Advocacy – Video Style
I’m off and running for 2021. Considering I was about to dump advocacy all together, I am pleasantly surprised by the idea to up my [...]
I’m off and running for 2021. Considering I was about to dump advocacy all together, I am pleasantly surprised by the idea to up my [...]
In November this year, I was invited to present my pain experience to a group of 40 GP's. The topic was: An Approach to Chronic Non-Cancer Pain and the workshop was facilitated by Dr Paul Grinzi for Murray City Country Coast GP Training. Where does one start when asked to present to 40 pain interested GP's in 20 minutes? There's a great emoji to illustrate the look on my face when I ponder this question. You can well imagine. As an 'expert' in my 'field' 20 minutes to describe 13 years of living with chronic pain of which 4.5 years were spent lost in a forest is still a tough gig. However, this was a presentation to medical professionals. And they know everything, right? .... I've decided to make this video a paid resource. All proceeds go towards funding this website and PainTrain – My Health Summary. What do I talk about in my video? — O:43 My story — 2:50 Investigating pain, research & treatment — 4:26 Diagnosis — 5:55 Advocacy — 7:45 The experience of pain — 8:27 Medication — 9:35 Characteristics of Pain — 10:55 Planning life with chronic pain — 12:09 Pain management — 13:50 PainTrain
I’m sure you’ll all agree my advocacy for chronic pain has been extensive in my 13-year lived experience. I’ve learned a lot about who to trust, who I should collaborate with and [...]
(Excerpt from Neos Kosmos feature story, Chronic pain: the treacherous disease that steals the lives of thousands, MAΡΙΑ ΚΑΜΠΥΛH 25 September 2019) Η συγκλονιστική συνέντευξη – κατάθεση ψυχής της ομογενούς Σούλας Μανταλβάνου, που [...]
I'm finding it draining to advocate and blog my experiences. But also, I don't feel my voice is as necessary anymore. I want to be known for my creativity and where it aligned with chronic pain to influence behaviour change – specifically the structure of appointments.
I'll deem my efforts a success. I managed. I learned a bundle. I made something of the chronic pain experience. And I believe I provided some insight. I arrived at Yarra Valley Lodge on Thursday night and left Sunday early morning to manage the presentation, question time and a short attendance at the dinner on Saturday evening. So that's 3 night's sleep (and one nap Saturday afternoon) to get the focus I needed, and so I could appear in a way that I felt reflected my most Soula self. The presentation (below) took weeeeeeeeks to put together! Something that would have taken me a few short days previously. That might sound a lot of sacrifice to many of you but with this approach, my pain levels remained low (if not off) and on my return to Queenscliff, I could resume my part-time work and the week ahead as per normal. It worked, I'm pacing up! I do have a niggle though. We're not learning fast enough. We're not listening hard enough. I left disappointed I hadn't achieved enough. My presentation I wasn't able to film during the conference for obvious reasons but I have put together the graphic presentation with my voice over. WARNING: This presentation contains calls for a new approach to the management of chronic pain. It calls for bundles of learning for both professional and patient as well as sacrifice and 100% commitment. It's a little boring and most disheartening for those on the search for a quick fix. In this presentation: 0:28 Outline 0:43 About Soula 0:58 The accident 1:44 Chronic pain treatment & investigations 2:19 The peripheral stimulation implant 2:36 Diagnosis 3:00 Quality of life — More treatment 3:27 Communicating Pain 3:50 What is our understanding of Pain? 4:50 Resources for pain — pudendalnerve.com.au — The Hurting Strings Documentary — My book Art & Chronic Pain 7:14 Changing our ways — New definitions 7:48 John Quintner — the third space — pain is like love 9:21 Explain Pain — Prof Lorimer Moseley / David Butler — What should we know about pain? — Tame the Beast 10:40 Changing our behaviour — Protectometer — PainTrain – My Health Summary 11:20 Example management — (how I managed the talk) 11:28 PainTrain examples — first appointment healthcare scenario — postoperative healthcare scenario — follow up specialist appointment scenario 15:28 Conquering pain management
(Article from the RACGP website) Neelima Choahan 26/07/2018 11:36:34 AM Chronic pain affects one in five Australians. newsGP spoke with a patient and a GP about some of the best ways to tackle the situation. [...]
I’m an event in the spotlight. GP’s, I hope to see you there! (Article from RACGP June newsletter) Events in the spotlight GPADD18 Conference: Saturday and Sunday 4–5 August 2018 The RACGP Victoria [...]
(Just quickly, I'd like to take this opportunity to say PainTrain – My Health Summary, Theo and I are so proud to have contributed to this year's Ride for Pain and the #painrevolution. I [...]
March 1, 2007 my life changed in a massive way. I’m not one for getting tense about anniversaries – it’s all too emotional and I feel it holds me back allowing pain [...]