There's no way I could have set up a video resource section of people who have most impacted my chronic pain journey without including Dr Susie Gronski. That reason is because I love that Dr Susie's practice is totally focused on helping males with pelvic issues. I'm so in support of that because from – what I hear, it's even harder to find a specialist who can help a pelvis owner with a penis than it is to find a specialist who can help a pelvis owner with a clitoris. Dr Susie and I also collaborate with PainTrain – My Health Summary. Dr Susie is part of the PainTrain Advisory group and provides much-needed practitioner insight into PainTrain's development. If you're on my PainTrain then you would have come across Dr Susie's input specifically in the customisable questionnaire section (thanks Dr Susie!). Another amazing thing about Dr Susie is her communication and her abundant modern-day resources and approach to helping people. As you know, I'm a lover of communication. Another thing you'll know is how misdiagnosed and information deprived I was when I first experienced pain. Had I had access to something like drsusieg.com in my first 4.5 years, things may have been very different for me. You are awe-inspiring Dr Susie, I just adore you! You guys are going to love this chat. There is help out there... help and hope!
Alexander Technique is a very special kind of physiotherapy. Well, it's kind of not physiotherapy but rather a guiding formula for your body and mind. When I was in my first few years of chronic pain, I sought to set up my pain management team on foot as I quickly realised the car was a terrible trauma for me. I found Knowbody Physiotherapy online and discovered that the owner, Maddy Lock was in East Melbourne which was the suburb just next to mine. Crossing one of Melbourne's busiest roads (and tram tracks) and into the peaceful streets of East Melbourne with its low rise homes and divine parks, I walked gently to my appointment. Theo would pick me up by car as it was usually difficult to manage the appointment as well as walk back home. I learned so much from Maddy. I was in the thick of it when I met her – I needed fine-tuning and Alexander Technique helped me find that. I learned how to approach my daily life in a lighter, softer, gentler way and to this day I use all that I learned – like when I'm getting in and out of a car or chair, or climbing stairs or even holding a glass of water. I'm so grateful to Maddy for not only teaching me so much and persevering when I thought there was no hope but for taking the time all these years later, to chat with me and help me bring you this very special information. Alexander Technique is very impacting for anyone – you don't need to be living with a problem to learn it. It's one of those things that sits in the belly and mind and helps you get through your days. Do it!
In this video we discuss:1:29 Walking When it Hurts 2:29 Alexander Technique 7:04 On Meditation 8:42 Persistent Discomfort (chronic pain) 10:38 Don't Stop it, Swap it 13:49 Unknotting Life 20:45 Learning 28:10 Goals 30:02 Being Adaptive 31:47 Guiding Voices 35:17 Stop, adapt... but how? 39:21 Training in Acceptance 43:27 Gratitude & Light 47:26 Maddy's Impact 54:40 Your Whole 58:29 A Final Message
Here is some information about the Alexander Technique from Maddy LockA brief description of the Alexander Technique in relation to chronic pain:- The Alexander Technique is a set of skills that help you to recognise unnecessary tension in your body. This is followed by learning ways to change this. You will learn practical skills and processes that facilitate positive personal change including ways to sit stand and move with less pain. The technique is generally taught in a private lesson where the teacher guides the student with gentle guidance manually and clear verbal directions unique to each student’s needs. Online courses and workshops can be a good introduction to the technique. To attain a lasting change a course of 1 on 1 lessons is recommended for pain management. A course of 6 to 12 weeks can be the most effective way to master the skills required for this. My Profile:- I have worked as a physiotherapist in the hospital setting, in private practice and in age care. Following completing my postgraduate degree in sports medicine I sustained a repetitive injury to my left arm and left side of my neck. Following this I needed to take a different path to find relief for my chronic pain and disability I studied Pilates, Ergonomics and Occupational Rehabilitation and the three year training to be an Alexander teacher. These new skills were beneficial to my management of pain and postural challenges. I have enjoyed combining my various skills to give clients a holistic approach to pain relief and improvement in their physical potential. I offer home and worksite visits, workshops at various locations and one-on-one lessons in North Fitzroy Victoria. I am currently writing an e book and audiobook on “Walking when it hurts”. My decision to write this came from requests from participants of my workshops. Due to learning the Alexander technique I am living a very fulfilling life. I have been able to walk many Camino trails in Europe, to dance, to meditate and enjoy travel. These activities were impossible for me without learning valuable skills in moving with awareness and ease. I have a fulfilling life that is also peaceful and happy. I enjoy working with others who wish to achieve their potential by finding out what they can do to benefit themselves and others on a sustainable basis. Contact Maddy I am happy for interested followers to contact me with any questions and more information about the Alexander Technique by email: email@example.com
