Robbie (Post Concussion Syndrome): Chapter 2 - Treatment, management strategies and learning about 'neuroplasticity'

Episode 4: Chapter 2 - Robbie Frawley - Treatment, management strategies and learning about 'neuroplasticity' (PCS).

In this episode I tell my story of recovering from post concussion syndrome (PCS). It took me 7 years to fully recover, but if I knew at the start everything that I know now, I believe it would have taken me only a fraction of this time and that’s why I want to share these learnings with you. I hope that they give you some hope and they help you with your own recovery.
In this chapter I talk about the treatment I received initially, useful management strategies and the important learning about neuroplasticity. 

My brilliant guest interviewer on this episode is Associate Professor Tasha Stanton. Tasha is the Osteoarthritis Research Theme Lead for IIMPACT in Health at the University of South Australia and a National Health and Medical Research Council of Australia Fellow. 

Tasha is a clinical pain neuroscientist with original training as a physiotherapist. Her research focusses on pain and she has a specific interest in pain education, osteoarthritis, low back pain, cortical body representation, somatosensation and body illusions using virtual and mediated reality. In short though, she’s one of the leading pain researchers globally, and it was ultimately through meeting Tasha and learning some lessons from her field of pain science that helped me to find the final steps back to 100%.

Full transcripts and show notes are available for each chapter on the podcast website: storiesofrecovery.buzzsprout.com

Shownotes:

• ^00:35 - Find people who can help you and get a referral. I was lucky and was referred early by my GP to Grace McKellar Trauma Rehabilitation Centre in Geelong, 
• ^03:59 - The team at Grace McKellar gave me a variety of management strategies which were important throughout my recovery. These included:
  • 'Pacing' - being aware of your limited energy supply during recovery and choosing carefully what and how you do things so that you don't run your tank empty,
  • Reducing work (until I could grade back up), 
  • Incrementally increasing & reintroducing activities (Graded re-acclimatisation). The brain and the body adapt to graded acclimatisation incredibly well,
• 14:15  If you don't feel like you are making progress, try to stand further back and look over a longer timeframe to really assess if things are heading in the right direction,
• ^17:30 - Other helpful management strategies they taught me:
  • Introducing structured mini breaks (to recharge throughout the day). Grounding myself by closing my eyes and listening to the sounds around me,
  • Breaking up tasks to do them in small bite size components and allowing time to recharge between them,
• 22:30 - Meditation has been really helpful in recovery and normal life. I like the 'calm' app but try a few and find one you like (e.g. 'headspace', 'smiling mind', balance'),
• ^24:22 - I'd highly recommend reading (or listening) to the book 'The Brain that Changes Itself - Norman Doidge). The stories in this book provided light and hope that I could get better and taught me about the concept of neuroplasticity.

^Robbie's main tips

Transcript

Note: Time stamps for the chapter episodes are based on the full episode recording.

Robbie Frawley
Welcome to chapter 2. In this chapter you'll hear about my initial treatment, useful management strategies and about neuroplasticity.

Robbie Frawley  12:30 
I went in and saw my GP and he... I was fortunate, he had some experience previously with the trauma Rehab Centre in Geelong called Grace Mckellar. I think it was Grace McKellar community outreach or community rehab centre. And so he sort of said 'oh look, this is... I feel like I've seen something like this before, it might be worthwhile you going and seeing these guys'. So he gave me a referral. And they were fantastic. I guess that's what you would call or I would call kind of best current practice in terms of concussion rehab, where you've got, or I had a team of people (treating me). 

Robbie Frawley  13:39  
So the main person, kind of the director if you like, running the show was a trauma rehabilitation physician and then there was an occupational therapist and a physio therapist and an exercise physiologist and a neuro psychologist. And effectively what they're doing is they would typically see people who have experienced car crashes and things like that. And then they would be seeing them as a team and all putting in their little bit of specialty expertise to kind of help this person recover. And they would do that in both an inpatient setting for people in hospital, but also they had an outpatient service with people like me that could come in from outside and have your appointments and then go away. And so I came in and they basically sort of ran me through a bunch of tests and that involved I think a questionnaire and cognitive tests where they would sort of read out A-7-B-12... you know, a series of numbers or letters and then ask you to repeat them back or that type of thing or get you to do some puzzle, and time you and...

