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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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Emergency Department Plastic Wallet Cards

Following the webinar presented by A/Prof Arun Aggarwal in July, we brainstormed the possibility of providing a plastic wallet card for our sufferers to present to the Emergency Department of their hospital, when Trigeminal Neuralgia break through pain becomes too much to cope with. We worked with PR Design and produced a fantastic card which […]
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President’s Monthly Musings – August 2022 – Quality of Life

We are currently on a weeks break in Evans Head In Northern NSW, one of our favourite places to bring our caravan, and we all need to find a place, could be next door or down the street, to give us a break, even if only for 15 minutes.  The campsite we use  has everything we need and is right next to the beach and with new roads it is a 2 hour trip from home

It is so important to do what you can to improve physical and mental health and this place is a little slice of heaven so it feels impossible to be miserable here

Patrick my husband has always loved the water, preferably the sea but a river or a lake will do.  He has always been a super active man, serving in the British Army for 9 years, competing in marathons, just a few seconds off cracking the 3 hour marathon back in the day.  Then came his Martial Arts period where he achieved a Black Belt in Jujitsu.  Then to challenge himself further, he took up triathlon competing and then competed in the longest day Iron Man challenge of swimming 2.4 miles, 112 mile bike ride followed by a 26.22 mile run.   Not without drama and the devastation of a fall from his bike which stuck his railing in a high gear for most of the ride.  Damn the rain, but he didn’t give up, upset that he didn’t get the time he wanted, but came in under 13 hours.  Imagine the sheer determination that must have taken

When we arrived in Australia in 2002 he was looking forward to competing in the local Gold Coast triathlon scene….but then he was diagnosed with a stuffed hip….so running was out of the question, so he turned to surfing.  Two hip replacements later and the busyness of life, career and family, surfing stood the test of time.  Any time Patrick can get into the water he is a happy man

And then came a whole load of medical conditions that it seems unfair one person has to carry, psoriatic arthritis, peripheral neuropathy, carpel tunnel in both wrists and bilateral Trigeminal Neuralgia.  Of course diagnosis was difficult due to the complexities of other conditions, and  all through these difficult years, Patrick has found his happy place in the water.  Whether he is in pain or not, he gets up and surfs most week days (weekends are too crowded), and if the surf is bad he joins me on my morning walk up the hill, and has recently discovered wake boarding

I was walking the beach today while he surfed, the expanse of sand practically empty of people, a few gulls and the odd person walking their dog.  I was listening to the sea , waves crashing,  sand sucking, water lapping around my ankles, and I sighed deeply, just letting the moment transport me into happy thoughts

It got me thinking about how our brains fight against us to present us with unhelpful thoughts or remind us of our hard time or our failures.  I have recently been doing some research on Psychology and Cognitive Behaviour Therapy to provide training aids for our Support Group Leaders, and that process has shown me the power of positive thought or happy memories.  It is so hard to be positive when you are succumbing to chronic pain every day, but it may be easier to focus on better times or things that make you happy

We sat with a glass of wine yesterday and recounted some of our high spots things we have done, laughed about our silliness and just revelled in remembering those times.  It was fun and took our minds off the pain and things that have to get done.

Recently when I dropped into our sons house (we live on the same property so that can be a daily occurrence), I noticed he had a rotating file of pictures of himself and his family doing fun things – laughing – living accompanied by the music he is into right now.  I said “wow that’s cool I love that”, and he said “yes it reminds me of how far we have come, and the great times we have had, it makes me happy”, “I keep moving onto the next project and don’t take time to just enjoy the past so this makes me appreciate life”.   Thankfully he is in good health – although he laughingly threatens his Dad not to have passed all the bad genes to him

I don’t suffer chronic pain, but as a family it confronts us everyday, I just wish I had a magic wand…..

So the power of music, pictures, memories all have been linked to positive and happy thoughts which help you cope and improve mental health.  Time to bring out the music you love,  print out some happy pictures and put them on the fridge, or get your tech savvy youngsters to set up your digital photos to scroll your TV.  Take time out to remember happy memories and go to places that just make your heart sing

The sound of the ocean – just makes us happy nothing else matters 

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Tasmania Support Group Meeting with Mr Jeremy Russell

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In March of this year, Helen Tyzack our Tasmanian Support Group Leader arranged an informal zoom webinar, presented by Mr Jeremy Russell

Mr Jeremy Russell is an Australian trained neurosurgeon who manages all general neurosurgical conditions. He has subspecialty expertise in both cerebrovascular and skull base neurosurgery, having obtained fellowships in both areas at the Toronto Western Hospital in Canada. He uses state of the art intraoperative technology to perform angiograms (vessel imaging) and neuromonitoring when appropriate, significantly reducing the potential risk of stroke to patients.