Neurostimulation has been key in my management of pain. It's also satisfied my wish to find a way to be as self-sufficient with my management as I possibly can be. My first stim was a peripheral stimulation unit (leads under the skin) and that was implanted in 2011. I still have this unit as a backup. In 2015 I had a sacral stim implanted but that fizzed (in my opinion) within three years. So in 2019 I had the sacral stim removed and replaced with a spinal cord neurostim. WARNING: In the video, I talk about my experience and have a few Xrays pop up to demonstrate a little detail. If you're the squeamish type you may not want to see the images – they are small, however. Read key blogs about my stim implants experiences and adventures:
- My Peripheral Stimulation implant
- Peripheral Stim messing with my bone density score
- My pain management is turning into a thesis!
- Adventures of a stim controller
- Out With the Sacral, In With the Spinal (part 1)
- Out With the Sacral, In With the Spinal (part 2)
- Out With the Sacral, In With the Spinal (part 3)
- Spinal Cord Stim Trial Day 6
A most essential chat – person (living with pain)-to-person (living with pain). As well as having a lived experience of pain in common, Deb and I also share a love for communication – Deb via media studies (film, video, etc) and myself through art and design. For two people with a great understanding of communication, our experiences navigating the chronic pain journey have been different. Having said that, the frustrations have been oh so similar! All of it is ground level information of what it's like to work through diagnosis, a life-changing situation and coming out the other side. Deb also shares her excellent resources – some previously shared on the website but some local to her New Zealand network and they are brilliant! In my chat with Deb we cover: 00:17 About Deb 1:38 People pleasing 3:45 The unknown 5:28 Work status change 5:43 Livelihood & life change 11:15 A new Approach 13:03 Communicating Pain 23:00 Hero speak 23:15 Keys in communicating pain? 24:26 Mutual Understanding 25:36 Partners 28:27 Ideas beyond pain 31:04 Pain Management 44:03 Bravery 45:00 Vulnerability 49:52 The Life Lesson 53:15 'Work' 54:19 Advocacy
Or my nervous system's fault either. Have you ever let your mind wander beyond the boundaries of chronic pain research? I can't help it, my mind flies around all over the place! Today, it's in Maroni, a village in Larnaca Cyprus. That's where my mum was born. I've been wondering alot about village life lately. And more specifically about my grandmother (Giagia) and her lifestyle in Maroni. I've visited Cyprus four times – each time without pain! I really love mum's village Maroni, it's beautiful. I always make a point of walking around the whole village when I visit so am very familiar with its nostalgic, stony, dry characteristics. I love the feeling of my feet on the ground in Maroni – not sure what that is. Perhaps a memory...
There's so much to learn in order to be able to navigate chronic pain. The psychological side of pain is huge as is the energy required to manage it! That's why we need fantastic coaches like Amy Eicher. Certainly what adds to Amy's ability to help and reach people is her own experience of being lost in the search for diagnosis and finding her own way from there. To add to that, Amy's education path is a very interesting one – one that totally validates her ability to understand and help people! Amy and I talk about all the above... and more: 00:39 Amy's Story 1:41 Pain in the Brain 3:56 From Pain to Education 7:41 Restoring Venus 12:08 The Personal Story 12:55 Pathways 13:53 Pain Management 15:52 Appointments 18:23 Working with Amy 22:05 Pain Coaching 24:27 Strategy 28:10 The Essence of Amy 32:42 Transforming Pain 33:53 Gratitude Where to find Amy restoringvenus.com Support Group On Facebook Workshop FREE LIVE WORKSHOP Tame Your Low Back Pain – are you ready to get your life back? Join Amy for her FREE 5 day live workshop and learn the complexities of persisting pain, how you can tame it and get moving again! This workshop will be held March 8th-12th 2021 11:00am CST CAN be seen on replay!Books Restoring Venus: A Journey from Chronic Pain to Possibilities amazon.com/Restoring-Venus-Journey-Chronic-Possibilities-ebook Stories of Hope amazon.com/Stories-Hope-those-want-learn-ebook/ Class for clinicians Changing the Narrative Around Pain is a 14-hour course explicitly designed to expand your current practise through an evidence-based understanding of the biological and chemical changes that occur when one is in chronic pain.
