Andy, I'm curious. I discharged myself from RPA a's stroke unit on the Tuesday morning after my stroke. So I had got to the ward on Saturday night. I'd been largely. on Sunday because the doctors weren't around. So I kind of got strappy on Monday and said, I'm leaving. As you can imagine, the, the staff were pretty upset about, This and insisted that I stay for two weeks. And I said no. , they sent two psychiatrists along to evaluate me and the soundness of my decision making, and they begrudgingly acceded to my request, but the neurologist couldn't make it until Tuesday morning and they wanted to him to see an mri. So I did agree to stay Monday night, but I was home on Tuesday. Now I was by no means . But I was delighted to be in my own home. And I did have the benefit of my fiance living with me and my psychiatrist who really picked up so much of the slack and oversaw me during those. two weeks when I really should have been in hospital. So I touch base with her every day and I followed up with my hematologist and my MRI follow-ups. I saw my psychiatrist twice a week and I wound up in rehabilitation facility as an outpatient in Merrickville. And they offered me a pretty wide array of services. Not specifically for stroke but they gave me occupational therapy. They gave me speech therapy. They gave me physical therapy. And a dietician. I very quickly discovered that my motion was absolutely fine. My grip was as strong in my right hand as it was in my left. While I had kind of pins and needles in my right arm, it didn't seemingly affect. My function I, the, the real problem that really popped up was, was the speech. And the, the, the speech therapist was great, but she was working to a very, very different standard than what I was expecting. I didn't like it there. I was surrounded by broken old people. They were 70, 80, 90 years old. And I guess a win for them was being able to return to their own home and, and pick up bingo night. And I'm being really condescending, but it really felt like that, that there was no one else with children at. no one else with a job that they were trying to get back to. So that's when I started my hunt for you. And I was introduced to you via the RPA, neurology, new neurology department. And we started off three times a week. And that, I guess, has been the most valuable. Kind of ongoing relationship outside of my psychiatrist and GP that, that I've, that I've had. How does that experience compare to those of other under 50 stroke survivors? Dr Kilov: I think that's a really good summary of your journey from that acute phase back home and into that initial rehabilitation phase, which rehabilitation is kind of like a really long piece of string and you don't know. The end is, so I think when you describe that desire to return home, I think you, you are a part of a population of stroke survivors, who , have your stroke. There's some acute symptoms which for you resolve. And like you said, you weren't experiencing. barriers with your movement, your strength of movement, your range of movement, even your ability to get up and get dressed and look after yourself. You had the benefit of having your fiance around and you were able to get to and from all those follow up appointments, which. often are under one umbrella in the hospital. So that idea of please stay in hospital for two more weeks after your stroke is a very common recommendation just because there are so many follow-ups, obviously as you're recovering function and recovering from your stroke. Being in the presence of a multidisciplinary team is really helpful because you've got so many different eyes observing you and educating you and giving you therapy programs. Allowing you to have that rest and recovery time. But I think, like you said, when you feel like you've only got your communication as the main barrier to your recovery, it's very difficult to be in a hospital setting where it can be confronting to look around you and see other people who maybe haven't had the same recovery or are managing different recovery pathways. And so, just because you get home after a hospital, stay after your stroke doesn't mean well, that's it. You still do need to make sure that you aren't experiencing any. higher level difficulties and that you linked in with teams who can help you navigate that next space and readjustment to life post-stroke in your home setting. Again, for everyone it's different and for some people a slower stream rehabilitation, is perfectly okay. I think your rehabilitation needs probably weren't as intensive from a multidisciplinary team point of view as other people in that you didn't need occupational therapy. , you didn't need physiotherapy. You know, the interaction with the dietician was limited because your swallowing was okay and you weren't modifying the texture of your food and drink. So it really did all come down to your speech pathology needs. Now, we know from the research that intensive rehabilitation in the beginning phase is extremely advantageous to your recovery. there are various different standards of care. When we speak about intensive speech pathology sessions in the beginning of your