Jeremy is a member of our Medical Advisory Board and is always happy to assist our members with advice and time which we really appreciate

We have been provided with the power point presentation [Download not found] and the recording of the meeting below.  We hope you find both useful

 

 

 

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Webinar – Prof Arun Aggarwal- presenting to the emergency department for pain management

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When Trigeminal Neuralgia pain is too much: presenting to the emergency department for pain management

In July 2022 we were delighted to host a webinar chaired by A/Prof  Liam Caffery and presented by Prof Arun Aggarwal

Professor Arun Aggarwal is a highly experienced neurologist with expertise in chronic pain management.

Professor Aggarwal graduated from the University of Adelaide in 1987 and went on to specialise in neurology, rehabilitation medicine and pain medicine and is a Fellow of the Royal Australasian College of Physicians, the Australasian Faculty of Rehabilitation Medicine, and the Australasian Faculty of Pain Medicine.

Professor Aggarwal completed his PhD at the University of Sydney on motor neuron disease. He currently oversees a number of research trials at the University of Sydney’s Medical School including trials on trigeminal neuralgia and chronic neuropathic pain.

Professor Aggarwal sits on the on the Medical Advisory Board of Trigeminal Neuralgia Association.

In this webinar he will speak on “When trigeminal neuralgia pain is too much: presenting to the emergency department for pain management”

You may download the presentation with this link [Download not found]

Our Association is working hard to provide clearly understood information, not only to our sufferers but to the medical and dental profession.  We thank all who logged in to watch the webinar live and they had the opportunity to ask questions and receive replies.

We would like to thank our Medical Advisory Board Members for the work they do and the advocacy they provide to all sufferers.  Contact details for our MAB members can be found here

 

012 – YouTube TNAA – Prof Arun Aggarwal – When Trigeminal Neuralgia pain
is too much Presenting to the Emergency Department

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Self Management Navigator Tool – a guide to questions that may need answering

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The painconcern.org.uk have developed a self help sheet to help pain sufferers navigate the questions that you may want to ask during medical appointments

This innovation has been trialled in the UK but the factors involved are universal

You can download the form from the article below, this is a free resource

Self-Management Navigator Tool

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A Matter of Interpretation

Active listen is a skill,  but there are times when even the best of us, can misinterpret what they have heard.

The below article was published by By Carol Levy, PNN Columnist in Aug 2021

I recently read a post in one of the online chronic pain support groups. “Sue” had just left an appointment with her pain management doctor. She was enraged, so angry about the way the meeting had gone, that she went right to her computer and complained about it.

“My doctor asked, ‘What do you think about my lowering the pain meds you’re on?’” Sue wrote.

“How dare he reduce them!” was her response. Sue said the medications were helping her and the doctor had some nerve to ask. All these doctors want to do is hurt us, she wrote, and if it wasn’t for the CDC and FDA, this wouldn’t be happening.

I read her post and was somewhat confounded by her anger. She did not include any information on how the meeting ended. Did he lower her dosage or the number of pills? I could see how upset that would make someone, especially if the drugs were helping.

But he didn’t say, “I am going to lower the level of opiates I am giving you.” He said it in a way that seemed, to me, like he meant to open a discussion.

It reminded me of a difficult crossword puzzle I had just completed. It was so frustrating. I had it all done, but for one four-letter word. The clue was “wind.” All I could think of was “blow,” as in the wind blowing, but the letters didn’t fit.

There was a “C” for the first letter but I could not think of one word that started with “C” that fit the clue. No matter what letters I tried, I could not think of any other answer but “blow.”

Finally, I was able to figure out the word. The answer was “coil.”

“Coil,” I thought. “Oh, for goodness’ sake.”

I was so obsessed with my one interpretation, it never occurred to me to consider another. It wasn’t wind, as in the wind blows. It was wind, as in winding a clock or a windy road.

I think we do this often, and not just with medical people. They make a statement or ask a question that seems clear. But to the listener it carries a whole different meaning.

It’s harder when you’re right there. Reading about it online made it easier for me to see it as the doctor asking, not demanding or insisting. In the heat of the moment, it may well sound like, “I’m not going to help you anymore. I’m stopping the drugs that have been helping you.”

There are crosswords and cross words. Sometimes we have to stop, take a deep breath, and instead of responding with angry or impulsive words, ask for an explanation.

“Are you asking me about lowering my meds or are you telling me you will?”

 If it’s the latter, it may well be the time to be upset. If it’s the former, it’s time to open the discussion.

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.”  Carol is the moderator of the Facebook support group “Women in Pain Awareness.”

 

 

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Chronic Pain – No Longer Normal

Any one living with chronic pain tries to live a normal life.   That idea is really quite absurd because when you are living a life evaluating what you can or can’t do every moment of the day…..clearly you you are not going to fit in the “normal” box

This article was written by By Carol Levy, (PNN Columnist) and I think she describes the challenges really well

A Pained Life: The Blame Game

Do you ever second guess yourself or play the blame game?  I did it again when I found myself doing too much.

While reading, my eye pain from trigeminal neuralgia started to grow and I thought, “Oh heck, I can do one more page.” And with each additional page, I repeated what has become a mantra: “It’s okay. I can do it.”

