducing Professor Lorimer Moseley from university of South Australia he’s a clinical neuro science research physiotherapist

His experience with pain

https://youtu.be/Sjes9CuN6Ko

Pain explained  :

https://youtu.be/jH_Ut2hhAfU

and finally Toms own articles !

putting FND on the Map

http://nihealthcare.com/putting-it-on-the-map/

to find out more articles that Tom has written check out his website! 

Trigger warning as promised I did mention in this my fnd reality I would link the episode where I was flaring with Maggie on this podcast this is the link below to explain what happens in a flare for me. It does feature me in a real flare with Maggies it may be distressing for listeners.

https://thefndpodcast.simplecast.com/episodes/maggies-corner-trigger-warning-real-life-flares

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

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/o3sXlxg4d5c

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 :) 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=1

FND TSHIRTS BAGS MASKS AND MORE ; FND PODCAST MERCHANDISE-CLICK BELOW

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

from 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-2.0

An 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 explanation

https://vm.tiktok.com/ZSeYtCw7W/

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

by none other than our Jake! 

HTTPS://www.tomplender.com

Tom Plender : follow this amazing creative human his art, music and writing on fnd 

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

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