rehabilitation process, that can look like anything from two to five sessions a week. And I think as a general guide, being able to space out therapy sessions and home practice in the week allows you to start, working on a program monitoring progress. getting a feel for how much more therapy you feel you would benefit from and what, and also what you'd like to do, because sometimes five sessions a week is too intense for people, for many stroke survivors who are only working on their communication recovery, and then also returning to things like looking after children, returning to work functions, not just thinking about a return to home and a return to social. Feel that they need to be pushing their communication and their cognitive communication recovery in a different direction. And so when we work on communication skills, we work on both those bottom up skills like speech sounds and speech agility and words and forming sentences. But as you go on with those, exercises and skill recovery pathways, you also find that you are needing to work on more high level functions. Reading a newspaper and figuring out what's going on in the world, or how am I going to navigate the emails that are sitting in my inbox, and what am I going to do with writing responses to emails or meeting deadlines of work where that cognitive load starts to build up. The tricky thing about this kind of rehab is that there's a, I guess there's an expectation that you are going to have some time off work to recover. You may not have the luxury of having extended periods of time of work to recover, and some people don't want to have such an extended absence from their work or social space either. And so it becomes a really intensive process of working out what is the most practical set of guidelines we can give to you to maximize your function, not fatigue you, and also, Mask some of the difficulties which people in the community, will then start perceiving and having, I guess less educated reactions or opinions about that. So working with a speech pathologist on your skillset, but also then on managing those outside perceptions and, and kind of those bigger goal sets becomes really critical to your ongoing recovery and readjust. PIERS: Yeah. There is this huge desire to transition from being a stroke. Victim into being a stroke survivor as quickly as possible. And being in the hospital is definitely victim territory not being at home. So not being able to carry any of the household responsibilities and being dependent is victim. Not being able to go to work and abandoning your colleagues is victim. So there's this huge desire to start being a survivor and, and doing the heavy lifting, but it's un it's absolutely unrealistic. I mean, you can't, you can't drive you are sleeping. 12 hours a night and then an easily another three or four during the day. So you're still incredibly dependent, but at least you feel like you are heading in the right direction and doing things like speech pathology is reaffirming that you are able to make. That you are able to talk to somebody who doesn't care about the aphasia or the ayia, asphyxia, nevermind . And, and to be able to make progress on those fronts is, I guess, empowering. . I think that being able to do it over Zoom is also fantastic because it removed the dependence on location. You know, I had to get dropped to RPA or get an Uber to RPA for my psychiatry sessions. Now that wasn't because the psychiatrist was inflexible, it's just that I really wanted to do them face to face. But I, I guess there's that thing around getting out and starting to be a survivor potentially while you are still a victim. Is that something that is common, this sort of rush back to life in spite of. Dr Kilov: very interesting question. I, I think that there is a motivation to reto to return to some level of improved function or some level of improved or readjusted norm after a stroke. Once that initial acute cloud lifts and you can kind of see that pathway in front of you, again, different people have different. goal sets and motivations and, and things that they're working towards, and I certainly think that that helps pave the way to success. I think also, like you said, that the process is supposed to be empowering and reaffirming. So once you've got a good working relationship with your therapists and you can see what goal sets you're working on and that trajectory of success within those goal sets and moving through goal sets, I think that that. A little momentum in itself that helps you move from that victim mentality into that survivor mentality. And you do see that there's possibility beyond the early days post-stroke where everything is just so disorganized, confused, and out of your control. I think that therapy process gives you a sense of control back and allows you to pave your way. the goals and the, readjustments that you want to make. And I think, again, with the therapy process, that there's that nice balance between what do you as the stroke survivor want to achieve and how do you want to achieve that? And then the knowledge of the therapist in guiding you in terms of timeframes and, and work that needs to be