Recovery After Stroke

Recovery After Stroke

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Recovery After Stroke episodes

  • The Brain Injury Solicitor – Laura Barlow

    When a brain injury is caused by negligence you may need the help of a brain injury solicitor.

    Socials:

    www.instagram.com/thebraininjurysolicitor/
    linktr.ee/TheBrainInjurySolicitor

    Highlights:

    02:14 Introduction

    03:11 Brain Injury Solicitor
    10:07 Common claims
    18:01 Claim purposes
    27:08 Extent of brain injuries
    34:57 Taking too long to get support
    42:17 Grounds for negligence
    44:53 What should I do first?

    Transcription:

    Laura 0:00

    I don’t think anybody really wants to go through a legal process to get compensation. But if they’re in a really difficult situation, you know, they’ve lost their income, they’re really struggling, they haven’t been able to get the rehabilitation that they really need. I mean, there is obviously some provided and after use before an injury, but it often doesn’t go far enough.

    Laura 0:24

    And so I think that people do it more out of a need to be able to continue with their lives in a full a more full and meaningful way. And the way that damages are calculated, I briefly touched upon it a minute ago. There aren’t any and the press will make you believe otherwise. But there are no lottery wins.

    Intro 0:54

    This is the recovery after stroke podcast, with Bill Gasiamis, helping you navigate recovery after stroke.

    Bill 1:06

    Bill from recoveryafterstroke.com This is Episode 122 and my guest today is Brain Injury Solicitor Laura Barlow. Laura is an associate in the adult brain injury department at Bolt Burdon Kemp a law firm in the United Kingdom.

    Bill 1:23

    She works solely on adult brain injury cases and primarily in cases where the client’s brain injury has been caused or contributed to by clinical negligence. Now before we get started, if you have ever wondered what else I can do to help you with your stroke recovery, you should know that you can now get recovery after stroke coaching right from the comfort of your own home.

    Bill 1:48

    I too am a three-time stroke survivor and a brain surgery survivor and I have built for you what I was missing when I was sent home from the hospital in the hope that you don’t have to do stroke recovery as tough as I did.

    Bill 2:00

    Support packages give you access to a variety of tools 24 hours a day, 7 days a week so that you can also work on other areas of stroke recovery, that you don’t get the chance to at physical therapy or rehabilitation.

    Introduction


    Bill 2:14
    With tailored support available for less than $8.50 per week all recovery after stroke support packages, bring stroke recovery to you in the comfort of your own home. to try out recovery after stroke support and see if it is right for you.

    Bill 2:28

    You’ll get the first seven days free, as well as a 30-day money-back guarantee no questions asked. As a bonus, you will also get to face to face zoom support calls with myself to take your recovery to the next level. So go to recoveryafterstroke.com/support to sign up.

    Bill 2:46

    It won’t cost you anything for the first seven days. And you’ll get a full refund. If you’re not happy after 30 days. You have nothing to lose and everything to gain. And now it’s on with the show.

    Bill 3:06

    Laura Barlow, welcome to the podcast.

    Laura 3:09

    Thank you.

    Brain Injury Solicitor

    Bill 3:11

    Thanks for being here. This is called the recovery after stroke podcast. That means most of the people have had a stroke and have some kind of brain injury. So when I came across your Instagram, I thought I better reach out to Laura because Laura is the brain injury solicitor. And I thought what is that? Like how can there possibly be a brain injury solicitor? So can you explain to me what it is that you do?

    Laura 3:39

    Yeah, of course. So I’m a solicitor in England, Wales. And I specialize completely on cases where somebody suffered a brain injury, either through an accident or negligence. So it might be that somebody has been in a car accident or they’ve had an accident at work, or some of our cases, through medical negligence, people have suffered a worse injury than they would have done.

    Laura 4:11

    So for example, somebody might have had a stroke, and they haven’t had treatment in a good amount of time. And that can sometimes result in a claim for negligence. So I deal with all different kinds of cases. But the one thing that all my clients have in common is that they’ve suffered a brain injury.

    Bill 4:28

    That must be challenging, because your clients all have had a brain injury, which means they might have trouble with memory, with speech, with cognition with all these kinds of things. How do you communicate with them? What their desires are? About what they need after a brain injury?

    Bill 4:49

    I can’t imagine myself after my second bleed, having a communication with a solicitor and being able to instruct them on what my needs are and my stroke, and challenges that I’ve experienced were not due to negligence. But if they were, how do I even start that conversation with somebody to help me?

    Laura 5:09

    Is it your right is it’s really difficult and many of our clients have a trusted family member or friend, or their spouse that actually act on their behalf or may stand, if a person doesn’t have the capacity to do that by themselves, which often with brain injury, they don’t, they can have somebody who’s close to them to do as much as they need done for them in terms of the day to day, things on the case, explaining what happened.

    Laura 5:44

    And so, we have a very flexible approach. And we completely appreciate that, because we deal with people who have suffered brain injuries every day. So we know that every brain injury is different, and every brain injured person is different.

    Laura 5:58

    So we just do whatever we can to accommodate, and that is often somebody else speaking on that person’s behalf. Or it can be just making sure that, you know, we try to speak in ways, which is easy to understand. And we try and simplify things as much as possible.

    Laura 6:21

    And we can take as much time, as you know, as, as a person needs to, to go through things, because often in the cases, things can be quite complex. And so it’s just really yeah, being available, being open to the fact that our clients often do need extra support. And we appreciate that and we do whatever we can to make it as easy as possible.

    Bill 6:51

    How early in the process, do you find people come to you, so brain injuries happen, and then there’s an amount of time that that person spends in hospital and in rehabilitation and someone? How soon do people like yourself come to be involved in the case and start supporting people who are recovering from a brain injury,

    Laura 7:16

    It can be straightaway, depending on so sometimes you will have somebody that’s been injured very severely, and their family members will be looking for help almost straight away, and we can get involved, you know, as soon after as it’s occurred. But often, with cases, especially in clinical negligence cases, I would say that there is a delay.

    Laura 7:41

    Because sometimes people don’t even, it’s not till sometime later, that they start to think, oh, that didn’t seem quite right. I wonder whether, you know, something went wrong, and, you know, people with clinical negligence, which if somebody has a stroke, you know, you don’t always know what’s happened to you.

    Laura 7:54

    And, sometimes people will get their medical records before approaching us and think, about whether they feel that something might have gone wrong. And often they don’t even know until a long time later. So it can be but we are sometimes instructed years after the event, when somebody has actually thought, well, I just don’t think this is right, I really want somebody to look at this for me.

    Laura 8:41

    And the general ruling for cases in England and Wales is that you have to bring the claim within three years of a negligent event occurring. But there is there are some exceptions to that. And if you had no knowledge that there was any negligence, and it was reasonable for you to not have had that knowledge, then the time starts a little bit later.

    Laura 9:06

    There’s also you know, if people don’t have the capacity to bring the proceedings themselves, and that time limit can be sort of waived if that person really couldn’t have brought that case by themselves, and they have to rely on somebody else to do that for them. So yeah, it can it can vary a lot.

    Bill 9:28

    Yeah, it sounds like a really interesting space, people who break a leg at work or in a situation where there may have been negligence, often they have a broken leg. It’s obvious, the healing from it, they’re immediately impacted, and they can make a decision around that.

    Bill 9:46

    What are some of the things that people try to receive as compensation after they’ve claimed because I imagine the first thing that comes to mind for people is you know, let’s get some money. See if we can pay some bills all that time. But what are some of the other things that people claim for or request?

    Common claims


    Laura 10:07
    That’s one big part of the case called quantum. And so when usually, once we’ve dealt with liability, then we start looking at quantum. And, well, there are a number of things that come into valuing a case for damages and what people will need.

    Laura 10:25

    One of the most immediate needs, from my perspective, is rehabilitation. And I know that you are very focused on that. And I mean, all of the research shows that the earlier you can have rehabilitation for a brain injury, the better recovery you may make if you can get that sooner rather than later.

    Laura 10:49

    So physio therapy, speech and language therapy, occupational therapy, lots of different therapies, that people will need following a brain injury to get them back living the most meaningful life that they can following an injury.

    Laura 11:12

    Loss of earnings. So if somebody was earning previously, and they’re no longer able to work, and that’s because of the injury, then that will be part of the case, one of the largest parts of compensation in a lot of our cases is for care, and support going forwards.

    Laura 11:32

    So especially for people who have suffered really severe brain injuries, they might need 24-hour care for the rest of their lives. And if they’re, you know, at any age, but if they’re a young person, they’re going to need that care for what, like 50, 60 years. And so we have to work out what that care will cost on an annual basis.

    Laura 11:55

    And then usually on those cases, they don’t receive all that money in one go, they will receive an annual payment for the cost of their care, and then the payment that they receive each year goes up according to what care costs so they will get that for the rest of their lives.

    Laura 12:14

    There were a number of different things for equipment that they might need now and in the future. So when we look at brain injury cases, and we say them we have to basically predict what’s going to happen for the rest of that person’s life and what they’re going to need in terms of equipment, care, therapies. And it’s a real job, we have to get lots of experts to tell us what we think that person is going to need for the rest of their life.

    Bill 12:46

    Yeah, it sounds extremely complicated. And it’s great that somebody is out there trying to unpack for somebody who’s been injured. Unpack what it is that they’re going to need to support them for the rest of their life.

    Bill 13:04

    That’s amazing. But for me, there’s this underlying thing you hear about people, and we’re becoming a litigious society. In most Western cultures, I know America is very comfortable with the process of suing people and expecting some sort of financial outcome from a case where there has been negligence.

    Bill 13:32

    In Australia, there is that too, but generally speaking, I feel like it’s not so common for people to feel like they’re entitled to something. So we don’t really have this type of method of feeling like I’ve been injured by someone somehow, somewhere, I should go after them for money.

    Bill 13:57

    And not only is that thinking not common, and I say that from my experience. Not only is it not common, it’s very difficult for me to go to a lawyer if I’ve had a stroke, because I don’t have money to pay a lawyer to go through this process and potentially be on a case for two years.

    Bill 14:23

    So how do people approach lawyers where they’ve lost their income, and they don’t have a way to support a case like that? What happens? How is that possible?

    Laura 14:37

    There are ways that the cases can be funded. And a lot of our cases are funded by what’s called conditional fee agreements. So what we do is we agree to take on a case and look at it sometimes, you know, if it’s a car accident and somebody is a passenger in a car, it’s quite obvious that you usually establish liability.

    Laura 14:59

    But for clinical negligence cases, we don’t really know what’s going to happen whether it’s going to be a case or not when we first meet the person. So if we think there’s enough of a chance that it might be a successful case, we usually will take on a case on what’s called a conditional fee agreement.

    Laura 15:18

    So we will investigate that claim for the person. And if we think there’s a case, then we will continue with that claim going forward. And how it works with cases in the UK is that the loser of the case pays the winners costs. So if we win a case, we recover most of our costs from the other side, so the defendant, so whether that’s a driver’s insurance company, or if it’s a hospital.

    Laura 15:49

    So we take a risk, and if we investigate that case, and there isn’t a case, then we have to write off our fees, and we don’t charge the person that, you know, the cost that we’ve incurred. So that’s how a lot of our cases are funded. Because, like you say, if you’ve had an injury, and you’ve lost all of your income, how are you going to pay a solicitor?

    Laura 15:52

    And that, you know, that is a real issue so that’s one of the reasons why these funding arrangements came about so that people can actually have access to solicitors without having to you know, remortgage their house to investigate a case. So yeah, so that’s, I mean, they, you know, it’s good that we’ve got this and we can offer those to clients.

    Laura 16:41

    And yeah, it means that people who otherwise wouldn’t be able to get a case investigated can. And yeah, you talked about a little bit about sort of culture and you know, people feeling entitled to some kind of compensation.

    Intro 16:59

    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 make matters worse?

    Intro 17:16

    Doctors will explain things that obviously, you’ve never had a stroke before, you 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.

    Intro 17:38

    It’s called 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.

    Claim purposes

    Laura 18:01

    Don’t think anybody really wants to go through a legal process to get compensation. But if they’re in a really difficult situation, you know, they’ve lost their income, they’re really struggling, they haven’t been able to get the rehabilitation that they really need. I mean, there is obviously some provided after user for an injury, but it often doesn’t go far enough.

    Laura 18:26

    And so I think that people do it more out of a need to, you know, to be able to continue with their lives in a full and more full and meaningful way. And the way that damages are calculated, I briefly touched upon it a minute ago, there aren’t any and the press will make you believe otherwise.

    Laura 18:51

    But there are no lottery wins. There are no people just jumping gleefully, in throwing their money around, because that’s not what it’s like. It’s all calculated. And it’s based on a person’s needs for care for rehabilitation, only a very small proportion of what people receive is actually for the injury itself. Yeah, and that money it’s all got a purpose. And it’s all you know it mostly for things that aren’t really that exciting.

    Bill 19:28

    As a lawyer, you really got to get through and see if you can somehow extract the truth from a situation and often you’re dealing with a brain-injured person who will maybe struggle with not necessarily the truth, but just even the events that led up to the injury.

    Bill 19:49

    And then you’ve got the other side. And I know you can’t talk about specific cases. So in a situation where the defendant has been a hospital, there seems to be this understanding that a hospital will do everything to cover up some of the issues that may have caused a problem.

    Bill 20:12

    What do you think is behind those types of cover ups? Is it that they don’t want to admit fault because that’s going to make them criminally liable somewhere? Is it because there is a possibility that it’ll make them financially liable? Is it something else that goes on in the psyche of an organization like a hospital that creates these situations.

    Bill 20:36

    Where they, instead of coming out and going, we’re going to support this person because we’ve made a mistake. Let’s end this three years earlier. What makes them spend hundreds of thousands of pounds or dollars on a case to avoid paying a few hundred thousand dollars? or pounds?

    Laura 20:52

    Yeah, it’s really difficult. I mean, I’ve dealt with so my background is in clinical negligence cases so I’ve dealt with hospital trusts a lot in the past. And you do sometimes wonder why, you know, if they’ve got evidence, and you know, we believe there’s a case, wonder why cases are fought and liability isn’t admitted sooner?

    Laura 21:18

    And I don’t know, sometimes I think that there is a real difference of opinion as to because some of the issues are so complex, you can we have an expert in an area of medicine saying, yes, this was negligent. And they may have an expert saying, No, it wasn’t. And there is, and you know, in some cases, there is that difference of opinion.

    Laura 21:40

    And they hold one view and we hold another view. And if we can’t work out those differences, then it will end in a court case, and not many cases actually go to a trial? Usually, there is some settlement before it actually goes to a trial. So there is I think in some cases, there are really differences in opinion, in the expert evidence that means that the defendant will not just admit liability and say, look, we’ll pay this damages to you.

    Laura 22:15

    In other cases, the evidence is so strong that there is an admission of liability. But I have been on the side, you know, on cases where I just think, Why has liability not made admitted, in this case, we’ve got so much good evidence. And yeah, I don’t always know what’s going on, on their side of things.

    Laura 22:36

    So just have to kind of keep thinking about what our case is and the strength of our case and just keep going and do all the work and hope that the result will come through in the end, which is, you know, the person winning their case and getting some compensation to help them live a better life.

    Laura 23:02

    Yeah, it is really hard. And I think it’s so hard for the injured person, if we’ve got, you know, if we’re saying to them, we’ve instructed this expert, they believe that there was negligence, or you’ve got a good case, and then we get the response from the other side, and they just say, no way.

    Laura 23:23

    It’s really hard to try and explain that and, you know, work out why that’s the case. But all we can do is work on our own case, and make sure that we are comfortable with the strengths of our own case, and just keep going with the evidence really.

    Bill 23:42

    Yeah, it would be really difficult for a stroke survivor or somebody that’s been injured in a neurological way to deal with all of that I know how difficult it is to just deal with a regular life. Because of the challenges that are created by a brain injury, how much involvement is there on behalf of the person that you’re representing?

    Bill 24:11

    Are they necessarily need to be involved in every step of the case, or you guys acting on their behalf? And they aren’t necessarily involved in every step of the process? How do they keep getting informed?

    Laura 24:26

    Yeah, well, it depends on the severity of somebody’s injury if they have if they really struggle to understand or deal with their own affairs. And we will often be dealing with a husband or a good friend, or wife or a son or daughter just somebody in the family.

    Bill 24:46

    Power of attorney.

    Laura 24:48

    And yeah, and if that person does formally lack the capacity, and that needs to be assessed by a doctor at appropriate point, but if they formally lack the capacity to handle the proceedings themselves, then that person is appointed as what’s called the litigation friend, so it is like a power of attorney for the case.

    Laura 25:06

    And that person can then has the right to make the decisions about the case. But there is some, you know with brain injury, if that person wants to be involved in their case, we don’t say I’m sorry, you don’t have the capacity, you know, we’re not talking to you anymore.

    Laura 25:27

    There’s flexibility in that. And so, we take it on a case by case basis, and if somebody they can be as involved or, you know, as out of the picture as they want to be, and because, some people will just say, look, I just can’t deal with this, speak to my wife, I don’t want to, you know, I trust her to make the right decision.

    Laura 25:52

    And so, if that’s the decision, that person does lack capacity then that’s absolutely fine. But other people want to be very involved in their cases. Yeah, if somebody lacks the capacity formally assessed, then we do need to take the formal instructions, and somebody else so what points or decisions need to be made.

    Laura 26:16

    So if an offer of the settlement came in from a defendant, we have to consider whether that amount of money was good enough to settle the case. And we have to take instructions on, you know, we advise on what we think. And we would say to somebody, we think this is, would either say, this is too low, we need to try and up that number.

    Laura 26:16

    Or we might say, actually, that’s a good offer, we think you should accept it. But we can never just do that we have to get some of these instructions, we can’t just go ahead and do it. So if the person doesn’t have capacity, we would advise them and take their instructions on that. But we do get situations where our advice is to accept an offer. And somebody says, well, actually, I don’t think that’s enough. And you know, we will try and work with that where we can.

    The extent of brain injury


    Bill 27:08
    Yeah. What kind of range of brain injuries? Have you seen? I imagine that the real severe ones where people are totally incapacitated and can’t make decisions on their own. But at the other side of the spectrum, is there something that you’ve seen that has been, well not that such a thing as a minor brain injury, but more minor and less serious in nature, and therefore less serious in the way that that person is going to go about the rest of their life?

    Laura 27:41

    Yeah, well, I mean, there’s a really broad spectrum. And we’ve dealt with cases for people who have, you know, that they are basically locked in, they can’t move, they can’t communicate. And so, that’s probably the most severe kind of injury that we deal with.

    Laura 28:02

    But yeah, on the more mild side of things. We do deal with people who have more subtle brain injuries. And you might think that that would be more simple, but actually, I think it’s sometimes makes it more difficult, because when people are quite able, it can be difficult to, you know, work out what it is exactly that they need and how things are different to before they had the injury.

    Laura 28:34

    And of course, some people who have suffered brain injuries can still work. And that’s great. And, you know, it’s good for people to be able to do as much as they possibly can do, but I think it can sometimes make it actually more complex, when you’ve got somebody who’s quite able to work out what their level of need is, and to, you know, look specifically, they might really be absolutely fine in one area.

    Laura 29:00

    So say physically, they might actually not really show any signs at all, but they have real difficulty with a certain aspect of speech. So they might have real difficulty like word-finding, for example. And that might not be obvious to you know, if you were just to see that person and chapter them in a shop, you might have no idea and look completely normal can speak really well.

    Laura 29:26

    But they’ve actually got a brain injury that does make things more difficult for them. And so, yeah, the subtle brain injuries in some ways can be just as complex as the really severe injuries. Because you’ve got somebody who’s they sometimes call it walking wounded.

    Laura 29:46

    So you would have no idea it’s an invisible disability. You would have no idea of what the you know, the difficulties that are going on inside their heads, and that they might, you know, they might just be having a normal conversation with you but inside their head they’re having to work really, really hard to do that.

    Bill 30:03

    Yeah. I know what you mean.

    Laura 30:06

    I’m sure you do. Yeah.

