Author: Lynette Donnelly

TNA Australia Secretary and Project Manager Using my skills as a systems management accountant to design and manage information technology to increase awareness of Trigeminal Neuralgia
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How do we Utilise your Donation Generosity

Our Association receives donations from well-wishers and members, so how do we utilise your donation generosity?

When we launched our new website back in November 2021, we had 134 members in the Association.

The original membership previously ran from January to December and renewals were due in the first week of January.

New members after this time renew based on the month they became a member, and we currently have 280 current members.

The reason these facts are important, is to highlight the extraordinary generosity of our members who, not only renew their membership each year, but also add a donation.

The level of donations we have received to enable us to continue our work, has dramatically risen, perhaps due to the website platform which enables all visitors to the website to donate.

We also benefit from the tax concessions allowed when a donation is made, this is especially evident around the end of the tax year.  If donators are tax payers they are entitled to a tax deduction.  Our charity is registered at a Deductible Gift Recipient (DGR)Charity.

ACNC Donation Rules

The ATO have rules covering what donations can be claimed a a tax deduction.

ATO Donation Rules

It is important to know how the association utilises your donations, and how the services we provide benefit members.  Below are the donations received.

  • 2021 = $3,799.61 Jan-Dec
  • 2022 = $7,032.50 Jan-Dec
  • 2023 = $ 1,846.00 Jan -Feb

In 2021 we utilised the donation money to ensure our older mail only members who do not use web based services, received a printed copy of the monthly newsletter.

In 2022 we expanded our offering using zoom as a meeting platform to enable support group leaders to keep in contact with regional and remote members.  Zoom licences are $250 per annum per user so donations allow all of our support group leaders to hold a licence. Our expanded membership base has also allowed us to continue developing our website and manage web-based subscription costs.

We are only two months into 2023 and our generous supporters have already donated enough to support our zoom licences.

We have achieved so much, but we know we are still not reaching everyone who needs help, and we will continue looking for ways to provide education, support and hope wherever we can.

If you would like to donate – please click here

If you would like to run an event to raise money within your community or workplace – please see some idea here

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President’s Monthly Musings – Feb 2023 Search for Hope

This month has been a big one in our household.  Patrick’s pain on both sides of his face is back with a vengeance.  The gamma knife treatment he had back in 2021 had kept the pain at bay but now it is back.

We all know how debilitating this awful condition is, and the utter helplessness of family members who really do spend days looking for that mystical unicorn with a magic wand.  The zombie scrolling through google desperately searching for new treatments, or research, or ideas in the search for hope.

Our circumstances like many others, means we are reliant on the public health system, we took early retirement when Patrick’s condition was still undiagnosed and impacting his ability to work.   Private health costs had escalated, our superannuation fund, which we are reliant on, had been smashed, by first the GFC, and then the COVID years smashed it a bit more.

We are not unique.  We hear many stories from members how the condition has impacted their working life and that they find themselves on the treadmill of seeking diagnosis and treatment and hope, all the while trying to manage their precarious financial situation.  TN is not classed as a disability in Australia and even the Insurance Giants have no knowledge of the condition.

Part of our Vision is to raise awareness – trigeminal neuralgia is rare, most people have no idea such a condition exists.

This month is Rare Disease Awareness Month – we need to raise the profile of the condition – see our article about what you can do to highlight trigeminal neuralgia in February

Rare Disease Day February 28th 2023 – Trigeminal Neuralgia Association Australia (tnaaustralia.org.au)

The association wrote to the Queensland Health Minister, to request a meeting – see correspondence below

Nov 8 2022

Good Morning

I am the current president of Trigeminal Neuralgia Association Australia.

Our organisation has been supporting people suffering from trigeminal neuralgia for 20 years.

The WHO has recently recognised TN as a disability but there is very little awareness of the condition within Australia.

We are run entirely by volunteers and support sufferers with face to face, online and phone support group meetings.

It is extremely difficult getting stats within Australia about how many people actually suffer from the condition.  Sufferers often have to leave work because the pain is too hard to manage, which is a huge economic blow for them personally and of course our countries economy.

I would like to start a conversation about how we can help our sufferers, with better access to medical care, more training for neurologists, more neurologists, better pain management, stop the huge number of misdiagnosis and disability avenues etc.

I don’t really know the best first step, so I am hopeful, you can help us to make a difference.

See our website for further info

https://tnaaustralia.org.au/

I am sure you receive many submissions, but I am hopeful of a reply.