done in order to support you on that. I dunno if that, if, if that resonates with you or if you found, if you can identify with that Senti. PIERS: Oh, most certainly. I, I, I really think there is a huge power around The sessions and making the progress and showing off to, to your family that, that you did actually achieve something today that you, you did do word finding at a, at a superior rate. Is, is of course really, really validating. Dr Kilov: I actually wanna jump in there. You, I, I think one of the other things which I haven't touched on quite as much, but you certainly have, you've had kids at home and you've had a fiance at home and you've had friends, very much a part of your sphere in the recovery. , were they really interested in what you were doing in therapy and were they could they validate the progress outside of therapy that we were seeing in therapy as well? PIERS: Absolutely. I mean, they were seeing it on a day by day basis, so they got to see my ability to respond to text messages with something more than an emoji. And, and, and then so they got to see word finding in action. . And yeah, they were very, very interested in the exercises and we played we re repeated a series of the exercises with the children over dinner. And that helped me begin to see that other people were not perfectly neat in their own communications. Dr Kilov: Absolut. PIERS: and the, the other people were having me, my fiance, was having difficulties at the same time as I was. So yeah, it was, it was a really important piece of the pie. The, the big thing for me though was you have this great progress and you, you, you, you fool. that you're gonna get back to a hundred percent because you make so much progress in the first two weeks. It's absurd. And you go like, okay, well this is it. I've got four months. Look what I've done in two weeks. I'm gonna climb this mountain and no one's gonna know a damn thing. So I'll go back to work and I'll keep doing this speech therapy on the side. But then it become, further and further away, the progress becomes slower and slower. The, the faults begin to stand out a little bit more and they appear a little bit more permanent. So expectation management on is a massive, massive piece. As you know. I did go back to work for six weeks. Before commencing three months of, of forced leave. And I, I, I guess I just went back, I set my expectations based on those first two weeks as being, I'll be fine. I'm gonna go back to work. And in, in, in, in a month from now, no one will even know it happened. I'm, I'm gonna be the great miracle. It didn't happen. And that, I think, led to depression. And the depression really came from the lack of work. The, the, the lack of agency and utility. Yeah. Yeah. And, and then, you know, you've gotta, you've gotta manage your expectations and lower. And that can be an incredibly difficult thing to do because it's like I'm now at the point of applying for the N D I S, something I haven't done up until now because I wasn't bloody disabled. So was just seek with, with a hundred percent recovery . Yeah. So this idea of, of of expectation management and embracing, I guess some element of victim status is, is really, really difficult. And it makes you double down on the things you can control, like the, the sessions between you and. Dr Kilov: I think you touch on a few really interesting points over there. Firstly, that idea of there's so much recovery in those initial weeks that you can become a little bit jaded in what your perspective is on that ongoing recovery. Now we know that a lot of that initial burst in recovery happens, let's say anything between the first six to eight weeks to. Three months. We know from the research that recovery can continue well beyond the 6, 12, 18 month mark, like even years into the future. And I've seen it with my own eyes that stroke, rehab and neurore rehab can have positive impact and make really valuable changes years after the stroke happens. Again, it comes down to what you are working on and what your motivation is and what, where your trajectories are and your goal sets and things like that. but the sky really is the limit. I think for you though, going back to work, many of us clinically can give you guidelines like say, don't go back to work for the first six to eight weeks, or don't go back for the first three months. But again, looking at your individual case and scenario, you were your own boss. So no one was sitting at the top of an organization saying to you, you can't come back to work. You were sitting with. Decision in your hands and from memory in the beginning, there's, I dunno if someone had recommended in the early days, like only go back for two hours or three hours or half a day, or don't have more than two meetings back to back. I think again, when it happened, when those general guidelines come in at the same time, as you're starting to make really good progress and recovery, those guidelines become a little bit redundant and nonsensical. and you start feeling like, oh, I can do more. I'm might just, yep, I'll just pop in another meeting, or, yep, I'll just do an extra proposal. Or you start taking