    Bill 30:07

    So strange that one of the biggest challenges that stroke survivors who don’t appear to have had a stroke. And by that means that they’re not in a wheelchair or they don’t have spasticity in one of their limb is really difficult getting people to comprehend what is going on for them and why it’s difficult to go back to work, or you know, drive a car or do any of those things.

    Bill 30:33

    Yeah, so it’s really frustrating for a lot of people, you know, lighting is an issue for some people. And if you’ve never had an issue where you’ve experienced that the light above your head is causing you pain or harm. How do you describe how do you understand and comprehend that when you tell, when somebody tells you that that’s what they’re experiencing, or noise is an issue.

    Laura 30:56

    Noise we’d find a lot, yeah.

    Bill 30:58

    Dramatic noise and might just be the regular noise in a space that causes an issue for that person. So and vision issues. So yeah, it’s really fascinating topic. And that’s why I contacted you, because I felt like there was more to it than just lawyers going after people for money.

    Laura 31:20

    Yeah, well, the reason that I do this job is because I actually love the work and I love working with people and the best part of my job is when you’ve started a case and somebody you know, they’ve got a lot of difficulties, a lot of things that just aren’t right, and you can, when we start being able to get funds to put things in place, and you can see improvements, and you can see that people are, you know, getting their lives back.

    Laura 31:47

    And it might not be the same as before their injury, but they’ve actually got meaning in their lives, and like, finding joy, and being able to do things. It’s so rewarding. And, you know, that’s what I love, and we have a real focus on trying to get rehabilitation, as soon as we can, which can be difficult in clinical negligence cases, because of the whole thing of not being able to work out if there is a case on liability, it can take some time to do that.

    Laura 32:23

    And to establish that book, that it really is the best feeling and when you can see somebody you know, and that what you’ve done is made an impact on their life, for the good. It’s really great.

    Laura 32:39

    One of the cases that I’ve worked on when I was quite newly qualified, it’s slightly different to what I do now, because I deal with adult brain injuries now. But this was a little girl who’d suffered a brain injury at birth. And when I first went to see them, she was I think she was about eight years old.

    Laura 33:00

    But she was fed, she was peg fed. So she was very big eight-year-old girl. And her mom was they were living in a tiny, tiny little two-bedroom house and her mom was having to carry her up and down the stairs, because they had no way for her to get about and she was really severely injured.

    Laura 33:16

    She was in a wheelchair, couldn’t walk, couldn’t talk. Anyway, we’ve managed to get rehabilitation and better accommodation and just seeing them after all of that was in place. And her parents were so, so grateful because they could just be parents, again, they had parent support that they didn’t have before.

    Laura 33:41

    They had much better living accommodation, they weren’t in this tiny house or just trying to get by with all these huge equipment. And they just couldn’t operate in the house hey had before. And it was such a when we when he settled that case. And they you know, they knew that she was going to be looked after really well for the rest of their lives.

    Laura 34:02

    They were just, you know, they were just so grateful and so happy. And it really yeah, it was it’s fantastic. And I’m really privileged actually because I was only like one or two years after I’d qualified I got to work on that. So I was really, you know, privileged to be able to help them.

    Bill 34:19

    That’s interesting. Until right then I never considered that these types of cases would help to make things right for some people who are caring for others that are experiencing brain injury. And it makes complete sense. But of course, you know, I’m thinking from my point of view and not my carers point of view at the time my wife was my carer, but she was my carer for a short amount of time because my recovery was such that I started to regain my independence relatively quickly compared to somebody who’s going to have a lifelong issue.

    Taking too long to get support after a brain injury


    Bill 34:57
    So I see that this can be extremely useful and supportive for people who are caring for stroke survivors because they often suffer the most as well. I know that carers do it really tough when they’re caring for somebody with a brain injury because they put them first for everything. How come it took 8 years for that family to get support in this way? Was this something missed along the way that stopped them from approaching a law firm?

    Laura 35:36

    I’m trying to remember exactly when they started because the case when it came to us had previously been with another solicitor. And for whatever reason, it transferred over to the firm that I worked at, at the time, I didn’t think that her family had approached a solicitor straight away after after she was born. Like, like I was saying earlier, they probably didn’t, you know, the shock of what happened.

    Laura 36:04

    And just them getting through the baby gears and being able to just come to terms with what had happened. So I think it was probably a few years later that they actually started thinking Well, actually, is this, you know, we, our daughter is very severely injured? You know, should this have happened? Was she going to be born like that? Was that always going to be the case or Did something happen?

    Laura 36:32

    And those cases, child brain injury cases, it’s certain. They are very complex cases, too. You always need four different types of medical expert before you even have any idea of whether there’s, there’s a case and and in her case, it was the fact that she should have been born sooner. And if she had been born sooner, she might not have suffered those injuries.

    Laura 36:54

    Also, after she was born, she wasn’t resuscitated properly. So she’s been suffered further injury. So there were two sort of events that led to her injury. But yeah, I think her parents kind of, after that, yeah, after they’d really sort of started thinking about what had happened, then they decided to seek legal advice.

    Laura 37:15

    And when I started working on the case, I think it had been going for a little while already. And quite soon after we took on the case, we then got an admission of liability. So we could then start doing all of the things that I talked about. So getting errors, and looking at therapies that might help her.

    Laura 37:36

    And, you know, it was really, really great to be able to see the difference. And, and what you were talking about people being carers of people with brain injuries. And I mean, it’s so hard and so difficult for people who, you know, if it’s a husband and wife and one of them has suffered an injury, no longer really being a wife, but being that person as Kara and just wanting to be back to husband and wife and the relationship changes so dramatically.

    Laura 38:08

    And having outside support to provide care can really help people start to separate and, and get relationships back then probably not so exactly as they were but you know, being a carer to somebody all the time, it very difficult to be a carer and the wife and I had the same thing with that case.

    Laura 38:29

    That girl’s parents, they just wanted to be her parents, and they’d always just, you know, obviously, when a baby is a baby, you need to be a carer anyway. But you know, you expect that as your children grow up that you don’t always have to be there sort of, you know, 24 hour carer which they were to their daughter.

    Laura 38:46

    And it was so nice for them to not that they wanted to hand her over, but to have some extra support and that they could actually just spend time enjoying the time with their daughter rather than providing that really intensive care all the time. And yeah, and trying trying to change their relationship back to a parent child relationship rather than a carer and patient relationship.

    Bill 39:12

    Yeah, It’s draining. It’d be a strain on every aspect of life. I know that most of the cases, say the clinical negligence ones are going to be people who made a mistake who who did something wrong on purpose. Usually, people who mean well, the doctors, the nurses. And they’re trying to help us, usually something that goes wrong because we’re human.

    Laura 39:41

    Yeah, I know,

    Bill 39:43

    How is that handled because it’s easy to blame that person for having done this or not having done that, and therefore, I am in a situation I’m in, but the reality is that they’re mostly trying to do the right thing. So how do you handle that as a lawyer?

    Laura 40:00

    Yeah, I think it’s difficult. And, you know, we have the NHS in the UK, and it’s an amazing organization, and they do such brilliant things. But, unfortunately, people have bad days and things do sometimes go wrong. And I don’t think that, I’ve never sort of felt, you know, against the NHS or against individual doctors that have worked on you know, that have been the doctor to patients that have been injured, you must be a really bad doctor a bad person.

    Laura 40:41

    There are a few we have had in the past in the UK, some sort of like rogue doctor cases where you’ve got a pattern. And that, you know, there are very few, but there have been a couple of cases of certain surgeons that have done things repeatedly wrong or just ethically questionable.

    Laura 41:03

    But generally, on the whole, I completely agree, I think it’s people just trying to do the best job that they can, sometimes things just go wrong. And the way liability is established in cases in England and Wales, is that just because somebody chose the wrong course of action, it doesn’t mean that that was necessarily negligent, if another group of doctors would agree that that was a reasonable thing to have done.

    Laura 41:35

    Even if there were other things that were reasonable, just because they chose one course, it doesn’t mean that was necessarily negligence, it has to be something that no reasonable doctor would have done at all. So that’s the standard of proof. And it’s quite hard to establish that.

    Laura 41:52

    Because, yeah, you know, if there’s like, somebody who’s got cancer, and there were five different treatment options, five treatment options might be reasonable, but one might be the least preferred by most doctors. But if a few of the doctors may have done that, you wouldn’t establish a claim for negligence. Does that make sense?

    Bill 42:14

    Yeah. So you’re not going after people just because they’re people?

    Grounds for negligence

    Laura 42:17

    Just because they made the wrong decision on a case. I think it has to be the treatment has to be so unreasonable that no reasonable medical practitioner would have done that same thing or not done something. And yeah, just because, you know, somebody had a one-off bad day, they made a decision that wasn’t right. I don’t think that you know, I don’t ever feel you would never go to that doctor .

    Laura 42:58

    And there’s a neurosurgeon called Dr. Henry Marsh, I don’t know if you’ve heard of his book. It’s called Do No Harm. He actually one of the top neurosurgeons in the UK, I don’t know if he’s still practicing at the moment. But he wrote this book. And in his book, he admits that there was an occasion where he was negligent.

    Laura 43:24

    And he went to a conference with a load of solicitors and barristers. And he, you know, he said to them, yep, I, you know, I was wrong. On that occasion. It was poor treatment. And it was a severe brain injury case, it was a an expensive claim. But he held his hands up and said, I made a mistake on that occasion.

    Laura 43:51

    And he was, you know, one of the best doctors in the country and had something went wrong. And somebody was really seriously injured. As a result of that. And, like he, you know, he must have fell, I can’t just try and like sweep this under the carpet, because even though I am an amazing doctor, I did something wrong and that family and the people caring for that person who’s now severely disabled.

    Laura 44:22

    They, why shouldn’t they get some compensation for what’s happened and the mistakes that he made on that occasion? It’s an amazing book.

    Bill 44:36

    Yeah, I’ll look into it. And I’ll put it out. For people on the show notes if anyone wants to find it. They can go and have a look. It’s a fascinating conversation. Thank you so much for being on the podcast.

    Laura 44:51

    Thank you for asking me.

    What should I do first?

    Bill 44:53

    Yeah, you’re welcome. If somebody is listening. And there’s a potential for them to have something trigger in their mind. Maybe I should look into this. Now this podcast goes out to the entire planet. So people, who listen to it in all countries. So we’re not advising anyone to do anything specific. But generally speaking, what would you say to somebody who’s at home listening to this and going? That might be me. What should I do first?

    Laura 45:25

    I think that the first thing to do, and I mean, it will vary depending on the country that you’re in. But I think hopefully, in most countries, you would be able to have at least an initial call with somebody in a legal setting to say, look, I’ve got a there’s just something niggling I, you know, I’m just not sure about this. Can you let me know? Do you think there’s anything here?

    Laura 45:50

    And I think that just just taking that first step just to ask the question, because, like, we’ve talked about clinical negligence cases a lot. I’ve investigated clinical negligence cases where it, you know, we don’t get evidence, and we just, you know, there isn’t a case.

    Laura 46:05

    But that person has then got the answer to a question. And even if they don’t have a case, they know what happened to them, and they can actually take comfort in some cases, that actually there wasn’t something that could have been prevented. So yeah, so my advice really would be to just try and have a free phone call with somebody who might be able to say to you, yes, I think there’s something worth investigating further or no, actually, I don’t think there’s anything that you can do. But you know, they can support you and signpost you maybe to other organizations that might be able to help.

    Bill 46:46

    Yeah, excellent. If somebody wanted to find out a little bit more about you or the work that you do if they wanted to touch base with you for a similar question, where would they go? Where is the best place?

    Laura 47:00

    There are a few avenues. There’s obviously I’ve got an Instagram account @thebraininjurysolicitor, so anybody can message me on there. And then I work for a law firm called Bolt Burdon Kemp based in London. So we have a website and you can, I can give you the details, Bill, and anybody can contact us. Yeah, can phone call, email. Any anything really, if you want to. If you want to get in touch and ask me a question about anything. I’m happy to chat.

    Bill 47:34

    Laura, thanks so much for being on the podcast.

    Laura 47:36

    Oh, thank you very much. It was really really nice to speak to you.

    Intro 47:47

    Discover how to heal your brain after stroke go to recoveryafterstroke.com.

    Intro 47:57

    Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. The opinions and treatment protocols discussed during any podcast are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.

    Intro 48:14

    All content on this website at any linked blog, podcast or video material control this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis. The content is intended to complement your medical treatment and support healing.

    Intro 48:30

    It is not intended to be a substitute for professional medical advice and should not be relied on as health advice. The information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional.

    Intro 48:51

    Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitation program based on our content if you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional if you are experiencing a health emergency or things you might be called triple zero in Australia or your local emergency number immediately for emergency assistance.

    Intro 49:13

    Or go to the nearest hospital emergency department medical information changes constantly. While we aim to provide current quality information in our content. We did not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content. If you choose to rely on any information within our content, you do so solely at your own risk. We are careful with links we provide however third-party links from our website or follow that your own risk and we are not responsible for any information you find there.

    The post The Brain Injury Solicitor – Laura Barlow appeared first on Recovery After Stroke.

    50 min
  • Finding Purpose After Stroke – Nicholas Kemp

    Finding purpose after stroke is a key ingredient that helps with the recovery process.

    Socials:

    https://ikigaitribe.com/
    https://www.linkedin.com/in/nicholas-kemp-7176631a/

    Highlights:

    01:15 Introduction

    11:10 Hikikomori
    14:42 Ikigai
    21:35 Parts of Ikigai
    29:14 Philotimo
    36:02 Moving forward
    45:43 Chasing happiness
    54:24 Life throw’s a curveball

    Transcription:

    Bill 0:00

    I think the Western culture talking about purpose kind of misses the ball and makes it about a thing that you have to work out in your head before you seek out and make it happen. Whereas it’s not that at all. It’s something that came just because I decided to give an I didn’t realize that that’s what was going to come from it, it just came.

    Bill 0:24

    And the first step was, make yourself available to other people and help other people. And when I think about the people on the planet that stands out, as having had an amazing purpose in life, like Mother Teresa, like Mahatma Gandhi, like Nelson Mandela, they didn’t make it about themselves. They made it all about other people. And they just happen to be the vehicle that led the voice to the particular struggle of the tribe that they were leading.

    Intro 1:02

    This is The Recovery After Stroke podcast, with Bill Gasiamis, helping you navigate recovery after stroke.

    Introduction to Ikigai


    Bill 1:15
    It’s Bill from recoveryafterstroke.com This is Episode 121. And my guest today is Nicholas Kemp. Nicholas is the founder and host of the Ikigai Podcast. And our conversation today is about unearthing your life’s purpose and the role that the felt sense of Ikigai plays whilst on life’s journey.

    Bill 1:37

    Now, in case you’ve never heard of Ikigai, let me explain it briefly. Ikigai is a Japanese based life philosophy involving daily rituals, living your values, building intimate relationships, fulfilling your life’s roles, and pursuing a life goal. With a healthy sense of urgency.

    Bill 1:55

    It can help you live longer and give you motivation and resilience in times of hardship. It can be your path to self-actualization, and to becoming your truer self. This is truly going to be a great episode.

    Bill 2:12

    Now, before we get started, if you have ever wondered what else I can do to help you with your stroke recovery, you should know that you can now get recovery after stroke coaching, right from the comfort of your own home. I too am a three-time stroke survivor and a brain surgery survivor and I have built for you what I was missing when I was sent home from the hospital in the hope that you don’t have to do stroke recovery as tough as I did.

    Bill 2:35

    Support packages give you access to a variety of tools 24 hours a day, seven days a week, so that you can also work on other areas of stroke recovery, that you don’t get a chance to at physical therapy or rehabilitation. With tailored support available for less than $8.50 per week, all recovery after stroke support packages, bring stroke recovery to you in the comfort of your own home.

    Bill 2:59

    To try it out, and see if it is right for you. You will get the first seven days free, as well as a 30-day money-back guarantee no questions asked. As a bonus, you will also get to face to face zoom calls with myself to take your recovery to the next level. So go to recoveryafterstroke.com/momentum to sign up.

    Bill 3:19

    It won’t cost you anything for the first seven days. And you’ll get a full refund. If you’re not happy after 30 days. You have nothing to lose and everything to gain. And now it’s on with the show. Nicholas Kemp, welcome to the podcast.

    Nicholas 3:33

    Thank you, Bill. It’s an honor and pleasure to be talking to you today.

    Bill 3:37

    Mate, every time I start a podcast I talk about with the people that I start with, I always tell them that I love the fact that they’re on my podcast, I really appreciate it. It’s amazing that they are on my podcast and it really is it always is.

    Bill 3:52

    And most of those people are stroke survivors and they take us through a conversation about where their stroke started, their stroke journey started. All the challenges that they’re facing, what they’re overcoming, and they’re talking about how they’re getting to the end of their recovery, or that acute part of their recovery, where they’re starting to find a new normal.

    Bill 4:15

    And part of that discussion sometimes has a portion of purpose in that conversation where we talk about purpose. But for many people the conversation doesn’t talk about purpose because I think that purpose is a difficult concept to grasp. Now the reason I contacted you A you’re a mate, I’ve known you for a while and I think you’re a great guy. And that’s a good start, isn’t it?

    Nicholas 4:48

    It is a good start thank you. Yeah. I’m glad you’ve invited me.

    Bill 4:53

    And then I’ve started listening to your podcast that you recently launched called the Ikigai podcast and you’re a fascinating guy, because you’ve lived in Japan for a long time. You’re married to an amazing Japanese lady, and you kind of became embedded in the culture.

    Bill 5:11

    And you’ve come out of it. And you’re back in Australia with some amazing bits of knowledge and learning that you’ve taken away from it that I feel like from listening to your podcast, has enhanced your life. And really spoke to me when I started listening to the different episodes that you’ve got on the podcast so far.

    Bill 5:36

    And I felt like I wish I knew more about this ancient wisdom that seems to come from this mystic kind of place, you know, mystical place called Japan that we don’t know much about other than what we’ve seen on TV. So firstly, can I just start by asking you to give me a little bit about your journey that got you to Japan? How long you were there? And then what got you coming back to Australia?

    Nicholas 6:11

    So my first trip was actually when I was five. My father was a physicist. And he had done some research which required him to travel to various countries. And he was given he worked for the CSIRO.

    Bill 6:27

    That’s an Australian research organization.

    Nicholas 6:30

    Yeah. So when that happened, he was given a first class ticket. So he started to turn it into, I guess, a family ticket for my mother and my brother and myself. And I don’t really remember the trip, but I do have sort of flashes of memory.

    Nicholas 6:49

    And one of the countries we visited was Japan. And I guess it had a lasting impression on me. Because in my early 20s, when I was working in hospitality, and probably partly due to the tourism boom, while the Japanese, we’re coming to Australia, I’ve really wanted to go to Japan.

    Nicholas 7:12

    And then I was awarded a traineeship through my college I was studying at men’s college. And yeah, this one year traineeship, to go and work for a company that had a chain of restaurants, and they had big plans to expand to Melbourne.

    Nicholas 7:32

    So that was in 95, 96. And that was a great experience. It was just amazing. And that year went really quickly. And then that company’s plans, filled through, and I actually wanted to go back to Japan. And I didn’t really want to work in hospitality, because the long hours and all that sort of thing.

    Nicholas 7:56

    So I thought I’d go back. And really the only way I could do that was well, not the only way but for the easiest way was to go back and teach english. So that happened in 1998.

    Nicholas 8:14

    And I went back to Tokyo, the first trip with the traineeship was to Tokyo, and then out in the works, and one of the commercial English schools there and worked there for about three years. And sort of during this relationship, which aparently I met my wife actually met my wife before I went to Japan in Melbourne.

    Nicholas 8:39

    And we were just sort of friends and she was very shy, pretty hard to get to know. But we used to write to each other. And then when we if we ever met in person, she wouldn’t even acknowledge me when we were sort of different countries in the past she would write to me. So she’s one of the few people I’ve ever handwritten to. So, eventually we got married.

    Bill 9:11

    You wore her down enough so that she spoke to you.

    Nicholas 9:16

    One thing led to another so yeah. And then in 2002. I mean, I went back and forth to Japan a few times. But in 2002, I went back and I live near where my wife’s from for six years.

