Jess
Hi, I’m Jess.

Sara
And I’m Sara. And we’re from the Geelong Neuro Centre. We are empowered people, empowering people, and the aim of this podcast is to empower you.

Jess
Welcome back to the GNC podcast. We are very excited to have a special guest with us here today. Sara, would you like to introduce Tony?

Sara
Yeah, today, we have one of our clients with us today, Tony. So Tony is a client that comes into the centre three days a week. He sees occupational therapy, physiotherapy and exercise physiology. Tony had a stroke in May 2020 and I first met Tony as his OT at his house. And I remember the first time I spoke to you, Tony, you said, I’ve just had my stroke. I’m in my three month window on the phone. I’ve got to do everything I can within the next couple of weeks to make sure that I get back to doing everything I was going to do and achieve my goals. So I came to meet you at your house with your partner, Suzie. And I remember sitting at the kitchen table and I got to know you and I think, yeah, we’ll have a bit of a chat about it today. But how you’ve come so far in that time, when I first met you, walking only within your kitchen area, you weren’t able to go outside. You had a stick that you were walking with holding onto the furniture as you were walking around. And, yeah, you’ve come so far in that time. Yeah, we’ll talk further about that soon. But your stroke has affected your right side, so your arm and your leg. And so, yeah, you’re working really hard at regaining the function in your arm and leg, to be able to get back into the surf, to get back onto the beach, to run, to play with your grandchildren, to drive your cardinal without any modifications. And, yeah, I’ve got some really great goals. So, Lach, Darc and I, we have the pleasure of working with Tony every second week. He comes in every second week for three days in a row and he goes home and does his home exercise programme, should do his home exercise programme and then, yeah, comes back and we see him every second week. So, yeah, today is a bit of an opportunity for us to, to or for you to have a bit of a chat about your experience and, yeah, also reflect on how far you’ve come. As far. Yeah. Anything I missed in your introduction, Tony?

Tony
Not really. I don’t think so, Sara. We are now live.

Jess
We are live.

Tony
We can edit this.

Jess
We will not be editing that part.

Tony
No, I think we’ve got it. You’ve pretty much summed it up, Sarah. The only thing I’ll say with the intro is that I was really lucky. And I think about this often as we all go through our short term, medium term, long term goals. How fortunate that not just me, but I suppose all stroke survivors are, that people like you don’t laugh in ridicule when immediately after a stroke I say, you know, I want to run again, I want to pedal again. I want to do this because every stroke is different and not everyone will get to do those things. I’m not placing any restrictions on where I’m going to end up. And certainly, yeah, with what we’re doing, I hope we will do all those things again.

Sara
Yeah. Yeah. Do you want to talk to us about some of those goals that you had in your mind when you first came home from inpatient rehab and what they were and what they look like now for you?

Tony
Yeah. Look, when I. It’ll be fair to say when I first had my stroke, I was lying in bed in McKellar needing a sara steady, as they call it. For those people who don’t know what that is, it’s a trolley that two nurses are required to bring over whenever you want to get out of bed. So that in itself was different, somewhat annoying. But then I just thought it would be spend some months in the gym and I’d get these muscles going and I’d be right. And then you learn what a stroke actually is and then start to understand that you’ve got to get your brain talking to your muscles again. Pathway that’s got to occur, to be rebuilt for that to happen. But the good thing about it is that you know, the science out there now, which is really solid about that can happen. And, yeah, I remember reading in a book a few months after my stroke, and I can’t remember who wrote the book, but he did say. He said, if you’re happy where you are after your stroke, that’s good. But he said, if you want to get back to what you used to be able to do, be prepared to work as hard as you’ve ever worked in your life. And I’m not sure I do that every time I come in, but, you know, we’re working pretty hard when I come in, definitely. And thanks to yours and Darcy’s and Locke’s sternness, my compliance is not bad either.

Sara
Yeah, we do very well. Very well. What was the biggest challenge for you when you had your stroke? What was the biggest challenge in getting home?

