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President’s Reflections – Oct 2023

Hello everyone I hope you enjoy this edition of my ā€˜President’s Reflections’.

National Support Line

During the past month, I have accumulated 347minutes of support time on the National Support Help Line for people living with TN.

Support Group Leader Meeting

I held our first support group leader meeting for the year, via Zoom 08/09/2023, I did the facilitating myself. Our support group leaders are from all walks of life and from across Australia, however the one thing we all have in common is TN. Our leaders presented many ways to hold a meeting, which worked for everyone. We discussed our part to play within the association’s framework and the best ways to help each other and our members. It was a successful meeting because we all collaborated with each other and got to know each other in a relaxed atmosphere. I’m very proud of all the support group leaders who give so much to help other people living with TN.

Support from Website

It has been my privilege to provide support for 11 new members that have asked to be contacted, via our website. I have provided them with links to our website, for articles that can support them. I’ve given them Doctors names and phone numbers. I’ve shown them how to find things on our webpage.

Once again, I’ve listened to their brave journeys with TN and provided a safe environment for them to talk and ask questions. It breaks my heart listening to their stories.

Volunteer Workshop

The Workshop for our committee and support group leaders is organised. Many thanks to Lyn Donnelly for her help and the countless hours of absolute skill. I believe the agenda for the Melbourne trip is finished.

A special thanks to Peter Gough for organizing our arrival, departure and transportation while we are in Melbourne.

Webinar

Our first webinar for this year was held in August. The webinar was a terrific success with Assoc. Prof. Liam Caffrey chairing and Dr. Karen McCloy presenting and answering questions from the audience as well as questions from our members. Dr. McCloy is a wonderful presenter. She can fit a lot of education in, in a small amount of time. We are planning to hold a lot more webinars in the near future. Watch this space.

Instagram-Trigeminal Neuralgia Association Australia is on Instagram.

Awareness event

Our new Instagram account continues to gain momentum. Lyn is doing a great job taking care of our Instagram account. Lyn has many projects in the process at the moment. I will keep everyone posted.

Our Association has a lot of good things happening soon-I’m excited.

On A Personal Note:

It’s a beautiful time of the year…

  1. Flowers are blooming.
  2. Baby birds being born.
  3. The smell of new blooms.
  4. The sound of birds singing.
  5. No wind.
  6. No cold weather to worry our trigeminal nerve.
  7. The smell of a spring day.
  8. The first cup of coffee on a beautiful spring day.
  9. The sun’s rays.
  10. Sunrises on a spring day.

ā€œWith hopeā€

Kim O’Donnell

Lockyer Valley/Toowoomba 0402 982 118

 

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President’s Reflections – Aug 2023

My monthly President’s Reflections always give me time to appreciate everything we achieve in support of our community.

National Support Line

During the past month, I have accumulated 343.94 minutes of support time on the National Support Help Line for people living with TN.

Support from Website

It has been my privilege to provide support for 6 new members that asked to be contacted, via our website. I have provided them with links to our website, for articles that can support them. I’ve listened to their journeys with TN and provided a safe environment for them to talk and ask questions. Ā 

Once again, the more I learn-there are no two people the same with Trigeminal Neuralgia. We are all different in pain, diagnosis, medication etc.

Volunteer Workshop

The Workshop for our committee and support group leaders is just about organised. It will be held the morning after our charity dance. Everyone is excited about this workshop. Our committee is excited to meet each other and share ideas about the best way to help people living with TN. Our committee and support group leaders haven’t been able to meet since 2019.

Webinar

Our first webinar for this year will be held at the end of August.

Dr. Karen McCloy will be presenting the workshop. Karen is a Fellow of the American Academy of Craniofacial Pain, and also a Diplomat of the American Board of Orofacial Pain. Karen has her Masters Degree in facial pain and sleep and is currently enrolled to do her PHD at the University of Qld on Facial Pain.

This month has been busy; however we are making leaps and bounds in the service to our members with additions to the website and Webinars being planned.

On a personal note – Trip to the Dentist

I had a trip to my dentist twice in two weeks. My dentist has always been a little bit wary of treating my teeth because of the trigeminal neuralgia pain. He saw me at my worst when my TN reached an unbearable flare up which lasted for weeks. He was determined to treat me when I had no pain, so I was able to work out the triggers for my TN. Having worked out my triggers since the onset of my TN, and being pain free for a couple of weeks, I thought it was time to see him again as I knew there was an awful lot of work to be done.

He decided to do my work in two separate appointments to make sure that my TN wouldn’t flare up. With the first treatment over and done with and no flare ups, he set my appointment for exactly one week after. I had the remaining teeth treated and was still scared of my TN reacting to the stimuli. No flare ups and beautiful teeth, I managed to smile again. Please see link for Dr. Karen McCloy dentist, who will be presenting a webinar for Trigeminal Neuralgia Association Australia in August webinar – Trigeminal Neuralgia Association Australia (tnaaustralia.org.au)

Low Level Light Therapy-A personal journey

I have now completed my low level light therapy sessions and I have been pain free for four weeks. I had to restart the treatment plan after having a nasty fall down a flight of brick stairs which kick started a flare up of my TN pain. I must add, my pain had disappeared after the second, initial treatment of LLLT.

