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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.

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4 What to Do When Your Surgeon Says There is Nothing Left to Do

FACIAL PAIN: A 21st CENTURY GUIDE 4 What to Do When Your Surgeon Says There is Nothing Left to Do For People with Trigeminal Neuralgia Neuropathic Pain By Jeffrey A. Brown, MD (USA) You think you will have a microvascular decompression (MVD), but there is no compression. Your pain returned after your MVD, and your doctor […]
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Webinar – 2022 What We Have Been Doing

We had a great deal to talk about in respect of the achievements our Association has covered in the last year, and our plans for the future.

Thank you so much to all of the attendees who joined our live webinar this morning.  It was lovely to see you all, and I really enjoyed our conversations after the webinar.  It is always so informative to hear from our sufferers directly, and be able to offer advice on staying connected, being part of our community and not becoming isolated.  Our conversations may also help other sufferers who will view the recording.

It really shows how important it is for our trigeminal neuralgia and associated facial pain sufferers, to connect, not just to support group leaders, but to each other.

We hope to repeat this type of webinar in 2023 where we can showcase our 20-year anniversary celebrations.  Please don’t forget to hit the subscribe button on our You Tube channel.

The Presentation slides are available here – 2022 - What We Have Been Doing Presentation

Our webinar can be viewed here

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How to Help People With Chronic Pain or Illness

This article was written by Liz the owner of the Despite Pain Blog .  The article contains links to other content that you may find useful.

Liz suffers from scoliosis (a curvature of her spine) when she was about ten years old. Initially, the orthopaedic surgeon said it was a cosmetic problem and no surgery was needed. But it wasn’t just a cosmetic problem. It started causing chronic back and rib pain when she was a teenager. The scoliosis worsened and when she was eventually referred to see a specialist, he could do nothing to help. Her pain continued to worsen, became constant and eventually, when she was 28, she had to retire from work.

Her back pain was chronic and disabling, but she lived with another pain condition that is just as debilitating. Trigeminal neuralgia, which causes severe facial pain. For an unknown reason, the trigeminal nerves in her face send pain signals to her brain.

In 2017, she was also diagnosed with the autoimmune condition, coeliac disease.

She has lived with chronic pain for most of her life, but try’s to keep smiling.

Click here to find out more about Liz.

10 Suggestions on How to Help People with Chronic Pain or Chronic Illness

If you have a friend or relative who lives with chronic pain or a chronic illness, the following suggestions are ways in which you could possibly provide physical help and support.

1. Believe Them

Believing them is the most important and supportive way to help people with chronic pain or illness.

Believe them when they tell you about their pain or illness. Believe them if they tell you that their life is difficult and that they’re struggling to cope. Believe them when they say their pain is off the charts. Believe them when they say they feel depressed. Please, never doubt them.

They need your empathy and understanding and that starts by letting them know that you believe them.

2. Listen to Them

Listen to them. Really listen.

If you ask them how they are feeling, please listen to the answer. There’s no point in asking otherwise.

Tell them that you are there if they want to vent. Many people feel they can’t or shouldn’t do that so tell them that you don’t mind listening.

They might say they’re fine when you know they’re not. So say, “I know you say you’re fine, but it’s okay to be honest with me.” If they still say they’re fine, don’t push it. Some people simply don’t like talking about their health or they might not be in the mood for opening up.

Never repeat what they tell you – if they feel comfortable enough to talk to you, don’t betray them by repeating what they say to others. You’ve gained their trust so don’t lose it.

3. Learn About Their Condition

Try to learn about their condition and how it affects them so that you understand more. I’m not suggesting you need to learn enough to obtain a medical degree, but if you learn a little bit, it will let them see that you are actually interested rather than being there out of a sense of duty.

4. Empathise

Empathise with them, but don’t tell them you know exactly how they feel. You might get an occasional bad headache, but that’s not the same as living with trigeminal neuralgia or chronic debilitating migraines. Even if you suffer from the same condition, everyone’s experience is different so, in reality, you don’t really know exactly how they feel. Empathise and tell them that you appreciate that their life can’t be easy.

5. Be There

Living with chronic pain or chronic illness can be a lonely life. Sometimes people just need a friend so give them your time.