Tony
I think the biggest challenge was accepting my new situation. And really, fortunately, mentally and physically, you’re not in a position to look where I wasn’t, to look too far ahead. You’re really in survival mode. The first challenge is to get the little bit of green tape around my walking stick that I had at Macalla, which means you can now walk up and down the aisle there. The corridor is unassisted, and then they’ll allow you to go home. So, and you come in and you cheque out the house and see if we need ramps and see what the steps are and things like that. And I think being a little undulating and lawn helped in a way, because it just. It made me do rehab without thinking about it, particularly in the early days when I’d catch the bus because I didn’t have my licence. I’d catch the bus from Belmont here and get let off at Lorne and had to walk up the big hill to home. And that itself was a challenge. You know, it’s a very steep hill. I needed a bit of a rest for the time I got up there, rehab, and that’s one thing I learned earlier. And you kept stressing it, use your right hand, use your right side as much as you can, because if you can incorporate it in day to day living, you will improve quicker. And you’ve proved to be correct.

Jess
I think it’s such a good point that we look at rehab, and your rehab might not just be the 1 hour, the 2 hours that you’re actually in the centre, in therapy, with your therapist. It is all day. And like you said, it’s working extremely hard. But what are those opportunities to use your more affected side? How can changing up the route that you’re taking or using hills and inclines and just being strategic and how that is so beneficial towards your goals, but looking for those opportunities day to day and how much that will assist your recovery as well. I think that’s such an important outlook to have, that therapy is not just within therapy, it is a whole day.

Tony
Yeah. And I think early, one of the challenges early was the fact that physically and mentally, I was unable to do what part of my brain wanted me to do because I mentioned before about the few months in the gym and I’d be right again. Well, pretty quickly I learned, well, that wasn’t going to be the case. So I had to temper my rehab a little bit and just do what I could. And this is where Sarah, Das and Locke understand, because they experience what I could and couldn’t do back then. And we had to play with my rehab schedule a little bit, because there were times when I was just totally exhausted and almost delirious in here that I was just doing too much. My mind and body couldn’t cope, so we had to bring it back a little bit and work with what I could do. And now I think we’re in a really good rehab schedule now.

Sara
Yeah, we’ve had a couple of different models that we’ve had a go at. I think at the start, we probably weren’t doing enough. We had 1 hour a week of Ot Physio EP, and that was it. And then we moved into a intensive model where you came in three or four times a week every week. And, yeah, that’s when you spoke about that bit of a burnout. And then, yeah, we changed it to, like, a two week on cycle, a week off. And now at the moment, we’re one week on, one week off. So, yeah, we’ve had to work around what works for you and also looking at all the other roles that you’ve got in your life in that you work and you’re a husband and you’re a grandfather. Pa. What do we call you? Poppy. Yeah. So you need to be able to still have the energy to fit those sort of things into your day as well. So, yeah, I think that often when you came back from your summer break, that’s when I think you had those chances to reflect and think that this is what all my rehab to look like now.

Tony
Look, it is. Well, it’s been really important for me because we’re in a new world. I’ve never been in this position before. So rehab can be 24/7 which we’ve talked about a lot, but in saying that we’ve got partners, we’ve got family, we’ve got friends that we need to keep in touch with to keep our world digestible and our rehab digestible and everything working well, because if we focus on one thing too much, whatever it is, whether it’s rehab or life, gets out of balance. So, yeah, balance was really, really important. The other thing I thought of there when you mentioned the different intensities of rehab that we’ve done, I think what we’re on now, we’re doing intensive rehab, but we’re not doing as much overall body rehab as we used to do. We’re doing more specific rehab, which produces itself in improvements and can be measured and easily seen. So I get motivated by the fact that I can now move my finger three millimetres more than what I could last month. And I’m sure the therapists get motivated, too, by seeing the improvement in me. So does that change in the overall body rehab that we were doing to more specific rehab, which for me has worked really well?

Sara
Yeah. So focusing on really specific goals, how.