But of course, I can’t. Not without paying a price.

I finished most of what I wanted to do, my eye pain constantly telling and then yelling at me, “Stop already!”

By the time I gave in and stopped, the level of pain was exquisite. I had no choice but to go to straight to bed, and try not to move my eyes for 15 minutes, if I was lucky, or an hour or more if I was not

I do the same when going outside. I know a breeze, or even worse the wind, will again trigger the pain from trigeminal neuralgia. Any touch to the affected side of my face does. But I so much want to go outside.

“Oh, the wind doesn’t look that bad,” I’ll say to myself as I watch the tree in my backyard swaying from the strength of the wind against it. I go outside, the pain is triggered and I scurry back inside as fast as I can, then wait the 15 minutes to an hour before the pain calms down.

The whole time I lie there and self-flagellate: “I knew to stop, but heaven forbid I should do what I know is right. I knew better. It serves me right.” And so on.

Most people do this kind of thing. “I knew I shouldn’t have eaten that last slice of cake, this stomach ache serves me right.” or “I knew I shouldn’t have made that right turn back there and now I’m lost.”

It’s normal, for everyone but us. Because our lives stopped being “normal” the moment the pain took over. For me, “normal” meant reading for as long as I wanted, even for hours at a time; watching a movie and enjoying the brightness and movements on the screen; walking outside even when the wind is strong; or enjoying the feel of snowflakes falling on my face.

My “normal” for the last few decades has been the exact opposite.

We can’t blame ourselves when normal doesn’t work for us anymore. Our “new normal” is stopping before the pain gets too bad, being honest and saying, “I’m sorry. I can’t do that activity or go with you today.”

To me, my new normal is an awful thing, but the longer I try to deny it, to hold on to my old normal, the harder it is to accept. And it seems there is no time limit for how long you can hold onto the false hope that the old normal will return.

The irony is that the word normal means “standard,” yet everyone’s normal is defined by their own peculiar standards and needs. So, at the end of the day, there is no true normal for anyone but the one measured by their own internal yardstick.

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.”  Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.

 

 

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Chronic Pain Infographic

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Many of our learnt reactions have been created from previous experiences, and our brains then program us how to behave.  However we can reprogram our thoughts and reactions with a bit of brain training

Targeted Rewiring
The process of rewiring the neural pathways of chronic
pain requires experimentation, patience, and consistency.
Science-backed techniques,
like those found in the Curable
app, can greatly assist in this
process

This handy Info-graphic produced by Curable gives an insight into the reactions we can change – download from the link below

[Download not found]
We mention the Curable App as one method to help reduce the impact of pain,  there are other apps on the market and we are not endorsing use or purchase

 

 

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Vitamin D Deficiency Linked to Chronic Inflammation

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We are always interested in research which can show what conditions may cause chronic inflammation

Australian Center for Precision Health, University of South Australia Cancer Research Institute,
Adelaide, Australia, 2
South Australian Health and Medical Research Institute, Adelaide, Australia and 3
Population, Policy and Practice, UCL Institute of Child Health, London, UK
*Corresponding author. Australian Center for Precision Health, University of South Australia Cancer Research Institute,
GPO Box 2471, Adelaide, SA 5001, Australia. E-mail: Elina.Hypponen@unisa.edu.au
Received 14 December 2021; Editorial decision 29 March 2022; Accepted 8 April 2022

 

Abstract
Background: Low vitamin D status is often associated with systemic low-grade inflam-
mation as reflected by elevated C-reactive protein (CRP) levels. We investigated the cau-
sality and direction of the association between vitamin D status and CRP using linear and non-linear Mendelian randomization (MR) analyses.

Methods: MR analyses were conducted using data from 294 970 unrelated participants
of White-British ancestry from the UK Biobank. Serum 25-hydroxyvitamin D [25(OH)D] and CRP concentrations were instrumented using 35 and 46 genome-wide significant variants, respectively.

Results: In non-linear MR analysis, genetically predicted serum 25(OH)D had an L-shaped
association with serum CRP, where CRP levels decreased sharply with increasing
25(OH)D concentration for participants within the deficiency range (<25 nmol/L) and lev-
elled off at – 50 nmol/L of 25(OH)D (Pnon-linear ¼ 1.49E-4).

Analyses using several pleiotropy-robust methods provided consistent results in stratified MR analyses, con-
firming the inverse association between 25(OH)D and CRP in the deficiency range
(P ¼ 1.10E-05) but not with higher concentrations. Neither linear or non-linear MR analysis supported a causal effect of serum CRP level on 25(OH)D concentration (Plinear ¼ 0.32 and Pnon-linear ¼ 0.76).
Conclusion: The observed association between 25(OH)D and CRP is likely to be caused by vitamin D deficiency.

Correction of low vitamin D status may reduce chronic inflammation.
Key words: Non-linear Mendelian randomization, vitamin D, serum 25-hydroxyvitamin D concentration, C-reactive
protein, chronic inflammation

 

The full study can be read below

[Download not found]