Note: Time stamps for the chapter episodes are based on the full episode recording.
Robbie Frawley
Welcome to chapter 2. In this chapter Trevor describes the turning point when he began to regain his life.
Trevor Barker 23:19
I was starting to think where to from here, discovered I couldn't get into the nursing home, spoke to a friend who told me about a pain management programme that he had been to. Yep. And he, he was in far worse stack than what I was he he he was really in a bad way. And he gone to this programme and found that it helped him Yeah. So I started to sit to look at doing a taking a different approach. And I referred the referral to the pain management programme at Albury Wodonga and was accepted in oh wouldn't did my intake interview so you give You put your referral in the new few months later, you get called up to have an intake assessment. And that was a lengthy four hour process where you get to speak to a physio, occupational therapists, psychologists, practice nurse doctor, get all the information together. And in that process, I started to think this, this is not for me, I can't do anything, I can't manage this. So we're getting me to move and walk and Ben and stuff that I couldn't do. I mean, think about urban lying down for 20 years and couldn't do anything without being in extreme pain. And so I was starting to question, my ability to make any change and wondering whether this programme could help me. And at that point, the, the occupational therapist said to me, Look, I want you to hold your hands out at shoulder height and just kept them up. And when you can't hold them up any longer, put them down. So I, I had a wry smile on my face and thought he would go. And so hold them up. And 10 minutes later, he looks at his watch, he says, Trevor, you've broken all the land speed records are meant to keep them up here here until you drop, but you're not even breaking into a sweat. So let's move on to the next thing. And it's an interesting example of what happened in my head at that point, and, and what the importance of context is. So for someone that just couldn't move at all, how is it that he can hold his arms up and not drop them? Well, the thing is, I play the flute, and I played it for 40 years. And so holding my arms up is just normal. And what went on in my head at that point was a little light went on, and said, Oh, this is interesting. If you use your body, it's shows that it can be a bit strong. Whereas everything else was seen through the lens of I can't do this, I can't do that. I can't do this. I can't do that. And yet there was this one thing that I could do. So
I ended up going into the programme. And when you do your assessment, they say would you like to go on a short waitlist, or all the normal waitlist and I know I was unemployed or living at home on my own. I said, the Elgin salt waitlist. So did the assessment on the Wednesday. On the Friday, they rang me up and said be here by 12 o'clock on Sunday. So bang, I was into the course. Now went into the course thinking this is a whole lot of rubbish. And I was quite sceptical. And you know, I mean, I tried everything else. But I also went with with the attitude. Well, you given what the doctors had asked you to do the very best shot possible on her and put you in more pain than ever, and less function. So I might as well give what this mobs asking me to do a red hot go and see what happens. Yep. And that was pretty much the turning point. Because the programme is not just about pain education. And it is based on really good evidence that take the material that they use from the best people in the world. And the most up to date understanding of what's best practice. But it's not just talking about it. So you get up in the morning, you have breakfast, you with a group of C stay there, you stay there to live in programme for a week. Okay. And so you start out meeting and being with people who have similar hiring experience, then you go to the facility from we where the accommodation is, and the first thing you do is a stretch. So we were stretching for about 10 minutes, everything that can bend and stretch is stretched. And then you go for a walk. Yeah. And I started being able to walk you know a kilometre in a lot of pain. But each day we do this and you do a little bit more each day and I record how far you go and what your time is gently over a period of three weeks you're increasing stuff. So it's not just saying to some When all you know, moving is good for you, motion is lotion, it's about doing and experiencing. So that was the, my introduction to the programme was, you know, starting to do things quite differently.
Robbie Frawley 30:13
And you're in quite a supportive environment by leaving there. So you can't kind of tap out because they're going to be saying, Come on, Trevor, let's go. We're going for this walk.
Trevor Barker 30:22
Yeah, yeah, they work with you quite well. And so, you know, we're learning about mindfulness, we're learning about meditation, we're learning about how an oversensitive pines system can be retrained. And it's not just learning about it in your head. It's doing it Yeah. And as you do it. So over the three weeks, that I was in the programme, or came off my opioid medication, and my goal was to be able to come off one medication, reduce it, and I discovered that while I was reducing it, and increasing different things, that my pain was actually coming down. And quite, I was quite surprised about that. And then I was taking this medication, and it really wasn't doing a whole lot, because I was still in pain. But it was a safety net. Yeah. But we pulled that away, took it away and increased other things.
Robbie Frawley 31:22
And then when you say other things, you mean movement?