Jess
Have you found going from more, I guess, that traditional approach to that 1 hour weekly moving into an intensive model? How did that feel for you, Tony? Which one are you preferring? What were the major differences?

Tony
The intensive model, Jess, was something that I had to be ready for because for the first couple of years, my body and mind wouldn’t have coped with the stuff I’m doing now. Similarly, when I first got my licence back after a year and a half, I probably shouldn’t have been behind the wheel, but we get our licence back and we drive very carefully. But I feel much better in the head behind the wheel now than what I did then. And hence that translates to being able to do more physical rehab wise as well.

Sara
Let’s have a chat about that incidental rehab that you’re doing at home as well. We have worked together and done some work on your house and thought. Have had. Have had. I thought, I think, sorry, start again. Have had a think about some of your hobbies and how we can incorporate that into everyday activities that you’re doing. So now you’re getting back into. You’ve got your shed done up, so you’re tinkering in the shed, and as you said, susie’s become a bit of a shed widow, but it’s a great opportunity to use your hand. And over the warm months you got back out on the surf ski, you are making Suzie’s coffee in the morning. So, yeah, I think that’s been really nice to see that it’s things that you’re doing before that we’ve been able to incorporate arm into now.

Tony
Yeah, I think for me, one of the biggest, the biggest reasons why we don’t do rehab at home is because for me, I only have one arm that functions the way it used to. I’ve still got two arms and. But, so I try to work as quickly as possible because I want to get through as much as I can every day. But to do rehab in those off days when I’m not in Geelong Neurocentre, I’ve got to slow down and make sure that I’m using my affected side as much as I can. And that’s really important. From opening door knobs, from working tinkering around in the shed, using the electric drill. I could do it a lot quicker now with my left hand, but it won’t help me get my right hand back to where I want it. So I’ve just got to slow my life down a lot and make sure I use my affected side as much as I can.

Sara
Yeah, yeah. Good.

Jess
And those goals, like, I know that was a goal, getting back on the surf ski and making the coffee in the morning, talk to us about this process of achieving those goals and now some of the goals that you’ve set going forward.

Tony
Well, Jess, I never really had a goal of making Susie coffee every morning.

Sara
She had that goal. Wasn’t your specific goal.

Jess
I think that should be every wife’s goal.

Tony
She won’t go anywhere else. Now she perpetrates the lie that I make the best coffee and Lorne, but that’s not quite right. But getting back on the surf ski was something that I’m happy to talk about because for almost a year, Sarah and Lachlan and Darcy were at me to get back on the surf ski because it was a goal of mine, but I just didn’t feel I was ready. So finally, over the summer break, we organised to come in there and these guys put themselves out, met me down at eastern beach and we got the ski in the water and I got back on the ski and had a paddle. And for me, that achievement was a slow burn. I first thought, well, that’s. That box ticked and got back in the car with Susie and these guys headed off, strapped the ski back down, and Susie then texts some photos and videos to the family and I get a bit of emotion when I talk about the feedback. We got back from the family was amazing. And I sat there in the car and thought, well, maybe I haven’t put enough, maybe I haven’t patted myself hard enough on the back for that, because that was something significant that I would not have dreamed about doing two years or even one year ago. So I suppose we learned to celebrate all those little achievements and even bigger achievements, we should really celebrate them because they are milestones. And as the other thing, which Suzy, who has been my biggest supporter, has said to me, I said to her one day, I was feeling pretty pumped because I just got home from rehab. I said, I’m getting better every day. And she looked at me and said, no, you’re not. She said, but you are getting better every month. So it’s really important that we have our ups and downs along the way. But I can guarantee you, if you’re doing your rehab, you will be better this month than you were last month.

Sara
Yeah.

Jess
Yeah.

Sara
And that was the best day I loved taking you out there and seeing your smile and you had a few falls off the ski, but you didn’t care. You just wanted to be in the water. And, yeah, we do have a reel.

Jess
On our instagram of that session. It looked amazing.