    Nicholas 9:37

    And that was a small town and famous for pottery. And her father and her brothers make handmade pottery. But yeah, so I’ve come to experience Tokyo, the big city and also living in a village. Japan’s a very interesting country.

    Nicholas 10:02

    What other grits I had was, I mean, I started my own school eventually. And it really tied me down because I was the only teacher and so I didn’t get to explore Japan as much as I wanted.

    Nicholas 10:19

    And now I’m quite desperate to, we try to go back every year. But I’d love to go back and live there with sort of new freedom I have from working myself to discover all these things that I’m really now rediscovering.

    Nicholas 10:39

    Japan is an interesting country to live in, you can end up having a I used to describe it as a love hate relationship. Wasn’t that a hated Japan, it was aspects of living there that I struggled with.

    Nicholas 10:55

    You’re always a foreigner in Japan. It’s very hard to integrate fully. And there are these unique problems in Japan that just don’t exist outside the world. And they’re almost upsetting because they’re so unusual.

    Hikikomori vs Ikigai


    Nicholas 11:10
    And there’s such a lack of support for people with mental health issues heavily things like hikikomori, and another one’s lonely deaths and all these problems.

    Bill 11:23

    Yeah, what’s hikikomori.

    Nicholas 11:25

    hikikomori, these teenagers just decide they’re not going to go to school anymore, and they’re not going to do anything and they lock themselves in their rooms. There are documentary on this in Youtibe that will blow your mind.

    Nicholas 11:44

    And you’ve got literally hundreds of thousands of Japanese men who have lived in their room for the past five to 15 years. And their parents, probably out of shame, but they don’t want neighbors to know, they hide the problem.

    Nicholas 12:04

    So they feed the problem they’ll feed their child leave food at their door. And you’re talking months or years go by when parents don’t actually even see their own child. They’re in son, spying living in the house. And it sort of blows your mind and they spend most of their time online, that they don’t venture outside they have no friends they have no job.

    Bill 12:29

    Wow, this is a common thing that happens in Japan?

    Nicholas 12:33

    This is epidemic in Japan, like it’s a huge problem.

    Bill 12:39

    Is it a new problem? As in? Is it a modern problem? Or is it something that used to occur in the past?

    Nicholas 12:46

    That’s definitely a modern problem. But it’s, I think it started happening 20 years ago, but now it’s quite a big problem. And this is the lack of resources and funding and organizations to help these young men who clearly have a lack of purpose in their lives.

    Nicholas 13:10

    That I should touch on. It was this second trip, when I started teaching that I stumbled upon this word Ikigai. And it was one of those conversations, you have a clear memory off.

    Nicholas 13:26

    And I remember as for where and when it happened, and being introduced to this word and things sort of stun that it encapsulated. Now the reason why you live and, you bet along with life.

    Nicholas 13:41

    And that was sort of in 98. So really, before the internet, and I did what everyone else does, and I went and taught all my coworkers this amazing word called Ikigai and it means something like the life purpose or the reason why you live and get up in the morning.

    Nicholas 14:02

    And so now, sort of in the past two years, because of this misinterpreted idea of it being a framework of doing something that you love that you’re good at, that the world needs and that you can be paid for. I guess I felt an obligation to really study it, and then share with the rest of the world what it really is.

    Nicholas 14:27

    Because I knew straight away when I saw the main diagram of that there must be a misinterpretation or Western interpretation, because Japanese would never define it like that. But then I started seeing it everywhere.

    Ikigai


    Bill 14:42
    Yeah, so what you’re referring to is that somewhere somehow this term Ikigai became popularized, and as a result of that was popularized slightly incorrectly. The things that you mentioned, though, that it stands for are still amazing things. What were they again?

    Nicholas 15:00

    So that framework is still a very helpful framework was actually created by a Spanish astrologer. And it was just something he sort of meditated on and came to him. So it was this idea that if you’re doing something that you love, and that you’re good at, that the world needs and you can be paid for it.

    Nicholas 15:21

    It could be purpose, obviously, in the framework of your work. Now, he just shared it in Spanish on his Facebook page, and I’ve got quite a lot of interest. And then someone obviously found it and translated it into English. And then that probably went a little bit viral.

    Nicholas 15:47

    And then one day, someone who I’ve interviewed Mark Quin he stumbled upon it, and then after watching a TED talk on how to live to be 100 Plus it was this TED talk about Blue Zones. And one of the countries or one of the areas is Okinawa. And then Buettner, who presented the talk, briefly mentions Ikigai in this talk, he said, you know, the Okinawans live, to be 100. And they have this lifestyle and grow their own vegetables and this strong sense of community. And this word Ikigai.

    Nicholas 16:30

    So this guy, Mark, he just thought it’d be a cool idea to merge Ikigai with this Venn diagram. So he just replaced the word purpose with Ikigai. And he really was only doing it for his own personal community like his own.

    Intro 16:46

    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?

    Intro 17:03

    Doctors will explain things but obviously, you’ve never had a stroke before, you 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.

    Intro 17:25

    It’s called 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.

    Nicholas 17:49

    Friends and people that read his personal blog, so famous a passing thought, and really had no knowledge of Ikigai at all, other than what he learned from that Ted talk. And that Ted Talk also created the perception that it was a word from Okinawa, with which it isn’t.

    Nicholas 18:09

    So it’s their purpose is an important aspect of Ikigai, but it has nothing to do with getting paid. Japanese will tell Ikigai has nothing to do with getting paid. And for many Japanese, it’s something that they do once they retire, because then they have the freedom. Because they’re not working. They’re not growing up children.

    Nicholas 18:35

    And because they’re usually quite fit and healthy from the age of 60, 65 they do need something to occupy their time. But also, Japan actually had its own Ikigai room in the 60s with literature and books. And that’s where it’s explored, perhaps as a way to self actualization. And that’s what I’m really interested in all the literature back then. And that’s what I’ve been sharing.

    Bill 19:10

    Yeah, so what you’re saying is that Venn diagram, and for anyone who’s watching or listening, there’ll be a copy of that Venn diagram, that you can look at the recovery afterstroke.com website where this episode will reside. If you just go to the podcasts tab at the website, you’ll find the this episode listed before the other episodes.

    Bill 19:35

    It says that basically, at the top it says that which you love, that which the world needs, that which you can be paid for that which you are good at. And then inside it says it’s your passion. It’s your mission. It’s your vocation, it’s your profession. And it seems like an amazing concept that one because if I feel like I’m doing something that I love and something that the world needs, something that I can be paid for, and something that I’m good at.

    Bill 20:09

    I’m pretty close to finding my purpose in life, like I’m feeling like I’m succeeding in life. Because up until the time that I was doing all those things, there was something seriously missing, I was going to work because I needed the money. I didn’t really love it the world that didn’t really need me to go to work and make money to pay the mortgage.

    Bill 20:35

    So if I’m going about my life in that way, I’m feeling really good about myself. And that’s not a bad framework, but Ikigai seems to be more this type of a felt sense, something that you feel an experience, internally, rather than something that you do, physically, externally, and it might be part of those things that you do might be part of helping to create that internal feeling.

    Bill 21:17

    But I couldn’t see that internal feeling happening for you, only you can experience it. And you could describe when it was being experienced by you, but I wouldn’t be able to see it, unless you told me, did I capture anything there?

    Parts of Ikigai


    Nicholas 21:35
    Close, I mean, you are close. So if we were to probably define Ikigai, you do it in three parts. So you have your Ikigai. So your source could be a relationship. So very good example is a child, your child. So that’s your Ikigai source or your Ikigai object.

    Nicholas 21:59

    And then Ikigai kan, which translates to Ikigai perception or Ikigai feeling or Ikigai awareness would be these feelings of love, joy, pride, and hope for the future. So it’s personal, for everyone, and it’s unique, everyone’s Ikigai will be different.

    Nicholas 22:23

    So that’s why if your child is your Ikigai, which most likely will be for most parents, at some stage, especially in the young years, you know, that’s got nothing to do with, you know, getting paid, or being good at.

    Nicholas 22:39

    You know, when you’re a new parent, you’re learning so you’re not gonna be a good parent. I mean, you’d be a loving and caring parent, but doesn’t make you the greatest parent.

    Nicholas 22:48

    So that’s how Miyako Miyako I’ll briefly mention who I’ve kind of termed that the mother of Ikigai psychology. She wrote this amazing book in 1966. It’s, only available in Japanese, but that’s how she defines it.

    Nicholas 23:07

    Now, you can actually tell when someone has Ikigai, because they do have this sense of purpose. You know, someone who wrote a really interesting article who I’m interviewing next week, he kind of says, the feeling of Ikigai is almost contagious, because when you say someone who’s living their Ikigai, it kind of rubs off on you.

    Nicholas 23:39

    Now that that would vary, in degree, depending on each person. Or we probably should just, you know, there’s a few things we probably need to clear up, you know, not all Japanese have Ikigai. We’re all human. So we all struggle with life, we have our problems.

    Nicholas 23:56

    And not every Japanese would have Ikigai. And for most Japanese, it’s not even a special word. It’s just a word they grow up with. Now, I mentioned on James’s podcast, like it’s quite hard to translate this word. And I said it would be like trying to describe mateship.

    Nicholas 24:22

    So if I asked you to suddenly explain mateship you wouldn’t be able to tell me straight away, you’d probably have to think how am I going to explain my ship to someone who doesn’t live in Australia?

    Nicholas 24:33

    And then if I have someone else that probably give me a completely different perspective, or at least a different interpretation. But if you went to Europe or the UK or America and you saw a book on mateship and then had mateship in the middle and friendliness and easy goingness and had some framework.

    Nicholas 24:57

    You’ll probably find that a bit unusual because there’s no framework for mateship in Australia, so it’s, the West has definitely embraced this word, but to the Japanese, it’s part of their vocabulary. But it is an important concept. And like many people, you know, some people pursue it and others don’t obviously, because they probably because they struggle with life or they’re too busy.

    Bill 25:25

    Yeah, for the standard reasons that we, in life don’t understand our purpose or don’t know what our purpose is. I feel like I found my purpose. So maybe by the end of this episode of get to understand whether that’s my Ikigai, we’ll explore that now.

    Bill 25:42

    When you talk about mateship, for the people listening who are from a Western culture, they might understand if you and I tried to tease out what mateship is, so then we can kind of refer it back to Ikigai, and then kind of bring in the purpose conversation.

    Bill 25:58

    So for me, mateship is about depending on the circumstance going far beyond the call of duty for somebody who is in need somebody who needs a hand, it’s about putting that person before me, it’s about making sure that they feel supported that I haven’t let them down.

    Bill 26:26

    And I’m thinking about like a natural disaster, you know, how Australians come together during a natural disaster, like the bush fires or flooding, to support their mates to make themselves available to help out wherever they can.

    Bill 26:39

    So I can practice mateship from Victoria, which is 3000 kilometers away from Queensland, if they have a flood, by sending a parcel of food by donating to a certain organization, you know, by bringing awareness to the plight of the people who lost their homes during the flood, and supporting one of the local charities.

    Bill 27:00

    And I can also offer, I can also be a mate to a friend of mine who’s in need, who’s next door, and has had a rough time of it and needs somebody to talk to or to ask help from. And I can be a mate to that person as well, I can put my arm around them and make them feel like they’ve got somebody and they’re supported. So I agree with you that you can’t really describe what a.

    Nicholas 27:32

    There’s this sense of, you know, it’s very well natured and easygoing, we’re not you know, we’re not polite about it, we’ll just see what’s go and help. Whereas in like Japan, that be very cautious about helping people, but that is still help in a different way.

    Nicholas 27:47

    But we’ll go out of our way to help someone we wouldn’t seek anything in return would probably be a bit of humor. And this also this connection that I’ve read, you know, the history of World War One and, maybe in particular, I could literally campaign and and then I found out the words origins are actually German.

    Nicholas 28:16

    And it means something related to table being around the table. And so that, you know, that might relate to the whole barbecue culture we have so. That’s what I mean, you know, what, if we were trying to explain mateship on a podcast, this is how Japanese would have to approach Ikigai. It’s complicated there’s a history to it. It means different things to different people, I think mateship matters to you and me but there might be other strands were mateship doesn’t matter that much.

    Bill 28:55

    And especially if they’re not first or second generation Australians so if they haven’t been born in Australia, because there’s that there’s a cultural difference, especially in the early years, when you arrive into a country you don’t understand how things operate.

    Philotimo

    Bill 29:14

    And I know my parents who have been here since the 60s wouldn’t necessarily know what mateship is but being from a great background, they would know what Philotimo is.

    Bill 29:24

    Which is another concept that’s elusive, that’s similar to Ikigai and mateship and if you describe somebody as that person has Philotimo (Speakes in Greek) there is no bigger compliment than you can make somebody then you can say about somebody.

    Bill 29:42

    So when you ask a greek person to describe Philotimo, they’ll say to you, literally the word Philotimo is made up by two words is Philo and Timo. philo is friend and timo is honor. So the word literally means honor the friend, which sounds like mateship, when we talk about the spirit of mateship is kind of honoring somebody else when they require when they have a need.

    Bill 30:18

    Whereas, so with Philotimo by honoring the friend, you could honor them, just when they come to your house and you make them a coffee, you can honor them, when you take them, a batch of your, homegrown tomatoes when they’re running low. You can honor them in so many different ways. And nobody does it the same. And everyone does it differently. And it’s really hard to describe Philotimo but when you describe somebody as having Philotimo, there is no bigger compliment.

    Nicholas 30:51

    Here, we should probably touch on the etymology of Ikigai that helps understand it too. So Ikigai composed of two words. So Iki comes from the verb Ikiru, which means to live. That’s really daily living. And gai comes from the word kai, which can mean shell. And that’s what kanji for shell in the word sort of represents decorated shell.

    Nicholas 31:25

    So back in the period, which was about, like 1000 years ago, the wealthy would collect these shells and play a game like, matching cards. So you’d have these beautiful decorated shells on the inside, they’ll be placed down have sets up to 360 shells, and trying to match them and they all hand decorated and painted.

    Nicholas 32:02

    You have to find the pairs, that’s what I’m assuming Yeah. And so as a result, this is sort of the etymology of the word how the value associated to Hikigai the guy living, the history is in this this word Kai, for this shell, which was used in the scam cook, kai was it. So it really translates to the value in living the value in fine and living.

    Nicholas 32:33

    And that’s why the that purpose Venn diagram kind of conflicts with the idea because it’s not about it’s not really about achieving a life goal. It’s more about your daily living. So that’s why for many Japanese, their Iki guy can be something quite noble and small, you know, almost like a private personal pursuit. But at the same time, it can be the pursuit of a life defining golf.

    Nicholas 33:06

    So it’s almost like the spectrum. And going back to the literature of the 60s, yeah, embrace stretching. There’s almost to school, two or three schools of thought of what it is. So I like to think of it as the spectrum where you can appreciate the little joys of life. But it can go into, you know, pursuing a life goal. And trying to self actualize, but where you’re, you’re not trying to be the best version of yourself, you’re just trying to be your most honest self. And that means living your values.

    Bill 33:51

    So there’s a sense coming to me of gratitude. So there’s a portion of gratitude in there In Ikigai, living your values is something amazing. Being able to live your values, truly live your values, and then bringing that gratitude into how you’re able to experience your values and how you’re able to live your values.

    Bill 34:25

    For me, I wake up in the morning, and I’m grateful for the little things, all those little things. So perhaps I wasn’t before I became a stroke survivor before I became a short stroke survivor maybe, and no idea about why it was important to practice gratitude and why being grateful was beneficial to me in my life.

    Bill 34:47

    But then, when I’ve nearly lost everything, and being able to tie my shoelaces became something that I could be grateful of, and having that awareness to become grateful that I became great. for tying my shoelaces helped me live my values. And my values. Were never about having the best the best car, the biggest house, and all that junk that we do.

    Bill 35:14

    My values, were always about just connecting with people, and appreciating the simple things and understanding what was important. But somehow that got lost in just general run of the mill Western life, which includes mortgages, school fees, jobs and all the junk that goes with it, you know, so.

    Bill 35:37

    So what you’re saying is that within Ikigai is this is this way of experiencing the opportunity to practice your values, and then also having a level of gratitude for things that adjust taken for granted, that are really important parts of life.

    Moving forward


    Nicholas 36:02
    Yeah, so that sort of two aspects of Ikigai one aspect, that can clearly define Ikigai compared to happiness. And this probably would relate strongly to yourself, and people who have suffered a stroke is with Ikigai, this idea that your life that you feel your life is moving forward, and you have things to look forward to.

    Nicholas 36:34

    And in so many books that I’ve read, this has mentioned that, you know, even if your life is, you know, you’re struggling with your life, and you’re in trouble now. You can actually feel Ikigai in the moment, if you believe things will get better, and that you can action things.

    Nicholas 36:52

    So it’s not a false sense of hope. It’s real belief, okay, right now, you know, I’m struggling, maybe related to someone who’s suffered a stroke with my movements, I can’t do what I used to do. But I know if I do my rehab, and with the support of others and if I stay focused, that my life will get better.

    Nicholas 37:15

    And so with that feeling that my life will get better. It does motivate you to keep on living, and to be proactive. So this idea that your life is moving forward, and you do have a bright future. And Ikigai responds to proactive, so you’ve got to be proactive. So it’s not this esoteric, nice idea.

    Nicholas 37:38

    It’s alright. If I get off the phone, if I reduce the number of hours, I’m on Netflix, and actually just do something, go back to a hobby from my childhood, or start exercising, or take the time to say to a significant other, you know, I want more connection with you, and you’re gonna experience at our meeting, you got to have more value in your life.

    Nicholas 38:11

    So that that’s a really important point. And then yeah, there’s this idea of harmony and sustainability in your relationships. And this is, yeah, this is seeking intimacy in connection. But it’s also being aware of your own actions and what you say. So something I went from Ken Magee, who’s a modern author, he says, you know, every time we open our mouth and say something, there’s always this possibility, we’re going to alienate someone.

    Nicholas 38:42

    Just because we want to say our opinion, or get something off our chest. And so we don’t often talk about sustainability, we probably talk about harmony or relationships, but we don’t think I don’t want to say, you know, we don’t think off I say this on one end up, eroding my relationship or affecting my relationship with someone just because I have the urge to say something.

    Nicholas 39:08

    And so that’s, and that’s really typical Japanese culture Japanese a very, probably overly concerned, I would say, of what they think of others. And so as a result, they’re very careful about not offending others or creating disharmony. But I think we can definitely apply it to our, our relationships where we think well, you know, I want good relationships, I want to be in harmony, I want intimacy, and especially the people I care about.

    Bill 39:40

    You’ve just described me to a tee because there was definitely a time where my relationships weren’t the best. That was a call that preached in a before stroke as well. And then one of my goals became to make my relationships better and one of the reasons it became a goal was because I might have kicked the bucket and I didn’t want to leave the planet with people thinking, yeah, he was alright but he was always cranky or, you know, he had all these behavioral issues that we never really told him about, you know, that he thought was normal.

    Bill 40:16

    So, one of the things that I became aware of was how I was impacting others, and I sought out a way to, to make good in with people who I had mistreated, and never mistreated them on purpose was traded, and just out of the natural course of being myself, you know, the natural way that I did my life.

    Bill 40:45

    And therefore, I reached out to a lot of people and apologized to a lot of people, I said, Thank you. And I taught a lot of people that I loved them and I kind of made good with the world so that if I did croaker if I did, croak it, I went out, at least not with that on my conscience, and hopefully created a little less distress for the people who were left behind.

    Bill 41:11

    As well as that, the thing that you said about being your part, you know, having your path moving forward, and your life is improving, even if it’s on a small, minute amount. And I talk about the one percenters you know doing those things that each 1% at the end of 365 days, if you do 1% every day, that’s 365%.

    Bill 41:42

    And that doesn’t seem dramatic to a lot of people like my life is improved on percent like big deal. But it is that when you are able to reflect at the end of that 365 days back to see how far you’ve come, it is a big deal. Because there was small steps, they didn’t take a lot of effort, a lot of energy.