Trevor Barker 31:25
movement, mindfulness, retraining the pain system, so calming it down dealing with stress, because there is a direct relationship between the amount of stress and that you have in your life, and the intensity of your pain. Okay, so if you're able to turn down and dial down stress, then you're also turning down and dialling down home.
Robbie Frawley 31:52
And what was the mode of turning down the stress that they taught you or that worked for you?
Trevor Barker 31:58
Well, there are a few things that worked for me, the first thing was just really understanding that pain doesn't have a direct relationship with tissue damage, yes, that you can have pain. And particularly with chronic pain, you're gonna have intense pain, and no tissue damage, the tissue damage is actually healed. It's the nervous system, that's an age that's overactive. That that is firing off still trying to protect you still trying to protect me. And that when I understand that, that I'm safe to move that this is good for me. And I can have friends and fun and laughter and all of that as a way of putting to one side stress and danger, yay. And increasing safety. And then that tips the balance and almost gives a positive outlook to life. And we're what ended up happening after doing the programme left Victoria and went to Perth three weeks, my daughter lives over there. I spent three weeks with with her and her family doing lots of walking lots of family activities, not being isolated, but being with family that really made a big difference added to the three weeks of the programme. So put all that stuff together and started to have more confidence in being able to manage pain myself, rather than rely on a medical approach which had completely failed me. Yeah.
Robbie Frawley 33:55
So it sounds like they were just able to give you confidence that that the pain you're experiencing was almost not justified and that you were actually you were safe to go for this walk and you you didn't need to be fearful that you're going to be hurting yourself. Is that fair to say? Oh
Trevor Barker 34:15
yeah, it's it's pretty accurate. Um, pain is always real. And you know, we're still in a lot of a lot of pain at times, you know, as instilling time after during the course. However, it was not tissue damage. So you know, I had sore calves for example walking it wasn't the pain wasn't indicating that my tenants had ripped off the mine and whereas prior I was you know, really worried about and catastrophizing and, and seeing myself as being disabled and you know, because of the pain yeah
Robbie Frawley 35:00
Can I ask another question you touched on? They taught you about mindfulness? Can you again talk to like, what did they actually? Because people talk about mindfulness a lot and how beneficial it is, what did that actually mean for you? What did they teach you at that time? And what? What did that look like for you,
Trevor Barker 35:18
that involves just slowing down. And being with what is now, you know, we're sitting in my dining room, which is looking like a rainforest here, environment here. And I can come out here after work, grab a cup of coffee, sit down with my wonderful wife. Now, Kai, tell a bit more of that story later. But just be with and accept how things are now. Rather than fight them, and create more stress. So accepting how things are, and not having that internal battles. Even
Robbie Frawley 36:08
if you're feeling some pain, rather than trying to fight the fact you had pain just going, okay, my back's sore. But I'm here, surrounded by all these plants,
Trevor Barker 36:20
and not worrying about it. You know, I've, I've just started a new job. I'm doing stuff that 10 years ago, would be seen as catastrophic to someone with low back pain, yeah. And Danger, danger, danger. And yet, you know, I'm sitting in a, you know, comfortable chair here, not feeling any pain. And people would say, Well, bad posture, sitting for a long period of time. All the stuff that you do at work is, you know, the reason for your pain. Well, that's not Yeah. And being aware of that, and just sitting with it, not fighting. To me, mindfulness is, is just taking time out to be in a different place, that it's similar to meditation. But it's, it's more just creating a new normal way, you're not in that internal battle all the time, just accepting.
Robbie Frawley 37:35
The reason I'm asking that is that point, you've been in excruciating pain on all sorts of painkillers and doing less and less for 20 years. And then in the space of three weeks, doing this course where I mean, it sounds like you're going for short walks, though. How many other people were on the course with
Trevor Barker 37:53
you a little bit six on the course. And it was from, you know, eight in the morning till six at night. There was more, there was lots lots of aerobic stuff. We were doing water, warm water, Exercise and Movement. Yes. We were doing a bit of crossing the midline above shoulder height, which is a particular movement that is a brain retraining movement,
Robbie Frawley 38:22
So when you say What do you mean? Like so just taking your left hand?