Sara
Yeah, yeah.

Tony
It was a lot of fun.

Sara
Yeah.

Jess
Although I did. There was no bloopers or falling off the ski.

Sara
I should put them up.

Tony
Are you sure?

Sara
I fell off as we were practising.

Tony
I did get a bit wet. I’m going to.

Sara
We all did. You said that Suzie’s been one of your major supports, main rock. Who else do you lean on for support?

Tony
Well, as well as you guys at rehabilitative, the main support was when we were out at McAllister after the stroke. So they had a magnificent team out there, but family and friends were amazing. But Susie was also really good in scheduling the visitors to make sure that I wasn’t getting overwhelmed. There were two highlights out there food wise. There was a seafood piece of by Anne and a young chap called Billy who where we now call Mister Misaka, who is just fabulous. And before I got my licence back, an old schoolmate, DB, would come and pick me up after rehab and take me home. So there’s. And family and friends, of course, are always there but don’t get the recognition that they do. I was really lucky that I had that support in Geelong because I know a lot of people come to rehab not from Geelong, from further out, and don’t have that type of support around them. But, yeah, I was really lucky.

Sara
Yeah. Has that been a challenge for you living? I see you live in Lorne, like the accessing supports being in, I guess, a rural location.

Tony
Yeah. Look, it is a challenge mostly of a Tuesday because I’ve got to get up extra early to get here in time for rehab, but before I had my licence, it was more of a challenge where I had to catch the bus home and things like that. But no, I think it’s, look, having you guys here as my mainstay and only an hour away, really, to me it’s not a biggie.

Sara
Yep. Yep. And I think, like, you’ve got access, you’ve got some help with some cleaning at home as well and. Yeah, I’ve looked for some supports and even we’re talking about getting back onto the Cerf scheme more regularly, looking at having some supports in lawn to help you do that. Yeah.

Tony
And I’m sure if that eventuated even though we’re in lawn or an hour away, it’s not what you’d call really back blocks remote.

Jess
What do you think initially think was going to be really challenging? That hasn’t turned out to be as daunting.

Tony
I looked at that question when Aaron sent me the questions last night. I don’t think that there is, for me, after the stroke, as I said before, I was in survival mode, so I didn’t look too far ahead. So I would think that everything has been new and daunting, and therefore I can’t honestly sit here and say that, oh, I thought that was going to be hard, but, gee, wasn’t anywhere near as hard as I thought it was going to be. It has all been a hard road, but it’s been a road worth taking because you get so much fulfilment out of the little achievement along the way.

Sara
Good answer.

Jess
Yeah. And how has your perspective changed over time since having your stroke?

Tony
Perspective. I guess the stroke, for me, there’s a couple of things. Perspective in what I wanted to do in my retirement was be able to be in the water more and do whatever I wanted to do physically more. And I haven’t been able to do that over the last four years. And I wanted to be a retiree who was poppy to the kids, you know, and be able to help my kids and Susie’s kids, because we’ve got six between us, do jobs around the house and stuff like that. So I’ve had to let that go at the moment or push it out a bit into a long term goal. And I guess you sort of, with the stroke, makes one look, or made me look inside myself saying, okay, we’re getting a bit deep here, but I sort of started to think, well, what am I here? What difference can I make on the planet? So I started to think of probably other people rather than just myself.

Sara
So, Tony, within our therapy session today, we were talking about gratitude, and I wanted to ask you about gratitude and what you are grateful for.

Tony
That’s a good question, Sarah, and it’s good because it changed over time. Initially, when I had my stroke, it’d be fair to say it was a bit of a, why me and you sort of take on. The nurses would come and say, oh, someone fit and young like you. Because there was older people than me, they were looking at Jess, who’s about ten

Jess
I’m nearly 29, but.