Tasha Stanton  14:58  
No stress though...

Robbie Frawley  14:59  
and then kind of look at you while you're trying to work out if that was a good time or not a good time. And then physical tests like a balance board thing that you had to stand in and close your eyes, and it would move and shudder and assess where your balance was, and whether your reactions effectively were within the normal range. So lots of different tests like that and then they sit down and speak with you and talk to you about what the results were and, and what they thought and what that meant going forwards. And so they said to me 'look, this is classic post concussion syndrome', which is not something I'd ever heard of. And they said 20% of concussions don't resolve within the standard period, the symptoms persist and we can tell you that you will return to normal, we just can't tell you when. And so, then they would highlight Okay, well, in these areas, you're quite strong, or in these areas, there's quite a deficit there. And effectively, then each of the specialties would work (with you, and) give you some strategies as to how to cope in life if you like, because you're pretty limited.

Tasha Stanton  16:01  
So what sort of strategies or things did they think at that point, were really quite important for you to focus on?

Robbie Frawley  16:30  
Everything was about pacing. So everything was about a management strategy. So it was, for me at that time, I was really, really fatigued. You know, I would sort of said, I would go to work I'd push through, and then I would literally just come home and collapse. And then I would get up and do it again. And so they would sort of describe that as you're doing that and you're having a collapse, you're going too hard. And so you need to stop before you get to the point of not being able to do anything and recharge your batteries earlier, if you like and they described that in a when your brain is recovering from a concussion, effectively, its energy requirement is much greater than normal setting. So everything you're doing, if normally, for the fern analogy, if it required one muesli bar to do X task, you know, in a concussed state or recovering from a concussed state, it might take two or three muesli bars that's sort of chewing through that energy, and it's fatiguing quick, more quicker than usual.

Tasha Stanton  17:36  
It's kind of interesting, because sometimes, like fatigue is not always attributed to being you know, a symptom of something like oftentimes, we think I've just done too much versus, like really having I guess that understanding that when you've undergone something like this, actually, there are different requirements, it means that this is completely makes sense why you're so tired all the time, or like, was that grasping that fit helpful? Or did you kind of already work out that yourself? By I guess your experience is a kind of boom and bust.

Robbie Frawley  18:08  
It was helpful, it was helpful to have I think it's helpful when someone can say, Yes, I know what's wrong with you. And that's normal. And we can assist with that. It, it sort of did make sense, it did help. Because I suppose I still have this mental image in my head, which was, I think talking about it is obviously taking me back. But I had this mental image. And I would describe to people in that, you know, saying kids video game, you'll often have the, if you're a character, you have an energy bar, and so the top right hand corner, and that will slowly sort of go down, you know, either during the game or if the character is attacked by something. And I will just find that energy, but I could, in some situations, I could nearly see that energy power just dropping like if I walked into a supermarket. Wow. Like it taught me how much stimulation is in a supermarket because I could walk in kind of fully charged. And I would just, I could just see the energy, but it's draining. And I'd think I need to get out of here in the next two minutes, or I'm gonna be on the ground. And I guess I realised since that it's because everything Asuma is designed to grab your attention. Everything's fighting. Everything's designed there to fight for your attention. And in an overstimulated state. That's way too much

Tasha Stanton  19:44  
Yeah. And that is interesting to think about. Yeah, like the different areas of our environment that like they would require higher energy sources or or more energy to go into them and still be able to come out because I know what you mean. I find supermarkets exhausting. They're so bright and It's loud. And it's echoey. And it's yeah, it's it's a lot on, actually. Yeah, absolutely. So with that, the programme that you that you went through how long were you, you know, doing that outpatient programme?

Robbie Frawley  20:15  
So I was living in Warrnambool, and the outpatient centre was in Geelong, so that's about two hours away, and a half to two hours. So, and I was still trying to work. So my parents had very wisely sort of pushed me to keep working, because at times on this boom, bust cycle, it was just too much, I was constrained to become concerned about what was going on. What on earth was going on with my head because my whole system was kind of shutting down. You know, everything would start to fail, if you like, you know, I'd be getting the headaches, which at the start had been acceptable, which had become more severe and more persistent, and nausea. And I began, it was becoming increasingly sort of nauseous and unbalanced if I was not feeling right. And cognitively, I didn't feel very clear. So I feel really foggy. And like, I couldn't think and I'd be concerned about that. And so then, you know, then you're assessing to see if I am if I am I thinking, Am I with it, like

Tasha Stanton  21:25  
It's a vicious circle.