**********

Feb 17 2023

Good afternoon Lyn,

Thank you for your email dated on 8 November to the Honourable Yvette D’Ath MP, Minister for Health and Ambulance Services and Leader of the House requesting to meet.

Apologies for the delay in responding. Unfortunately, due to a heavily committed schedule the Minister is unable to meet. She has asked Julieanne Gilbert MP, Assistant Minister for Health to meet with you on her behalf.

The Assistant Minister’s office will be in contact with you shortly to arrange a time to meet via telephone. In the meantime, should you need to contact her office please email: assistantminister.health@ministerial.qld.gov.au.

If you no longer require the meeting, please advise the Assistant Minister’s office.

Kind regards,

All state governments run the health offering within their state.  We need to get all of the State Health Ministers on board to create a guideline for diagnosis and treatment of trigeminal neuralgia.

What else can you do to raise awareness about Trigeminal Neuralgia?

Last year we lit up landmarks in 11 cities on International Trigeminal Neuralgia Awareness Day October 7th.  This year we want to achieve much more but our volunteer base is very small.  I am asking that each of you read the article about what you can do to Light Up In Teal in 2023.

International Trigeminal Neuralgia Awareness Day – Light Up In Teal 2023 – Trigeminal Neuralgia Association Australia (tnaaustralia.org.au)

Direct involvement by members to nominate the next committee – we need volunteers

Lastly, my tenure as President has nearly run its course with our AGM scheduled for April 1st 2023, which will be conducted as a zoom meeting.  You can read the information about the committee nomination process in the link below and I encourage you all to make a nomination online, consider volunteering and at the very least, add the AGM date to your calendar and be involved in the meeting.

Nominate Your Committee – Trigeminal Neuralgia Association Australia (tnaaustralia.org.au)

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International Trigeminal Neuralgia Awareness Day – Light Up In Teal 2023

The year of 2023 is a very special year for the Association – our charity is 20 years old and we would like to mark it by participating in International Trigeminal Neuralgia Awareness Day in a big way.

The association is run by a small band of volunteers and although we would like to do so much to celebrate this amazing milestone, we need people to lend a hand.

It would be a stunning achievement if we could better the 11 cities, we partnered with in 2022, to celebrate International Trigeminal Neuralgia Awareness Day on October 7th 2023.

This initiative is to ask for help from you, our members, families and associates.  We have put together a Council Request and Press release Document.  Do you have time to download the form and send to your local council.   Some councils have an online portal where you can just upload the document.  Imagine if hundreds of people gave the Association 30 minutes of their time to put in a request to their city……

Light Up In Teal Request 2023 (pdf)

Light Up In Teal Request 2023 (doc)

How stunning it would be If we were able to get sufferers represented all around Australia with our Teal Beacon of Hope lighting up Bridges, Buildings or other Landmarks.

If you can help – the process is as follows

  1. Download the document either as a PDF or as a Word Document
  2. Go onto your cities webpage and find the Contact Us area
    1. If the portal allows you to upload a document – fill in your details and upload the request document
    2. If the portal requires you to enter a reason rather than a document upload – copy/paste the text of page 1 of the document into the portal
  3. You will receive an initial confirmation email – please forward the email to marketing@tnaaustralia.org.au
  4. When you receive an approval or a decline response – please forward the email to marketing@tnaaustralia.org.au
  5. The team here at the association will then publish details of your help and which cities have agreed to partner with us.

Let us see if together, we can achieve remarkable things

 

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Rare Disease Day February 28th 2023

Sufferers of trigeminal neuralgia know they are dealing with a rare disease.  Medical professionals rarely come across a patient with TN in their whole careers.   Diagnosis is difficult to obtain and the lack of neurologists, especially in Australia’s regional area, exasperate the isolation and despair for patients.

Every year the International Community come together to highlight the issues in February to raise awareness around rare diseases, and in October to highlight Trigeminal Neuralgia with the Light up in Teal event.

It is easy to feel helpless and isolated, but we urge all people diagnosed with TN to, tell your story,  create a family event which highlights the day, wear the colours and answer questions.

Doing nothing and waiting for change is not a great option.  Please tell us your story using this link.

Contact Us

Send a photo of your event or your outfit, and we will publish on our site.

How to Show Up for Rare Disease Day 2023

Light up and stripe up on February 28, organizers say, as preparations begin around the globe to raise awareness about rare diseases.

By Eric Monticello 04 Jan 2023
Rare Disease Day Video

It’s not too soon to start planning for Rare Disease Day 2023, celebrated every year on the last day of February.