Tony
So it’s really easy to take on their words and say, yeah, why me? Poor me. But then when you look around McKellar and in here in particular, and you see people who are hellable or worse off than me. Well, then the gratefulness cuts in and I get to think about how I could have been. We talked about before, how every stroke is different. I could have been blind. I could not be able to speak. I could be a hell of a lot worse than what I am now. So it’s really important, I think, to be grateful and think about what you can do, not what you can’t, because it won’t get you to your goals if you’re continually thinking about what you can’t do. It was look, and only one little snippet, which I’ll never forget, just because it sticks with me. I was watching the Rip Curl pro on tv not long after my stroke, and I thought, gee, I miss being out there in the waves and stuff like that. But then I thought, you know what? Some people can’t even see. And here I’m able to watch it on telly. I’m able to get myself down to the point of Lorne when it’s working and watch it down there. How lucky am I? Because a lot of people haven’t got that.

Sara
It’s really quite amazing and powerful that you can think like that.

Tony
Yeah. Well, again, how lucky am I that I can? Because if there’s the old saying, you know, if you think you can or you think you can’t, you’re right. Yeah, so true.

Sara
Yeah, so true. So true. Yeah, I think it’s. That’s one of the things I love about being a therapist, is that perspective where when I walk in the door and, yeah, I haven’t had a bad morning when I walk into work, I think that sometimes our morning routine could be a little bit rushed with family life and stuff like that, but it is a whole lot worse for a lot of other people. So, yeah, really puts life into perspective, and, yeah, can be really grateful for what we have. So when you first. When. Yeah, again, going back to when we first met, sorry, we’re going to jump backwards again, but you had support from McKellar as well, so Barwon Health, and then started seeing us at the same time, which I think that’s really important to highlight that. That was great, having that intensity of support, having both Barwon Health and private health working together to help meet your goals. And then over time, you’ve transitioned to GNC as your goals have developed and become more of those NDIS community goals. But why do you come to GNC?

Tony
Well, for all the reasons that we’ve been talking about, I come to g and ten, I guess I’m really lucky that you were the one who I got to talk to early, Sarah. And we contracted to start my rehab with GNC. And as you said, bone health as well originally. And just when you said that, it reminded me that it was Covid as well right at the start of COVID So it was a nightmare with Mars, very different and stuff like that. But I guess I keep coming back here because of the support and motivation that I get from you guys. And I sense it as care that you guys are really invested in my improvement. So that helps me to come back here to sort of feel as I would be letting you down if I didn’t turn up as well as letting myself down, of course. But you know, and that, that attitude that I have is being brought about because of, I believe, the care that you guys have given me.

Sara
Yeah, great.

Jess
I think that comes as well. When you know your therapist believe in you and what you can achieve and you’ve got these really specified goals then. Yeah. Wanting to come back because you’re like, oh, they’re expecting me to come, they believe in me. And having that collaborative approach, that’s what I take away from what you’re saying, which is great.

Sara
Yeah. And I love even seeing Tony Wednesday session. The banter that’s in the gym at that time, there’s like some regular clients that come in and you guys all know each other and there’s, yeah, shouts across the room and they’re all concentrating on your own rehab. But I enjoy the banter in the.

Tony
Gym at that time and that’s good because that provides that, again, some social contact that a lot of people don’t have. And it’s good for me as well. I was just about to say I could do without a feather. I do enjoy it.

Sara
We’ll let that client know. So looking ahead for the next twelve months to two years, what are your goals that you’re going to focus on?

Tony
Well, the goals, one in particular at the moment, I drive with some driving assists. And that is a spinner knob on the steering wheel and also a bluetooth, little control about the size of a garage remote, which has left and right indicators, lights, car lights and windscreen wipers on it, and a horn. I would love to be able to get enough strength and movement in my right shoulder to be able to get my hand up, to be able to use the indicator stalk on the steering wheel. And that would mean that I no longer need the Bluetooth because look, the end result of that would be that when Susie and I go away and have to hire a car, if we’re interstate that instead of Susie having to do all the driving, I can help out and share it because I’d only have to take the spinner knob, which you can put on with a screwdriver on any steering wheel in the world. Whereas the Bluetooth is like a two day fit out.