    Bill 42:05

    They just took a little bit of practice and a little bit of faith in that when you did do that, the results were going to come they may not come today, tomorrow or next week. But they will come and just keep working towards getting a result. And don’t hang your hat on what the result will be exactly.

    Bill 42:24

    It’s more about let’s just do something. And let’s reflect back and see what the result is. When there’s a big enough delay in time or enough time has passed, so that we can actually physically either see the results, or experience the result in another way. And we can actually be we can be grateful for having taken that leap of faith into improving our life by 1% every day.

    Nicholas 42:57

    Yeah, I guess we can relate it to that kind of Kaizen principle, or what’s interpreted as the Kaizen principle, this continuous improvement. But it is one of the reasons why Japan likes the superior products, because some companies or some craftsmen just have this pursuit of their head, this pursuit of perfection, knowing they’ll never attain it, but they just keep going.

    Nicholas 43:31

    And now they’ll take extraordinary care of fine details with small data details that people don’t first notice. But it’s only after a certain amount of time. And suddenly, people start to recognize these amazing products or this amazing craftsmanship. And this sort of astounded once they find out. Craftsman has been working, you know, 50 years on some particular product or something. But it’s something Yeah, we can relate to our daily life.

    Nicholas 44:05

    If we take once you know, take time to practice something or doing something, you do that sort of methodically, just for a few minutes a day, after a year or two years will be significant improvement. And it’s I mean, it sounds like your stretch. Obviously, as hard as it was it’s been a blessing in disguise and it’s made you realize all these things, you know, there’s aspects of your relationships that you thought you needed to face and do things to to improve.

    Bill 44:43

    And you’ve got this sense of mission now with what you’re doing with your podcasts and the blog and your website and your public speaking and you’ve obviously got this different mission of disparate mission but this passionate mission to help people And this doesn’t happen overnight, you’ve taken daily action to make this happen. And I’m sure through it, there are times where you thought. I don’t know if I can keep going. But you persevered.

    Nicholas 45:21

    Yes. So this is where we solve this delusion in life that if we were happy when we have social recognition, or when we paid off the house, or if we have good clothes, or a car, or if we look attractive, forthwith, people lose weight, not to get healthy, but to look better.

    Chasing happiness

    Nicholas 45:43

    And all these things ultimately won’t give us happiness. Because the problem is we’re chasing happiness when what we should be trying to get is life satisfaction. So that’s another aspect of sort of between maybe the western idea of, of happiness, and this idea of Ikigai is one of the seven needs of Ikigai, and one of them is this idea of life satisfaction.

    Nicholas 45:56

    So you could get up and exercise in the morning, and maybe not really enjoy it. But after you’ve finished exercise, you would have this sense of okay, I actually did something worthwhile and positive, and now, you know, feeling better. Now, you’re probably not happy.

    Nicholas 46:30

    But you’re feeling a lot better than if you didn’t get up. And then you turn to social media to try and get your happiness fix, which you wouldn’t get. Yeah. So I really like this idea of, if we focus on life satisfaction and fulfilment, in the process, we’re going to have more moments of happiness, because we’re going to be our well being well, beings can be better than one walks, and will be more receptive to things that will spark our happiness, because our well being state is better. So that’s a really significant aspect of go for life satisfaction, rather than trying to see happiness.

    Bill 47:19

    Yeah, happiness is a byproduct of seeking out things that are satisfying for me, you know, I seek out connection with amazing people, you the guys that we meet with once a month at the pub, the people who I connect with online, through the podcast, all those moments, provide me with a level of satisfaction.

    Bill 47:43

    And I sought out to do that at the beginning, thinking that I’m going to do something good for the community for the stroke community. But actually, it does me more good than I realized. And that makes me happier than I have been. And it wasn’t happiness I was chasing, I was chasing this sense of me feeling better about my stroke situation, my stroke journey, which then became about somebody else’s stroke journey, which when they gave me feedback that they were doing better, that made me feel better.

    Bill 48:22

    And then this cycle of increased levels of happiness and life satisfaction just took off. And snowboard and it became this massive thing. And I didn’t even realize that my happiness was being affected and that I was happier. I just was, and now that you, you are making me focus on it.

    Bill 48:44

    That’s what I’m noticing. That’s what came from it. Now, that doesn’t mean that I don’t get angry, that doesn’t mean I get frustrated. It doesn’t mean that I don’t have bad days, it does not mean that my left side never hurts doesn’t mean any of those things, it just means that the more I do for other people, the more I’m doing for myself.

    Bill 49:07

    And that just somehow creates more happiness. And I didn’t realize that that’s what I was doing. But clearly, that’s why I’m still doing it after nearly 120 episodes. Because it’s tough to do a podcast for an hour, edit it and transcribe it and pay for the website, do all those things, get it up live to just put it out into the world.

    Bill 49:33

    And then and then if I was doing that, and not getting any satisfaction out of it, I would have stopped ages ago and it wouldn’t have made me happy I would have been dissatisfied and unhappy with the whole process of what I went through and what I didn’t achieve.

    Bill 49:48

    Now. That being said, if enough time had passed, and I was able to reflect on that negative situation. This potential negative situation of my podcast not succeeding, say, five years in the future from now, if I was able to look back on this hypothetical time and my podcast didn’t succeed, perhaps the lesson that I learned, would have made me happier in the future.

    Bill 50:16

    So the pursuit of making a difference. And during this positive thing, even though it failed and made me feel negative, now, I feel like it still would have given me an opportunity to reflect on it positively down the track, because I would have learned something from it. And I love learning from failing, and I love learning from my mistakes.

    Nicholas 50:42

    Yeah, I mean, you find meaning when you’re serving others, but you’re being of service to others. And you start getting feedback, you realize you’re needed. And another Ikigai need is resonance, where you’re accepted by others, and you have meaningful relationships.

    Nicholas 51:09

    And if you’re needed, and you get a feedback, for this medium of the podcast, or it doesn’t really want, it doesn’t really matter what it is. And then you know, the value of your life. And, you know, it’s it’s not a material thing, it’s someone expressing gratitude and things for if done.

    Nicholas 51:34

    And what’s sort of become evidence may while we’ve been talking is, you have a role now, from your, you know, from your three strokes in your experience with the frustration of trying to find information on recovery. And the process, obviously, you became this realization, maybe, maybe I’ve got to be the guy who helps others get information on recovery.

    Nicholas 52:02

    And now here, we are now talking, you’ve done over 100 podcasts, you’ve got a website, and you’ve been very generous with all your information. And I’d like to quote you something that really helped me understand a core aspect of you can go missing, for me, sort of for the past year, year and a half, I was researching. And once I read this quote, or this article, it really clicked for me.

    Nicholas 52:33

    So and this is from venture capitalists to replace. So the secret trick to finding your key guy is to find your role within a community in your community. And when I say your community, I mean the people around you that define who you are. And every person you regularly interact with your community, your community can be often segmented into what many people appropriately called tribes.

    Nicholas 53:04

    So your credits community of people who have had a stroke, and you’ve interviewed, obviously, many people in that community, and you have a role now, and your role is obviously to share knowledge and to help people recover from stroke. And that is a role unique to you.

    Nicholas 53:27

    And even if someone in different part of the world was doing something similar, you’re still unique in that role, because you’re doing it differently, and you’re affecting people differently. So I think one key takeaways, if we can find our role within our personal community, and that can be a global community online or convey can be your local community can be your family, it can be your friends.

    Nicholas 53:54

    Once you know you’re wrong, and then you know how to serve people. And then yeah, you’re going to have this life satisfaction, you’re going to have connection, intimacy, and all these benefits value meaning. So it’s great that you sort of carved it out, when I’m sure you’re gonna be angry, and, you know, resentful, as well, life in doubt you.

    Life throw’s a curveball

    Bill 54:24

    And I was angry and resentful. And I think there’s a time for that as well. Especially when everything gets put on hold and you get stuck and you stagnate and it’s difficult to break the cycle of stagnation because you’re moving forward and is influenced by other people at certain times, you know, stroke recovery, and those people are doctors and those people are physios and those people, all these other people and they’re trying to help you but at the same time, they are keeping you sort of in this holding pattern of recovery.

    Bill 55:06

    And although recovery sounds positive, it also can have its negative aspects. And for me, the biggest thing of aspect was feeling like I was in this holding pattern of going to three appointments a week, which meant that by the time I went to those one hour appointments, every third day or every second day, I had spent an hour getting there an hour being there an hour coming home, and then I was exhausted, and then my entire day was gone.

    Bill 55:34

    So although that was a really good thing to help me recover, and get back to walking and get back to being physically active, it also got in the way with my life, because I couldn’t get back to work while I was spending that much time away from work, because that just couldn’t happen.

    Bill 55:54

    So if I allowed my head to play, the blame game on wildlife and shit, it was definitely everybody else keeping me in this space. And part of that was because I lacked the gratitude at that time for having the services available to help rehabilitate me. Part of that was because I didn’t know what my purpose was in life anymore, I wasn’t a dad, he was able to muck around with my son’s go to work and support my family, you know, there was many things that I that I’d lost, or that were put on hold.

    Bill 56:33

    And I took a badly I took it negatively. But then somehow things seemed to just turn around. And I can’t pinpoint exactly when that was. But I have a suspicion it was when the idea came to my head. And even though for a number of years, I didn’t do anything about it. When the idea came to my head in hospital, that I should do a podcast that share story about people recovering from stroke. And I said, I imagined that’s when it kind of turned the corner.

    Bill 57:05

    And that’s and that led to all these other experiences that I’ve never had before I’ve never had the connection with people from around the world, like I have now, with this tribe and community that exists that I didn’t know, was a tribe or a community. I’ve never had people that I can reach out to that are like me in so many ways, even though they’re completely different, and from different parts of the world.

    Bill 57:34

    So it’s been a fascinating journey. And when people do ask me about my journey, especially. Now when I speak about it, 9 years down the track. And I tell them that I found my purpose. And I haven’t really deeply thought about that. or discuss that with anyone other than you right now. But it’s what I said to people, and I didn’t really understand what I was saying. But I did say I think I found my purpose.

    Nicholas 58:08

    It’s a powerful having purpose. I think the problem with homeless is someone we do here and we read about with we are for lucky year, we find a good book, and it says you’ve got to find purpose, but it’s for whatever reason at a time, it’s just not a powerful message for you to understand something significant maybe has to happen in your life.

    Nicholas 58:36

    For you to think I think you have to think how can I help others? Rather than what can I get out of this. And it sort of go with another quote. Which this amazing movie maker Kamiya writing a book. All human beings are supported by more or less a vague sense of mission.

    Nicholas 59:06

    And it’s a sense of responsibility for what you’re living for. And it’s close to what you have to do in life. And those that don’t discover purpose or their mission will suffer and unfulfilling existence, while those that do will experience a strong Iki guy awareness. I mean, this book just blew me away.

    Nicholas 59:31

    And it’s, oh, it should be translated. But it has these statements like that threat book that is blowing your mind. And this this year, this vague sense of mission that we probably all at some stage several times in our life, think I should do something and either you start taking steps to make maybe pursue that or you don’t and for me and you, I noticed the last couple of years, especially for me, my life has changed.

    Nicholas 1:00:07

    Once I started thinking, How can I? How can I thank Japan and come back to Japan and correct this misinterpretation of eating gone? And how can I help others. And one thing I’ve noticed that’s been completely different to all my other businesses is I had people contact me, offering to help by saying, you know, several people just reached out and said, I’m wanting to help you by free of charge, because I think what you’re doing so amazing.

    Nicholas 1:00:41

    And I just sort of blew my mind. So I think you’ve probably experienced that too, once you have a sense of mission, and your focus is on helping others. Things happen. And you realize, as you mentioned before, you don’t know it, but you eventually realize, gee, I’m happier and more fulfilling. I’m really enjoying what I’m doing, despite all the, you know, all the hard work and frustration that goes into making a podcast or, making a course or writing a blog post.

    Nicholas 1:01:19

    And believe me, for someone who struggled with schoolwork, had to do extra English. Felt like I was an imposter, sort of teaching English in Japan. Yeah, you know, we can always find excuses not to do something. But if you can, find a sense of mission in your life, and you take steps to pursue it, things start to happen.

    Bill 1:01:52

    But I’ve never spent so much time filling my downtime with something before. So you know, before when you had downtime, at least me, they’d be not much to do. I would even describe it as maybe I was bored. And I had, you know, you know, a bit of blahs a sort of attitude towards my day or my hour ahead of me or whatever it is.

    Bill 1:02:16

    Now, there’s not a moment in my day where I’m not thinking about, I could be doing this for the podcast, this for one of my courses, etc. And that has never happened before. And when I was at school, I was not the kind of student who studied, who put time and effort into anything, because I didn’t appreciate or enjoy anything of that of that process that I was learning.

    Bill 1:02:39

    And when people told me, You need to find your purpose, my purpose kind of got thrust on me, when I was 21, my girlfriend at the time became pregnant, and therefore, I was going to be a dad. Well, I’ve been happily married now for 25 years. And everything else went away my purpose, my idea of potentially seeking out my true purpose in life.

    Bill 1:03:07

    Was overshadowed by this purpose of a little child coming into the world that needed my help, and it all became all-encompassing, and it was always gonna be only about the kid, and then his brother when he was born four years later, and my wife, and it was just going to be about that part of my life.

    Bill 1:03:27

    And that was a great purpose to have, but it’s not a lifelong, ongoing purpose. It doesn’t last forever, and it doesn’t fulfill you know, in the same way that this new purpose of mine fulfills me. And I remember realizing that that purpose had I used by day in that when my kids kind of came out and said, we’re old enough now, you know, we don’t really need to help me with my life, you know, we’re going to fly the coop.

    Bill 1:04:01

    I was like, oh, well, that’s my purpose gone, like what do I do now? How am I gonna redirect my energy into something positive and incorrect good in the world. But I have come across purpose in literature or in books or in talks or in places where I went for guidance about how I’m going to find my purpose.

    Bill 1:04:25

    You know, the place I went to was with Tony Robbins once all I left what all I left with was more confusion about what purpose was and more frustrated about not being able to find it or seek it out or how to work, you know how to make it work for me. And that was really challenging.

    Bill 1:04:45

    So I think the Western culture about talking about purpose kind of misses the ball and makes it about a thing that you have to work out in your head. Before you seek out and make it happen, whereas it’s not that at all. It’s something that came just because I decided to give.

    Bill 1:05:11

    And I didn’t realize that that’s what was going to come from it, it just came. And the first step was, make yourself available to other people and help other people. And when I think about the people in on the planet that stand out, as having had an amazing purpose in life, like Mother Teresa, like Mahatma Gandhi, like Nelson Mandela, like all those people who are household names, they didn’t make it about themselves.

    Bill 1:05:45

    They made it all about other people. And they just happen to be the vehicle by which that led the voice to the particular struggle of the tribe that they were leading is kind of how it feels. For me, that’s what I get from those amazing people and, and others that I didn’t mention.

    Nicholas 1:06:08

    This idea of serving, serving others, and often being of service to others less fortunate than you. But going back to your how you found a sense of mission and purpose, Kenny America’s sort of states, there’s three ways we can find a sense of mission. And one is, you just look for it in an area of interest. And another issue, you make a conscious decision to solve a particular problem, or the other is it might find you. So it seems in a way it found you.

    Nicholas 1:06:58

    And then you decided I’m gonna help people, you know, with what I’ve been struggling with. And I wanted to mention another aspect of Ei is freedom. And Kamiya says when we’re not really free, because we have constraints, but we can have a sense of freedom.

    Nicholas 1:07:27

    And so she says, it’s really important that despite life’s constraints, that we feel our freedom through our choices, we always have the freedom to make choices. And even if those choices are, you know, self-sacrificing, self-sacrificing. So obviously, as a parent, you make a lot of choices for children.

    Nicholas 1:07:57

    That mean you’re giving up time or money or maybe a passion. And that’s an expression of freedom as well, or delayed gratification that you won’t do something now because you know, it’s going to benefit you in the future.

    Nicholas 1:08:15

    So that’s probably something your community struggles with, they’ve probably lost freedom, maybe with their physical movement, and that would be very hard to deal with, because it’s something they go through every waking moment.

    Nicholas 1:08:38

    But I would hope that maybe this guy need that we, yeah, we’re not really free, but we can have the feeling of freedom in our choices, I hope that could answer that help them with their decision-making process. Along with this idea, that you if you can feel your life is moving forward in a positive direction.

    Nicholas 1:09:07

    And even in that moment, you can feel a little bit better because you’re kind of feeling a key guy. This one quote this from my favorite quote, many realize the power of a sense of mission. So this is what Kenny wrote in her diary. As she was writing this, this book called granted.

    Nicholas 1:09:34

    So yeah, this is the book Ikigai. Yeah, so she published this Polish in 1966. So not from this book from her diary, she wrote, in the afternoon, I went to the van Gough exhibition in Kyoto, and I was overwhelmed by powerful grain. And I felt once again that I should devote myself to expression at the exhibition.

    Nicholas 1:10:00

    During my train ride home, I continue to ruminate on this and repeat it to myself, devote the rest of your life completely to this mission, I should finish my dissertation as soon as possible. So I may embark on work to fulfill my mission. And so her mission was writing, and she desperately wanted to write this book.

    Nicholas 1:10:25

    So imagine yourself, if you’ve gone into the city, have you gone to some exhibition, you’re inspired by an artist, and then on the train ride home, you’re thinking, I’ve got to devote myself to something in my life. And that is so powerful, I mean, to think. Not for Your glory and fame, but because you have this strong sense of mission. And so maybe you’ve found that what you’re doing now, and I think I’ve found it tomorrow I’m doing now.

    Bill 1:11:04

    That’s brilliant, man. Speaking of that, where can people find out more about you and your podcast?

    Nicholas 1:11:11

    So they can go to Ikigaitribe.com. And I have actually got some worksheets, that sort of similar to the Venn diagram that they could download. And I’ve also got, like your podcasts.

    Bill 1:11:25

    Awesome mate I’ll make sure that they’re links available at the website recoveryafterstroke.com that link back to Ikigaitribe.com, where people can learn a little bit more about you listen to your podcast, and I feel like we’re going to have to have another conversation about the amazing work that you’re doing. Because I think it’s going to make a massive difference to my community. Thanks so much for being on the podcast

    Nicholas 1:11:51

    Thank you for having me and I look forward to us catching up in person hopefully soon.

    Bill 1:11:55

    Same here mate I wouldn’t enjoy anything more at the moment. Thank you so much.

    Intro 1:12:04

    Discover how to heal your brain after stroke go to recoveryafterstroke.com. Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individual’s opinions and treatment protocols discussed during any podcast or the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.

    Intro 1:12:31

    All content on this website at any linked blog, podcast or video material control. This website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis, the content is intended to complement your medical treatment and support healing.

    Intro 1:12:47

    It is not intended to be a substitute for professional medical advice and should not be relied on as health advice. The information is general and may not be suitable for your personal injuries, circumstances or health objectives.

    Intro 1:12:59

    Do not use our content as a standalone resource to diagnose treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional.

    Intro 1:13:08

    Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitation program based on our content if you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional.

    Intro 1:13:22

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    Intro 1:13:38

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    The post Finding Purpose After Stroke – Nicholas Kemp appeared first on Recovery After Stroke.

    1 hr 14 min
  • Art Therapy For Stroke Recovery – Noreen Walsh

    Noreen Walsh discovered art therapy, 30 years after experiencing a stroke due to complications from Hemolytic–uremic syndrome (HUS) at 18 months old.

    Socials: www.instagram.com/noreenwalshart/

    Highlights:

    01:01 Introduction

    08:33 Hemolytic uremic syndrome
    15:07 Recurring pain
    20:36 Art Therapy
    33:27 Stroke Survivor
    41:37 Choosing the right people
    51:08 One way to reach out
    55:43 Find a happy place
    1:05:29 Make something good out if it
    1:17:19 Neuroplasticity

    Transcription:

    Bill 0:00

    My favorite are sunflowers.

