Brain Stem Stroke
Stroke Podcast Episode 29 – Antonio Iannella, is father, musician and a brain stem stroke survivor.
In 2009 at the age of 38 he experienced a haemorrhagic stroke while on the trip of a lifetime with his family in Vietnam.
Brain Stem Stroke
Antonio spent eleven days in a Saigon hospital, five of which in intensive care while waiting for a rescue flight to return home to Melbourne Australia where he was admitted back into hospital to continue his recovery and undergo three months of rehabilitation.
Recovery from a Brain Stem Stroke
Stroke took a lot from Antonio at the beginning and he has had to relearn how to sit, stand, walk and talk again.
Inspired by his family and friends his dedication to the recovery process, commitment to the tasks he had to achieve, as well as a positive outlook on life, Antonio continues his recovery Carefully managing the stroke deficits he now lives with.
This father of three girls, has re built his life is now a volunteer at the National Stroke Foundation in Australia and has reinvented himself from a building and construction project manager to a music producer from his recording studio – Studio four99.
His stroke may have taken part of his previous self but Antonio is grateful for all it’s given him as well. Prefer to watch online rather than listen? Take a look at the full interview on youtube by clicking the image below.
06:40 Sign’s of Stroke
12.26 Bedside manner
26.13 Anxiety and Depression after stroke
30:50 Emotional Impact Of Stroke
33:43 Symptoms Of Stroke
34:10 Laxatives After Surgery
40:45 Reinventing Yourself After Stroke
45:27 Parenting After Stroke
57:40 Noise Sensitivity
59:26 Driving After Stroke
Meditation helps me a lot, since my stroke I’ve always been interested in that side of, I guess well being pretty much my whole life and after having a stroke I’ve kind of reinforced that and began to follow I guess spirituality and meditation and positive believing and meditation helps me, the stroke has caused a bit of anxiety so it helps me just to you know, settle those anxious thoughts and yeah, any situation.
You know, sometimes it might be a few minutes when I’ve pulled over the side of the road, pick up one of my kids at school and I’ll just practice breathing. So yes, it’s very helpful.
This is the recovery after stroke podcast. with Bill Gasiamis, helping you navigate recovery after stroke.
Bill from recoveryafterstroke.com This is Episode 29 and my guest today is Antonio Iannella. Antonio is a father of two, musician, and a brain stem stroke survivor. In 2009, at the age of 38, he experienced a brain stem stroke, due to a burst AVM while traveling on a trip of a lifetime with his family in Vietnam.
Antonio spent 11 days in Saigon hospital, five of which were in intensive care, waiting for a rescue flight to return home to Melbourne, Australia, where he was admitted back into hospital to continue his recovery and undergo three months of rehabilitation.
Now, just before we get started, if you’re feeling a little disconnected from your support team due to restrictions from COVID-19, shutdowns and lock downs and you’re looking for more support, you may want to consider recovery after stroke coaching.
People that have already signed up for recovery after stroke coaching get 12 months of unlimited access a private one on one coaching thread with myself via a private forum. Inside the coaching area. You have instant access to online training materials that can only be accessed by coaching clients, you get access to courses, monthly trainings and challenges made by a stroke survivor for a stroke survivor.
You also get expert interviews that are only available to coaching clients. And mp3 is you can download for listening on the go. All trainings are transcribed to PDF for people who prefer to read and take notes or highlight important bits for reviewing at a later time.
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To find out more simply go to recoveryafterstroke.com/coaching. And now it’s on with the show. Antonio, welcome to the program Man.
Hey, Bill. Thanks for having me, mate.
It’s good to have you here. You know that we’ve known each other since 2013
That long. I remember meeting you on that day at training. And I thought who’s this character he’s very likable.
At the Stroke Foundation Training when we were training to become stroke safe ambassadors.
Are you still doing it?
I am still doing it. I took a bit of a risk just recently because I was getting to the point where I had committed to a lot of other people for a lot of other things. And what I was finding was that all that stuff was taking up my time and tiring me out.
And it didn’t leave me with a lot of time to do the things that I wanted to do. Because, you know, I’d be exhausted, I really enjoyed doing the stroke foundation talks. But at the same time, I realized it was sort of taking up my own energy and giving that to other people is fine, but not at my expense.
Okay, that’s fair enough. I know a lot of some of the other volunteers do the same. They just take breaks when they need to and come back if they can.
Yeah. So you still speaking for the stroke foundation yeah?
Yeah, I’m still doing it. I have found that the last couple of years, it’s the amount of talks I do are far and few between. And I think that’s got something to do with when they lost their funding. Yeah. That to generate sort of funding through private resources. And that’s just been a bit taking a bit of time.
Yeah, it’s really difficult because they’re completely funded organization. Usually they’re funded by the government and other private parties, but the, the program that we were on the stroke safe talks and presentations were purely funded for a short amount of time they want to, I think it was two or three years worth of funding and then when it ended, it ended.
Okay. But I like it I get a lot out of it, I have a lot of fun. I really enjoy it. It’s a good experience, it’s very exhausting, in many ways. But you know, I walk away feeling good about myself.
Yeah, tell me what happened to you, man. Why did you end up at the stroke foundation what was your path to sort of meeting me there?
Like every other stroke survivor and volunteers, they’re involved with the Stroke Foundation, it generally comes through having our own strokes. And I had a stroke in 2009. It was in my brainstem location and therefore caused quite a lot of damage. I was paralyzed neck down, and I’ve had some vision problems and some hearing problems speech. And I’ve you know, I’ve spent a lot of years working hard to regrain regain that.
So that was in 2009. So like, what happened on that day? What did you notice what was happening to you on the day? Was that a normal day?
Yeah, I was traveling with my family in Vietnam at the time. And we were moments from entering underground war tunnels. And we’re just sitting in this shelter watching footage about the Vietnam War. And the guide was just discussing this and that about it, and I began to feel weak and I excused myself and stepped outside to get some well fresh air if you like and drink some water and within you know a few minutes I began to collapse and become weak and wobbly and vision blurred and I couldn’t even stand up.
A couple of people come to my rescue and brought me over to the first day by and that was it it just took hold from there just wiped me right out and I was I went from being a healthy man to just completely paralyzed and lost all function of my body and had to be carried or dragged I was such a dead weight that I couldn’t even you know, I couldn’t even assist them in carrying me to the bus they just literally had to drag me, and then sort of pulled on to the bus and to a local hospital.