“It is a day to come together as a united community and raise awareness for rare diseases,” said Kristen Angell, Associate Director of Advocacy with the National Organization for Rare Disorders (NORD), at a recent kickoff webinar. NORD, based in the United States, collaborates with European patient group EURORDIS on the annual event.

The themes for Rare Disease Day 2023 are #ShowYourStripes and #ShareYourColours, giving the community a visible way to come together on February 28. Organizers recommend wearing your zebra stripes and lighting up homes and landmarks in the Rare Disease Day color palette (blue, pink, green and purple). In February 2022, CSL showed its support by lighting up Philadelphia’s Boathouse Row.

But perhaps the most impactful way to participate is by telling your personal story, scientist Sheldon Garrison said during the NORD webinar. It was a patient’s story that changed his entire career trajectory to focus on rare disease research.

“Whether that’s an opportunity for someone to inspire or influence someone like myself that’s on the research side of things, or to share the story with a legislator, or to share a story within the overall community, that is to me, a massive, massive win,” Garrison said.

Why wear zebra stripes for Rare Disease Day? The zebra is an icon of rare disease patients owing to a physician in the 1940s who taught medical students the maxim “if you hear hoofbeats, think horses, not zebras.” At the time, it was practical advice to suspect the most likely causes of illness and symptoms. But decades later, 7,000 rare diseases have been identified and supporters of the cause turned that horses vs. zebra advice on its head. Rare disease advocates took on the zebra as a beloved symbol. If you attend a rare disease event, expect to see zebra hats, zebra shirts and even TZ!, the zebra mascot of the Immune Deficiency Foundation.

Other ideas for getting involved in Rare Disease Day 2023 include attending virtual and in-person events, hosting your own event, raising funds for research, hanging flyers at local coffee shops or making social media videos that draw attention to rare disease resources.

“There are so many ideas out there, so be creative and find what works best for you and the community that’s around you,” NORD Donor Engagement and Events Manager Jaime Pacheco said.

Find more resources at the Rare Disease Day website.

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Six Great Plant-Based Foods to Fight Nerve Pain

Six Great Plant-Based Foods to Fight Nerve Pain

By Dr. Bussell – March 30, 2021

If you’re living with nerve pain, there is a definite benefit to eating healthy, low-inflammatory foods. A plant-based diet offers abundant opportunities for healthier nerves and less pain.

What’s also great, is how easy it is to prepare simple meals at home, where you control the ingredients that go into your meals. The convenience of eating out doesn’t outweigh the risk of relying on restaurant kitchens to use foods or ingredients that will relieve rather than aggravate your nerve pain.

During National Nutrition Month and beyond, eat more of these six plant-based foods that are great for your health and help reduce nerve pain. Incorporate these into your diet every day in half or full cup servings, fresh or frozen. Eat them separately or mix up some appetizing salads. Bon appetit!

  1. Green and leafy vegetables. Broccoli, spinach and asparagus all contain vitamin B, a nutrient important for nerve regeneration and nerve function. Spinach, broccoli and kale also contain a micronutrient called alpha-lipoic acid that prevents nerve damage and improves nerve function.
  2. Fruits. Eat at least one fruit daily to help heal damaged nerves. Berries, peaches, cherries, red grapes, oranges and watermelon, among others, are loaded with antioxidants, which help to decrease inflammation and reduce nerve damage. Plus, grapes, blueberries and cranberries have been found to be full of a powerful anti-inflammatory compound called resveratrol.
  3. Zucchini. A type of summer squash, zucchini is actually a fruit. Like other fruits, it’s rich in antioxidants and, therefore, good for nerve cells. It’s also a good source of potassium, which promotes effective nerve transmission, and magnesium, which calms excited nerves.
  4. Sweet potato. This root vegetable offers several nerve health benefits: An abundance of vitamins A and C, which provides antioxidant protection for cells. Sweet potatoes also have natural anti-inflammatory compounds. Animal research has demonstrated that nerve and brain tissue has shown reduced inflammation after eating purple sweet potato extract. And the high fiber content of a sweet potato won’t spike your blood sugar because it causes starch to burn slowly.
  5. Quinoa. Although it’s commonly considered to be a grain, quinoa is actually a flowering plant that produces edible seeds. Once a staple food grown in the Andes Mountains for native people of Peru, Bolivia and Chile, quinoa has become a worldwide favorite, grown in more than 70 countries. Quinoa is a great source of potassium, which aids effective conduction of messages through nerves. It’s an excellent source of magnesium, phosphorus, manganese and folate. This superfood also contains protein, fiber, iron, copper and vitamin B6.
  6. Avocado. This unique fruit is full of healthy fats. Like quinoa, it has a healthy dose of potassium, which promotes effective nerve conduction. Avocados also help increase your body’s absorption of antioxidants.
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Appreciation from members

Sometimes all we can do is be the supportive shoulder, the conduit to pass on education and provide an environment for support groups.  When we hear of  great outcomes, it is so rewarding for all of our volunteers.