Trevor Barker 38:25
Yes, and lifting it up over the shoulder and across the right side, over your head, over your head and to the other side, okay, and then putting it down and doing the right, the finger up over the head? And what does that do? What that does, is very interesting that Dave Butler taught me this in or explained it in 2008, when pain revolution came to Aubrey and he spoke about this they researchers discovered that people with chronic low back pain when they have a flare up that the whole brain is involved and so it's flashing light red Christmas tree lights just going off. And rather than it being just one part of the brain, it just starts one part of the brain and just cascades cross very quickly in the whole brains going off which is involved in the whole body which sort of explains why when I went for a massage therapists were asked me how it was I'd say my nose is okay today because don't bother asking him about the rest of my body. It's just in pain. And and so when this when your brains going off like this, and just flashing like a Christmas tree. What they discovered was crossing the midline above shoulder height. sabotage the brains of ability to recruit itself and golf that way. And when Dave Butler explained this to me, I thought, wow, the physio therapist that at the time programme was getting us to walk sideways across the pool while we did this movement up, up above our heads both ways. Yeah. And also you goose, what are you doing? And he didn't explain why he did that.
Robbie Frawley 40:24
Okay, but there's a lot of science behind it.
Trevor Barker 40:27
Yes. And it makes a difference. And, wow, there's one thing everybody can do every day, just do it a few times a day, whenever you're having a cup of tea, or whatever you do. And you're tricking yourself.
Robbie Frawley 40:42
Okay. So there were a whole lot of I mean, it's just, it's quite amazing. Because to listen to it, it sounds like after such a sustained period, where you were actively looking for answers and seeing all these specialists and doing all this, these things and taking all these meds and getting worse. And then in relatively, incredibly short time period of doing what seems really kind of quite simple and basic, it sounds like was a real turning point. It
Trevor Barker 41:11
was a real turning point. And it was the start of being on a different road. The road that I'd been on for 20 years was looking to the doctors for an answer. Yep. And getting him to fix it. The new role was on was understanding that pain was more than just issues with tissues that involve psychological and social aspects. Yes. And those things I could do something about for myself. Yep. And as I did that, the amount of stress and pain in my life went down. I've got more confidence, and then I began to be able to build on that to do more and more.
Robbie Frawley 41:51
Fantastic. Did it just continue? Like, how long ago now? Is that that you entered that Aubrey pain clinic?
Trevor Barker 42:00
That was in September, October 2016. Okay. And it's now 2021. Yeah, so five years, five years? Yep. Yep, five years ago,
Robbie Frawley 42:10
What's happened in that subsequent five years?
Trevor Barker 42:12
Well, we went over to Perth for three weeks, had a lovely time as a daughter and her family. And at that stage, I was walking, you know, eight to 10 k's a day, it's a quick increase. And doing a lovely walk from her place in South Perth down to the Swan River along the river and up past the zoo. And you know, we're talking. See, I'm in Canada type. And it's flat. There's no hills. Yeah. But in South Perth is downhill and uphill. And so I'm doing all this and having great time with grandkids, whereas prior to that I'd been quite isolated, really not very connected with family for all of all of the reasons of breaking down a marriage. And so what's happened since then or did that. And I've started to have a different outlook on life, having more friends, getting involved in things that have meaning for me. And then after after starting to go down a different, different road. I heard about pain revolution. I'm not quite sure how it or came to hear about them. But I heard that we're coming to Albury, which is not too far from where I live and what's pain revolution? Yep. So pain revolution is a group of they have a real passion for educating rural Australians about pain science and what people like me can do to have a different life. And so I offered I've got a bit of expertise in community engagement. So I contacted them and I said, Well, I'd be happy to help get the word out around the Audrey area. Would you like a hand with that? Nice idea. That'd be great. So I hit the pavement and walked all or around Albury Wodonga handing out brochures contacting community groups and we filled the venue we had over 160 people for to two events. And I later heard that that was more people than turned up in Sydney and Canberra. So we had a pretty good impact. And I met a lot of you Joe, we're pretty well. And of course I got to meet you know, Tasha Stanton and Laura Mosley and David Butler and and who are these people? Are these people really are The leading lights in my view in the world when it comes to understanding pain, chronic pain, and their pain researchers, scientists, physio therapist, and their Australian have right here in our backyard treasures from England I believe. But they've studied and worked together at University of South Australia. And they have a very unique way of understanding the complexity of all of this and words that you know, the biggest word over uses catastrophizing and, you know, they go on with these crappy words and, and, you know, explain to clinicians just how the nervous system works and how we can work with that and to create change. Yes, that makes a difference to people like myself, well, they've got the unique ability of being able to understand that complexity, and talk straight talk, okay, which is small words, and easy to understand, which is not what I'm into. And explain it in ways that can be practically applied, like for example, crossing the midline above shoulder height, well, who the thought and I talked about that all the time and in my work now. So that what they do at Pine revolution is the do a couple of things that they have a charity bike ride every 12 months. And when they came to Aubrey, I got to meet them. And