Sign’s of Stroke
Do you reckon there was there any signs or anything that you would have thought was leading to something serious?
No, the only previous sign there was which is probably about 15 minutes before And I was just about to step off the bus and I felt a tingle in my palm in my left palm and a rumble in my ears and I didn’t think anything of it I thought I was just, you know, I was probably hot and just, you know, I looked at my hands and just, you know, it’s just be hot and, who knows what it is, but that was the first sign and that rumbling ended up causing turning to, you know, hearing damage, the tingling in my left hand become, you know, losing function of that left hand and wiping out my whole left side.
Yeah, so was it what happens in a brain stem stroke because my stroke was inside my brain. Okay, so yours was in the brainstem, which is below is a sort of, like load base of the brain.
Yes. What you and I have in common Bill, which we’ve discussed is we both had something called an AVM, which is Arteriovenous Malformation. And what that is, is just, we’re born with like I guess a defect where a particular vein in our brain hasn’t formed properly and likely to bleed in at some point in our lives is fairly high and unfortunately happen to us when we were in our guess the prime of their lives.
And yes, my AVM, which has occurred, the bleed occurred in my brainstem and because our brainstem is about only this wide, all the communication that goes from the brain to the body was just suffocated by blood.
Wow, okay, so you’re in Vietnam, and you’ve had a struggle. What happened, man? What did they do for you? Because I know that that’s a bit of a challenge, right. Getting some serious medical help in Vietnam is an issue.
It’s just a nightmare. And we weren’t in a city. We’re in a little rural village that was about two hours from Ho Chi Minh City, which is previously known as Saigon. And so they just rushed me to a local clinic and it was just chaos you know that no one spoke English our families listening they were trying to ask for documentation and the doctor to try to look over me and I was just at this point I was beginning to slur my speech and losing a bit of consciousness.
And they didn’t know what was happening they couldn’t work it out they just couldn’t work it out testing you know, they’ll turn all my vitals and checking my eyes for opening and closing and you know, checking my Pulse and everything seemed fine on that behalf.
Blood pressure was good. All those things were okay, so they couldn’t work it out at that point. Then they rushed me in like a little sort of van type of, I guess what they called an ambulance.
They rushed me back to Saigon and that was just a chaos ride where I was in the back of this ambulance just getting thrown around and you know there was a nurse there with my family, my kids, my wife, my older kids in the front and it was just yeah, I couldn’t imagine it was just absolutely chaos, frightening.
And then we got to the Saigon hospital. And, I went straight in for an MRI and within, you know, half hours, I was in intensive care, the doctors telling me I’ve had a stroke. By that stage, I was just completely paralyzed. And, you know, my vision had gone, it blurred, my hearing is damaged I could just mumble a few words. And that’s where it began.
Yeah, it’s not what we’re used to with the medical model here. It’s completely different.
say different what I what I did notice, though, either look, I mean, once I was in the hospital, and in the care of the doctors, the doctors were all French. And they were just happened to be working in Vietnam.
And what I did notice, I mean, the care the duty of care was quite good. And there were things that kind of scared me, I guess, but I must admit the kindness and the the affection from the staff was just completely different than here in Australia. Like they really looked after me on that respect, you know, they weren’t afraid to maneuver me and you know, take my clothes off and do what they had to do to look after me.
And I noticed that difference when I got to Australia 11 days later, I had a rescue flight back to Australia and I just noticed the difference how I was handled by the nurses here in Australia.
Right. So it was the bedside manner over there better do you feel?
It was better, although the standard of medical treatment definitely wasn’t. Yeah, but the bedside manner was, I must admit I become quite fond of the people that looked after me.
So when I come to Australia, I just noticed there was a certain procedure that the nurses followed, you know, just, like just the way it works in in western country.
You know, I had a bit of a problem with bedside manner as well, especially at the beginning the first time I had the first bleed it was in Feb 2012. And what happened then was, I went to the Austin hospital here in Melbourne, in Australia. And at the Austin hospital, the care is amazing, right? Firstly, they’ve got the facilities everything’s right, but the doctors would turn up and they would talk at the end of my bed about me, not with me, and they wouldn’t include me.
That’s crazy saying that becauseI have actually written a story about exactly that. And I referred to the doctors as mechanics like they are looking at me from under the bonnet without actually touching me. So that bothered you didn’t it?
It bothered me, man, that was crazy. So I’ve tried to make a point of it a couple of times. But as you can imagine, you know, when you’re, you know, not in the right sort of state of mind to you know, make that an issue. And fair enough you want him to sort of care for you just let it go for a little while and I’ll let it go and I’ll let it go.
But then I six weeks later, when I had the second bleed, I went back in there. I was in hospital for three days that second time, and it was the same kind of thing. And I got really frustrated. And a friend of mine works at the Royal Melbourne hospital, here in Victoria.
And I said to him, you know, because he is a radiographer, right. I said to him look if you know, somebody that will see me that’s going to talk to me and include me in the conversations can you please organize a meeting? Because I don’t want to be involved with doctors who talk about me and don’t involve me in the decisions, you know, that are going to be needed to be made about my well being, you know, whether it’s surgery or whatever.
So he hooked me up with this amazing surgeon, Professor Kate Drummond here in the Royal Melbourne and she was just absolutely amazing. She’s just given me the lowdown she’s allowed me to make my own decisions, she’s informed me, you know, and she just became somebody that I could confide in, speak to about things and, then I felt really comfortable with at least I knew where I was at and I was getting the version of bedside manner that I preferred.
The medical help was the same that amazing, you know, medical facilities were all the same, but it’s just that the personalized touch is really important when you’re going through a really serious health condition. You know?
Absolutely. Yeah. I understand that completely. Yeah. I found that the duty doctors were the same their manner was very distant and they spoke at me rather than with me, but there was an overseeing doctor who come to the hospital once a week or so and he just had this lovely energy about him he’d come and put his arm on me and hold my hand and ask me questions.
And when he left, I just felt so much better. So there’s much to be said about that kind of treatment. When a doctor shows some kind of, I guess affection if you’d like to call it shows that they actually care about how you feel.
Yeah, a little bit of empathy.