    Noreen 0:05

    Lots of people love the sunflowers

    Bill 0:07

    Man, they are so cool. I love them. And I love the ones especially the ones that are half sunflowers,

    Noreen 0:12

    They were always my favorite because I did them during the first wave of COVID. And I needed something within lockdown to keep my head calm. And because I was doing the petals with a palette knife, which was very therapeutic. And the dissenters with the, like a very fine liner brush. That was so mindful to me, and it just kind of took me to a happy place.

    Intro 0:48

    This is the Recovery After Stroke Podcast, with Bill Gasiamis, helping you navigate recovery after stroke.

    Introduction


    Bill 1:01
    Bill from recoveryafterstroke.com this is Episode 120 and my guest today is Noreen Walsh. Noreen was only 18 months old when she experienced a stroke that might have been a result of hemolytic uremic syndrome, which is a group of blood disorders characterized by low red blood cells, acute kidney failure, and low platelets.

    Bill 1:24

    Initial symptoms typically include bloody diarrhea, fever, vomiting and weakness. Almost 30 years later, Noreen still lives with a deficit from stroke, and has taken up art therapy to help manage the pain. Now it’s on with the show. Noreen Walsh, welcome to the podcast.

    Noreen 1:43

    Hi.

    Bill 1:44

    Thanks for being here. I really appreciate it.

    Noreen 1:47

    It’s definitely good to be here. I’m glad you asked me.

    Bill 1:51

    You’re an Aussie in Brisbane. I’m an Aussie in Melbourne. And the reason why we connected is because somebody from the other side of the planet introduced us.

    Noreen 2:01

    Yes, yeah, I was really taken aback. I always get lovely people that I connect with via Joe. And when I did the podcast with him, he said you’ve got to reach out to Bill. I know he’s in Australia. I just don’t know where I was like, Okay.

    Bill 2:23

    Yeah, that’s Joe Borges. From The Neuro Nerds Podcast.

    Noreen 2:29

    Absolutely.

    Bill 2:31

    He’s a cool, dude. I had a real good time interviewing him as well. And he told me about you and that you guys found each other online and became mates.

    Noreen 2:41

    We did, it was a really, really quick friendship that was made and I I’ve always found friendships really difficult to maneuver through. And for me and him, we just connected on so many things so quickly. And then we ended up getting each other through a lot of rough moments in time. And, I think that built on our friendship very quickly.

    Bill 3:12

    Wow so he told me that you guys had a connection, I didn’t realize that it became deeper because of you guys helping each other through a rough patch. So how long ago was that?

    Noreen 3:28

    Probably sometime last year. I was having a really rough time, I’ve battled depression a lot over my life. But I had a really rough time, because then my pain levels went up. And, effectively, I couldn’t do the art that I wanted to do.

    Noreen 3:52

    And so I ended up messaging him a lot going, Oh my God, this really sucks. And I don’t really know how to make it a positive thing. And in all honesty, the more I listened to his podcast, the more I felt, like, part of my story was being heard.

    Noreen 4:13

    You know, so it felt like a warm cup of like hot coco or something that’s like, Oh, yeah, this guy gets me. And so it was really for me. And when he was going through rough patch, I helped him with affirmations and trying to get to the point where he was okay in himself too.

    Noreen 4:40

    Man, that is so cool. So I interviewed Joe for Episode 98. And he was so high energy he was so full on. I had trouble keeping up with him, but he’s got an amazingly big heart. And you could just feel he’s complete dedication to making things better for people, and I couldn’t believe that I was listening to that guy, talk about the things that I was also thinking and feeling.

    Noreen 5:08

    And I just thought there is another person like me that thinks like me. And I feel less alone as well, like, that’s what I got out of it. And I was so grateful to connect with him. So I kind of understand where you’re coming from, but I never reached out to him during a hard time. So that must be even more brilliant that you are able to get that kind of support from somebody from so far away.

    Noreen 5:38

    Oh, definitely. Before Joe, there wasn’t a stroke community for me to connect with. And because I had it so young. And, I think as I’ve gotten older, you know, it’s a sad thing that more and more people are having strokes, but for our community, as a whole to understand each other.

    Noreen 6:06

    It’s good, because there’s always somebody out there that can say, oh I went through that, or Oh, my goodness, yep. I’ve fallen in public before or whatever it is. And, I couldn’t believe that I made such a connection with somebody that I just sent him a piece of my artwork through a competition I did.

    Noreen 6:31

    And he was so enthusiastic, even wrote me and said, I put this up in my room. And it’s there. And it motivates me. And so it was, both of us, I think building a very strong connection from the get go, which was really lovely.

    Bill 6:52

    Yeah, you know what, I love? I love that I completely agree with what you said about, it’s not good that people are having stroke. But it’s good that stroke survivors are finding each other. Because I’ve been told as well, that people that I’ve had on my podcast, who have put themselves out there have made it possible for other people to reach out to them, and connect with them.

    Bill 7:14

    Because even though you and I are both in Australia, we don’t know each other and we don’t live near each other. So it’s difficult to find people that are like you even nearby right? So it’s unlikely that we’ll come across another stroke survivor at the cafe having a coffee that gets us and that is like us. But this massive worldwide community. I mean, there’s definitely somebody that’s as crazy as me out there that gets me and he’s like me, and I get them.

    Noreen 7:45

    Exactly, and I think that’s what’s great about Joe that he connects me with so many people so, so early on, and some of them just needed advice on how to step forward, or they needed my kind of what I went through to understand they’re not on their own with this. And I even met another pediatric stroke survivor, Ella Sophia, and she’s such a sweetheart. And she does motivational speaking. So it’s been really, really awesome to be able to connect with so many people.

    Bill 8:27

    Yeah, how old were you when you had the stroke and what kind of stroke was it?

    Stroke caused by Hemolytic uremic syndrome

    Noreen 8:33

    So, I was 18 months old when I had the stroke. But the thing with me is that I had something called Hemolytic uremic syndrome. And it’s a thing that attacks your kidneys, and in my case, my red blood cells. And so the stroke wasn’t even the main thing. It was like a symptom or side effect of what this condition gave me.

    Bill 9:13

    So you were 18 months old. I mean, that’s a tough way to get introduced to life isn’t it for anybody. And how old are you now?

    Noreen 9:26

    I’m 33. So it is a tough way to be introduced to the world. But it’s also a blessing because every stroke survivor I have talked to has always talked about the before or before I could do x or before I could do this. Whereas I’ve always had a struggle with walking and the same way as other people or you know, when In the playground playing with my peers. So I’ve had that experience of, I know I’m different. And that’s my normal, which is, probably slightly walked. But it’s been beneficial for me because I haven’t had the before and side of it.

    Bill 10:20

    Yeah, that’s less mentally challenging in that you do less comparison, and therefore, you don’t dwell on the past. And therefore you make yourself feel better, I made a post just yesterday on Instagram, which is that people should never compare themselves to somebody else to yesterday, they should, to somebody else at all, they should compare themselves only to themselves and who they were yesterday, and, as opposed to who they are compared to somebody else.

    Bill 10:51

    And the reason being is because if you compare yourself to other people, you’re bound to get disappointed, because we don’t know the circumstances under which somebody is recovering or getting better. And we only see this little picture, especially on social media.

    Bill 11:07

    So it’s a really poor picture about what’s really happening in a person’s world. So it made a huge impact. Like when I posted this, I never expected that it was going to make such a massive impact on the people reading it. And it basically said, the best person to compare yourself to is you yesterday, and not somebody else today.

    Bill 11:34

    And you haven’t had any one to compare yourself to just because you were always born that way, and I can see why you think it’s a blessing, and why you’re just getting on with the way things are and you’re finding or looking to find solutions? Is that your kind of personality? Are you a problem solving kind of gal?

    Noreen 11:56

    I think I was always going to be able to solve problems because my parents were never the type to take anything lying down. So if they were told she can’t do X, Y, and Zed, and they would deliberately go out of their way to say, hey, okay, let’s find things online, let’s do this, or, okay, there’s things, you know, we can encourage her to do this activity.

    Noreen 12:33

    And, and sometimes it meant going privately to, you know, an OT and a physio, but for me, problem solving has always been okay, well, this is an issue. So it’s a brick wall, I can get through it, I can go around it, or I can go over it. But there is definitely a way. And I think it’s partly, you know, my upbringing.

    Noreen 13:04

    But partly, it’s been kind of forced upon me as if you’ve got no other choice, you can have bad days. But at the end of it, you have to pick yourself up and go right, tomorrow. How am I going to solve this? And move forward so yeah, probably a bit of both.

    Bill 13:24

    Yeah, I love it. So you can have bad days, I agree with you, right. And we should give people the courage to experience their bad days, and even dislike them. And I’m okay with that. But let’s try and make tomorrow, slightly better. Just slightly, even if it’s just a little bit, just so that you can see that you can have a positive impact on how you felt yesterday.

    Bill 13:46

    And therefore, hopefully, that encourages you to aim for feeling maybe 2% better on day two, and maybe 3% better on day three. And, that doesn’t sound like a lot, but then that adds up. And by the end of the week, you’re 7% better and that’s awesome. It doesn’t have to be 100% does it?

    Noreen 14:09

    No exactly. And I do think, you know, I’m good at being grateful for the little things like okay, well, I managed to walk to the end of my road and back without getting out breath or, you know, I managed to go to a night out that takes my sensory system to like overload, but I managed it without the anxiety that I thought I would have.

    Noreen 14:42

    There’s there’s always something you can be very grateful for and sometimes it’s a stretch, especially this year. It’s been a stretch for all of us. But I lost my train of thought, oh I hate when that happens. Yeah, I think there’s always something that you can be greatful for.

    Recurring pain from the stroke

    Bill 15:07

    Yeah, I agree with you. So, you know, with regards to the pain is the pain due to spasticity? Or is it some other issues that are causing you pain?

    Noreen 15:16

    And so I started off having headaches when I was around 12 years old. And the doctors said this is because she’s had a lot of surgeries. And a lot of things have happened to her brain. So they were basically saying it’s nerve pain, but they didn’t really know how to explain it to us at that point.

    Noreen 15:45

    And they said, when she’s out of her teen teenage years, it will go away. It’s just another blip that’s happened. And that technically didn’t go away till about four years back when I had an intervention. And I had something called a log gak tool infusion. And it’s the strangest thing. But it stopped headaches completely.

    Noreen 16:23

    The pain I have now, compared to that is more functional pain, I believe, like I have a pelvic pain and I have a back pain. And I’m on medication for it. But it’s always a tight rope to kind of kind of balance out, okay, what doctors are telling me I can do, you know, pacing yourself.

    Noreen 16:53

    And also realizing that you’ve got to do something each day. Otherwise, if we always listened to our body, I always say what I wouldn’t get up in the morning, if I had to listen to it every day. So sometimes it’s about balancing out what the doctors are telling you, but also what you’re capable of. And because neuroplasticity is amazing.

    Bill 17:24

    I hear what you’re saying. So what I’m getting from it is, so I have pain on my left side. And my constant thing is to go and see a chiropractor, or a massage therapist or somebody. And they might help loosen muscles, and get rid of the tension and all of that kind of stuff, literally for a day or two, and then it comes back.

    Bill 17:50

    So it doesn’t stop me from doing anything because my walk isn’t interrupted. So my gait hasn’t changed. So it’s not impacting my pelvis or any part of my spine or anything like that. But it’s constantly tense on the left side, both my hand and my leg and my chest and all that stuff.

    Bill 18:13

    So for me, it’s not dramatically painful, but it’s always there. And it’s not something that I can stop having, I can’t stop it, I can’t stop from having it. So if I did stop doing things that might have painful, then I wouldn’t be doing anything as well. And I find myself forgetting about pain, when I’m doing things that I love.

    Bill 18:38

    And the more I do what I’m loving, the less I’m focusing on my problems. And then I kind of noticed them later at the end of the day when I’m pooped when I’m exhausted, you know, as I’m winding down for an hour or so before I go to bed as I’ve kind of noticed that more then. But then I focus on well the day’s been amazing. And I’ve had amazing experiences and I’ve done great things, and it’s probably a decent price to pay.

    Noreen 19:13

    I think it’s the mind-body connection. And that’s why when I paint my pain is non-existent. But when I get up from my easel, I’m like, oh, okay, I’m pretty sore right now. And that’s because the attention goes straight back on to like your default and I can understand what you’re saying that it’s not. It’s not overly painful, but it’s always there, like a background radio station that you just like yeah, I’m totally used to this, you know, but it’s there.

    Bill 20:05

    Yeah. And sometimes you tune it out. And then sometimes you notice it. And that’s the strange thing about background music, you do sometimes notice it and you go, maybe that’s a song that you like that you notice. But sometimes you notice it because the song you didn’t like. So I get what you’re saying and. And then what comes into my mind is that art for you must be that mindfulness state, does that explain the kind of state you go into?

    Art Therapy


    Noreen 20:36
    Oh, definitely. Art has always been a calm place for me. Even when I was a kid, I remember I couldn’t really go out running with these girls that were, you know, doing, hopscotch, and whatever other little games. And then my dad bought me an acrylic paint set.

    Noreen 21:03

    And at the time, I was obsessed with Monet. And so I got a Monet sticker book. And honest to goodness, I forgot that there were people out there playing things that I couldn’t do. Because it was like, creating a world at that point in time, it was like creating a world that really accepted me.

    Noreen 21:27

    So going back to me as an adult, it’s definitely a mindful thing for me, because it’s a safe place for me to even just, even if I’m having bad day, splash paint on the canvas. And I’m like, oh, okay, that kind of worked out, or it didn’t. But either way, I’ve gone to an incredibly calm place in my head. And, that’s always been the, I guess, the therapeutic side of things for me art.

    Bill 22:02

    If I can for a second, ask a question to see whether or not you know why it works on you. So I know you get out of your head. But why does it work for you? What changes in your body that makes all the pain go away while you’re painting, like, what is it that occurs? How are you aware?

    Noreen 22:23

    I mean, I think part of it is conditioning, because art was always something that I could do. In school, it wasn’t a binary subject, it was a subject that I could interpret. And it didn’t matter the way I thought about it. So I think part of it is the conditioning of you’re in a really safe room.

    Noreen 22:58

    And, anything can go here, but you’re in the driver’s seat. So I think part for that, for me, is someone not telling me what my pain should be like, or what it is. It’s me saying, I’m in control of what’s going on in my body right now. And I choose to focus on the things around me.

    Noreen 23:24

    And so I do think it’s the background conditioning, and maybe the mind body connection that happens when I put on, I put on really good music. And I have so many songs on my Spotify, and I have this gorgeous candle. And I don’t know if you find this with noises with sensory stuff, but for me, my candle crackles. And it immediately sends me into like this then kind of mind frame so even before I start painting, I’m like, oh, okay, this is nice. So I think it’s a real mixture of things there.

    Bill 24:12

    In so many layers, I know what you’re saying. And it’s true. Different noises and sounds take me to different places, and they make me forget about where I am. For me, it might be the river, the wind, things like that, you know, things that I’ve experienced in nature when I’ve been kind of at one with the world and with nature, like when I go camping or something like that.

    Bill 24:36

    And then hearing those noises again, just takes me back there. But what it sounds like to me that you’re saying is that you gain control in a place where we have so little control. You seem to get back some of your sense of control and you can control an environment that you can do when you’re sitting at your easel.

    Bill 24:59

    Every thing just comes into line, you control all the things that are important to you that matter, everything else goes away. And then you can just create and because of the gifts that people like Monet gave us, and those types of artists from, you know, back early in the 1900s, it meant that your artwork didn’t have to look like the subject or anything, and it didn’t matter, and you didn’t get judged, on whether it was a perfect replica of the subject, it just mattered that there was something on the canvas.

    Noreen 25:39

    You’re so dead on there with the Monet reference, because I love that it didn’t need to look like the exact thing you were painting, it wasn’t realism, it was an emotional kind of roller coaster. And, I think that’s why the money became very symbolic of the joy of painting.

    Noreen 26:07

    And even to the extent that in my last year of primary school, everyone got like a going away award or something tangible. My teacher, got this, this massive money book and wrote in it and the date, and what I had achieved, and what I could achieve, and let this book always be, basically a moving forward point for you to refer back to.

    Noreen 28:36

    And then I still think it’s just something that even in this day and age, with painting, and there is still this, this argument over Monet-type Impressionism and, and realism. And and it’s an interesting situation, because I guess I’ve only been doing it for years. But I know that my artwork kind of stands out. But it can also take people by surprise because they either like it or they don’t.

    Noreen 26:44

    And 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 now how long will it take to recover? Will I actually recover? What things should I avoid in case I make matters worse?

    Intro 27:56

    Doctors will explain things. But obviously, you’ve never had a stroke before, you 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 recovery after stroke.com where you can download a guide that will help you it’s called seven questions to ask your doctor about your stroke.

    Intro 28:22

    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.

    Noreen 28:44

    I always believe that if you like it, great. If you tell me you don’t like it? Well, that’s okay. I’ve done my job too. Because it’s the emotional side of it. I’ve done that. Okay, cool. Tell me why you don’t like it. You know, so it’s interesting.

    Bill 29:01

    Yeah. I love the way that you relate to Monet because my, my sense of his work is that I could put something on canvas and not be concerned about how I’m going to be judged. You know, if I had to do a Caravaggio. I mean, I would never pick up the brush, it would never give me the confidence to allow myself the gift of expression. I would never ever do it.

    Bill 29:26

    But take a Monet or a Picasso and then just go, you know what? I can paint as terrible as Picasso can. And that worked out for him. So if it worked out for him, why wouldn’t it work out for me? And that then opens up this possibility of art to everybody on the planet, not just a guy who can do an exact replica of the person that’s sitting across them across from the easel.

    Bill 30:00

    And then what that did? Why those guys were so amazing is that that created all the things that had to happen so that in 1995, or whenever it was that somebody decided that art as therapy was an important thing that allowed for that part of the world to exist.

    Bill 30:21

    So that now, when you hear about art therapy, it’s like, oh, yeah, yeah. And everyone knows about it, and it’s not a big deal. And people want to be a part of it, and people are gaining so much from it. And this is the beauty of, of allowing people to express themselves, no matter how they do it, and what it looks like.

    Noreen 30:44

    Oh, absolutely. And, you know, that’s kind of how I fell back in love with art, I went through a very bad breakup, and I went to art therapy. And I thoroughly enjoyed it, but had no expectation of what I was doing. I just thought I’ll just go and I’ll try and enjoy this.

    Noreen 31:08

    And I got a lot of great feedback from people. And so I started taking extra classes, and different classes that would kind of evolve what I was doing. And I’m forever grateful for that break up, because I probably would be, maybe, you know, painting, but painting as a hobby, instead of pursuing it as a career. So yeah, art therapy is incredible.

    Bill 31:42

    Are you weird, like you’re grateful for the breakup?

    Noreen 31:47

    I know, look, if you asked me at the time, I would not be. I do think some, like, I’m a big believer in the universe and universe giving kind of signs of where you should be going. And let’s just say I was ignoring every sign that the universe was giving me. I’m so glad that it happened. I still to this day will say that we amicably broke up. But yeah, I think it just, I don’t know, it just guided me back to where I was supposed to be going. It is bizarre. But yeah, I’m weird.

    Bill 32:37

    Yeah. Good. It’s bizarre. And it’s wonderful. Because you know what, hopefully, people who are listening and watching will get out of that. Is that sometime in the future when something terrible happens to us? It’ll be terrible at the time, but it doesn’t have to be terrible forever after that.

    Noreen 32:56

    Exactly. Exactly. I think so.

    Bill 33:04

    Do you got me?

    Noreen 33:07

    Where’d you go?

    Bill 33:09

    I’m here.

    Noreen 33:10

    You’re here. Oh, okay. You can still see me. Hang on. Okay. I’ve got you. Oh, oh, my god. This is so weird. Okay, if I just stay here. Okay. I got you again.

    Stroke Survivor

    Bill 33:28

    I had you the whole time. No worries. So yeah, something that we experienced now. That’s bad. Now, it doesn’t have to be bad for if it doesn’t it?

    Noreen 33:39

    No, no. And, and I do think there’s a lot of, you know, things that are out there that are bad for us. And that teaches us certain lessons in life. And I think those things we have to go through. Saying that I will say that I’m here for a reason. You know, so instead of it being I’m a victim of stroke.