after the bike ride, lorrimer Mosley said to me, I want to talk to you. And he offered me a job, which was fantastic. So here I am, halfway through 2018, starting to work for pine revolution and starting to look ahead to Tasmania. What was Tasmania Tasmania was in March 2019. This is another tour, okay? It's 10 days in Tasmania, going around talking holding community events for clinicians, and also the general public, where they talk about pain science and how, what we can do to help treat ourselves and by understanding and changing our approach. Now, that was a very sick, I'm talking about that this because it was a very significant tour. And I've got to sit alongside Dr. Butler and I was a sponge, I was taking everything, you know, I was learning all about this stuff. And at the same time, sharing my story and talking at some of these events, and engaging with the community with community engagement work. So we did the tour. And it was there's a funny story I'd like to tell. We went to there were three community events on the same day in Hobart at the end of the tour. And Glenorchy was one of those events and, and Dave Butler and myself are talking along with a couple of other people. And you can imagine we're in an aged care centre. So, you know, this is interesting, I was thinking about getting into one of those joints, you know, a couple of years earlier than that. And we're upstairs and there's about 80 people in the room, and 60 of them were it plus in a wheelchairs and sitting down and and, and Dave Butler starts talking about the pharmacy cabinet in our brain and talking about what hormones we have what chemicals we can release to help treat pain and soften iron. And he talks about dopamine and endorphins and other things gain big words. And he said to the group, what do you think? gets this gets all those happy hormones going and he's waving his hands around. His now answer Sosa's yells out, puts his hands over his head. He says, Well, what about six? And all of a sudden, I'm sitting there trying to be prim and proper or the straight facts, thinking to myself, I haven't had much of that the last few years. And all of a sudden the old folks start giggling and laughing and not nodding their heads, you know, what's, what's going on? And I started thinking because I'd been so traumatised and distressed from from really bad marriage, that I'd sworn off relationship ever again. Just in order to protect myself And, you know, Dave was unaware of what was going on in my head. The short story is that I met Kai in May. So it was only eight weeks between the tour and when Kai and I met,
Robbie Frawley 50:20
and you credit Dave's comments with contributing...?
Trevor Barker 50:22
Absolutely credit (them). They've been here to our house and after we're married. So that was my in October 2019 Kay and I were married.
Robbie Frawley 50:39
Congratulations
Trevor Barker 50:42
That was early October and, and Dave and Jules came across from South Australia to do an explained pine course in Albury, a couple of weeks after the marriage, so we had them here for lunch. And I went off and did the explained pain course as well. So you, when you think about how this stuff has changed my life, it's changed it, you know, amazing way. So I'm now in a relationship with a very loving, generous woman who Kai and I do life together, we support each other. We both got our challenges, physical stuff that's going on. But together, we're a really good time. And we enjoy life. And we get through what life throws at us together. And it's really good.
Robbie Frawley 51:40
Yeah, absolutely. And it sounds like I mean, when you said your response, just just travelling on this tour. So you I guess you've just been picking up all of this, your education around pain science, and what was going on the fact that you didn't need to be catastrophizing, as you sort of said earlier, and just your knowledge of pain science and how you could get better, I guess, was just growing and growing.
Trevor Barker 52:07
Yeah, yeah. I mean, I was learning from the best people in the world. And they were listening to me, as always talking about stuff you're experiencing, that we're picking up the phone and saying, We Trevor, can we have a chat about this? Yes. And so they're learning from me, I'm learning from them. Yeah. And it's quite affirming, and encouraging to have that sort of relationship going on. And to be able to understand and have confidence in the fact that making change is where it's at. Yes. So we stick with the narrow little road that we're on, then we're going to, that's what we're going to experience and, and the thing with chronic pain is that it's worse than that. Because the longer it goes on, the worse it gets. So you might say have a five out of 10, on average pain experience, and you don't make any change for two years later, it's five out of 10, it's not relevant anymore, it's now six out of 10. And then another couple of years, it's a seven out of 10. And it just creeps up on you and gets worse and worse. So it is really important to make change. And and see that we can slowly dial down what's going on. Yeah.
Robbie Frawley
That's the end of chapter 2. In chapter 3 Trevor shares his key learnings.