Tag: trigeminal neuralgia awareness

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Podcast A/Prof Tasha Stanton

We are delighted to announce that Ass Prof Tasha Stanton has accepted our invitation to present webinar for our community.  She has an extremely busy schedule but we have preliminary booked February 7th 2024.

The below podcast will help you understand her work.

Wednesday Aug 30, 2023

Episode 36 – Tasha Stanton (Relaunch) – Illusions and context in pain

Associate Professor Tasha Stanton delves into the realm of pain perception, context, and illusion. Prepare to embark on a journey of intellectual exploration as Assoc. Prof. Stanton shares her profound expertise in pain science and therapy. With a keen focus on research and therapeutic insights, she guides us through the labyrinthine of pain perception, revealing how our minds and bodies interact to create pain.

The “Le Pub Pain Podcast” offers a unique opportunity to engage with Assoc—Prof—Stanton’s groundbreaking research, exploring the multidimensional landscape of pain from both academic and real-world perspectives. Whether you’re a seasoned researcher, a healthcare practitioner, or simply curious about the mysteries of the human experience, this episode promises to leave you with newfound insights and a deeper appreciation for the complexity of pain.

LISTEN HERE

podcast

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Mikala Grosse is Raising Awareness

One of our members Mikala Grosse is raising awareness for people living with trigeminal neuralgia at an event in Hobart – see details below.

If you are interested in attending please use this link

Event description

With International Trigeminal Neuralgia Awareness Day coming up on 7th October, Mikala Grosse will join WNA members and friends to raise awareness about this condition and discuss how it has changed her life and the way she does business is a really positive way.

Mikala is a Hobart-based Business and Life Coach and Small Business Facilitator with a background in productivity, eLearning and business tech and automation. She is certified as both a Life and CliftonStrengths coach.

She’s run her own businesses on and off over 20 years. She started her current business 6 years ago and since then has coached and supported more than 100 business owners of varying industries and backgrounds to create the foundations from which to build and grow their businesses.

She is the co-founder of two business-related podcasts (Work Wife Wine Time and Freedom to Coach) and runs business mastermind groups for aspiring coaches and consultants.

Mikala is passionate about supporting business owners to effectively do business in a way that honours their individual circumstances and unique talents and strengths.

Come along for lunch, plus grab a drink on arrival, and enjoy hearing from Mikala while connecting with other like-minded women in business.

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Pain Australia Resources

Pain Australia posts great resources on their website.  The resources include fact sheets that they produce and from other organisations.

These fact sheets are not only useful to our community but can also act as a training tool for family members or work colleague, who often have never heard the words trigeminal neuralgia. Often they have no understanding of the impact that a diagnosis of TN can have on a person either.

We aim to raise our voices when we can, and the best way to do that is by using educational resources which are well written, factual and provide support.

Chronic Pain Management

Pain Australia Fact Sheet 1- The Nature and Science of Pain

Pain Australia Fact Sheet 2 - Prevalence and the Human and Social Cost of Pain

Pain Australia Fact Sheet 3 - Clinical Assessment of Pain

Pain Australia Fact Sheet 4 - Multidisciplinary Pain Management

Pain Australia Fact Sheet 5 - Spinal Cord Stimulation

Pain Australia Fact Sheet 9 - Neuropathic (Nerve) Pain

Pain Australia Fact Sheet 10 - Self Managing Chronic Pain

Pain Australia - Chronic pain – a major issue in rural Australia

Beyond Blue - Chronic physical illness, anxiety and depression

Pain Toolkit - Resource Pack

Chronic Pain Management Strategies

Pain and Physical Activity

These resources can also be used as discussion point documents at support group meetings.  Let us open conversations about the challenges our community deal with every day.

 

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Trigeminal Neuralgia Awareness

Trigeminal Neuralgia Awareness is so important to our people who live with this condition.

The huge impacts it has, not only on the person diagnosed, but the extended family.  Everything changes…..not just coping with pain, but family relationships, dealing with anxiety and depression and feelings of self worth.  Many have to give up work or find acceptance that full employment will no longer be possible.  There is grief, there is anger, there is pain…..

We recently connected with the family that is behind this Instagram account promoting trigeminal neuralgia awareness.  They have been hugely successful in using their account to raise awareness with over 3,000 followers.