Yeah, absolutely. I was just gonna say that for people like you and I guess myself. Having that kind of information where we can make decisions is helpful for our recovery, whereas many others, I guess, they’re just happy to just listen to what the doctors say and just take it.
Whereas I found I needed to know, I had questions. I wanted to know why and stuff like that. I wasn’t just happy with it’s because or it’s it may be this give me some details.
Yeah, I was kind of, I want to know the lot good, bad or indifferent. I want to know the details. That way. I felt like you know, maybe I could play some kind of a role in supporting my own recovery, you know, whether it was I know, through any method that I could possibly bring to the table, you know, at least now I know that there was something I could do.
And it was just an wasn’t just a matter of, you know, being in the care of somebody and handing over and being completely over the top, you know, sort of faith, everything on the table for somebody else to take over.
You know, what if that doctor is having a bad day, and I don’t want to think my doctors are having a bad day, but what if they are, and I don’t want them to make a decision. When they’re having a bad day? I think I’d rather be informed now that’s just me, you know, so I know that other people will go to the doctors and they go to the hospitals and like you said, they’ll just allow the doctors to take over take control.
And blind faith is good in our kind of does help in our model. In our medical model here in Australia, because they are extremely good doctors, we are one of the luckiest countries on the planet with regards to the kind of medical support but at the same time, you know, I don’t know, like, I don’t distrust people, but I like to test you. in a nice way. Ask you questions and see if you can give me answers, if you can’t give me answers. I think you should be doing a little bit more research.
Yeah. I think also, you know, in that state of mind when you feel like you’ve almost lost everything having some kind of, I guess control and input to the outcome of your recovery is important, not for everyone for some, and it was for me, and I’m going to tell you something.
Every time I’ve spoken to you or every so often and I’ve heard you’ve gone through an episode and you’ve had maybe another bleed and man I get really pissed off because I’ve never had my AVM treated. And it makes me worry, because I know you’ve been through so many ups and downs and makes me worry I start thinking the worse.
Oh, okay, interesting. So you’ve never had it treated but I imagine that you’re getting multiple sort of checkups regularly about it. Yeah?
I used to at the beginning but I’ve stopped doing that I just found the whole process can be quite cause a bit of anxiety so I’ve kind of have veered away from doing that through my neurologist
I’m constantly looking after myself and seeing my doctor and stuff but I you know, I must have been like, it’s been a while since I last had a checkup with the neurologist you know, I did try to have it treated but the location of it being in the brainstem was incredibly dangerous.
And when I did try to treat it, I was set up to have 11 radiation treatments and after the first two I just felt like you know, death and I put a pin on the whole procedure. I just lost complete faith in it.
Wow. So they were going to treat it by trying to zap it and get rid of it with radiation therapy?
Well, yes, so I first saw all the surgeons here at Royal Melbourne hospital and they spoke about, you know, going in and treating it, clamping it, injecting a substance into that vein that will, I guess, block it and heal it.
But they all refused to touch it because of its location. I just had no faith in it. So they passed me on to an oncologist who tried to treat it with radiation but and again, it was better that if he filled me with a lot more confidence and perhaps a little bit more human contact, I probably would have seen it through to the end, but there was that distance.
And when I was feeling really bad I tried to contact him and I just didn’t finish didn’t fill me with faith and support. So I end up on the pin and my decision. was made, I said to him, Look, you know, I’d rather live a short life with some kind of substance than a long life with complicated disabilities.
And there was no guarantee that I wasn’t going to walk away from that treatment and radiation in a worse state than I was already in, I could potentially lose my vision, there was just no guarantee.
I’ll give you a bit of an insight so that you understand the difference between you and me with regards to the fact that I had mine treated. So the first bleed was in Feb 2012. the last bleed was in November 2014. So we’re coming up to the three year anniversary off from surgery, so 2014 we in 2017, so we’re coming up to the three year anniversary from surgery.
So, in that time, I was seeing the doctors every six months every three months depending on how I was feeling what was going on. And what they discovered was that it was microbleeding every single time all day, always bleeding and continuing to cause microbleeds, the microbleeds got to the point where I was having a bad day, and then it would go away.
But then every so often, and the third time it had a really big bleed. And that’s when I went into hospital having a really bad nausea, the whole works, you know how all the stuff, got to hospital and the surgeon said, right, enough’s enough.
We’re not letting this bleed any further. We’re going to take it out now. Because the risk moved from being in my favor to now not being in my favor and now surgery was becoming the less risky option as opposed to not doing surgery.
So when I went to the hospital, and she said that I was kind of like, well, okay, you know, I’m up for that. Let’s get this sorted and let’s at least stop the bleeding and whatever comes of it comes because the bleeding could end in death or could end in an episode while driving, could end in so many different ways, you know?
So we had surgery in November 2014. And when I woke up from surgery, that’s when I had the left side, weakness. So my arm, I couldn’t feel my arm. I couldn’t feel my leg. I had to learn how to walk again. Use my arm again and all that stuff.
Yeah, That sounds very scary.
Yeah, so very different from you because you had one bleed. And what I was told at the beginning was, you probably going to have one bleed. These things hardly ever leak again. And you’ll be right.
Okay, well, I mean, not yet. It was sad to hear that you went through that but it’s also good to hear that news that it’s just completely different because I had that one bleed and I did have many MRIs following my initial stroke, so and it was never any change. It’s just over the last three or four years I’ve kind of slowed down but you know, maybe it’s worth going into have another MRI just to make sure it’s okay.
Yeah. Tell me about the MRIs. How did you enjoy going into the tunnel?
I don’t mind it. The noise gets a little bit overbearing, but I’ve had it a few different places and some have had music to listen to others, it just had headphones to block out the sound. And to be honest, man, I just breathe through it and, you know, meditate and it’s over done within half-hour.
Yeah awesome. That’s why I asked you because I couldn’t go in for a long time and I had to get sedated. Right. I used to get anxious I used to start to hyperventilate and all that kind of stuff and it was a big issue, right.
So you can go into one of those machines and waste half an hour and then waste another half an hour because there’s a lot of people waiting to get an MRI, right. So I used to tell them to sedate me.
But then that causes other problems because sedation is no good for the brain. So you don’t want to really be sedated regularly after a stroke. And then somebody has to pick you up and take you home. And you know, you lose a whole day and then you lose the next day.