Robbie Frawley  21:26  
Oh, it's a vicious circel. And so, um, what else I don't know. So I guess you've all these symptoms have become stronger and stronger. And so I was concerned about those and are singing, and when you would stop, and you would rest that would subside. And so as I explained, I would have what was initially like a weekend of rest, and then I would kind of all subside and I'd be feeling good. And I think I'm good to go. And then I'll jump back into work. And that would sort of slowly creep back on but I wouldn't really listen to them, I'll just persist until the end of the week. And then that would be at a state with our so in inflamed and revved if you like that I was really struggling to operate in the world. And so I think at the time, I was quite concerned, and I guess, previous knowledge around concussion was, you know, if you saw an old school GP, they'd say, line a dark room until symptoms subside. So there's a little part of you that's thinking, Maybe I should just belong in a dark room until these side and I, you know, give myself enough time to lie there. And this resolve that, I guess that's probably quite an old school view. And anyway, so there was some sort of concern about wanting to do that. And my parents at the time sort of pushed me or encouraged me strongly to keep going to work in whatever form and that was probably one of the first things that the, the team at Grace Michela suggested was actually cutting work back to halftime. So I would go in, and I think initially, it might have been halftime every second day. So I suppose because their medical team and you're getting a medical certificate, and they would write that in my workplace was incredibly supportive. I was really fortunate. Not everyone's like that. And you know, so yeah, that was just really lucky. So I could do that. So that was a big thing. They sort of cut it back to half time.

Tasha Stanton  23:19  
And did you notice a difference with that, like, once he started to reduce those hours at work? Did you? Did it start to feel like you're kind of being able to make headway on some of those like exhaustion, headache, nausea type symptoms?

Robbie Frawley  23:31  
It's funny, I guess I did. At the time, I always felt like I was kind of working at threshold. Yeah. Like I was probably just not very aware of, or very good at listening to what my body and my symptoms were telling me.

Tasha Stanton  23:48  
Probably because that is that's universal. I think for a lot of us, especially if you're in you know, a lot of different sports, you actually learn to ignore pain, soreness, discomfort, things like that, because you're pushing to do things. So I imagine like I'm almost picturing, like relearning, listening to the body. Because I think I don't know, I guess I probably put this into my own personal circumstances, but I know I'm, I can be bad at that. Yes. And then you sort of realise that you've gone too far. Yeah. And but by then it's too late. You've already passed that threshold before? And it's like, Oh, good. Yeah, that's really interesting that, yeah, that it was almost scarier. You're re relearning. We're going through that. That thresholding

Robbie Frawley  24:31  
hmm. And I think I was very slow. So just for context to this was that an initial injury or you know, bump? Wakeboarding for was seven and a half years ago? Yeah, I think and I'm 34 now, so. Yeah, it was in my late 20s. And yeah, I think I was a really slow learner, of graded anything. You know, I think I've always been very much, you're either 100% in, or I'm not doing, you're not in at all. And through just repetition, and getting knocked down. Like, No, you need to do this graded, very slowly seen, and I appreciate now, the the benefits and the advantages in doing something. And that could be anything, you know, in a graded way. Like, during COVID, I did a couch to 5k programme because I, you know, like the app. Yeah, and I was comfortable that point. And we can talk about that later, like that I had was good to go. And I was 100%. But I still hadn't run for seven years, I used to run a lot. And so that sort of really highlights that I in the past if someone said I'd do a catch stick 5k There's this app, you know, in eight weeks, eight weeks, like no, I can run 5k Today, I'll do it tomorrow. And so whereas I'm much more happy to do that now. And I think I just get that it works for our bodies, and our brains and everything, it just work on a year that is quite even if we don't want to do that, for whatever reason. It's very beneficial to our systems. Yeah. And so that was great. I mean, eight weeks. It's amazing. Like, you've clicked the fingers, and it's gone. And you're running five games if you're good. Next day after. Exactly.