They don’t need or want to talk about their pain or illness all the time. They don’t want pity or sympathy. Nor do they want to be treated with kid gloves and they do not expect you to be a nursemaid. They want to feel normal, do normal things and have normal chit-chat with you.

They need distractions from their health. You could share a meal with them, help them with a hobby or just sit with them to play a board game or enjoy a movie together. You could take them for a drive, go for a walk or take them shopping if they’re able. If you do this, please go at their pace so they don’t feel as though they’re holding you back, otherwise they will feel guilty. Talk about other things, including yourself. Talk about your own troubles if you have any because they still care about what’s going on in your life.

6. Help with Appointments

Offer to take them to their medical appointments. They might need your help getting there or they might be grateful for some moral support or an extra pair of ears during the appointment.

7. Offer Practical Help

Living with chronic pain or illness is debilitating, therefore simple tasks are often more like huge, possibly impossible, chores. They might be grateful for your help with some basic housework, making a meal or doing some shopping. Or perhaps you could help by picking their kids up from school or walking their dog occasionally.

But be tactful about how you offer your help as it may be construed as criticism.

For example, don’t tell them that their house needs to be cleaned. Instead, tell them that you realise that some chores must be extremely difficult due to their pain or illness, and you’d be happy to help out with something they find too difficult.

Try to offer help in a way that it’s easier for them to accept. For example, say, “I will be at the supermarket tomorrow, so it will be easy to pick up some shopping for you while I’m there.” That way, they know that you are already going to the supermarket, so you aren’t going out of your way just for them.

Offer help but try to understand if your kind offer is turned down. They might feel embarrassed, or they may still want independence so if they repeatedly say they don’t need or want your help, accept that and back off. Rather than be upset or take offence, simply tell them that you’re there if they ever need you.

8. Be Inclusive

When people are living with pain or illness, they might not be well enough to attend social events but please invite them anyway. They might not be well enough to come to your birthday party or to meet for coffee, but they also don’t like to feel excluded, so invite them and let them decide.

If they say yes, they might have to cancel or leave early due to their illness getting in the way. If that happens, don’t take it personally. Try to understand that it’s out of their control and accept that their health can be unpredictable. They are probably embarrassed and annoyed with themselves, so a little understanding will go a long way.

9. Don’t…

There are a lot of things you shouldn’t do or say. Here are a few:

    • Please don’t abandon them. Their pain or illness might get in the way, but they still value and want the relationship they have with you.
    • Never suggest that they shouldn’t take their medication or that they take too much. If you have a serious concern that it could be making them ill, suggest they speak to their doctor.
    • Don’t insinuate that they can’t be trying hard enough by telling them that your amazing friend has the same condition but is able to do so much more than them.
    • Don’t minimise their pain or illness by saying things like, “Well, it could be worse…” or “At least it’s not cancer.”
    • Don’t be dismissive of their symptoms or feelings and don’t tell them how
    • they should feel. Their pain or illness is real. Their feelings are real and valid.
    • Never suggest that they just need to give themselves a shake, pray a bit harder, go for a brisk walk or be more positive in order to feel better. Statements like that undermine them and their condition. They are also patronising and extremely rude.
    • Avoid suggesting strange herbal concoctions which are advertised online. Most of those strange herbal concoctions are expensive snake oil cures.
    • And please don’t suggest that they drink a kale and turmeric smoothie to cure their ills. If you do, you might get said smoothie tipped over your head.

10.Bring Chocolate

Unlike kale and turmeric smoothies, chocolate is nearly always welcome. So, bring on the chocolate. Or cake. That works too.

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Presidents Monthly Musings – September 2022 – Volunteering

The committee has had many conversations over the last year around  the subject of how to attract volunteers to help our Association.   I understand it can be a daunting thought,  not only having to deal with the restrictions Trigeminal Neuralgia imposes on sufferers,  but then, add the thought of offering your help, when you have no idea how you are going to feel from day to day,  and sometimes moment to moment.

Then of course there are the questions, help to do what?“, and “for how long?”

You don’t launch yourself into the unknown in normal life,  so why would you do so to volunteer.