I can't really think of a better way to mark my 14 year anniversary with chronic pain than to present this wonderful (loooong) chat with my diagnosing physiotherapist, Anne-Florence Plante. I will clarify firstly that Anne-Florence's official title is not Soula's physiotherapist but rather her qualification is Senior Clinician Physiotherapist. Not only did Anne-Florence Plante diagnose me but this awe-inspiring human is the reason pudendalnerve.com.au exists. We have stayed in touch on and off over the years which has been wonderful and now, given my move to video advocacy it was only fitting that my first two chats were with Theo and Anne-Florence. Since 2011 when I first published this website, many of you have written to me to ask about the physiotherapy Anne-Florence Plante provided that not only led me out of a 4.5-year search for an explanation to the pain I was experiencing but that ended up guiding my future treatment and pain management. I'm so happy to be able to share this informative conversation. What we talk about in this chat (with lots of other detail in between): 1:05 Diagnosis 1:36 Pudendal Neuralgia 4:50 Appointment approach today 16:00 Anne-Florence's Formal training 20:05 Isolating pelvic pain 23:40 Educating people & practitioners 27:30 Navigating the journey 30:34 An explanation 36:20 Do I still have Pudendal Neuralgia 37:12 Management 43:00 Et Voila! 44:26 PainTrain – My Health Summary
You have all heard so much about Theo and how we have (and continue) to work together through chronic pain. However, you have never really heard from Theo directly nor does the chronic pain world hear or acknowledge the 'carer' anywhere near enough. I thought a chat with Theo – specific to pain management would be insightful and a great way to kick off my video 'interviews'. Although couples have various chemistries and approaches to their relationships I thought there may still be something in this chat to help others with the battle of trying to live, love and grow with the ever-present chronic pain beast! The questions I put to Theo are: — How do you describe chronic pain, Theo? — The way I see it, we both live with chronic pain. Do you want to describe how you manage living with chronic pain? — What's one of the most helpful things you've heard from a professional or found in research to help you manage being the partner of someone living with ongoing pain? — What do you think about the word 'carer'? Is it appropriate, is there a better descriptor? — Are there any good things that have come out of living with the life impact of pain? — There are many negatives but what are the toughest? — What would you do tomorrow if I woke up after taking a magic fixer potion and pain was no longer in our lives? — We're not the people we could have been. How often do you think of the 'mighta', 'coulda', 'woulda'? — It's obvious and clear that we manage well – what advice do you have for other couples/families/housemates/friends who live together or who have a very close relationship with someone who has ongoing pain — Aside from the support of our families and friends, what is the key to managing a relationship and a life when an ongoing illness is present and limiting life? You'll need to be a member to watch the video or sign in.
Everything that chronic pain had undone in the first nine years of this 14-year nightmare, Theo and I have managed to finally mend. Stitch by stitch, we made a new house, founded a new livelihood, purchased a more comfy car, made new friends, welcomed a different breed of fur child and all of this in a new (unfamiliar) town. It's a rebirth! All of this, driven by the hunt for pain management after a ball pop, drop and a bang. Or was it...?
'His most revolutionary finding was the utter lack of evidence for either axons or dendrites fusing and forming networks like those described by Golgi. He observed that, on the contrary, it seemed neurons did not need to touch to communicate. They only had to be contiguous for signals to be transmitted from one to the other. (The term “synapse”, used to describe the structure that permits a neuron to pass on its signal, would not be coined, by Charles Sherrington, until 1897.)