Maria who lives in Sydney, has been kind enough to tell us her story and the reason they created their Instagram account.

Hi, I would love the opportunity to connect with your members, via your socials and website, as well as, being mentioned on your monthly newsletter. I wanted to take this opportunity to thank you, as raising awareness is so important. TN sufferers deserve to be heard, and raising awareness is very important to me. Please feel free to reach out. Kind Regards, Maria

This page was started by my
daughter a few years ago, and it was a way for her to educate herself about TN, and be able to support others. My husband suffered a catastrophic work accident in 2016, resulting in the loss of his eye, and facial nerve damage. It wasn’t until we started googling his horrific pain symptoms, and discussions with many Specialists, we came to discover, that TN was not only going to turn my husbands life upside down, but also take us along for the horrific ride. As a mother of three beautiful daughters, all of whom are very active on this page, we’ve come to accept, that the husband, and father that we’ve known, can never be the same. We never realised how many people in the world suffer this debilitating pain, often referred to as the “suicide disease.” The members on this page deserve to be heard, and has shown how important it is for us to raise awareness, and find a cure.

Maria and her daughters post inspirational quotes and information on their Instagram account

https://www.instagram.com/p/CuN1O_tvNFu/?igshid=MmU2YjMzNjRlOQ==

Our Association does not currently have a volunteer to create and manage an Instagram account.  If you are creative and would like to run an Instagram account for us to help raise awareness, please email

membership@tnaaustralia.org.au

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President’s Monthly Musings – Oct 7th 2022 Light Up In Teal

International Trigeminal Neuralgia Awareness Day October 7th Light Up In Teal

I am humbled by the turn out of our members and stakeholders, who took photos of the landmarks which were Lit up in Teal all around Australia.  Our Association members and Facebook members of the two groups below, made sure we had photos of the Eastern Coast sites.

Trigeminal Neuralgia Association Australia | Facebook

Trigeminal Neuralgia – Australia/New Zealand * | Groups | Facebook

We would also like to extend our heartfelt gratitude to Julia McDonald – the Secretary of the Trigeminal Neuralgia Western Australia, who organised photographers for the sites in Albany, Perth, Geraldton and Broom

Trigeminal Neuralgia Support Group – Strength Through Shared Experience (trigeminalneuralgiawa.com.au)

We had a few minor issues – unfortunately Albany City Centre was not lit up, and The Glasshouse, in Port Macquarie lit up during the day which was not the agreement.  Broome Water Tower lit up in a fetching red colour, however – with the magic of desktop design apps we changed the colour to blue.

Despite the difficulties, we created a buzz.  Sufferers of Trigeminal Neuralgia could see a beacon of hope highlighting some magnificent buildings.  We know that the Teal Light provided support and a feeling of community to all sufferers.

I would like to thank Helen Tyzack our Vice President – who wrote the media releases and contacted media outlets all around the country, liaising with sufferers in each location to personalise their stories.

Townsville Bulletin wrote up a story about Haley Plaza in Townsville.

Haley Plaza

 

 

 

 

MYGC here on the Gold Coast also published a story about our event

Gold Coast “Light Up In Teal” – myGC.com.au

I would like to thank our newest committee member Sarah Wilkinson, who created advertising posters for the facebook group pages to highlight the buildings to be Lit up in Teal.  The posters allowed our sufferers to attach their pictures if they wished, to those posts.  She and her husband Samuel, braved the pouring rain in Newcastle, and took some wonderful pictures of the Town Hall Clock

I would also like to thank our wonderful Support Group Leaders who took photos or arranged for photos to be taken.  We cannot function without you highlighting our activities at each Support Group Meeting

I will be providing slides to Toni Saunders the founder of the Light Up In Teal Awareness Day

2022 Light Up Teal 4TN – TNNME: TRIGEMINAL NEURALGIA and ME

I have put together a little video with the pictures we have received and there are a few more to be added.  I am still working on the file – but hopefully you will enjoy what we have put together so far.


 Trigeminal Neuralgia International Awareness Day October 7th 2022


Our Association will also send a slide to each City Council who participated and an email showing our gratitude for supporting us all.