Life decisions are generally built via research and investigation,  coupled with a time and cost evaluation,  what job do I want?  where shall I go on holiday? where do I want to live? what schools will the children attend?

So it is a bit naive to think a person will volunteer their precious time, even to an Organisation that they care about, without following through with a robust consideration process.

My own journey into becoming a volunteer has been brewing in the back of my mind for many years but without a place to reside.  When our family was young life was all about schooling,  careers,  bills and just making it through the normal dramas of life.

We migrated to Australia in 2002, and I became aware of many volunteer organisations, SES,  Rural Fire Service,  The Lions, Life Surf Saving being the main ones.  In the back of my mind I thought I might get involved with one of these organisations one day.  And that is where the thought resided for many years, as we created our new life in  Australia…..dormant.

My working life was always extremely busy,  very demanding, with long hours, so to volunteer was not an option at that point.   Then grandchildren came along,  and precious spare time was devoted to them.   In my mind I was volunteering my time to help support them and provide activities that busy parents just didn’t have time for.

And then I required open heart surgery and a pacemaker,  which slowed me down a bit.   I took the opportunity to retire early,  life is too short after all.   Perhaps this was the time to volunteer?   Not so,  I worked through my physical recovery, then  worked through my mental journey of reconciliation that a little piece of machinery implanted in my chest,  was keeping me alive.  Then the realisation, that, coupled with getting older, I didn’t have the physical stamina to run around like I once did or do hours in the garden.

So I adjusted to my new normal until once again, it was not.   We were in the process of executing the next stage of our life in 2017,  down sizing to a cabin on our sons property,  and a countdown to Patrick’s retirement,  when he started to get weird symptoms and feeling generally unwell.   In that time he was keeping the magnitude of what he was dealing with,  to himself,  and it wasn’t until 2020 that he was finally diagnosed with bi-lateral Trigeminal Neuralgia.

And that is where the thought of volunteering popped up again.   We attended our first support group meeting in April 2021 and it was mentioned that the Association needed a volunteer to take over the Secretary’s role.   If I am honest with myself,  the skills required matched what I could offer,  and  at that time  my focus was on Patrick’s well-being and learning about Trigeminal Neuralgia.  Was this perhaps, the way I could connect with people and professionals who could miraculously fix him?  Of course when I was handed over the duties,  my business background kicked in,  and so started the process of increasing and improving our digital outreach program.

I have a results driven approach to everything in my life, so for me, if I was going to volunteer,  I needed to set in place a structure where our Association could grow.  As President I have a duty to ensure my tenure complies to our mission statement to advocate and support all sufferers of Trigeminal Neuralgia and that is my prime focus.

I haven’t been the only volunteer to step up in the last 18 months.   This year Sarah Wilkinson,  a young suffer of Trigeminal Neuralgia living in Newcastle, has joined the Committee of Management too, and offered her skills in spatial data analysis.  Gay Roberts in Adelaide, who has been helping our long standing Support Leader Graham Boyer, took over the lead role in the Support Group.  Kim O’Donnell, a new member who has experience as a counsellor,  expressed an interest in setting up a Support Group in her area the Lockyer Valley.  The inaugural meeting is next month.  And I welcome these amazing people to our volunteer family.

In business you have to provide a support framework in order for people to excel,  and Charity’s must operate in the same way.    We value all of our volunteers and in order to support them, to support you,  we have now completed a training module for volunteers to work through to reinforce knowledge, and act as a reference resource.  All of our new volunteers are working their way through the modules at a pace that works for them.

We recently published a member’s survey and a couple of members have expressed a wish to volunteer in some capacity.

So that brings us back to  the “what am I volunteering for?” and  “how long am I volunteering for?”

To answer these questions we are creating an organisational chart to show the areas we need people to volunteer,  and if you have skills that fit,  why not consider our  “Volunteer for a Year”, or “Volunteer for a Project”, program which will be launched next year.

We don’t want anyone to feel a heavy weight of responsibility when they say yes to volunteering.   We want every volunteer to feel excited and motivated and able to look back on their year, or project  and feel accomplished and proud.  Our Association has provided services for  20 years, making a profound difference to many people and when you can make a difference to just one person  then everything is worth while.