    Noreen 34:20

    I say no, no, I’m a stroke survivor. And I’m thriving. And I think it’s more about turning it around as much as you can. I mean, look, I think you’ve got to embrace the bad all the time. And if you don’t, it’s gonna come for you.

    Bill 34:39

    That is it. And it’s part of acceptance. You know, I was told by a coach long time ago, I was told what you resist persists. And that’s so true, right? It’s like what I resist persists. And it was and she said it to me so many times Louise Gilbert’s name. She’s amazing lady and she said it to me so many times. In so many different situations, so she said at once, when I was being afraid of doing this thing, right, so the podcast is something that I was afraid of doing a long time ago.

    Bill 35:13

    And it stayed, it stayed within me, it wouldn’t go away. And it bothered me that I wasn’t doing it. And it used to rule my entire life that I wasn’t doing it and that I was afraid to put myself out there. And she would say, what you resist persists. So that’s a great thing that I was resisting. And it was persisting, right.

    Bill 35:32

    And then I would do something that wasn’t positive. And I wouldn’t overcome something, for example, like, I wouldn’t be grateful for something that happened. And I couldn’t find myself to get to that point of being grateful for the lesson. And she’ll say, Well, what you resist persists.

    Bill 35:50

    And what she was saying is that little brother, that drama that that terrible situation is causing, it’s gonna be there if you don’t deal with if you don’t go for it. And I learned a lot from not resisting things, because how do we resist it like, I, of course, don’t want terrible experiences. But when they come, what can I do about it? Like I can’t do anything about it.

    Noreen 36:16

    Exactly. And it’s, it’s about, you know, understanding that we’ve all got things that have happened to us in our life. And, you know, I had a friend the other day that said, Oh, I don’t want to complain about my bad work week. And I said, Why not? Because, you know, you’ve gone through so much. And I said, it’s all relative, you can have a bad work week, and still talk to me.

    Noreen 36:47

    I’ve probably had a bad lifetime, but it’s fine. Because it’s all relative. We all have had an I don’t believe I’ve had a bad lifetime. But so far, it’s been a hell of a frickin journey. But it’s I think the stroke definitely has changed me into probably maybe a different person than I would have been. I don’t know. I think about that a lot.

    Bill 37:19

    Yeah. look, it has me, I was 37. So there was definitely a before stroke me. And then after stroke, me and I’m, and now I’m a better version of myself. I live with this stuff constantly. And I suppose some of it’s a good reminder, hey, you’re not that special mate. You know, relax, put your head in, you know, take it easy, and pay attention to what’s important.

    Bill 37:40

    So they’re constant message of what’s important, isn’t far away. Like, it’s just a moment when I sit down and pay attention to my left leg or my left arm. So it’s made me a better version of myself, I never would have been doing a podcast if it wasn’t for the stroke.

    Bill 37:59

    Honestly, you know, I never would have reached so many people around the world, I never would have met you and all the amazing people that I’ve met. I was so so narrow-minded and, and closed, you know, in the way that I used to go about expressing myself and meeting people and the stroke has enhanced who I am.

    Bill 38:21

    So much Now, that doesn’t mean it wasn’t difficult. Just listen to Episode 100 of the podcasts, you know, we’re interview my wife, I mean, we went through four years of shit. And, it took me eight years to get back to work and all this stuff. I mean, it hasn’t been easy, but even during those difficult times, I was getting better and better at being me.

    Noreen 38:47

    I think that’s it, it’s kind of you, you mentioned your wife and I think as a family, even though you and I went through it. Family plays such a fundamental role in, like our recovery and who we are or if we need a cheerleader, I mean, my brother, there’s only three years apart from us. But he was always even my dad was always my protectors, and my mom was always my confidant for anything.

    Noreen 39:25

    And I think that open dialogue helped a lot because it made me stronger. And, now, you know, in the past maybe four or five years after going through a lot of I guess neuroplasticity, and I went to a neuropsychiatrist, I’ve been able to explain these issues that I’m dealing with right now.

    Noreen 39:54

    Or could you please turn those lights down because it’s way too bright in here. And look, I have my own. I live with my folks, but I have half the house. So if I don’t like something, I can take myself into the art room or my downstairs sitting room area and just chill out. So it’s a weird thing I used to think of, it’s me that’s going through all of it, but they were right there.

    Noreen 40:28

    They were kind of like a witness to everything. And I think about what it would have been like, I think it must have been hard for your wife, who had a husband before, but maybe your personality is slightly different than it was before. I think it must have been really tricky for her to work out. What was what?

    Bill 40:55

    Yeah, absolutely. She’s got the before stroke version. And then she’s got the after stroke version, and I was initially extremely rude and abrupt and short, and angry, and all sorts of things. So she did a tough, and then I’ve calmed down a lot. And I’ve learned to apologize more, and say, I love you more, and all that kind of stuff.

    Bill 41:15

    So right now, I’m a better version of myself than I ever was. But I was trying to get there and in those angry days, in those difficult days, I was trying to get there, I just didn’t know the path, right? The message that I’m getting from you, is it it’s important who you surround yourself with, and you were lucky, your parents were there because you had a stroke when you’re 18 months old.

    Choosing the right people for better stroke recovery


    Bill 41:37
    But then, if people that the listeners are hanging around and not supporting them, and I’m not saying that they feel sorry for you all the time because of your stroke, or whatever. But if they’re just not the kind of person that enhances your time together, maybe it’s time to just add a few more people into the mix, the type that are going to enhance your appreciation for that connection.

    Bill 42:07

    And what else I’m getting from you is that the awareness of how we even though we’re going through the tough time, having awareness of how what we’re going through is impacting other people, gives them a little bit of a break as well, like it gives them like a, I understand you as well, you know, I know that you’re feeling pain, and you’re suffering while I’m suffering. And I understand you’re like I get it, that would be such a great gift that you give that to your parents and your brother.

    Noreen 42:40

    Oh, definitely, I think it’s an ongoing discussion that has to constantly happen, because I think neuroplasticity always goes on but the constant discussion with your family, so they know where you’re at. But going back to what you said about friends, and people you surround yourself with. I learned the hard way. I came over to Australia when I was 18.

    Noreen 43:16

    And, I met a lot of people through college, and they were nice, but they weren’t the type of people that I would want to go out to clubs with or that kind of thing. And the friends that I did make, were very pushy. With you should be doing this. And I think, if you have issues with your frontal lobe, which, I mean, I had a partial hemispherectomy when I was eight. So if you’re always in a state of learning through action, then there is going to be a timeframe that you learn that not everybody has your best intentions.

    Noreen 44:10

    Not everybody will have.

    Bill 44:12

    You’re best interests.

    Noreen 44:14

    Yes. And I think it’s rough but the group of people that I go to coffee with now and hang out and go to art galleries. It’s people that if I walk slower, they walk even slower, even if it means they’re walking like next to zero. They’ll do that because they get that this is the way it is or I went to the art gallery last year with a friend and we stopped about four or five times because we both have different pain levels for different things.

    Noreen 44:57

    And we both stopped so I think It’s about. We’re all getting older. And I think it’s about the maturity levels of others. And, that’s why, like, the podcast, your podcast, and like Joe’s podcast is so important, because I feel like, it’s not just for us, it’s for people that have no idea that, you know, I mean, the craziest thing is that, um, I mean, Joe has said this to me, I’m very lucky that I have the physical side of things, is definitely noticeable.

    Noreen 45:40

    And the thing is, I always think, Oh, no, I would much rather not have the limp or the the hemiplegic side, which is just the weakness, but people give you a lot of slack. They, they make allowances for you, because they see it. And Joe prefers people seeing it rather than not seeing it. And so it’s an interesting concept.

    Bill 46:10

    And I know what Joe means, because I go through that, right. So if you looked at me, everything looks fine. And I used to get that a lot, I used to get what you look good. And just because I looked good, I could have looked amazing on my worst day, and nobody would have known that I was having a bad day.

    Bill 46:28

    So constantly having to explain how I’m having a bad day. And what that feels like, is extremely frustrating for me and the person listening, because they have no experience. They use their eyes, their eyes is giving them feedback. And then that’s it. But what that gave me was an appreciation for mental illness, and what people go through when they have mental illness, which is not visible.

    Bill 46:54

    And they can explain it to somebody who’s not been there. And it’s like, okay, I can relate with you guys, now, I’m on your side, now, I totally get it. And that means I can be more gentle. And I can be more accepting and understanding and therefore can be another ally for those people.

    Bill 47:17

    So I got that gift from it. And I’m like, wow, I never in a million years would have been able to relate to that person, like I can now. So all I do now is when I’m feeling like I’m having a bad time or day or whatever. It’s like, I just do the general conversation. Like, I’m not up for it today. But I feel like it I want to or whatever.

    Bill 47:43

    So I kind of compensate with the lengthy explanations by just making them short and sweet. Now I’m not up for I don’t want to do that anymore. And that makes it easier and when I need to go home because the party is too loud. Or the lights flashing are doing my head in. It’s kind of like, yeah, it’s time for me to go, man.

    Bill 48:06

    Yeah, I’m just tired and I want to go home. I didn’t sleep last night or wake up early. Like I give the mundane general responses to things. And people go alright, he’s going home. They don’t need to know any more.

    Noreen 48:21

    No, and I think that’s it is, it’s kind of like, you know, you’re in a circle knows you. But at the end of the day, the amount of times I’ve said I’ve got a headache. When I know the lights are just going off. And if I don’t get out, they’re not going pretty. And I’ll and I’ll say I’m really tired or Geez, I’m just not feeling it tonight not happening. And and people need to be able to relate to what you’re saying. So if I said, Oh, I have a muscle spasm disorder, and the lights are gonna go off.

    Bill 49:00

    The eyes are gonna glaze over.

    Noreen 49:03

    Yeah, it’s so much easier. And I think as I’ve gotten older, the you know, being open to educating people as much as I can. Without them feeling like I’m preaching to them is a good thing because people want to help but when it’s not visible or where the I always find on the elephant in the room and like especially if I go to a lot of like an art gallery openings and things that people would normally go to if you’re an artist.

    Noreen 49:54

    But if you have to go out and meet the people that have been Given the talk or on the panel, I have to pretend that their eyes don’t glaze over. Because when I introduce myself, their eyes do glaze over. And I have to say, are you okay, is it hot in here? Yes it’s a bit hot in here, isn’t it? Yeah.

    Noreen 50:18

    And then redirect it back to the talk that they’ve been talking about. But with people my own age, it’s easier to say, you know, I’ve been asked, like, have you broken your leg? And, you know, are you alright? Do you need any help? I’m like, No, Do you need any help?

    Noreen 50:42

    So I, it is a very fine balance, because I don’t think society has really accepted people with disabilities, I want them to. But I do think there’s a lot more education that needs to be going into, and I don’t know how that’s gonna work, whether it’s like us, or Joe, or I don’t know.

    One way to reach out

    Bill 51:08

    It’s not going to work. I hate to burst your bubble. And I don’t say it because I don’t think that we should stop trying. It’s just because the majority of the people are well, and that’s just the numbers game, right. So we have to just keep doing what we’re doing and get creative, right.

    Bill 51:27

    So one of my amazing coaches, a guy who I’ve interviewed as well, for the podcast, Marvin Oka, once said to me that what he wants to do he wants to impact the most people in the world that he can, and he can do that one by one where you can go to the top.

    Bill 51:44

    And I did understand what that meant. So he works in organizations, where he consults, like for banks, and all that kind of stuff, right. And he’s a very heart-centered, amazing kind of guy. And he said, it’s too hard to go one by one from the bottom up. But if I go to the top and influence that person in a positive way, and he spreads that love down.

    Bill 52:13

    Then my one hour with that guy has impacted 6000 people positively 6000 hours to do that. So the point I’m trying to make is that I tried to work out how I’m going to change people’s understanding about stroke and how to bring stroke survivors together. And I thought I can go to my local rotary, and I can stand there in front of 30 people, and maybe one of them is a stroke survivor.

    Bill 52:49

    Or I can do a podcast and reach the world. And if I do a podcast, it takes the same amount of effort as going to a rotary presentation. And if people listening don’t know what rotary is, it’s like Toastmasters. In that they invite people to go and speak. It’s a charitable organization that invites people to go and speak. So if I do a podcast, this podcast has now 3000 downloads a month.

    Noreen 53:19

    Wow. That’s amazing?

    Bill 53:22

    Yeah, how good is it? I say, How can I get in front of 3,000 people every month, I mean, that’s near impossible. Otherwise, so this is how we win that battle. And, bring more awareness to our community and its needs. This is how we do it. And you participating makes it possible, right? That’s the best way to do it.

    Noreen 53:47

    That’s it, I want to be able to, I mean, I’ve even said this to Joe, I really want to be able to be that person that I needed when I was like young because I I just didn’t have a reflection of myself at all. bounce back to me. So I didn’t, I knew I was me. But there was no there was no group or comparison.

    Noreen 54:16

    And I, I think being able to voice who I am in a vulnerable state, which is hard, anyway, but to say look, this is what happened to me and this is how I feel. And to get a conversation going with people that have heard me say these things and it opens up a huge dialogue.

    Noreen 54:45

    And that’s why I’m really grateful to you and Joe because that’s what it does. It opens dialog to other people go, okay. This is, if I can, if I can positively affect somebody else’s life at the moment. Or if they need somebody that they can connect with then I’m happy to, to do that. And I do incorporate that in my artwork. And because I just want to spread positivity, there’s too much like, horrible things going on. At the moment. Yeah.

    Bill 55:24

    All right. I’ve been looking at your art, as we’ve been talking through.

    Noreen 55:27

    Oh, you have not, oh okay.

    Bill 55:31

    Now it’s time for the judgement. My favorite are the sunflowers.

    Find a happy place


    Noreen 55:43
    Lots of people love sunflowers. That’s so cool.

    Bill 55:46

    Man. They are so cool. I love them. And I love the ones especially the ones that are half sunflowers.

    Noreen 55:54

    They were always my favorite, because I did them during the first wave of COVID. And I needed something within lockdown to keep my head calm. And because I was doing the petals with a palette knife, which was very therapeutic. And the centers with the, like a very fine liner brush. That was so mindful to me. And it just kind of took me to a happy place. So I think I’ll always go back to some flowers, because they’re so good.

    Bill 56:34

    And then the other one, which I really, really love, is the one where the girl in the red dress with the umbrella is walking down the Parisian street with the lights on either side and the Eiffel Tower in the distance. And the beautiful leaves that have started to change because I think maybe they’re representing autumn. Or fall for the American listeners. I mean, that is an amazing piece as well. I think that is brilliant.

    Noreen 57:04

    Thank you so much. I love doing that piece that’s called Paris awaits. And I’ve been to Paris a few times when I was a kid. But I wanted to bring this whole romanticized version of it, that it is in the distance and the fact that she is on her own, but it’s not a romantic setting, per se. So she can be her and be herself and enjoy life without the partner. So I kind of wanted that kind of juxtaposition of, of how I painted versus what the story is.

    Bill 57:44

    Well, I got exactly what you just said. So to me, it reminded me of the romantic side of Paris, the and Mae, it kind of had me wondering about her. And then he had the Eiffel Tower as the place to go to like this is that where we’re headed, you know, we’re headed to see it up close because right now, we can see it from far.

    Bill 58:06

    And I see myself there. And it reminds me of a trip that we didn’t get to do this year, we were planning to go to Paris this year with my wife, but because of COVID we didn’t get there. And I reckon I almost would have wee’d my pants when I saw the Eiffel Tower. And I had I would have tried, like, Oh my god, there it is, like, let’s go there.

    Bill 58:14

    Like let’s get there. But she’s just strolling along, I would have been in a rush. And she’s just taking her time. And she’s doing it nice and calmly. And I would have been like, Let’s go, I want to see how big this thing is I want to stand underneath it, I would have been doing all that stuff.

    Noreen 58:43

    I think it’s, it’s a reflection of where I wanted to be in my life at that point that I wanted to enjoy the small moments and really wanted it to come across. Like she’s taking it all in. I think part of my story is the journey, not the destination. So all of us who are going through recovery.

    Noreen 59:10

    And for me, it’s like, well, let’s enjoy this ride. That, you know, there’s something I can do today that I wasn’t able to do a week ago. And, that comes through a lot with me and I have I think part of my love life has been difficult and rocky over the years and I think that’s that kind of comes across. I always put a woman in a painting where she’s elegant and on her own but she’s doing it she’s rocking it and it’s like, you know, I am woman hear me roar kind of thing, you know.

    Bill 59:46

    Oh man, It’s what I get from her. Let me tell you, I’m not artistic in any way. But I have put paint on a canvas just to give myself the opportunity to experience what that’s like. I do go to galleries and I do look at art and I do appreciate the process that an artist goes through to do that, you know, and I’m watching your little video now of you painting a landscape, you know, it’s sped up.

    Noreen 1:00:17

    I have a couple, or is it the one where it’s got a lot of lavender on it?

    Bill 1:00:23

    No, it’s all the yellows and red hues and goes into orange. And then it’s got some rocks on the left there.

    Noreen 1:00:35

    Yeah, it’s my desert landscape. And I went really loose. Because I’ve been fighting the, the kind of idea that I have to be a certain way within the art community. And those two landscapes were, okay, I have an idea. And I’m not going to write it down. And I’m not going to draw it out.

    Noreen 1:01:02

    I’m literally going to throw it on the canvas and see where it goes. And so for me, that was a lot of art therapy, because I just wanted to see how it was gonna turn out. But I got a lot of lovely feedback from those two pieces. And I’m wondering if my art therapy side came through a lot more, because I just wasn’t worried about what people thought,

    Bill 1:01:25

    Yeah, it was just stuff going on a canvas. And the result, let me tell you, it’s pretty awesome. I love it. It’s a great image. And I’m wondering, has there been somebody reached out to you to purchase your paintings? Like, are you selling them? Like, how is that evolved? Has that become something that is happening?

    Noreen 1:01:48

    It’s happening? It was very difficult this year, because I was selling my artwork via cafes, and coffee and coffee shops, and a lot of them shut down. Because of COVID. So, I’ve been trying to push my artwork and sell it on via Instagram, because I’m still building a website.

    Noreen 1:02:16

    And people can still find me on Instagram and Facebook. But I think if I build the website, people are more likely to be encouraged to purchase. So at the moment, it’s word of mouth. And I’ve had a few sales where it’s been like, Oh, you’re so and so from that cafe.

    Noreen 1:02:43

    And I had one beautiful lady, she saw my artwork in a, and a coffee shop in the West End. And she bought one piece there. And then she found me on Insta, and bought three more pieces. So I think it’s also a learning curve for me on when to push a sale, and when to say, hey, it’s there, it’s available, you can see you can purchase it. And, you know, direct message me If you like it, I won’t lie. It’s a very tricky one for me to work out where the line is.

    Bill 1:03:25

    I think you’ll work it out. I mean, because your ad speaks for itself. So they kind of sell themselves. Because they do they really do. They’re, for somebody who’s been at it for four years. There’s a lot more going on there than I would have imagined because those landscapes and those trees with the leaves and all that kind of stuff.

    Bill 1:03:50

    To me, they just seem like they’re pieces that I would be proud to have you know what I mean? To hang on my wall. They’re just lovely. So I love it. Now we and I suppose you don’t want it to be called this you know if and this is just me thinking out loud. You know prints sometimes I just buy prints.

    Noreen 1:04:15

    Yes, I actually I’ve been looking into prints and I’ve got a line of positive prints that I I put on a painting or an image on the print but I put a positive affirmation on there like you know I can remember some of them, some of them are like, you know, and today I will not regret anything I do today I will be present within the moment.

    Noreen 1:04:52

    You know, those kinds of things that I think people would especially this year I think would really relate to, I think its saturation and its accessibility. So I think I either have to oversaturate people with the, you know, the stuff online, or I kind of like, almost like leaving a little bit of cheese and going, come on, you know, you want this. And it’s a bit tricky.

    Make something good out if it


    Bill 1:05:29
    I love it. You know, what I love about this part of the conversation is that what hopefully we’re doing is demonstrating to people listening, stroke survivors who are going through a really tough time, that from a tough time, something amazing can come. And something that is joyful and brings joy to you, and other people can also come.