Kay Morden passed on her appreciation which we are delighted to share

 I “suffered”  from TN for 15 years until I had an MVD December 2021.    After diagnosis I am not sure what I would have done without the knowledge I gained and the support I received from TNA and my fellow Members (after attending one of the first Conferences in the Yarra Valley)
I live in Melbourne but I met Mark Dexter at another Conference on the Gold Coast and always thought if I ever decided to have a MVD (never dreaming I would) I would have Mark perform the operation.  He had a wonderful caring approach and seemed so interested in TN.
It’s been 12 months and I am pain free and medication free- absolutely fantastic.
I will always support the TNA and anyone who would like to know of my long,  individual TN journey and it’s successful outcome.
kind regards
Kay Morden.

PS  Tony MacPherson was a particularly wonderful support right through my “journey”  and would speak to me for over an hour on many occasions if I was going through a “rough” period.

Perry Campbell also renewed his membership despite being pain free for now.

I did renew even though my Trigeminal Neuralgia has been corrected (completely gone), by way of a microvascular decompression craniotomy in Sept 22.  A brilliant result by a brilliant team at RPA headed by the brilliant Prof. Brindha Shivalingum. Yahoo.

Kind regards,

Perry Campbell

Show quoted text

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Thinking and Depression: Changing Negative Thought Patterns

Thinking and Depression: Changing Negative Thought Patterns

By Wesley Buch, Ph.D., R. Psych.

Pain and the problems associated with pain – sleep disturbance, limitations, losses, conflict, and stressful circumstances – can all negatively affect how you think about yourself, others, and your world. Negative thinking can contribute to depressive feelings.

Life Events (injury/pain) —> Thoughts, Interpretations —> Feelings

If life events like an injury and other pain-related circumstances are distorted and misinterpreted in a negative way, this can lead to a depressed mood. A depressed mood is feelings of sadness or emptiness that linger all the time throughout your days for at least two weeks.

For example:

Event:

You overdo an activity and experience a pain flare-up.

Thoughts:
  • “I must have re-injured myself. Maybe this pain is from a whole new injury. It seems that whenever I get active, I end up harming myself all over again” (Hurt vs. Harm Interpretations of Pain).
  • “I’m going to give up all my activities so that I don’t harm myself anymore” (All or Nothing Thinking).
  • “I’m never going to get better. I could end up in a wheelchair” (Catastrophizing).
Mood:

Discouraged, down, hopeless; this depressed mood can then lead to more depressive thinking, which continues the vicious cycle between pain and mood.

Some thinking tends to increase pain. For example, negative thoughts, images, and feelings can actually make pain feel worse.

Thought:

“I can’t take this headache any longer!”

Image:

“A vice crushing my head.”

Feeling:

Hopelessness.

Changing Negative Thought Patterns

Here are some ideas about how to change the negative thinking patterns that lead to depression. There are other approaches to altering negative thought patterns, but these ideas will get you started:

  • Train yourself to recognize your negative thought patterns and write them down (a cognitive therapist can help you with this).
  • Learn how these thoughts are distorted.
  • Practice ‘talking back’ to your negative thoughts – challenge them and ‘gather evidence’ against them.
  • Replace them with positive coping thoughts and images:
Thought:

“I’ll use a strategy I’ve learned, e.g. rapid self-calming with breath work, to deal with this. I’ll try to keep the pain at a manageable level. I’ve withstood worse than this.”

Image:

A peaceful scene; a place you love to be; an imaginary adventure, or foreign travel.

Feeling:

Calmness, self-nurturance, satisfaction with your efforts to cope.