So it was a big drama. So I figured that what I’ll do is I’ll work your way out of it, which was to meditate through it. And I know that you meditate. So I wanted to have a bit of a chat about how beneficial you’ve found meditation. And what what you’re sort of processes for meditation.
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like how long will it take to recover? Will I actually recover? What things should I avoid In case I’ll make matters worse?
Doctors will explain things but obviously you’ve never had a stroke before. Up Probably don’t know what questions to ask. If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you.
It’s called the seven questions to ask your doctor about your stroke. These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke. They’ll not only help you better understand your condition. They’ll help you take a more active role in your recovery. Head to the website now recoveryafterstroke.com and download the guide. It’s free.
Meditation helps me a lot, since my stroke I’ve always been interested in that side of, I guess well being pretty much my whole life and after having a stroke I’ve kind of reinforced that and began to follow I guess spirituality and meditation and positive believing and meditation helps me, the stroke has caused a bit of anxiety so it helps me just to you know, settle those anxious thoughts and yeah, any situation.
You know, sometimes it might be a few minutes when I’ve pulled over the side of the road, pick up one of my kids at school and I’ll just practice breathing. So yes, it’s very helpful.
Anxiety and Depression after stroke
Anxiety. Were you somebody that was anxious before your stroke?
No, not really. No. I mean, you know, I guess we all had some kind of anxiety. Maybe we didn’t recognize it as anxiety, but since the stroke it’s been, yeah, I’ve had some terrible anxiety attacks and panic attacks and depression and all those experiences that, you know, are all parcel of having a stroke.
Yeah, that’s one of the things a really important point that you just made, was that the not pleasant anxiety, depression, of course, right. All those things, but they kind of are part of the process of what happens to people after a stroke so as a carer, so if somebody is listening or watching this on YouTube.
And they’re a carer, they might kind of anticipate these things occurring. And one of the things that I did just by fluke or I didn’t anticipate depression, I didn’t know that 33% of people that experienced a stroke will have an episode of a depression at some point.
I just went to a psychologist, after the first time my brain bled. And I kept seeing her over the period between the blade and surgery. So for two or three years, and I found that I overcame those thoughts of depression, especially after the second bleed and then the third bleed and then rehab.
So that’s kind of why I’m sharing it as far as I didn’t experience very bad depressive moments, but how bad did it get for you? When I got bad?
It got pretty bad. I think I heard things you know they don’t really prepare you for this stuff when you’re in hospital because I guess you know it’s that I don’t want to start to put those negative thoughts into your mind, focus on getting better trying to achieve the you know a strong recovery, learn how to walk so any doubt they clearly try to avoid.
But once you become an outpatient and you leave the hospital as an inpatient you, you start to learn things and you know, there’s some conversation about potentially experienced depression and you have access to psychologists at that point. And it didn’t really hit me depression.
I mean, I was going through, I wouldn’t call it this depression but more fear and, and dealing with the emotions attached to having a stroke, so hadn’t really formed into depression at that point, but then it hit me probably about a year and a half.
Lighter with the reality of what my life was, or is setting when when I had when I was little things when I was faced with little things like, you know, crazy but having a button your shirt, tie your shoe laces, walking out the front door holding something and realize that you can now lock the door because you’re one good hand is occupied.
So you need to put stuff down. It was just, it’s crazy. But it was those little things, those little realities that you started to chip away your hope and your spirit. And then it just sort of evolved into depression.
Yeah. And it makes sense how, how when people compare how their life was before a stroke, and now they’re comparing it after how that could be depressing. That just makes sense. But if you focus on it a lot, well then it becomes more and more depressing. And sometimes it’s hard not to focus on it a lot because it’s happening to you every single day. When you want to tie your shoelaces, when you want to brush your teeth when you want to get in the shower when you want to drive a car.
Absolutely. It’s highlighted but the you need to go through the process you need to do you know, I know it’s really hard, it takes time, but it’s really hard to see, I guess through see through the woods when you when you’re in the middle of it, but you can’t get through the process and get out to the other side.
And then you’re able to look back and realize it’s a long process. I think being a stroke survivor and recovering from a stroke or any kind of serious illness. It’s not only about, you know, getting over what has happened to you, like, you know, losing a limb or the function of a limb or, you know, relearning how to walk.
Emotional Impact Of Stroke
It’s not only those things, but it’s the emotional impact that takes probably as twice, three times as long Long to recover. And they’re the kind of things you don’t really learn about or not really educate you, but you just learned it by going through it, and realizing that you know, the effects it has on you emotionally how you, you know, you’re watching TV and you want to cry over something really silly or, you know, just affection is overwhelming all kindnesses is just, you know, it’s all those little things where emotions are, I guess, exaggerated that you start to realize that how it’s affected you emotionally.
Yeah, I think that’s one of the big things for me. I became really emotional cry at the drop of a hat, watching TV, all that kind of stuff. And didn’t understand that didn’t know why it was happening. But I don’t know for me, you maybe you can explain your version of that.
But for me, it just seemed like I was tapping more into my heart than I had in the past. And I don’t know why I was but I just was maybe because my brain was sort of offline for a while. Yeah. I had nowhere else to go. So I was just reflecting on all things that were important to me or mattered to me. Maybe because I thought I might die and all that type of thing, I’m not sure.
But it was a really emotional time for me. And every once in a while, the emotions do still creep in, they still do catch up, and they still do, you know, say, we’re still normal. We’re human over here, you know, you can have a bad day and all that kind of stuff. So I cry in public, I cry when I’m doing public speeches. I cry in front of family and friends. Just happens now. And now I don’t apologize for it. You know, it just is what it is. Is that similar to how you sort of experience it?
Absolutely. Me too many I you know, it happens every now and it’s been eight years for me. So, you know, I’ve overcome a lot of those emotions, but I still get caught out. You know, I knew recently I was with a friend and kind of a new friend that I’ve made and I was discussing some of the, I guess some of the hardship I went through and, you know, I felt like crying.
So it’s there. And then two minutes later I was laughing uncontrollably like I could just it was nothing to laugh about, but I was just laughing. And I just know that it’s part of this brain damage. It’s just part of it so yeah, it’s it takes a long time to adjust to.