on an increased load at work, which comes with much higher cognitive demands, which then have a profound impact on your communication skills. And so as you experienced, as you took on more and more, responsibility at work and kind of return to life as you felt was normal for you. I think a lot of that explosion of secondary consequences happened. Like you experienced more dyspraxia, you noticed your word, finding difficulties more, you experienced fatigue. Your emotions were not regulat. And I think there, there was a general sense of loss of control over some things and obviously making mistakes at work. Then you were also meant trying to damage control in your work setting. And I think that becomes really tricky because it's a very slippery slope once you've got so many balls in the air and you really are not ready to manage such a complex act. PIERS: Yeah. Look, I I, I, I really hear you I was the managing director of Australian Geographic, the magazine and associated businesses, and I was illiterate. I couldn't read or write when I went back to work, so meetings. The kind of the, the, the, the safe bastion for me. And they were exhausting mentally. And I did limit how much time I could spend in the office. I was in there from 10 till 12 each day for two hours in the first week. And I managed to whack in five, 20 minute meetings into those two hours. And then I went home and I slept for two or three hours. And I love how you say I whacked in five, 20 minute meetings because clinically to me that feels like an awful load of language processing to get. Whereas in your world, oh, well, five 20 minute meetings, well that might be much shorter than a general meeting that you run, and you'll just catch up and touch base with these five different people and you'll, you know, close up for the day and you'll go home and rest. Dr Kilov: But I think in reality, and maybe you'll be able to tell me more now with hindsight, five 20 minute meetings is the same load as five one hour meeting. In that initial phase, and I think it's also the load that you have to carry beyond those meetings. It's not just sitting in those meetings, but it's being able to remember what's being said and action things that are discussed and follow up emails and phone calls and scheduling things. And it's not just those five by 20 minute meetings, it's that load that you carry beyond those two hours in the office that also puts pressure on your. PIERS: Definitely. Absolutely. and, and when you are also performing it's, it's really hard. I, I remember speaking to you very early on about having performance days and prac PR practice days. So performance days were ones where, you know, I had to be able to host an offsite editorial meeting. I had to be able to do it. So I would perform and I would speak up and try to communicate clearly. , but I used workarounds to, to make that work. Whereas on practice days, which tended to be ones where it was one-on-one meetings or weekends where I could try out and stretch myself which led to much, much more blunders in my speech. But hey, it was still it was still progress, I guess. So I, yeah, and just, it's two different format. Dr Kilov: sorry to jump in over you, but those three words, you'll know your practice days, your performance days, and then progress. I don't know if progress of that that thread that, works between the. , but you're on all the time, even on your practice days, I think you are putting in so much effort and energy into boosting those communication skills and working to your absolute potential. That is another load on your endurance your fatigue on your system as well. But I think I, I really liked your terminology. , you know looking at a day and going, okay, today's a performance day, you know, and how well did I perform today? Or, I'm feeling like today I'm not performing that well, so it's more a practice day and how am I getting through those difficult moments today? And then being able to step back at the end of each of those days and from week to week and looking at, okay, well what, what progress have I made and where am I going with this progress? And where are my new goal sets and what are my needs for the week ahead? And it's a constant. reflection on you as a stroke survivor, and also you're in constant planning mode because even on the weeks and the days where you've had great performance and great progress, it's still not enough I don't think, and you're always looking to take that next step. PIERS: Look a Andy. That's about all we've got time for in today's discussion. But you know that you're not getting off the hook. I really want to pick up a discussion around small victories which is the, i, I guess the. The, the, the, the silver lining on expectation management is when you do get those moments where you accomplish something that you didn't think was within your range. So look, we will leave it there for today, but thank you so much for your time and I look forward to, to discussing the journey a bit more with you and particularly. Victories. Thanks very much for your time and we'll catch you next time. 4 0 4. Bye-bye. Dr Kilov: Thanks, Piers. I'll see you next time.