Tasha Stanton  26:30  
So what what's sort of happened? I guess, you've gone into this the programme where you're kind of getting some personalised advice about pacing, reducing work, what's what have happened with your symptoms over time?

Robbie Frawley  26:43  
Well, I guess there's sort of the meta view or the broad view or the micro view. And so at a broad level, they trended up, you know, they gradually increased. And you would say, oh, that's, that's really good. But that isn't how I necessarily felt at the time. So on the kind of micro day to day, week view, I was still sort of boom busting, and are still it was, it was a battle and a grind. And it didn't often it didn't feel like I was making progress, or moving forward. And so it's really important, I think, sometimes and you can only do that over a broader timescale, they kind of stand back and go, hang on, have I made improvement here, am I going in the right direction, I guess the other thing is, you might be making improvement, but you might not be to your expectation of time. So when you've initially got an expectation that I'm going to be good to go in a week, or that, you know, you've got all these things and calendar, you've got weddings lined up and you've got trips lined up. It's good weather. So you want to be going surfing like the middle of summer, Tash. I mean one word. So I want to go waterskiing, and wakeboarding. First of all, tonight, exactly, and my, probably my brain and my expectations of what I wanted to be doing. Again, you can sit back now and go, Oh, yeah, it was all trending in the right direction. But at a timescale that I wouldn't have wanted to know about at that point. I didn't, you know, I think you'd start reading stuff. And they would talk about six weeks or this period or that period. And, you know, I was only interested in the shortest possible time. Whereas, yeah, so it was definitely fluctuated short term. You know, I was a slow learner, as I said, of that, of doing things graded. But as you stand back, it did trend up. 

Tasha Stanton  28:42  
And I think that that actually is such a, that hits home to me a lot. That's such an important message, that idea that it doesn't feel like you're improving when you look into the minutiae, small scale, but stepping back, it actually is. And I think that is hard to feel like something's proving, if you're, if basically what you're trying to do most of times is pushing things just to threshold and not over because that push the thresholds pretty important, but then you kind of constantly feel almost like crap. Yes, a lot of the time. So it feels like I guess I, I see, we do see this when we work with people who have pain, that oftentimes we're trying to increase activity, and you're always pushing to that, that point where it's starting to feel uncomfortable, it's starting to increase in pain. So it doesn't feel like it's definitely getting better because you're feeling pain. Most days. It's never counsel. That's right. But I think what a that's such an important point that that that trajectory is still going. It just takes that step back. But I take your point about two expectations of time. I'm quite impatient. I hear you.