Yeah, I’m talking about things that you laugh at right now. I know that a lot of people, I was really lucky. So when people look at me, they can tell that I’ve had a stroke. Now that’s a good thing and it’s a bad thing. It’s a good thing because I don’t look like I’ve had a stroke but it’s a bad thing because I experienced internally, the same challenges that people who look like they’ve had a stroke are experiencing.
Symptoms Of Stroke
So fatigue, weakness in my left side in my arm, constant tingling or burning sensation on my skin, you know, balance problems, all that kind of stuff. So because I don’t look like I’ve had a stroke trying to explain something to somebody is a real challenge, right? Because the eyes are getting you’re trying to deceive me, you know, like, my eyes are looking at you look fine.
Laxatives After Surgery
So one of the interesting things that I did laugh at while I was in hospital was that when I couldn’t walk yet, before I went to rehab and did a month in rehab, I needed to go to the toilet. After surgery, it had been two days and I hadn’t done a poo. And the nurses said you haven’t done a poo, right?
Well, we’re gonna give you a laxative and the laxative will help get things going, you know, so you can go because it’s really important that you go, alright, I understand no problem. So they got the ball rolling they game of the first laxative day one. Or by day two and it didn’t work. nothing had happened by the next day. They gave me another laxative.
So now the laxative took hold and it started to work and I really, really needed to go to the toilet and I press the buzzer on my bed to get somebody to help me go to the toilet and they weren’t coming. So they weren’t coming because they were busy with somebody else somewhere else in the hospital right?
And I needed to go I couldn’t wait for them to come so I kind of dragged myself to my wheelchair, hopped to it and jumped in and tried to get to the toilet. And while I was getting to the toilet and opening the door as I was about to sort of turned around into the, into the toilet the nurses came in they said to me, what are you doing?
And I said well I’m trying to get to the toilet etc. You guys didn’t come. I don’t want to soil my pants. I don’t know what’s worse, you know, going to the toilet and falling over or soiling my pants, having you guys to clean it up. So I mean, I’m heading into the toilet, they sat me on the toilet and now they’re standing there.
I’m like, Alright, go. And they go, No, we can’t leave. I said no you have to leave and I and they’re like, No, we can leave. We can leave you on your own because if you fall over and hurt yourself, we’re responsible. I think I argued with him for five minutes while I was desperately trying to hold on. So I didn’t have to go to the toilet in front of them while they were in there. Why do you talk to somebody about (inaudible) doing a poo.
It’s funny, funny now, but not when you were going through it.
No, it was a disaster when I was going through it. But thinking back now it’s kind of like, what we’re going to talk about the weather? Like the flowers, like what?
Yeah, I know. I’m hearing you mate I had quite a few of those experiences. Yeah. But you know, you have to have your dignity in at reception when you get to hospitals. When you go through something like a stroke. Yeah, I had that experience. One of the first I wore a diaper.
Because it was exactly for the same reasons, I was, you know, showered and manhandled by this massive, large black African man who sponge me down and gave me this beautiful shave and dress me in these nice fresh pajamas. You know? What do you talk about when you’re naked and there’s a giant black man dressing you?
How’s the kids?
I know it’s, it’s good to laugh at it now though.
Yeah, absolutely. And I share that because I know there’s gonna be people watching who have gone through or going through it now, whose carer’s are probably going through it right now. And let me tell you, when you look back later you can laugh about it, you might as well laugh about it. Now, if you can find a way to laugh about it now just laugh about it now, man who cares? Why wait?
Yeah, absolutely. Laughter was real handy for me. I found that, you know, even when I was in rehab and just starting to learn a tour guide, you know, be making jokes and winding the doctors up and the nurses and just you know, bringing a little bit of light heartedness to the whole ward.
I found it was always so seriously and I, you know, no matter no one part of the therapy we would meet in, I guess what I call the gym, kitchen, and The patients would have to make their own breakfast and get their own coffee was just part of the therapy process. And when we sit around the whole table is just doom and gloom.
Everyone be talking about how miserable they are. And I went right guys, no talking about strike. Let’s talk about life living. Let’s talk about what we did before. We love all that kind of stuff. Just you know. And just that’s that was the rule. And I found that helped.
Yeah, and they would have found that a help. And that would have been an amazing thing to experience. Somebody just say, let’s talk about something that’s good. Because the rehab hospitals can be a tough place to be in man, even if you’re somebody who knows you’re going to get out of there.
There’s a lot of people that don’t get out of there as quickly as you might have, as I might have, you know, so bringing laughter into those situations I think is an awesome an awesome thing. Why don’t you tell me you mentioned a little bit about what you did in the past, right? So what were you doing before? You’re a family, man. You’ve got kids yeah?
Yes, I’ve got three kids. I was married, no longer married. I’ve had a few different. I’ve done a couple of different things in my life. And I’ve been a musician most of my life. But leading up to the five years prior to my stroke, I worked in construction as a project manager, sort of slash building supervisor.
I did that for quite a number of years, and I’ve done then the stroke just brought that to an absolute end. So I had a busy life. I was, you know, active dad, working a lot of hours. You know, like most people live in that lifestyle.
How old were you when you had the stroke?
I was 38.
Yeah wow, I was 37.
Now I’m 47.
I was 37 man.
I heard that AVMs. Statistically are more prone to bleed between the ages of 30 and 40.
Oh my Lord, I didn’t know that.
Yeah, that’s what I heard. Yeah, but statistics, what do they mean? You know, really? I know, you know, before I had an AVM, I didn’t know, the illness existed. And since I now I know about four people, you’re one of them and a couple of others who are stroke survivors that are a part of a Facebook group. Who also had AVMs. And those two were in their late 20s when it happened to them.
Doesn’t discriminate any age, man. So you’re a musician. What, did you play or what were you guitarist?
Reinventing Yourself After Stroke
Yeah I was a guitar player. It’s a bit of a long story, but the stroke affected the function of my left hand so I have limited use and guitar playing. It’s just not possible. So, what I did was a few years into my recovery, I bought myself an old piano and just began sort of playing and Tinkering about one handed and I guess once you learn music, the notes and the hearing and understand is all the same thing.
So transferring that information from one instrument to another isn’t so hard to do. For someone that’s been playing for a number of years. That’s why you hear those stories where you know, this musician play, you know, 10 different instruments is because all the notes are the same.