Sara
Yeah. So it gives you so much independence and freedom.

Tony
Yeah. So that’s one goal. The other goal is being down at Lorne. I’d like to be able to walk effortlessly. Five k, sort of two and a half k up and two and a half k back. Because once I can do that, that would lead me into a future goal of getting back to Italy. And it’s no use going to Italy if you can’t walk or anywhere like that. So. Yeah. And of course, yeah, I’d love to be out on those green waves from the pier at again on the ski.

Sara
Yeah. Good. Yeah, there’s some fantasticals to be working towards and definitely achievable.

Jess
Absolutely. Where do you want to go in Italy? Where’s first?

Tony
How long have we got, d’Erin? We love Rome. A lot of people don’t like Rome, but I could walk around Rome forever. We still have the best coffee in Australia. In Lorne, actually in Ellen street. But I love you. We love all of Italy.

Sara
Rome is beautiful. Anything else you’d like to share, Tony? Any other inspiring words for anyone else that’s had a stroke out there or.

Tony
No? Look, I don’t think I’ve got any inspirational words, Sarah, really, for people other than that. One thing that I think I have learned is that everybody’s stroke is different, so everyone needs their own individual approach to how they’re going to recover from stroke. And as I said earlier, and if how far they want to recover, because sometimes you just get to a point in life depending on maybe age has a bit to do with it and it probably shouldn’t, but people get to a stage where they’re comfortable and I can do this now, and this is really all I wanted to do, but unfortunately, or fortunately for me, I’m not like that. So, yeah, I would just keep going until I get to my goals.

Sara
Yeah.

Tony
And to me, there’s more. I’ve got to give my friend Joe a bit of a plug here because Joe Dispenser is a guy who has helped me and keep me motivated when you start to head down into a trough and I listen to his guided meditations and I’m looking for a shortcut because I’ve been doing physical rehab and fine motor school rehab for four years. And I say to myself, well, you’re still not where you want to be, Tony. How can we get there quicker? So I’m incorporating meditation into my rehab as well, just to round it off. And I believe it can really help.

Jess
Yeah, that’s how you navigate those low points is using strategies like meditation and.

Tony
Yeah, I think strategies like meditation, but just positive people around you, which is coming here every second week I get a, you know, my tires pumped up and boost and walk out of here. And Susie will tell you when I get home Thursday, I’m as high as I’ve been all week. She wouldn’t even know if it’s rehab week. She would be able to tell it has been rehab week from the way I am when I get home.

Jess
Yeah.

Sara
Amazing. Amazing. Yeah. I think that’s really important to acknowledge that you are looking after yourself emotionally and mentally as well. As physically as well. Yeah, it is.

Tony
Because we’re tracking and navigating a new world once we’ve had a stroke, because we’re not like we used to be. Some people might get better in a month. Some people might take a very long time. So, yeah, we’ve got to renegotiate everything. And Michael Bennett, who’s the neuro guy from McKellar, said to me in the first couple of days, sometimes a stroke will bring on emotionalism within people. And I do. I cry a lot more now than I used to.

Sara
We’ve had a couple of moments in our therapy sessions, haven’t we? Happy tears, though, recalling them. Yeah. Yeah.

Tony
Who would have thought that moving your finger would make you cry?

Sara
I know, for both of us. Yeah. Well, I think. I know that you don’t think you’re inspirational, but I think you’re super inspirational. And I know the rest of the team at GNC do as well. And. Yeah, we enjoy seeing you bound in that door every second week and. Yeah.

Jess
And the advocacy that you do for stroke, for survivors as well, Tony, it really is inspirational.

Sara
Yeah.

Tony
Thank you, Jess. Thank you, Sarah.

Jess
We’re all going to cry.

Sara
Is that the way we finish up the podcast? Yeah. Well, thank you, Tony. Thank you for joining us. We really appreciate your time.

Jess
Thanks, Tony.

Tony
It’s a pleasure.

Sara
Thank you.