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Support Group Event – Melbourne

Sometimes it is hard to convince people who are newly diagnosed with trigeminal neuralgia, to attend a support group event or meeting.

They may have misgivings that the information they receive has no value, after extensively researching Dr Google.

They may feel self conscious speaking in front of others.  They may feel so isolated and hopeless that the effort of attending a support group is just too intimidating.

Other reasons may be there isn’t  a support group near by, or they are in too much pain to attend, or they really can’t speak because of the pain, or that they worry nobody will believe how much devastation has been endured since the diagnosis.

Well we are delighted to highlight the the Melbourne Support Group Meeting event held on August 12th.

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Jeremy Russell (neurosurgeon) who is a member of our Medical Advisory Board kindly offered his time to make a presentation at the meeting.  We advertised the meeting on social media – Facebook and Instagram, sent out an email to all Victorian members, highlighted the event on our website calendar and on our monthly digital newsletter ENEWS.

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The result was the meeting attracted 23 attendees, 10 of whom were new to the association.  One couple travelled from Bendigo which is a 2 hour car ride each way.

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Our volunteers have recently rebooted the Group after our wonderful leader Emily Lovell had to step away after many years volunteering.  Brenda Young and Alan Collard  have taken the reigns.  Both have lived extraordinary lives and have plenty of stories to tell, pre trigeminal neuralgia and of course post trigeminal neuralgia.  We cannot fulfill our vision without volunteers, we are honoured to have this team working hard to raise awareness, provide support, education and advocacy for the benefit of our community 🩵

We welcome our new members and we hope you received valuable information and most importantly hope, from attending the meeting.  We look forward to walking alongside you on your journey.

Many of the Committee Members and other Support Group Leaders from QLD, NSW and SA will be attending the next meeting in October, so add October 14th to your calendars and come along to meet us.

Victoria Health have published this article re the benefits of attending a support group

Benefits of Support Groups

 

 

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Melbourne Support Group Meeting – New Beginnings

The Melbourne support group meeting has been on ice since our wonderful Emelye Lovell stepped back from volunteering.

We have been actively looking for a volunteer to step forward to take on the role of face to face Support Group Leader for Melbourne.

We are delighted that Brenda Young has agreed to take over heading the meeting with support from Allan Collard.

I am hopeful that the Group will support Brenda with minute taking etc and that someone with computer skills will volunteer to assist her with the preparation of these minutes for issue to “head office” for inclusion in the regular Newsletters.

One way minutes can be collated easily, is if each member writes down their updates, perhaps by email or phone message so the minutes can be easily collated.  Perhaps we can set up a webcam to record the meeting and the minutes can be easily collated.

Do have any technically skilled people who can assist Brenda with this?

The Melbourne face to face meetings are so important to our community – please help us ensure they are successful.

We will be looking to the members for some practical & moral support for Brenda in the Convenor role, and that she is prepared “to give it a go” in the hope that the Group can continue to function on an ongoing basis.

Our Association has been in continuous service for trigeminal neuralgia sufferers for 20 years, let us pull together to ensure we continue to deliver support to our Melbourne community.

Please use our contact form to offer assistance or suggestions.

The next meeting will be held on June 10th

 

 

 

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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

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