So I just began playing one handed piano and composing and writing and using my stroke experience to create music and then sort of just, you know, it’s crazy because I did my stroke gave me an opportunity to dive back into being a musician and composing and I didn’t, I wasn’t bogged down with, you know, the day to day life of having a you know, a day job and all the stresses that come with it.
So you’ve got more time to do stuff around music and you’ve turned that into actually a bit of a way to make some money, right?
Yeah, that’s right. I’ve I’ve so where I’m sitting right now is a small recording studio. So I’ve, I’ve turned that, you know, that simple idea of, you know, being a guitar player having a stroke and then transferring that musical understanding to a piano and then, you know, and it slowly began to evolve. I was writing songs and you know, I had a laptop and we recorded and then I bought more equipment and it just grew.
It took about two or three years and then I started and then I developed this small recording studio and I began advertising and producing music for other artists. Now I have a small portfolio of artists that I work with and they come in and record music and I produce for them and you know, and I do projects and poetry, record poetry and whatever comes my way and that’s that’s what I do myself these days.
That sounds like It could be a lot of fun. So in the back, you’ve got some stuff stuck on the wall. That’s for making a good sound.
That’s just acoustic treatment, it’s just to manage the sound because where I’m sitting is the control room, not the recording room. And when I’m listening to what I’ve recorded, I need to be able to hear it and even balance and by having that material of wall, it minimizes world reflection.
So therefore, what I what you hear is the true sound, you’re able to manage it. Therefore, the end product is added right at the right balance because you’re not competing with reflecting sounds during the process. That makes sense. makes sense to me.
Now I actually understand what that means. So what I should have in the background here is a few egg cartons on the back of my wall as well. Yeah, yeah. I started with a Carlin’s in the laundry. That was my First vocal booth was in the laundry with egg cartons on the wall. That work, the idea is to diffuse the sound with softer edges. That make sense.
So what could work is as well as like, you know, maybe placing the microphone in, in front of a wardrobe where there’s clothes that are suspended. Uh huh. Yeah, I mean, so that when you’re speaking into the microphone, it diffuses the sound in the back of the microphone.
That makes a lot of sense. It does to me now, because I’ve started to become interested in this. It makes sense, but I wouldn’t know what to do. And you know what? This is not about being the best kind of recording studio in my garage at my home. It’s just actually about having a reasonable quality for people listening.
So it’s really interesting. Maybe we need to get together and I need to get some get you to advise me and help me set up my home studio mate.
Happy to help mate. Like you said, but it’s It’s only four to create podcasts. But you just by doing some inexpensive little tweaks, you might get a little bit of clarity in the sound. Which is more pleasant for the listener to listen to.
Parenting After Stroke
That’s it. And that’s what it’s about it is about the listener. And so is this podcast and this episode, right? So I want to touch on a couple of things. You’re a dad, and you’ve got three kids. So tell me a little bit about the experience that your family went through when their dad is having a stroke man and you know, could die and going through all the stuff that you went through? What was it like for them? Do you know? Did you speak about it?
Yeah, I did speak to them. But it was crazy. Because when you’re obviously most people would know, but when they’re a father the thing you do is protect your children. So here we are in, you know, this strange foreign country, Vietnam and all of a sudden I couldn’t. I wasn’t there for them anymore.
So and through the the panic, you know, I kept asking my wife, are the kids are okay? And she was just doing all she could to make sure they’re okay. And then looking after me. Um, luckily we had some good people that just happened to be there by chance that assisted us through some of those scary moments.
But yeah, it was absolutely frightening even, you know, being in intensive care and the visiting hours, my younger brother, within a few days of having a stroke, he flew over to Vietnam to to learn to have a helping hand. And yeah, it was just it was crazy. And that went on for years, you know, this, once you lose the ability to, I guess provide on a financial level as well as an emotional level of physical level as a father apply effects, you know, he it makes you fills you with guilt.
And, yeah, you know, again, another another process you’re just not prepared for it takes years to kind of come to understand that. A lot of those things not as important as is to be a good dad and a loving dad and being there at the very least bothered. So yeah, that’s what I focused on.
Yeah, that’s interesting because I feel a little bit of guilt as well. Right. So one of my sons is 21. And he’s a musician as well, so we were able to be a part of his life in a way that he really appreciated, which was to take him to shows that he was playing when he wasn’t able to get there, you know, to go and listen to him play with his band at a pub or whatever.
So we got a lot out of that. And he got a lot out of us going there. So even though this whole process started for me five years ago, we were still able to turn up and support him while my youngest son, well, he loves being out and about in nature, right, so camping and all that kind of stuff.
But that’s become a lot harder for me, since I’ve experienced this right so now to get ready into gopher camp, for me is a big drama because ultimately Get it, I’m really exhausted, then I gotta say, yeah. And if I’m not there for a long time, like it’s difficult, so my left side gets a lot colder than my right side.
So if we go to camp, and it’s a cool night out in the bush, like, it’s really uncomfortable for me to be out there. And I’ve, I’ve been, I’ve really enjoyed sort of going camping with him. But we haven’t been able to get enough to go out there enough because I’m not as resilient as you know, somebody who hasn’t experienced a stroke.
And it makes it a lot harder for me to go out there and stay out for longer periods of time. So I’ve missed that. Connecting with him in that way. And that’s really made it difficult for me now, I know it’s not my fault, but when he’s a child at 12 it’s really difficult for him to understand that. And as well, when he looks at you and he says, Dad looks fine. It’s a bit harder to convince a 12 year old that I’m really struggling when I’m suffering, you know?
When you look okay, yeah, I understand that completely.
Yeah. So it’s a problem so, I did the whole thing that you just spoke about which was be there, show them love tell them you love them, give him a hug, give him a kiss, do all that kind of stuff. But what else can you do you know you if one of the unique other tweaks that you found that might have worked for one child that didn’t work for another?
Well, I see. I guess the age gaps between my kids when I had my stroke the two older ones were at that time five and eight, where as my little one she was only 10 months old. So she doesn’t really she hasn’t seen a difference. Yeah, she doesn’t remember the previous me Yeah. And but whereas about five in and well five year olds at a time and age which are now 14 and 17.
They remember you know, going swimming and you know, doing nice things we are thrown off of my shoulders and yeah, you know, I go to the parking guff or bike riding kicking the ball around. I remember some of that, so many my little one doesn’t remember that so I’ve, the way I’ve been able to compensate, I guess is do things with her that she could be, you know, getting on the floor and playing Barbie dolls with her.
