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Melbourne Awareness Weekend 2023

Members of the committee and other volunteers from all around the country headed to our Melbourne Awareness Weekend 2023 to meet up with James Hermans to collect our sets of Q Magnets, attend the One Night in Cairo fund raising dance festival, host a volunteer workshop and attend the Melbourne support group meeting.

It was certainly a full agenda and full of education, connection, fun and most importantly awareness.

Volunteers arrived in Melbourne throughout the morning, settled into their hotels and then got ready to meet James who gave us an overview of the science of the Q Magnets as a medical grade therapeutic appliance and how best to use them. Q Magnets Instagram

We were able to pre purchase 5 sets for our support group network due to a discount provided by James and generous donations received from Archipelago Designs who utilised our photo of the Isle of Capri Bridge on the Gold Coast Light up in Teal 2022, Dr Karen McCloy who recently hosted a webinar for the association and Bianca Parker whose father was living with TN and has now had surgery and is currently pain free.  Without our community’s generosity we would be unable to achieve our outreach program.  Thank you to every single one who has made a donated this year currently $4,660 and we understand the Dance Festival has also raised an extra $2,000.

Before the dance festival we met up at the Sands Hotel for a meal and to talk face to face – it has been a long time since volunteers have been able to do this.

After dinner we headed to the Duke of Edinburgh Hotel for the dance festival which included a DJ and photographer who were donating their time too.  The acts were numerous and highly talented, check out the following link to see the information about the festival @melbmedfest | Linktree and Dance Act Description

Sarah delivered the following speech to acknowledge the work Victoria has accomplished raising awareness.

“Hi everybody, 

I would like to extend my heartfelt gratitude to Vittorina for providing the Trigeminal Neuralgia Association of Australia with this incredible opportunity to speak before you tonight. It’s a privilege to represent the Trigeminal Neuralgia Association and share my journey with you all.

I’m here today to talk about something that may be unfamiliar to many of you – Trigeminal Neuralgia. It’s a condition that affects people in ways that can be quite challenging, and I want to help you understand it better.

Trigeminal Neuralgia, often referred to as TN, is a neurological disorder that affects the trigeminal nerve, which is responsible for transmitting sensations from your face to your brain. This nerve has three branches, hence the name trigeminal. Now, imagine the sharp, shooting pain you might feel when you accidentally bite your tongue or have a dental issue – TN is like that pain, but on a whole different level.

People with TN experience sudden and severe facial pain, which can be triggered by simple activities like eating, talking, or even a light touch to the face. It’s often described as an electric shock or stabbing sensation, and the pain can be excruciating. 

The causes of TN can vary, and it often occurs spontaneously, though sometimes it can be related to underlying conditions like multiple sclerosis or nerve compression. But one thing is certain – the pain it brings can be debilitating and life-altering.

The Trigeminal Neuralgia Association of Australia, or TNAA, is a beacon of hope for individuals like me who have been diagnosed with TN. It serves as a vital support network, providing guidance, knowledge, and empathy to those afflicted by this challenging condition. They offer a helping hand to navigate the treacherous waters of TN, ensuring that no one feels alone in their battle against this relentless pain.

Now, I’d like to share a personal account of my own struggle with Trigeminal Neuralgia. I was diagnosed with this condition at the age of 25 in 2020, but my journey with the pain began even earlier, around 2016. It all started with a slight pain, an aching sensation that would creep from my ear and spread to my jaw. This recurring pain led to numerous dental visits, teeth extractions, and misdiagnoses, including being told I had a sinus infection. Each episode seemed to be more agonising than the last, sometimes forcing me to take days off from work.

One strange aspect of Trigeminal Neuralgia is that when I’m not in pain, I tend to forget the intensity of the agony I experience. It’s almost like a coping mechanism. I find it challenging to explain this pain to medical professionals, family, friends, or anyone who hasn’t experienced it firsthand. In my discussions about TN, I tend to downplay the severity of the pain and its profound impact on my life.

This is where the Trigeminal Neuralgia Association of Australia has helped me. Through their support group meetings, I’ve found a network of individuals who understand the unique challenges and struggles of living with TN. These meetings have been instrumental in my journey, not only for sharing experiences but also for learning about various treatment methods and potential medical procedures.

I’ve been privileged to serve as a committee member for TNAA since April 2022, and I’m deeply committed to increasing awareness and helping others access the essential resources provided by this association.

The Trigeminal Neuralgia Association of Australia, under the dedicated leadership of Kim O’donnell, the association’s president, is tirelessly dedicated to supporting individuals with TN. TNAA facilitates support groups where we can share our experiences, publish research articles to advance our understanding of the condition, and distribute newsletters to keep us informed, working diligently to secure funding for research, advocacy, and outreach, all aimed at improving the lives of those with TN. Kim’s unwavering commitment is an inspiration, and it reminds us of the importance of their mission.

I stand before you not just as a patient but as a testament to the hope and resilience that the Trigeminal Neuralgia Association of Australia provides. They have been a lifeline for me, a source of information, support, and camaraderie. Through their efforts, we are not alone in this battle against Trigeminal Neuralgia, and with their continued support, we hope for a brighter future for all those affected by this debilitating condition.

Before I conclude, I would like to take a moment to extend our heartfelt gratitude to the incredible individuals who have made this evening possible. To our committee and leaders, thank you for coming tonight, you all work tirelessly to raise awareness, provide support, and advocate for those living with TN. They are the pillars of strength and beacons of hope in our community, offering a sense of belonging and a lifeline in times of need.

And to everyone else, thank you for your attention. Please consider supporting the TNAA in their vital mission. Together, we can make a difference.”

We all had a wonderful time, and we were encouraged to dance during the intervals reluctantly at first, but some of us found we could indeed perform a little bit of belly dancing.

The next morning, we headed off to the Maroondah Federation Estate run by Maroondah City Council who supplied the room for the workshop free of charge and delivered a delicious lunch platter for our attendees.
The workshop was also attended by the Melbourne support group leaders Brenda, Alan and Rob, and included a presentation by Lyn Donnelly on how to navigate the website – which can be downloaded below, and an interactive presentation by Nora English covering the Kawa Model to help with emotional story telling.

Following the workshop, we mingled and shared our stories over lunch and then it was time for the Support Group Meeting.  The Association was delighted to be able to hand over a laptop to Brenda, which was purchased from the grant received from the Cromwell Property Group in 2021.  The group will now be able to show their attendees articles and presentations on the association’s website.  We also provided the group with a Q Magnet Set to enable their group to participate in the Q Magnet Pain Management Trial we are collaborating on.

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Members Story – Mera Gilbet

It’s now almost 2 years since I first had a zapping pain in my eye tooth, left side. Thought nothing of this until it happened a few more times the next 2 months during eating. Saw my dentist, had X-rays and check. Nothing wrong. Then one day in middle of May woke up with part […]
To access this post, you must purchase TNA Australia Full Member.
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Members Story – Dee Grant

Thank you Dee for sharing providing your members story, each one helps our community. I thought you might like to share my journey with other members. I could go into further depth if you want as I must say some said it was caused by MS lesions and others said it was from the TMJ […]
To access this post, you must purchase TNA Australia Full Member.
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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.