Starting the treatment again was an act of faith that I leapt at if it meant no more pain. This is a remarkable outcome of which I’m truly grateful. I have added the link to give more information for anyone that is interested.

low level light therapy – Trigeminal Neuralgia Association Australia (tnaaustralia.org.au)

Our Association is about working hard to provide a service to our members. It’s about support, support to our members, support for each other, support for our SGL’s and support for the carers of people suffering from Trigeminal Neuralgia. It’s about education, collaboration, and service.

With hope

~Kim~

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President’s Reflections – Jul 2023

What a month it has been with a great deal of work happening behind the scenes

National Support Line

Since setting up our National Support Line earlier this year I have been able to help so many people living with trigeminal neuralgia.Ā Ā  During the past month I have accumulated 274.95 phone minutes of support for people living with TN. Ā Ā You don’t need to be aĀ  member of our association to access this service, however I encourage people living with TN and their carers, to consider becoming members and having access to our advocacy.

Phone: 0402 982 118

Support from Website

Since becoming President, I have contacted 17 people that have asked for support through our website contact page

Once again, the more I learn about trigeminal neuralgia, I understand that each person has individual needs when living with Trigeminal Neuralgia. We are all different in pain, diagnosis, medication etc.

Dance Show in Melbourne

Lyn Donnelly and I have been hard at work organising our Committee Members and Support Group Leaders to attend a dance show in Melbourne on Oct 13th with the proceeds of the show going to TNAA. If anyone is interested in attending the dance show please contact Lyn Donnelly or myself butĀ  we will be advertising the details in early August and tickets will be available on the Eventbrite platform

Volunteer Workshop

The dance show provides us an opportunity for our volunteers to come together for a Volunteer Workshop the morning after the show. Our volunteers haven’t been able to meet since 2019, this is a perfect opportunity to meet everyone and share ideas. Everyone is excited about this opportunity.

Our Melbourne Support Group is back up and running with our volunteers doing an amazing job. I was able to connect Brenda Young with Alan Collard and Vanessa Wood. Brenda Young is now the Support Group Leader for Melbourne with the help of Alan Collard and Vanessa Wood will be taking the minutes of the group and had them to me in the appropriate time frame. Thank you to everyone involved. Your time is to be commended.

Our Association is about working hard to provide a service to our members. It’s about support, support to our members, support for each other, support for our SGL’s and support for the carers of people suffering from Trigeminal Neuralgia. It’s about education, collaboration, and service.

ā€œIf we have hope, we have everything.ā€

I look forward to working with and providing help and Hope to so many more.

Watch this space.

~Kim~

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President’s Reflections – Jun 2023

I can’t believe that two months have already passed. It has been extremely busy once again. I have been trying to gain an insight as to what my committee think is important and what isn’t. Their input is paramount to me as we move forward together, as an organization.

I have been providing support for members via phone, email, and Zoom Support Group Meetings. I also have been providing ongoing support for many members. This is such a rewarding experience that I thrive on and to become my best self.

My personal growth has been tremendous.Ā  As I speak to more and more people, I learn that there are no two people the same with Trigeminal Neuralgia. We are all different in pain, diagnosis, medication etc.

Being President to our small organization is certainly not about the glory. It’s about working hard to provide a service to our members. It’s about support, support to our members, support for each other, support for our SGL’s and support for the carers of people suffering from Trigeminal Neuralgia. It’s about education, collaboration, and service.

On a personal note, we have just found out we are to become Great Grandparents. Such exciting news, we can’t wait to meet the newest addition to our crazy family. He/she will be surrounded by love and cherished forever more.

The news was so exciting I managed to fall down a flight of brick stairs, happy to report that no broken bones were had. However, an awful lot of bruises and a black eye were some of my wounds. I’m happy to report that I’ve made a full recovery and am fighting fit again.

I have enjoyed the past month, even though it has flown by. I sincerely hope that I have touched the people’s lives that I have spoken with, as much as they have touched mine.

ā€œIf we have hope, we have everything.ā€
I look forward to working with and providing help and Hope to so many more.
Watch this space.

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President’s Reflections – May 2023Ā  Ā 

The last month since being elected as President has been extreme, to say the least. I’m amazed at how much work there is to be done. I’m also amazed at how much work others do to help our organisation. It’s been a little bit frantic and sometimes overwhelming however, it’s been rewarding. I have learnt to self-manage rather swiftly whilst maintaining a balance between family commitments and maintaining a work relationship between the two passions in my life. Family and Trigeminal Neuralgia with a lot of self-care along the way.Ā 

I’m also excited to say that I undertook a rather documented role with my Droctor.Ā  Ā I am receiving a treatment called Low level Light Therapy, which hasn’t been documented for Trigeminal Neuralgia and so I became the specimen in my Dr’s. journey, and mine I might add.Ā 

Ā I can say that after two treatments of LLLT I am pain free. Something I never thought was possible however, clinging tightly onto HOPE, I appear to be getting relief from my pain.

This is something that my Doctor and I embarked upon, each making documented journal entries along the way.Ā 

This may be something that we’ve touched upon that others don’t know yet. This has been one of the most rewarding months. This illness has made me humble; it’s shown me what IS important in life. My family deserves a medal for being by my side every step of the way.Ā 

ā€œIf we have hope, we have everything.ā€Ā 

I look forward to working with and providing help and Hope to so many more.Ā 

Watch this space.Ā 

~Kim~Ā 

further information on low light therapy can be found here