Just because kids measure love by time being with them, you know, showing the affection that they adore that, you know, my daughter loves that, but it’s about time. It’s just it could be as simple as sitting down and watching a film that she wants to watch together and show her that you’re, you know, you’re cooperating with her on her level rather than, you know, on your level.
So and I found that work with Maddie, my older two, I guess they they understood a little bit more and as they they grew, I mean look, you can see that I’m a stroke survivor. The way I walk like my kids can tell they know like, I get tired easily they see it. So we talk a lot about that.
And I saiy to them, you know, I love to do that but It’s too tiring or, you know, okay, we’ll go to the beach, but I can only stay for, you know, three or four hours because it’s just too long for me. And they completely understand that and now that they’re growing, I’m seen them, they’ll say things like I did, but you’ll get tired or dead. If you’re too tired. That’s okay. We’ll do it another time or you know, so they’ve come to understand it really well.
But yeah, you know, if I could, you know, that’s one of the things that took a long time to, I guess get over and incite guilt. And, you know, I want to be there and, you know, and do all those things kick a footy around and, you know, go the park and ride a bike, I miss all that stuff. But, you know, I’ve had to substitute it with other other good ways. Like I’ve said,
Yeah, you know, what was interesting when we spoke last week about a week ago, was you said something that was interesting, and I think a lot of people who experience a life changing health condition go through, unfortunately, separations and divorce. And you did you go through that after your stroke at some point? So after How long did did you guys sort of go your separate ways?
It wasn’t that long. But there was, you know, like all separations and divorces, there’s obviously a process. It doesn’t just snap and you know, suddenly separated, it was a process of breaking down and not communicating and growing apart. And I think that sort of began, I mean, I guess, to be honest, there was, I guess, some kind of uneasiness through the marriage.
The stroke was as I like to refer to as the straw that broke the camel’s back. And it took about three months after the stroke that it just began to get a little bit difficult and there was a separation period and then following the separation period after you know, so many months, six or eight months that it became a divorce.
Now you guys do a really good job of managing this divorce, right? And then looking after your kids together, it sounds like you guys have got a really good arrangement and understanding about co-parenting.
Yeah, we have we work, towards doing that, we still communicate, you know, we’ve even, you know, had a get together, which was only like six months ago we went to Burma. The whole fam my ex wife, myself, the kids, and you know so we truly work at how to being friends what’s the point of not being friends? We’ve got kids together, we need to be in each other’s lives. We need to communicate. So, you know, I’d much rather have peace, than, you know, unhappiness in that in that situation.
Now, there’s another thing that you told me which I found really amazing, actually. And I never considered it as a benefit is that now you have the kids half the time and your ex-wife has the kids half the time. And when you have the kids, it’s really tiring for a stroke survivor to go through the process of arranging, you know, just being a dad for three amazing energetic kids right?
And then when they’re at their mom’s, you get a time to unwind and relax and come back to yourself and regain your energy. Right? And that’s something that a lot of people wouldn’t have expected as being a benefit of co-parenting children.
Absolutely. and that, like you said that time to unwind doesn’t necessarily mean rest. It means time to do your own thing. And, you know, step away from just being a parent and be able to do the things that make you happy for your own purposes. And that encompasses being a parent, but so it gives you time to separate yourself from those, you know, I guess those responsibilities and you know, pursue the things you love like music.
And then you know and that that brings you energy, the things you love the things you enjoy doing brings this sense of purpose this happiness, this and all those positive things bring you energy and you’re able to overcome fatigue through those channels. And yeah, and that gave me time to, you know, enjoy my kids a lot more when I felt recharged.
Yeah, rather than being constantly tired, and constantly trying to ask them to quieten down or pick up after themselves or just be, you know, playing the dad role. You can actually just take it easy for a few days and then get to see them when you’re not so grumpy.
Yeah, you know, because you’re with the kids 24/7. So you’d have the challenges of days where you just need to shut down and it’s hard to like you said, I’m sure It’s hard for you to relay that information to your kids when they look at you and you seem perfectly fine. But your brain just needs to just, you know, go into a quiet place and let your body recover they can’t see it visibly, but that’s how you feel.
Yeah, it’s difficult to explain to anybody, my wife, my kids, people around me everybody, right? So, I suppose, you know, sharing this type of information, maybe it’ll put some people will come across it and it’ll make a difference. They’ll understand, like where we’re coming from, rather than sort of, you know, having no idea of what it’s like to be around somebody who’s a stroke patient or a stroke survivor. You know, what’s interesting, we also spoke about sound and how noise can really tire you out and interfere with, you know, your energy levels.
Now, you are involved with music and that makes a certain amount of noise. Now is there a difference between that type of noise and the standard running around TV Kind of, you know, house kind of noise. Is there a difference? Do you notice it?
There is a difference I find that there’s some defining differences. And I find that first of all, yeah, it is still fatiguing, working with sound and you know, and I can only have a timespan that where it gets too much, you know, like, maybe four hours. You know, if I’m working with a client, I don’t really work more than four hours, we’ll keep our sessions at four hour maximums.
But the difference it also is when it’s background noise, like noise that you’re not paying attention to? It becomes a little bit overwhelming and irritating it’s like something just picking at the back of your brain. So for example, if if I’m sitting on the couch and the TV’s on, but I’m not really watching it and I’m maybe I’m on my phone, doing something on the internet.
I find that background noise of the TV really irritating. SoI’ll mute if I’m doing something on my phone. And that’s, I guess that’s the same for you know, like family noise, kids running around screaming, whatever, you know, pots and pans been banging around the kitchen, all those kind of noises, it’s background noise that, you know, sort of eat away at you and creates a sort of, you know, brain frazzle and fatigue.
Yeah, and my experience as well. It’s really amazing how the brain gets impacted. So I imagine that people who haven’t had a stroke are also experiencing that tiredness that noise creates, but they’re not aware of it because they have a relatively healthy brain. Yeah, but it may be sort of also interfering with their energy levels, but they’re just not totally aware of it as we are or as sensitive to it as we are.
Yeah, it’s like I think, you know, we’re just having a brand new tour. It’s just everything is just so good. centroid, you know, it’s just amplified, same person with would feel we feel it the same, but just it’s such an extreme amount and volume.