I recently attending an online training session run by the Facial Pain Association in America, and one support group leader was worried that at her meetings, she sometimes had only a couple of attendees.   What the counsellor said was very thought provoking…

We have to put aside our own expectations, and ideas of success,  and concentrate on the needs of the people who we are volunteering to help.  If just one person attends and receives the help and support they need,  isn’t that enough?

So what roles do our Association need to fill

  • we need a Twitter account manager
  • we need fund raisers,
  • we need a membership manager,
  • we need a secretary,
  • we always need people willing to run support group meetings,  online and in person,
  • we need a replacement Support Group Leader to take over the Melbourne area,  because our current leader Emelye, who has been in the role for many years, needs to step away and  concentrate on other things,
  • we need a person to take on the Light up in Teal International Awareness Day each year
  • we need event planners to help us organise conferences and webinars
  • We need creative people who can utilise our Canva Licence and produce marketing material
  • We need an indexer to work through our newsletters, so we can reference material already produced
  • we need content writers to provide articles for our website

Quite honestly the list of things is huge,  but just like eating an elephant a bite at a time,  if we create an opportunity for a sufferer or family member to contribute just a little,  we will be serving all Trigeminal Neuralgia sufferers to the best of our ability.   I really cannot ask for more.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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Facial Pain Diagnosis Tool Q&A – Dr. Kim Burchiel

Walking the path of facial pain  diagnosis for Trigeminal Neuralgia is not easy.  We know that many sufferers of Trigeminal Neuralgia struggle getting across to their medical practitioners where there pain is and how it feels for them.

  • The following information was published by the FPA in 2021 but is so relevant

Facial Pain Association

Neuropathic facial pain is diagnosed almost exclusively by the individual’s description of the symptoms. Dr. Kim Burchiel developed a list of questions to help doctors determine exactly which classification may describe a patient’s pain. You may want to complete the Burchiel Questionnaire for your physician as a way of helping to determine the correct pain classification. This questionnaire in the hands of experienced neurologists and neurosurgeons can be very powerful

 

Dr. Kim Burchiel, an OHSU neurosurgeon and one of the world’s leading experts on facial pain, talks with Shirley McCartney, Ph.D., about the facial pain diagnostic tool he developed.

McCartney is the director of clinical research at the OHSU School of Medicine’s Department of Neurological Surgery. She and Dr. Burchiel have worked together on many facial pain studies

Read the interview here

The questions that have been developed can be found below for your reference

QUESTIONS

1) When you have pain, is it predominately in your face (i.e. forehead, eye, cheek, nose, upper/lower jaw, lips, etc.)?

2) Do you have pain just on one side of your face?

3) Is your pain either entirely or mostly brief (seconds to minutes) and unpredictable sensations (electrical, shocking, stabbing, shooting)?

4) Do you have constant background facial pain (aching, burning, throbbing, stinging)?

5) Do you have any constant facial numbness?

6) Can your pain start by something touching your face (e.g. by eating, washing your face, shaving, brushing teeth, etc.)?

7) Since your pain began, have you ever experienced periods of weeks, months or years when you were pain-free? (This does not include periods after any pain-relieving surgery or while you were on medications for your pain.)

8) Have you ever taken Tegretol, Neurontin, Baclofen, Trileptal or other anti-seizure drugs (AED’s) for your facial pain?

9) Did you ever experience any major reduction in facial pain (partial or complete) from taking any of these AEDs?

10) Have you ever had surgery for your pain? (e.g. neurectomy, radiofrequency, lesioning, glycerol injection, balloon compression, rhizotomy, microvascular decompression or radiosurgery)

11) Did your current pain start only after trigeminal nerve surgery? If this is a recurrence of your original pain after successful trigeminal nerve surgery, the answer is, “no”.

12) Did your pain start after facial herpes zoster or “shingles” rash (not merely “fever blisters” around the mouth)?

13)Do you have multiple sclerosis?

14)Did your pain start after a facial injury?

15) Did your pain start only after facial surgery (i.e. oral surgery, ear/ nose/throat surgery or plastic surgery)?

16) When you place your index finger right in front of your ears on both sides at once and feel your jaw open and close, does the area under your fingers on either side hurt?