    Bill 1:05:46

    And if, you know, you’re that way inclined, you know, it might even make a few hundred bucks for you or whatever. And that’s really why are focused on talking about your art other than the fact that it’s brilliant, I’d love to focus on the fact that it wouldn’t have been possible. If something shitty didn’t happen in your life.

    Noreen 1:06:11

    I think that that, like, I really appreciate you focusing on it, because it is a big part of what makes my art unique is a The way I see color is so different. It’s so vibrant. And that’s how my brain processes things. But also, because of the partial hemispherectomy I, there’s a disconnect between the left side and the right side of my head. So there’s like a disconnect there.

    Noreen 1:06:46

    So my brain has made all these other connections. But if I have to do something that involves symmetry, I have to like, do the left side and then turn the canvas upside down to see how I’m supposed to do the right side. So when I did the Eiffel Tower, that’s how I had to do it. And it’s a it’s a big, I don’t think I would have been as progressive in my artwork, if it hadn’t been for the stroke.

    Bill 1:07:24

    Yeah. I love that. I love that. That’d be a great time lapse to see you turn it upside down to try and work it out.

    Noreen 1:07:31

    I’ll try and do that next time in one of my videos, that’d be cool.

    Bill 1:07:34

    I mean, that would be awesome. With a little bit of an explanation explaining why you’re turning it upside down. That would be phenomenal. I mean, and that’s what people need to know about you and other artists who have a different way to put paint on a canvas or to do what they need to understand.

    Bill 1:07:54

    This is what makes that paces unique. It’s not that I just slapped it on. And I’m good at putting paint on a canvas. Like it’s a struggle, man. Like I had to turn that upside down to work this stuff out. Because I’m missing that part of my brain. I’m actually missing it. It’s not there. And it doesn’t do this, but it does this. And what a great What a great way to describe to somebody neuroplasticity, like, this is how you overcome stuff, you find new ways. And it’s bizarre and it’s weird, but it works. So who cares?

    Noreen 1:08:24

    Absolutely. And I think, you know, mainstream art, it’s still very structured, and it still wants you to be a certain way. And like I’ve been called outsider art artists because and anything that especially disabilities, it’s seen as good for you rather than wow. That’s so cool. Yeah, I get the whole Oh, no, no, don’t say anything when they say Good for you. And I just smile. Yep. Cool.

    Bill 1:09:04

    If I break your painting arm, who will that be good for? Will the art then become good for you or good for us. I mean, we would never do that. But I mean, sometimes I’m that brutal in a conversation when somebody says something that is stupid, but not from meaning harm.

    Bill 1:09:21

    It’s just from ignorance. It’s they don’t know any better. And I get it, it’s okay. But sometimes I love being that brutal and just saying, you know, stuff like that, like, if I break your arm and then you had to paint with the other arm like, would that be good for you or good for me? Like who would that be good for?

    Noreen 1:09:39

    I struggle with I I used to be very much like that. And I still struggle with it. Because sometimes I’ll say it and my friends will be like, you can’t say that out loud. Noreen that’s not something that is suitable. Like it’s fine, you know, it could be as simple as I see someone on the street that is wearing something, I think for God’s sake, seriously, that doesn’t suit you. And I don’t realize how loud I’m saying it. And I’ll say that.

    Bill 1:10:15

    Were the same as those people I know. So it’s all good. That’s why we love them and we forgive them. It’s no issue. It’s just that the time like, you just needed to be told, and I’m happy to be told when I’m wrong. So it’s not that I don’t think people should ever be wrong or say the wrong thing, just out of ignorance, because I’m also ignorant from so many other things. I don’t know everything.

    Noreen 1:10:35

    Well, I mean, I think that’s the good thing about our district community, we completely accept that there are things we are not good at, and that we don’t know everything. I think, a lot of like, probably from 20 to 30s. They know everything. And it’s the younger crowd that I got on very well with older artists. But my peer group, I had one person actually avoid me in a show.

    Noreen 1:11:07

    And I was like, desperate to talk to them. And I was like, Oh, why? So I sent them a message on Instagram said, I’m sorry, we didn’t get to talk. But here. I just wanted to say what you said was great on the panel, and blah, blah, blah. So I thought I am not going to be ignored. You’re not, going to dodge me. And but I think also, no matter what career I went into, I was always going to have a struggle with with people being I guess, ignorant.

    Bill 1:11:43

    Yeah it’s ignorant. And it’s not a bad word, I don’t want people to think that it’s a bad word, it just literally means that you have no awareness of a particular situation. And sometimes you might not even have awareness that you don’t have any awareness. So that’s kind of what ignorance is.

    Bill 1:12:00

    So it’s not a bad thing. It’s you don’t know what you don’t know. So I like that you kind of a little bit cheeky in pushing the envelope with people who are uncomfortable because you’re doing it from a place of being genuine, of being genuine and more, more of just going, Hey, I’m alright, you’ll be alright. When you talk to me, there’s nothing gonna go wrong. So get a bit more comfortable with getting to know me. And maybe that means that you can have a conversation with somebody else as well, who’s like me?

    Noreen 1:12:30

    I think that’s right. It’s kind of like trying to build acceptance within a community that, that, in general, I think society’s is it’s getting there. It’s what we’re working on it. But you know, I’ve had, oh, my goodness, I’ve had taxi drivers. Say I will pray for you. And I’m like, no, mate. It’s fine.

    Noreen 1:13:00

    It’s good. And that’s coming from a place of good intent. But then you have to go No, no, it’s cringy, totally cringy. And this is just weird. It’s so weird. And I try. I think the only way I made friends over here is that Aussies are a lot more open, and a lot less. I don’t know in the UK. We don’t talk about it. And we don’t talk about the issue at hand.

    Noreen 1:13:37

    Whereas the first party barbecue I went to with friends, they introduced me to the host, and he went, Oh my god, did you break your leg? And I went, No, I’m a stroke survivor, man. And he went, cool here have a beer I’m like alright. It was the simplest way of just saying. All right, cuz that was easy. Excellent. Let’s move on. And, that’s, yeah, I do appreciate that about all these because.

    Bill 1:14:09

    We are a curious bunch. So we tend to ask out of curiosity, and if you’re gonna have a physical, visible, physical issue, and you come to Australia, expect to be asked, expect somebody to say what happened to you? And they’re gonna just take it in their stride when you give them the answer. Like, they’re not really, they don’t really care, that something happened to you, they just, it’s a way to break the ice, you know? And, yeah, and that’s kind of how I see it when I go somewhere.

    Bill 1:14:41

    And people ask me, you know, why don’t you eat cake or, or, or gluten and that kind of stuff. It’s because carbs and sugars. They fry my brain instantly and I can’t deal with it. Right? So I don’t need it. But if you ask me that question, at dinner, I’m going to tell you the answer and it’s not going to be I don’t like It’s gonna be, I don’t need it because I had a strike. And when I sugar and carbs, it messes with my brain. And you do whatever you want with it after that.

    Noreen 1:15:08

    Absolutely,

    Bill 1:15:09

    You know, we can talk about it, or we don’t have to. But I’m not going to say just because I’m not wearing it. I’m not eating it just because like, I think people deserve to be given more genuine responses when they’re asking a question, and they’re not really thinking about what they’re asking. I think that’s how I kind of rock the boat. If you asked me a question mate you are going to get the answer.

    Noreen 1:15:39

    That’s kind of how I am I’m like, Well, if you ask the question, Don’t be shocked at the response. And don’t be upset if you don’t like the response, because you’re the one that asked the question.

    Bill 1:15:52

    It’s never gone bad for me, but I have got a few of those. Oh, you know, uncomfortable moments. I was like should be right, mate. Don’t worry about it. It’s fine.

    Noreen 1:16:03

    I’ve gotten those uncomfortable moments. And it’s like, it’s normally happened. You know, like, you know, years back when I used to go clubbing. And it’s happened in that scenario, because people don’t see it. They just see your face and they see your shoulder.

    Noreen 1:16:22

    They don’t look like at your arm or your leg or whatever. So for me, you know, I remember a bouncer. He, almost didn’t let me in a club because he said, you’d be drinking. And I went, No, mate I have a limp. I had a stroke. And he’s like, Oh, yeah, move it along.

    Noreen 1:16:42

    I’m like, No, no, seriously. And I had to show him my leg support. And he almost wet himself. He was like, Ah, I said so can I go in? Yeah, I’m like, Alright, have a nice night. And so it has been entertaining to see how people are because, I think the more knowledge we have, though, it gets better. Like I love that book. The Brain That Changes Itself. I love it.

    Neuroplasticity

    Bill 1:17:19

    Dr. Norman Doidge. And his other one that the yeah, I forget the other one. But the brain that changes itself? Yeah. It’s a brilliant book. And Norman Doidge is one of those guys who has done a lot of work in this in the field of neuroplasticity. And, you know, he’s spoken all over the world in Australia everywhere. And he’s just amazing.

    Bill 1:17:48

    And, it’s great that technology, that knowledge of neuroplasticity has only really been around, properly accepted, probably since the early 2000s. So it’s in its infancy, you know, and it’s the first thing that you hear about when I was in hospital in 2012. Like, that’s the first thing the doctors told me about.

    Bill 1:18:11

    They said to me, Well, the nurses not the doctors, I said, Do you know about this thing called neuroplasticity? And and of course, I had already done that. That research and learned about it. But I also interviewed Michael Merzenich, who was one of the founding they call him like the godfather of neuroplasticity, who discovered neuroplasticity was happening when they invented the world’s first cochlear implant, cause they invented this technology to attach the people’s heads to restore hearing in people who have never heard before.

    Bill 1:18:46

    And he said it was just a machine. And that machine is pretty much useless. Unless the brain adapts to hearing from that machine, rather than from this ear. And that’s kind of when the light bulb moment happened. And they went, Oh my god, like the brain is changing. And prior to that there wasn’t enough evidence and the thinking was that the brain once you have it, once it’s done, it’s done. It doesn’t change.

    Bill 1:19:15

    So, Norman Doidge, like looks at Mako Merzenich, as this godlike kind of person. And in the book, the brain that changes itself. He talks about him for the majority of the book, and it’s like he’s got a bigger man crush on him than I do. So yeah, it’s a great book, anyone who’s interested in learning about neuroplasticity and getting to the bottom of it.

    Bill 1:19:37

    What he does is he shares stories of people who achieved something amazing that they technically weren’t supposed to achieve after they had a neurological injury or some kind of condition. And it’s like, I think about seven or eight stories, that have become chapters and it talks about them and how those people have overcome great adversity because their brain changed. And because doctors have stopped thinking about the brain as being this solid thing that once it’s done, it’s done.

    Noreen 1:20:11

    Absolutely. And I think, you know, the more as you said, the more people understand better. Everyone else’s, for I still remember what I don’t personally remember my parents remember being told that, you know, your daughter’s never gonna walk or talk again and get a house without any stairs, so she doesn’t have to do it. And my mom, dad got house with stairs.

    Noreen 1:20:42

    And even if it was, if it was like, we’re gonna do five steps a day. And that’s, that’s what we’ll do. And, and I think it’s, it’s a testament to the fact that, that back then they really didn’t they, as you said, it’s only been in the early 2000s, that people have actually discovered the neuroplasticity, kind of and that the brain is forever changing. Like I I get really excited at the fact that you and I, in five years from now, could be able to do so much.

    Noreen 1:21:24

    Even just a year from now, we’d be like, Oh, did you know, I couldn’t jet ski before but now I can, you know, it’s just, it’s amazing. And I think anyone who’s out there that is at the beginning of their story. I would say just never ever take to obviously listen to your doctors, but never take everything as this concrete situation. Because I think doctors are used to dealing with people that don’t recover, as well as you and I. And they can understand. They still don’t understand that we’re doing well. We’re thriving.

    Bill 1:22:09

    You nailed it. Because they don’t catch up with us. 5,6, 7, 10, years down the track. They only catch up with us if we’re unwell. And while we are not unwell and not going back to them, they don’t have that relationship with us. So they get to see us when we run well, but they don’t get to see us when we’re well.

    Noreen 1:22:30

    Exactly. I was in hospital last day for like, and pain. And I was on like a ketamine infusion. And all this stuff makes you so loopy and strange and almost in a state of not attached to your body at all. So it’s kind of a dissociative kind of feeling. And you have all these people talking to you.

    Noreen 1:23:00

    And I said to my OT, could you slow down like you’re just talking way too fast. And he wasn’t, but because my brain was taking the medication. So I find it difficult because I always justified OT’s and physios oh it’s not fair because you only see me when I’m really struggling. And I’ve been able to do so much before this. And they just, they normally say to me Oh, that’s great. Noreen and they’re looking going, no.

    Bill 1:23:35

    They don’t believe you. Maybe it’s because you don’t appear trustworthy or something? Well, you’re on drugs, like you probably weren’t trustworthy. You know.

    Noreen 1:23:50

    That’s true. When you’re on those drugs. You get checks. It’s like being in prison, you get checks every couple of hours.

    Bill 1:23:59

    Hey, Noreen. I’ve really appreciated getting to know you and chatting to you. Thank you for being on the podcast. I’m so glad Joe connected us and I’m gonna let him know that the first 10 minutes of this episode was really pretty much it was a Joe Borges love fest really is what it was.

    Noreen 1:24:20

    Oh, it was, it was, I mean, we’re crushing on him hard. No, this was really great. And I’m so glad he connected me with you and, to understand your story as well. And just what you do is you connecting a lot of people with others and helping them through it all and, we can definitely be grateful for that.

    Bill 1:24:45

    Ah, it’s my pleasure. I really enjoy it. Because so far I’ve got to meet about 120 people that are like me, and that was never, I never knew that many people could possibly be like me.

    Noreen 1:25:00

    So it’s um, it is as we’re going through life, we’re meeting more and more because the internet’s connecting us through. I think that’s a wonderful thing about it. It’s connected as all.

    Bill 1:25:14

    Yeah, absolutely. And I’m glad we connected. So thank you so much.

    Noreen 1:25:18

    No worries Thank you.

    Intro 1:25:27

    Discover how to heal your brain after stroke, go to recoveryafterstroke.com.

    Intro 1:25:32

    Important importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. The opinions and treatment protocols discussed during any podcast are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed all content on this website at any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis.

    Intro 1:26:07

    The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice. The information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional.

    Intro 1:26:32

    Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitation program based on our content if you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional if you are experiencing a health emergency or things you might be called triple zero if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department.

    Intro 1:26:56

    Medical information changes constantly. While we aim to provide current quality information in our content. We did not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content. If you choose to rely on any information within our content, you do so solely at your own risk. We are careful with links we provide. However third-party links from our website are followed at your own risk and we are not responsible for any information you find there.

    The post Art Therapy For Stroke Recovery – Noreen Walsh appeared first on Recovery After Stroke.

    1 hr 28 min
  • A Brain Aneurysm That Burst At 40 – Claudia Faulkenberry

    Albert Rand Faulkenberry was watching TV when he experienced a hemorrhagic stroke due to a ruptured brain aneurysm and that’s about when Claudia Faulkenberry became the caregiver to a stroke survivor.

    Socials: www.instagram.com/braineurysmlife/

    Highlights:

    01:21 Introduction

    03:41 Hemorrhagic stroke
    13:04 Quick emergency stroke treatment
    18:31 Regaining fine motor skills after a stroke
    23:46 Stroke neurological fatigue
    33:25 Dealing with stroke changes
    41:57 Seeking help
    49:41 The growing stroke community
    50:20 Emotional and psychological recovery
    01:04:34 What we learn from stroke

    Transcription:

    Claudia 0:00

    Yeah, while there were a lot of personality changes, his personality is different, his likes are different, his responses to things are different than they were before. And we were married for three years before he had a stroke. So we weren’t married for very long and had newborn twins.

    Claudia 0:21

    They were nine months old, but when he had a stroke, so I had figured out how to be with this new person. And we went through, he came home in a wheelchair, he came home in a hospital bed, we were transferring and bathing and not to be too, you know, wiping and going through all of that, as a newly married couple in all honesty, I mean, you know, three years in is not very long.

    Claudia 0:56

    And we were trying to figure out how to be married to each other before all of that happened, especially with kids and then to have that kind of come in with a challenge.

    Intro 1:08

    This is the recovery after stroke podcast, with Bill Gasiamis, helping you navigate recovery after stroke.

    Introduction


    Bill 1:21
    Bill from recoveryafterstroke.com This is Episode 119. And my guest today is Claudia Faulkenberry, as a mom of nine-month-old twin girls. The last thing Claudia imagined was that Rand her husband of just three years would end up also being dependent on her full time due to a burst brain aneurysm.

    Bill 1:45

    Now before we get started, if you have ever wondered what else I can do to help you with your stroke recovery, you should know that you can now get recovery after stroke coaching right from the comfort of your own home. I too am a three times stroke survivor and brain surgery survivor.

    Bill 2:00

    And I have built for you what I was missing when I was sitting home from hospital in the hopes that you don’t have to do stroke recovery as tough as I did. Support packages give you access to a variety of tools 24 hours a day, seven days a week, so that you can also work on other areas of stroke recovery that you don’t get the chance to at physical therapy, or rehab.

    Bill 2:23

    With tailored support available for less than $8.50 per week, all recovery after stroke support packages, bring stroke recovery to you in the comfort of your own home. To try out recovery after stroke support and see if it is right for you. You will also get the first seven days free as well as a 30-day money-back guarantee no questions asked.

    Bill 2:44

    As a bonus, you will also get to face to face zoom support calls with myself to take your recovery to the next level. Go to recoveryafterstroke.com/momentum to sign up. It won’t cost you anything for the first seven days, and you will get a full refund. If you’re not happy after 30 days. You have nothing to lose and everything to gain. Now it’s on with the show. Claudia Faulkenberry, welcome to the podcast.

    Claudia 3:11

    Thank you happy to be here.

    Bill 3:13

    Yeah, happy to have you. My wife, I reckon has competition now because I was definitely hard her in the running for the award of best wife for a stroke survivor ever. But you’re very, I don’t know, you might convince me but right now you’re very close second.

    Claudia 3:34

    Oh, well, thank you. Thank you. You might want to ask my husband about that. But yeah, thank you.

    Hemorrhagic stroke

    Bill 3:41

    Tell me a little bit about what happened to him. What’s his name?

    Claudia 3:45

    Rand. Well, his first name is Albert. But he goes by Rand his middle name. And he had a hemorrhagic stroke on the evening of January 27, in 2015. So he was working the night before, had a really late night and then I had gone to bed. He was up watching TV and the dog woke me up.

    Claudia 4:08

    And later I realized he was having a grand mal seizure and went to a very nice University Hospital down the street from us and had multiple surgeries and spent a lot of time there.

    Bill 4:22

    Was it dramatic in that situation at that time was a dramatic or was it pretty sort of calm. Did you have time or was he out?

    Claudia 4:33

    No it was, we didn’t even realize what was going on, the emergency team came. He ended up actually having recovering very well and responding very well to the point where they laughed and said, if you don’t feel better, I will come back.

    Claudia 4:51

    So he was complaining as we went to bed of tingling in his hand and a really bad headache. And so we called them back in and he went from there. By the time He got to the hospital he had. And before he could get in and just do a coil, he had a second bleed.

    Bill 5:07

    Yeah. Right. And it was an aneurysm that burst.

    Claudia 5:12

    Yes.

    Bill 5:13

    Did he ever have any symptoms, any idea that that was sitting in his head?

    Claudia 5:18

    I know, we, we think back and notice a couple of different changes that happened. He had some blood that started appearing in his eye, and we just kind of blamed it on allergies. And he was having some headaches. But again, we were kind of blaming it on lifestyle and allergies. And we had a couple of episodes of high blood pressure, but it all kind of, you know, if they put a new cuff on, and he sat down for a little bit, it was fine.

    Bill 5:46

    Those symptoms and those things that happened are sometimes things that we can look at, in hindsight and say, maybe that was related to the stroke. But sometimes, maybe it wasn’t. And did you find yourself going back and going, that definitely was something that was related?