Robbie Frawley  29:48  
And so I suppose to describe what that looks like. Yeah, so the key strategies that I was using at that time that were, I guess, taught to me by that team. The first one was I that if you, we talk about that energy bar again. So the life bar if you like in the top right hand corner of your screen, if you see you're looking at through your eyes, if I'm running full, I would, I guess at the point I was seeing Grace Michela to beat. So the clinic, you know, to begin with, I think I would last an hour and a half to two hours. And every hour and a half to two hours, I would need to lie down in a dark room for 15 minutes. And doing that would allow my energy bar to fill back up. And then I'd be good to go again. And the symptoms wouldn't generally be there. And I'd be feeling pretty good. But by the time I got to that hour and a half, two hour period, I'd be starting to slur, I'd be becoming unstable, I'll be starting to fog would be coming into my, my sort of thinking space, starting to get a headache, it'd be starting to feel nauseous. And if I wasn't really aware of the time, I quickly became aware, something was up and about, ah, it's like an hour and a half, two hours, I need to lie down now. And so, over time, I reduced, I guess that time. So you know, 15 minutes to 14 minutes. And you know, I literally just had, you know, got a phone in my pocket and has a great, you know, on the clock thing, there's a great countdown timer, that I have used that. So you know, it's always said on whatever you've had it on. So like that would go from sort of 15 to 14 to 13 to 12, to, you know, slowly, and then the gap between them. So from, you know, every hour and a half, two hours to sort of get slowly great. And that might be over two weeks. So I go over, you know, I might be at 10 minutes, you know, and I got to the point where I didn't have to be lying horizontally in a dark room, but I could just sit and close my eyes. And that was a big thing. Because you can sit and close your eyes, anywhere. It's quite amazing. I've sat and close my eyes. And some, you know, you can if you're in Melbourne, I remember I was the first few times I went to Melbourne after like years later. And I'd have gone to somewhere to see people but I might be on a street and you sort of trying to I don't know, you don't really want to go into all the details. He wouldn't tell people all the stories, but you would excuse yourself for some reason. And shuffle that around the corner, be sitting in some alley and like sit on some milk crate beside all the rubbish or something and just close your eyes for at that point, it was six minutes, just put the timer on. And that was so regenerative, regenerative. I reckon that's definitely. Yeah. And so I think that's I mean, I actually still use that. So I got to a point where I don't think I needed it anymore. But I actually decided I realised that I said, Sorry, that's every four hours there about four to five hours, I'll still stop whatever I'm doing. If I need to remove myself from where I am, or if I'm doing it wherever I am, I'll put on the timer, three minutes, I'll just close my eyes. And I'll just either just close my eyes and kind of switch off. Or, if I'm distracted, I'll just start listening to noises around me. So if I do that, right now, I can hear the projector harm. To my left, I can hear some traffic or something behind me, I can hear this kind of low hum of the air conditioner above, I can hear my hand moving in the air to the right or must be something with the February. And I don't know for me that was really, really grounding. I knew that if I just stopped doing it, which I could have, I would sort of just never stop. And so I decided at that point, it's actually quite healthy habit just to sustain in life because you actually stop and you pull yourself out of whatever you doing. So I've sort of just kept that.

Tasha Stanton  34:15  
That's a really good so you're kind of explaining that those those taking those mini breaks and structured so that you know that you need to do that. But then also using those kind of grounding techniques to just centre yourself where you are. And do you find what those ones is it with those? You're noticing what's around you. Are you also noticing internal sensations or is it mainly?

Robbie Frawley  34:37  
I'm aware that in mindfulness, people have various techniques, and often that will be feeling sensations in your body or noticing thoughts or different things for me. Like I meditate now, a little bit so I've sort of found that really useful as well. So I might meditate might just put on the calm app. That's really good. For our 10 minute meditation, I'll try to do that once a day cuz I find that really a really good life thing. And really calming and centering and sort of, I just recommend it, it's really, but But in that I definitely do that body scan thing where you actually sort of starting, you know, breathe deeply for first and then start at the top of your head and go through your body, noting what am I feeling like any sensations stuff, and then I'll come back and like breathe into them. But when I, I guess the switching off initially, at the point of switching off, I was just completely exhausted. So originally, I was just closing my eyes and zonking. And then I think over time was like, after I'd come to from the zonk Yeah, the last like, minute, I might be at home, I come back to consciousness, then I might be listening.

Tasha Stanton  35:51  
I love that word, zonking. It's a very good description of it.

Robbie Frawley  35:55  
So sorry. Yeah, so that was one thing that over time, that was a really key strategy. The other thing was planning stuff out. And so that would say, Okay, you need to mow the lawns, rather than, say, owning all the lawns at once. Just plan to do half the lawns, and just stop. And again, the status like but yeah, everything was just breaking things into component parts, and allowing yourself then just sit on the couch for a bit. And do what? Don't do anything. Just just, yeah, just be

Tasha Stanton  36:31  
This is very difficult advice. Do you know who I am? So do you feel throughout this like so clearly, as you've mentioned, this, this was a process that took time and maybe more time than didn't often you'd hope,

Robbie Frawley  36:43  
Much more time than I was hoping or expecting. 

Tasha Stanton  36:46  
With that, did you find that there were certain things that you know, were really quite crucial, like books, resources, things like that, that were crucial to your journey kind of along this?