Here are some questions that will help you to effectively challenge any negative thought patterns:
  1. What is the evidence for or against this idea? Where is the logic? Are my judgments based on feelings and past experiences rather than the facts of this situation?
  2. Am I oversimplifying a cause-and-effect relationship?
  3. Am I confusing a habit with a fact?
  4. Am I confusing my version of the facts with the facts as they are?
  5. Am I thinking in all-or-nothing terms?
  6. Am I using words or phrases that are extreme or exaggerated? (e.g. can’t, must, every time, should, need, never, forever, always)
  7. Am I taking selected examples out of context?
  8. Am I thinking in terms of certainties instead of probabilities? Am I confusing a low probability with a high probability?
  9. Am I focusing on irrelevant factors?

If You Feel Depressed

Tell someone you trust.

Join Live Plan Be’s supportive forum to benefit from the wisdom of others who have chronic pain and depression – and share some of the helpful things you have learned. Or find a support group near you. Pain and depression both tend to ‘disappear’ you and disconnect you from others, so do the opposite in small steps.

Book a counselling session

Book a ‘counseling session’ appointment (usually 10-15 minutes) with your physician if your emotional life is taking a turn for the worse. You will learn about medications that lessen depression but also pain and sleep disturbance at the same time. Ask about side effects. Seek specific medication advice about greater nighttime pain control in order to obtain a deeper sleep. Medication and self-management activities can also help each other. You can also book a few counseling sessions at your local mental health centre.

Learn self-management strategies

Learn about pain self-management strategies from Live Plan Be’s educational material. Learning to ‘put a muffler on your pain’ will benefit your mood. For example, learn about pain distancing, compassionate self-talk when in pain, gentle movement routines despite pain, pacing to prevent pain flare-ups, hurt vs. harm pain interpretations, and rapid self-calming strategies during pain flare-ups.

Get better quality sleep

Learn about how to get a better night’s sleep. Review the Live Plan Be sleep module for tips and resources. Ask your physician about how to get a better night’s rest. Getting better sleep tends to improve mood and stamina for self-management activities.

Make a plan

Use Live Plan Be’s action planning tools to make some goals about daily activities that increase your interest, enjoyment, or sense of accomplishment but without repeated pain flare-ups. You can also target activities that you miss or avoid now. Make these activity goals small and manageable. For example, go for a short walk, especially with a friend. Go to your local aquatic centre to enjoy the weightlessness of moving and floating in the water, then go to the hot tub and let go of all bodily tension. These are mood-boosting activities. Incorporate these activities into your daily routines. Show these goals to your physician at your next visit. Discuss them with a friend and make some goals for social activities – an especially powerful mood booster.

Focus on positive thought patterns

Review the information on Changing Negative Thought Patterns above. Thinking patterns affect mood for better or worse, and you can learn how to manage these more effectively.

Go for a massage

Go for a few gentle massage sessions from a Registered Massage Therapist in your area. People with chronic pain and depression often feel alienated from their own bodies. They become ‘the untouchables.’ Massage not only provides professional touch but the release of bodily tension that often accompanies depression.

Take advantage of available resources

In British Columbia, try the free Bounce Back program for depression online. This program will connect you with a real person who will walk you through a cognitive-behavioural self-management approach to depression using a DVD.

This article and other helpful educational links, stories, articles and research van be found on the below website

https://www.liveplanbe.ca/pain-education

 

 

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How to free yourself from anxiety, with Paul McKenna

podcast

Do you struggle with anxiety? For this episode of The Liz Earle Wellbeing Show, Liz chats to hypnotherapist and behavioural scientist Paul McKenna about how we can free ourselves from anxious feelings.

Paul guides Liz through different techniques, such as havening and freeze frame, to help us when we are feeling stressed out.

The episode also covers neuro-linguistic programming (NLP) and whether manifestation can help us hit our goals. Plus, Paul reveals how he first became fascinated with hypnotherapy and the science behind it.

free-yourself-from-anxiety

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Facial Pain: Migraine, Trigeminal Neuralgia and more

podcast

This article and podcast has been created by

Heads Up 

Headache Specialists from the UK charity National Migraine Centre discuss everything migraine and headache related.

Dr Katy Munro and Dr Jessica Briscoe discuss ‘Facial Pain: Migraine, Trigeminal Neuralgia and more’ in the latest episode of our Heads Up podcast, with special guest consultant neurologist Dr Giorgio Lambru.

For more information:

Facial Pain Association

tna org uk

If you have any questions/comments or any topics you would like us to cover in our future episodes email: info@nationalmigrainecentre.org.uk.

WE ARE A CHARITY. Please help us keep going in the following ways:

  • Donate to help us continue to release new episodes: www.justgiving.com/campaign/headsup
  • Subscribe!
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Facial Pain Podcast