Living with a chronic condition means that you will have a different role with your healthcare providers than you would have if you had a short-term illness. Your role in managing your condition will be a more pro-active one where you will be involved in making decisions about many things that affect you, your healthcare management, your family, and your lifestyle.
A video library is forming on pudendalnerve.com.au! Soula's advocacy has transformed into video conversations with some of the people who have made a significant impact in her pain management and/or who have inspired Soula in some way. It's one thing for Soula to present her thoughts about these people but quite another to hear them explain their point of view. Soula presents chats with Theo Mantalvanos on being a 'carer', she reunites with her diagnosing physiotherapist Anne-Florence Plante (now working in Marsais, France) who shares her wealth of knowledge specifically on what pain is and the role of trauma. Deb Thompson – a creative kindred spirit who lives with pain gives her perspective of what it's like living with pain and communicating it. We also learn about the Alexander Technique from Maddy Lock who worked with Soula during one of Soula's toughest pain years, Amy Eicher talks about pain coaching and Soula presents a couple of videos about her daily life.
Each year, Pain Revolution and a team of passionate and dedicated cyclists hit the road in order to host free community-based pain education to both health professionals and the general public. This year they’ll be riding from Geelong through Queenscliff and straight past Soula and Theo’s gallery, Queenscliff Gallery & Workshop (QG&W), to regional Victoria. Raising funds To help with the fundraiser this year, Soula turned to kindred spirits – artists are pretty empathic creatures. The first who [...]
One thing to be sure of when it comes to pain is its ability to unite people – people that may have never met otherwise. Soula’s fundraising efforts have always included Pain Revolution. In addition to believing that Pain Revolution’s approach to sharing contemporary pain science and building capacity is crucial in how we approach pain care, Pain Revolution also believes in Soula. We all need to stick together. Together, we unite our missions, connections and resources in [...]
(Excerpt from Neos Kosmos feature story by MAΡΙΑ ΚΑΜΠΥΛH 25 September 2019) Πρόκειται για μια ψηφιακή πλατφόρμα καταγραφής του ατομικού ιστορικού των πασχόντων από χρόνιο πόνο έτσι ώστε να μην χρειάζεται κάθε φορά που επισκέπτονται τους διάφορους ειδικούς να επαναλαμβάνουν τις ίδιες πληροφορίες ξανά και ξανά κάτι που είναι τρομερά ψυχοφθόρο για τους ίδιους, όπως μας διαβεβαιώνει η Σούλα εξηγώντας μας πώς ξεκίνησε η ιδέα του Pain train. It is a digital recording platform for chronic pain sufferers' personal [...]
Chronic pain resources A summary of online and accessible initiatives and resources Purpose of this resource This resource aims to improve awareness among Primary Health Networks (PHNs) of current online and accessible chronic pain initiatives and resources relevant to primary care in Australia. The information in this resource may be used by PHNs: • To inform the implementation of chronic pain initiatives • To distribute among their networks of primary care providers and consumers PainTrain is listed [...]
Resorting to PainTrain through her spinal cord stimulation trial, Soula wanted to predominately keep her history together and to also document the information once, storing it in a safe place.
Um, actually, they aren't in competition. They are two very different online resources.
In the upcoming GPADD18 conference, Soula will draw on her communication skills as well as her 11 year patient experience and talk about chronic pain’s perception, and also present her pain management resources. Using her personal chronic pain experience and her creative skills as an artist and graphic designer, Soula created pudendalnerve.com.au where she documents her experience and collates her findings about the condition. Soula has come to realise that the key to living with ― and overcoming [...]
User Experience is a hot topic right now in the digital health world and so the PainTrain team are hot onto it. Thank you to Irith Williams who leads PainTrain through this process and also to Lissanthea Taylor for introducing us to her incredibly resourceful friend! Who better than to begin the UX process than our founder, Soula, who initially had to map out her patient journey (pictured above) before delving into a very cathartic process with sticky [...]
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Take control of your health – put yourself at the centre of your care with My Health Story.
Quicklinks
Health stories
— MHS Founder (chronic pain)
— Judy Darling (aged care & stroke)
— Flora (Fibromyalgia)
Main Menu
— Key People
— Our Story
— Advocacy
— The Hurting Strings film
— About MHS
— MHS Videos
— MHS Friends
— Research
— Privacy & T’s & C’s
— Account Deletion
— Contact
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