Robbie Frawley  36:55  
Yeah, absolutely. So I think a really fundamental thing for me, was learning to have an appreciation of neuroplasticity. And that's a big word. But effectively, it just means the brain's capacity and capability to heal and to grow. And you're a researcher in this field, so you if I'm butchering, you know the Scripture, feeling correctly. But this is my layman's terms understanding of it. And I think that's really important, because I certainly grew up with this understanding that the brain is hardwired and very differently to every other organ in our body, it can't heal or regenerate or renew itself, the way that our if we cut ourselves out, heal itself. And so if that is a thought process is quite destructive if you have had an injury to your brain. And so a book that was particularly helpful to me, and I would really recommend to anyone listening to this, whether you've had some sort of you're, you're recovering from something, or whether you're a friend or family member of someone who's recovering from something, or whether you just happen to have stumbled upon this podcast, I really recommend looking for and reading or listening to a book called the brain that changes itself by a medical doctor in the US called Dr. Norman Doidge. So di D, G, because I had a friend or colleagues, partner, I remember seeing her one day, and she sort of said to me, Robbie, I was up to my boss's car the other day, and has this audiobook playing. And I think you should really listen to it. And so she told me about this. And prior to that, I would often read books. And at this point, if I read a book, I would get a headache. And I think that was actually because in that day, following the surfing the second impact when I'd been surfing, and when I was feeling very ordinary. And I was like just chilling. I thought again, oh, if I can't go surfing, I should do something make use of this time. And there was a book that I was reading. And I think maybe when I was reading that book at this time when I had all those symptoms, or when I brain really just needed a rest. I don't know maybe that just means there was something where it took a while for me to sort of be reading a book in that setting again, so again, like we said, I had to actually slowly re acclimatised myself I was reading at night before bed, I would instead of trying to read what I wanted to read, I would read half a page and then I would force myself to close the book and be like what, what happens next? I've closed the book, putt, putt and then you know over weeks increase and it's amazing. The brain and the body can adapt to and recover if you allow I have to do it in a graded way. But the idea of trying to read this book that's going to be helpful for you want to get that information in, but I couldn't read a book. And so audiobooks are fantastic. So I highly recommend thing. It's on Audible, you can get it from the library. Yeah, fantastic book. And the reason it was fantastic was because he shares stories of people who have had miraculous recoveries from all sorts of brain related. I don't even know if illnesses is the right description

Tasha Stanton  40:30  
Yeah traumas, like stroke, stroke was one of them wasn't it?

Robbie Frawley  40:34  
Yeah, there's just some amazing stories. And this was I don't know, when it was written, but it was stuff that was not accepted, sort of..

Tasha Stanton  40:44  
Kind of general knowledge of that in that field or that area.

Robbie Frawley  40:47  
And I just found it the most hopeful, sort of exciting, life reinforcing light at the end of the tunnel for me, and so I would just listen to it and just find myself so excited. And exhilarated by the thought, I mean, you know, I'd be listening to someone's story about recovering from a vestibular issue, and the incredible Doctor, this sort of thing in the US, and it is amazing, you know, just their curiosity, basically, all recoveries were because the treating doctors having to be incredibly curious and open minded. And these things that people didn't expect to happen would happen. And that book was probably just lit a match, you know, for me, and it gave me hope that you can recover, and that regardless of whatever's happening, for someone with a brain related issue, which are pretty like confronting issues, because because of what we're talking about earlier, where traditionally they've been regarded as it's fixed, and that's the way it is, which is a very kind of fixed mindset. And instead of just opening the curtains on that and saying, You are these examples of people who've recovered from things people didn't expect them to. So that was a fundamental, a fundamental moment for me. And I'd really recommend that book.

Tasha Stanton  42:13  
I think, yeah, that's, that's huge. That that knowledge that things can change. And and I think what I love about those as we all kind of go in a way I do anyway, for the underdog, like, you know, when you're watching something, and then it's like, a kind of like, when I think about things like that, because I've gone through, you know, various injuries and other things, not not, not what you're discussing here, but you feel like, sometimes I do in that situation, that I'm the underdog. And then I'm like, oh, yeah, I can cheer for that. Like, if you feel like it's possible. That's amazing. And I think that that is really, that hope, is really, really important. And that hope is based on solid scientific knowledge. And that's, I think, what I as a, as a researcher and a scientist I get really excited about because it's not misplaced. It's not misguided. It's based on the knowledge that we know from rigorous study. And that's amazing.

Robbie Frawley
That's the end of chapter 2. In chapter 3 I discuss my search for answers and useful things during those initial months.