Yeah, now you’ve been able to get back to driving as well. So was there a time that you weren’t able to drive?
Driving After Stroke
Yeah, yes. The first, you know, it’s probably took about it in about 10 months or eight months, nine months to get back into driving. At the beginning, I just couldn’t like you know, it’s like my brain was locked inside this tube. I could not make sense of the outside world for for many, many months. And I even remember, the very first time I went for a drive in, my dad’s car as a passenger.
During my rehab, he took me out for a day or whatever it was, and just that experience of moving in a car was just like I was in a time warp. Things were just I can’t explain it was just madness so and the brain just it just took time for it to adjust and understand what was going on on the outside world.
And then you know, like about nine months in I was bugging my occupational therapist for me because I needed to reset my driving test where lots of people who have brain injuries do and I just bugged her and said I want to go over to drive I’m sick and tired of you know text being texted around and she’s like not not you know ready for you’re not ready for it.
Just put my name on the list and I’ll have a go at it if I fail then I’ll know I’m not already it was an 8 week wait waiting list and like I was a pain in the ass. I kept bugging and bugging and I said I want to drive for Christmas is only four weeks before Christmas. And then we’ve got the four week break and you won’t be driving til April. Again, just put me on the list. And then if it happens, then what do you know? Two weeks later, I get a phone call. Did set my driver’s test? And it took two? I didn’t pass. I took two lessons. And and then yeah, got my license back.
Isn’t that amazing how much of an independence you get back when you’re able to drive and how you stop relying on people. That’s one of the things I remember, you know, I had my drivers as well, my dad, my brother, my wife, everyone was driving me wherever I wanted to go. I felt such a burden when I was asking people to ring me, you know, to come over and drive me because I had to go, I have to go and fair enough on their terms as well, not just on my terms, I need to go there today. I needed to go on their terms when they were available.
And I didn’t enjoy asking, but I know it was necessary to ask and I didn’t feel bad about it, but it was kind of like crap, you know, I wish I could just drive you know, and I was really meant to get back to driving as well. So I really by heart goes out to the people who lose their independence because they can’t drive.
Yeah, I have friends drives, for other friends who have not been able to get back to driving because of their circumstances. And it must be tough. But I also believe that that’s a sign that drive to get you dependence back is I guess a bit of a sign of the spirit within that person who’s determined to get as far as long as they get along this stroke journey and recovery. It’s so easy to surrender, go you know what this has happened and I’m just going to rely on taxis and people, you know, drive me around, but yeah, that wasn’t enough me. I did my independence back.
Yeah. So tell me was there any modifications needed to be made to your car or what type of modification?
Very small one modification Well, not even about a modification. I did just get a bolt on spinning wheel on the steering You know, those you know, you can imagine those. They are handled with one hand.
The bumper cars have a mod, dodgem cars.
Yeah, that’s it. I’ve just got one of those on my vehicle. So, I can drive one handed but my left hand is you know, I would say it’s about 25%. Good. I’m able to steer and I often steer the car with my left hand just as a bit of I guess a bit of a practice. But yeah, that’s the only modification.
So your left hand you’ve got a challenge with your left hand, your left foot Can you feel it? Do you have any pins and needles or anything like that?
The left side of my body is really tight. And that intense sort of pins and needles. That my left hand is often cold. There’s numbness. It’s crazy. It’s like, although there’s numbness but there’s this heightened sensation.
At the same time. That’s me, right? So, when somebody touches my hand gently It really hurts. But when you touch it heavily, it’s numb.
Yeah, it’s kind of things like I, you know, I could feel the slightest thing but then, you know, I’ll put my hand on the hot plate and not feel that it’s burning until it hurts really bad. You know?
Sorry for laughing people listening, but it’s just also funny. Sorry, but that’s what happens to me. Same kind of thing. And I can’t help but laugh when I burned my hand. And it’s because I didn’t notice that I was holding on to something that was hot for a little while. It’s like one split second longer than (inaudible) and it’s just enough to make it terrible.
Yeah absolutely that’s happened that happened to me too.
Man. I really enjoyed actually getting to know you being your friend and bumping into you from time to time. I really love your story I love you get up and go, I love your fight. I love your spirit. I love your brutal honesty about, you know, what you went through and what it’s like and the challenges.
It helps me feel better about my situation when you talk about your situation because I say I’m not alone. And I never want that for you. I want you to feel all the things that you feel because I know what it’s like, but do you know what I mean, it’s still kind of helps me to understand that there’s another person that gets me that’s kind of what I like about our relationship amongst other things.
Thank you, mate, you know, it’s really important that people like you and I and others who go through these kinds of experiences connect, to help each other along the journey and then, you know, then pass it forward. I you know, I often reach out to others and, give them my perspective on the experience and hopefully helps them.
Because, you know, it’s a hard slog, there’s so many things you have to deal with the depression, all that stuff along with trying to, you know, recover. So by hopefully, you know, passing it forward, it helps them avoid, like you said, going through the pitfalls that we’ve gone through.
Yeah. Awesome, man. Now tell me where can people find out more about your recording studio and the work that you do, especially if they’re in Melbourne, right? And they’re an artist who wants a little bit of studio time and a little bit of production? Where can they go?
And you can find my studio online, my websites down now but you know, there’s a Facebook page even if you google Studio Four99 and that’s studio, the word Four and the numbers 99. So 499 is just my address. And yeah, so that’s the business studio name. And that’s where that’s how you’ll find me. Often, you Google that and there’s links to music that Ive have created bands that have been involved in and yeah so there’s no escaping me. We live in a big world of the internet.
They’ll find you somehow if they want to find you. I’ll put a link to your website on the notes of the show as well. Is it going to be back up and running soon and the Facebook page?
I haven’t haven’t got it up not sure when I’m going to get it up and running. But you can either do that or my Facebook page. My studio facebook page. The reason my website is down is just that I found that it wasn’t the source of my I guess my client base never really come through the website. So I just decided to pull it down and rebuild it and focus on it another time and I haven’t got around to it.
I know the whole I haven’t got around to it thing you’ll get around to it at some point, man whenever the time comes. That’ll be fine. Antonio man, it’s been amazing having a chat with you. Thank you so much.
Thank you very much.
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