    Claudia 6:02

    No, I mean, we just kind of discussed it a little bit, but there really were no, two signs now. lifestyle-wise, we own some restaurants and a bar, and she was getting up early to work really early at the restaurants. And he was staying up really late to work late at the bar. And you know, I think that had a lot to do with that as well. And then genetics is my thought.

    Bill 6:28

    Yeah.

    Claudia 6:30

    I have thought about getting them tested to see if there isn’t any sort of genetic link, because they’re coming up with more and more genes that may be a sign of a increased risk for an actual rupture. But I haven’t found a place to do that yet.

    Bill 6:44

    Yeah, I’m sure there’ll be one is, there’ll be one in the next two or three weeks that’ll pop up. They seem to be happening more and more. That’s one of the really good things that’s happening now with the stroke recovery, stroke survival, preventing stroke and finding causes for stroke that previously weren’t unable to be found.

    Bill 7:05

    This new technology is just changing the game. And it’s happening really quickly. And it’s making a lot of difference for people who are going through that, that what if it happens again, I don’t know what caused it and the anxiety that is created for people that not knowing about how they got into this situation in the first place.

    Claudia 7:24

    We’ve asked a lot of questions. We’ve asked a lot of medical staff, especially as it was going on, and we felt like it was not, you know, everybody just said it’s genetics. It seems to be all we can answer at this time. You had a weak area. A lot of people have weak areas, and they don’t ever rupture and unfortunately, his did.

    Bill 7:46

    Yeah, sometimes it’s that way. That’s what happened to me. Mine wasn’t an aneurysm. It was a faulty blood vessel. So it was malformed. So that means it couldn’t cope under the regular process of blood pressure, not the high blood pressure, low blood pressure, just the regular blood pressure was too much for it.

    Bill 8:06

    So in the end, it just gave way and it popped. It’s one of the smaller ones. But it was genetic. I was born with it. And for a lot of people, these things that I had, which was called an arteriovenous malformation. They hang around for a long, long time. They stay benign, they do nothing for some people they pop and they don’t only appear in the head, they don’t only exist in the head AVMs can happen anywhere in the body. And I imagine that’s similar to aneurisms because you hear some people have an aneurysm on the blood vessels around their heart or near their heart. Luck of the draw.

    Claudia 8:45

    Yes.

    Bill 8:47

    It’s a draw you don’t want to be in, but it is the luck of the draw.

    Claudia 8:51

    It is well I tease him and tell my husband that you know he’s a bull, people have tried to knock him down and he just gets right back up and keeps going. So I don’t know that anything will ever take him out. He’ll live forever. It’s great. I mean, he really has done an amazing job of recovering.

    Bill 9:12

    So how badly affected was he during that hospital stay and then and then the short time after hospital what were the symptoms that he was experiencing?

    Claudia 9:22

    Well, they because of his ICPs being so high and the hospital the majority of the time we were there he was pretty much comatose they had pretty much put him in a an induced coma throughout that. They threw everything in the kitchen sink at him during that time.

    Claudia 9:38

    A lot of fluid issues in the brain a lot of problems with balancing everything. He ended up having a sculpt back on early just because of all those problems. Went to a Shepherd Center here in Atlanta, which is a fabulous center for brain and for spinal injury and I’m he was very, very out of it horrible left side neglect, wheelchair, had a lot of trouble with hallucinations and understanding everything that was going on around him.

    Claudia 10:13

    Decided that we had two sets of twins, twin girls and new born twin boys, which we don’t have, and had four dogs, I was very busy in his life, in his mind. And that took time. But as time went on the brains had an amazing job of really fixing and healing about, we had some difficulties, because everybody kept telling me to go with that and to go with the flow.

    Claudia 10:41

    And to just keep saying, uhuh, uhuh. And I had made a promise to him when we were doing our vows that we would not lie to each other. Even if it was the hardest thing to say to somebody, we would always be as honest with each other as possible. And I think that’s something that’s really served our relationship well, in all of this that’s going on, it’s not always the easiest thing to do.

    Bill 11:01

    So when you’re being honest with him, and saying, darling, you’re imagining our kids and 25 dogs and all that stuff, what was he coming back with?

    Claudia 11:11

    He kept saying, but I know, I had names for the twin boys, Andy and Jacob, we just brought him to work in his mind to show everybody all of his friends in New York, and it must have been something that was going on in his mind while he was in that induced coma, because he had an entire story together.

    Claudia 11:30

    And we actually have really good friends. And we only allowed one of our very good friends into the neuro view, you know, intensive care unit with him. And she has a husband named Andy and a child named Jacob. And I think that’s where he got the names of the kids.

    Claudia 11:48

    And they were very good friends in New York. So I think that’s where that came from, too, but it comes around. I mean, he was seeing robots and samurai swords, and all sorts of craziness. And then the left side neglect, because the way the brain bleed was, you have a lot of trouble losing things.

    Claudia 12:08

    So something you would see and then would disappear. And then he would see it and see it disappear again. And that was very hard for him to to grasp and understand. But that seems to have corrected itself. As well, again, the brain has been fascinating to me.

    Bill 12:25

    Yeah. So a lot of that would have been as a result of the secondary part of the impact of the brain. So the bleed usually affects, you know, one really precise point where the bleed’s occurring, and then there’s this outer area that gets affected it kind of is collateral damage to what happened in that little section, then that’s the first thing that comes back online, this outer area that’s been impacted, but not damaged, severely.

    Bill 12:48

    And then as recovery and healing and inflammation decreases. It comes back on and you get these things come back. But what’s really important is how quickly you get somebody back to the hospital, and how long that outer area was out of action and starved of oxygen or interfered with.

    Quick emergency stroke treatment

    Bill 13:04

    So the quicker you can get somebody at a hospital the better. How quickly Did you guys end up getting into hospital? I know that you had some care, someone came and had a look at him and then said to him, you’ll be right. But then how quickly after that, did he end up going?

    Claudia 13:17

    Oh, I think we call them back within an hour, it was not very long. And so they came back in and I asked him a bunch of questions he walked out of our house told me where his keys were to move his car and all that, call my parents get them over here, blah, blah, blah.

    Claudia 13:32

    And we actually live less than a mile away from the hospital. So once the ambulance got there and got him in now the process of scanning him and looking at it and then deciding to coil and then by the time they were ready to get them off to the OR coil him and having a second bleed.

    Claudia 13:52

    You know, there was more time within their hours. You know, but I think having such a fine institution right down the street from our house really saved his life and made it so that he can be back at work and walking and driving and all those things. And then obviously, the rehab center that we went to.

    Bill 14:12

    Yeah, and obviously you.

    Claudia 14:16

    And his parents and our children, there’s a lot that goes on. It takes a village, right?

    Bill 14:22

    It sure does. So what was it like for you though? Was it scary? You seem like a very upbeat, positive person. And you probably pushed through most issues and dramas in life. But was it really like?

    Claudia 14:37

    Terrifying. I knew it was brain thing by the time he was leaving. And I was worried it was a brain tumor. In all honesty, I work in cancer in the medical field, and so I of course went to a brain tumor. By the time they told me it was a second bleed I broke down. I lost it. I knew with the first bleed that there were chances of him leaving within a few days even of being in the hospital and just needing a little bit of rehab.

    Claudia 15:06

    But by the time they informed us of the second lead I lost it. And I knew he was never going to be the same. I mean, that was the biggest thing. So I had a lot of ups and downs. There was I remember a wonderful woman whose husband was in the room next door, who came over and sat with me.

    Claudia 15:29

    And there was one day I just completely fell apart. It’s gotten much easier over the five years. But I will be very honest, there were some really tough, tough times, and I did not always keep it together.

    Bill 15:45

    Who did you call on to get you through those tough times your husband’s out of action? Who do you call on?

    Claudia 15:52

    We luckily have a wonderful support system here. And then from where I’m from, as well, we had people coming out of the Woodworks from every direction, which was wonderful. I had caringbridge set up and I had meal train set up. And I had people who would just come and sit next to me.

    Claudia 16:13

    I have friends who left their families and flew in and stayed with my kids and our house to help us get through all of it. It was an incredible, beautiful thing to see and experience, especially now when I look back on it. I’ve tried to thank everybody 1000 times, and I know I haven’t done anywhere near the thank yous that I should have as a good Southern woman.

    Bill 16:39

    Just tell them, thank you and then just multiply it by infinity. So you don’t have to keep saying it.

    Claudia 16:45

    Yes, definitely. And I had moments of realizing everything that went on and happens and that I’d forgotten about too. So luckily, our kids were really, really young. They don’t remember any of it. I mean, they remember their daddy being in a wheelchair. And they remember kind of having some hard times and the name for my Instagram page braineurism is our daughter’s saying that that’s what their daddy had was a brain aneurysm.

    Claudia 17:10

    So that was kind of cute, fun name that I went with. But there’s still times that I cry. In all honesty, there’s still times that it’s hard. You know, we went from having a very tight partner in life that really was taking 50% If not, sometimes more of the load. And all of a sudden you find yourself doing it all and having to take care of somebody it’s really tough.

    Bill 17:38

    So it’s good for the kids that they were young, but you’re a mum looking after really young kids, and now caring for your husband, and you’re not a carer. In the definition of a carer, you’re not a caregiver, until really, you come home. And now you’ve got all the tasks to do you’ve got everything on your plate. What was it like? trying to juggle everything and be there for your husband? Did you experience any feelings of guilt or pushing yourself too far? Or was there any challenges like that?

    Claudia 18:12

    There were, we hired a nanny to come help with our girls. We felt like that’s what we needed to do. And she was fantastic. If if there was something that God sent me, it was our nanny, she was wonderful. But I definitely felt like she was raising our kids. And I wasn’t necessarily I had to be the breadwinner, obviously.

    Regaining fine motor skills after stroke


    Claudia 18:31
    So I had to go to work. I needed the insurance so I was working before all of this, I had to stay working. And then a lot of times the tasks that had to be done at home were all on me as well. So it was tough. Luckily, one great way to rehab your loved one is to give them things to do around the house.

    Claudia 18:54

    So Rand took on some of the things pretty early on of washing clothes, and you know, getting back involved in cooking, and we’re really pushing that with him, especially something I have to be there with him for but working closely with that to get more of a partnership going again.

    Bill 19:16

    It really is part of the rehabilitation. I remember being in rehab, and they took us into a I was in for a month and they took us into a kitchen and they made us make our own breakfast. And at the beginning I was so annoyed because why am I making my own breakfast I’m in a hospital, they should be making me breakfast.

    Bill 19:33

    But I didn’t realize it’s part of the rehabilitation process. And they’re assessing us the whole time to see how we can manage at home to cook a meal or have a tea or do anything like that. So it was interesting. I was frustrated but it hadn’t occurred to me that it was part of the rehabilitation. I just thought they were making us make our own meals I thought it was nuts.

    Claudia 19:59

    Sounds like my husband the first time they asked him to put a shirt on, he looked at them like they were crazy. Been puting my shirt on for decades. Why do you need me to put a shirt on? And then he did it and they rolled the mirror in front of him. And he had missed half of his body with the shirt. And he realized, maybe I need a little bit of help with that.

    Bill 20:19

    Yeah, so gets him to understand that your training has to go into your hand and those little fine motor skills, that put a button into a little tiny hole on a shirt and make sure that it’s straight.

    Claudia 20:31

    It’s still tough. I mean, five years later, it’s still really tough for him. He’s was left-handed before the stroke, and so having a right side bleed, put the left hand in jeopardy, and he’s really learning as much as he can with his right and his left, but it’s been tough.

    Bill 20:52

    What kind of deficits does he still have five years later?

    Claudia 20:56

    Memory is a is a big one. Memory is really tough, short term memory. And we did some evaluations to find out that he’s not coding the memory. So I learned communication made it very difficult. So I learned to communicate with him that I needed to tell him something three or four times in a very short period of time just for that code in his mind.

    Claudia 21:17

    And it usually works very well, sometimes it doesn’t. But for the most part, he’s still got a left side deficit got a lot of pain, as well, some spasticity that he deals with. Sleep issues can still be a problem. And then every once in a while, in addition, like not fully paying attention to that left side and having some problems leaving his arm out of a sleeve or cutting a corner to close, but not nearly as bad as it used to be.

    Bill 21:54

    How old is he?

    Claudia 21:55

    He is 45, he turned 40 in the hospital.

    Bill 22:01

    Yeah, so I’m 46. I had brain surgery in nearly six years ago. In November, it’ll be six years I was 40. And I still have trouble with that stuff as well. So I don’t have left-hand deficits that anyone can see. But my hand feels numb, and stings and burns and does all of that stuff.

    Bill 22:22

    But then when I get tired, and if I’m not aware that I’ve just become tired, I will tend to lean towards the left. So when I walk through a doorway, if I’m not paying attention, I might bump into the top of the doorframe. And sometimes when I get to take my pants off, I’m one of those really, I do two things at once I take my pants off and my socks off at the same time.

    Bill 22:52

    This amazing skill, right? But sometimes if my left sock doesn’t come off my left foot, I won’t know that it’s not off. It feels weird, it feels strange. And if I don’t make myself look down, I might get into bed, or wherever, and not know that that sock has come off my foot or is still on my foot.

    Bill 23:15

    So there’s some of the things that sort of still hanging around. But that have got better and better as time goes by. And but what I think I’ve noticed more than anything is that I’m noticing my deficits less. So if I’m having a productive day where I’m doing things speaking to people going places, I’m noticing them less, which means maybe I’m getting used to it more. Or I’m finding ways to adapt and get around them.

    Stroke neurological fatigue

    Claudia 23:46

    I believe Rand’s adapting, he’s finding different ways to kind of move around and understand and a conversation was difficult for him initially, especially multiple conversations. So socially, we were used to big parties and going a lot of places and he would find himself sitting I would find him or he would find his way into a corner and just kind of sit because it was overwhelming for him.

    Claudia 24:11

    So being able to communicate and listen and make sure he’s not interrupting and staying on the same topic and, and really understanding the conversation we found, in the beginning, had to be more of a one on one, just another couple coming over for dinner. And even in that meal, he might get up and go into the bedroom and just lay down. He just couldn’t handle it and wouldn’t even realize he was really doing it. It just was something that he knew he needed to do.

    Bill 24:40

    Yeah, it’s just brain overwhelm. It’s just too many inputs coming in at the same time while the brains trying to recover while the brain is trying to heal while it’s trying to work out what’s going on with all the missing bits and all the things that it needs to rewire. So it becomes overwhelming and then also becomes energetically tiring because that takes a lot of physical energy.

    Bill 25:03

    Because it just does, I’m not exactly sure why but the brain is the one of the biggest users of energy in the body. So when it’s trying to do too much and trying to recover at the same time, it can’t cope, we’re trying to do the same tasks we did before with a portion of our brain not actually there.

    Bill 25:21

    And therefore, it’s, you know, finding all these difficulties. So the best way to help is to go and step away from all the external issues, the things that are causing that challenge, and then go and rest. And even sleep it off and then recharge the brain get more energy, and allow you to come back, you know, and that was my routine as well. And I often well not refuse but avoided going to loud places, even family and friends and parties and that kind of stuff. We’d be there for a couple of hours, and I would be let’s go home. I’ve had enough.

    Claudia 26:04

    Yes, that’s still, he’s gotten better. But that’s still not uncommon for that to happen. And then a nap in the middle of the day is still pretty common as well, he, um, what about apathy? Do you have any problems with that?

    Bill 26:21

    I don’t have any problems with it. But, it was something that you have to go through, you kind of do have to go through I did. So my issue was that if somebody came to me to whinge about, I don’t know, you know, the length of the blades of grass, that the the guy who cut the grass didn’t do the right job or something, I’d be like, move on, like, whatever.

    Bill 26:44

    You’re wasting my brains processing ability with junk and stuff that does not interest me and shouldn’t interest you just get over it and move on with your life. So I was kind of apathetic in that way. I had no time for small talk and rubbish talk that didn’t make it worthwhile for that person to be around me now it was usually personalities that I did that too.

    Bill 27:14

    So people that were like that, anyway, are the ones that I became empathetic to that I kind of made it obvious. I stopped pretending that I was enjoying the conversation. I know, just put it out there that I’m not interested in hearing what you got to say basically.

    Claudia 27:29

    What about before the brain injury? Would you have felt the same way?

    Bill 27:32

    No, I was kind of polite. I used to try not to annoy people, especially if they were kind hearted, and they had good intentions. I tried not to annoy them and be nasty. And if I didn’t have the permission to correct them, or bring them in line, I wouldn’t. I’m somebody who I’ve learned to be a coach.

    Bill 27:51

    So I coach people through some, you know, challenges in their life. But not every opportunity is a coaching opportunity. You don’t tell people what you’re thinking all the time, especially if they’re nice, and they haven’t given you permission to give them that kind of feedback.

    Claudia 28:07

    Okay, my husband would have told them off. Probably would have looked at them and said, I don’t care. Sorry, not in a really mean way. But he’s not one to sit and let it kind of go on for too long.

    Bill 28:24

    Yeah, I think I annoyed my wife a few times, because I didn’t give her the kind of response in certain situations that she required. Because of probably multiple reasons. Either I couldn’t or I didn’t have the energy or I didn’t want to, or I didn’t want to waste my energy.

    Bill 28:45

    But there was a lot going on in that healing and recovering brain where I was trying to protect myself as much as I could. So if I appeared, you know, apathetic it came across the wrong way and pissed people off. But it wasn’t about them. It was about me, and I couldn’t make it about them. They had to deal with whatever issues they were feeling their own way. And they had to overcome it. If they could, if they couldn’t, well, that was all right to you know, whatever.

    Claudia 29:10

    Right? No, I tell people who call me and want to talk about their husbands or their wives that are actually going through rehab or in the hospital. And I say, and I mean, this. I’m going to say this. I hope it doesn’t come the wrong way. But a brain injury is the most selfish recovery of anything I’ve ever known.

    Claudia 29:37

    And it took my husband three years to look at me and say, how was your day? Are you doing okay? It’s not that he might not have even been thinking about it. And it’s not like he didn’t care. It just, it didn’t come to mind or if it did, he was too tired to even think about bringing it up. So I tell them often that I remember the day where I was when he said, hey, how are you today? And I, I was blown away and so excited that those words came out his mouth.

    Bill 30:10

    Stroke is the, if you compared it to a sport, it’s the tennis player’s analogy, tennis player is all about themselves. It’s about nobody else, there’s no real team discussion or anything else it’s all about them. So is stroke recovery. And, it has to be because there’s so much going on. And it’s so difficult to explain it to anybody who hasn’t gone through it, that you just have to get to the point of going, blah, whatever this is it, I can’t do it, I’m not interested, I’m not going there, it’s not going to happen.

    Bill 30:47

    You have to be extremely selfish. And that I know, for a fact makes it extremely difficult for caregivers, because caregivers are dealing with this new version of their partner or their loved one. And then they are trying to somehow understand their role. But then why is this person behaving differently to me, and then they’ve got to deal with their own emotions.

    Bill 31:15

    And it seems like what we’re doing is not caring about their emotions. And that might be the case like, we might not be caring about it, but not because we don’t care. It’s because we can’t care. So hard to care for what other people are going through when I remember the first day of rehabilitation not even 10 minutes of effort to recover my ability to walk again, had me out for the entire day.

    Bill 31:21

    And that means that I’ve got nothing for you or anybody else. I don’t care who they are and how much I love them. And it’s got nothing to do with you. It’s all to do with me now that you go from being caring and loving to your spouse, to literally a week later not be.

    Bill 31:51

    And it’s not because I’m not loving them. It’s because I can’t and then how do you bridge that gap between this is what they were like, I’m feeling all these emotions, the caregiver, the wife, the partner, whomever is going, I don’t recognize this person anymore. And that’s scary.

    Intro 32:22

    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 that obviously, you’ve never had a stroke before, you probably don’t know what questions to ask.

    Intro 32:47

    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 recovery after stroke.com where you can download a guide that will help you it’s called Seven questions to ask your doctor about your stroke.

    Intro 33:06

    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.

    Dealing with stroke changes


    Claudia 33:25
    Yeah, well there were a lot of personality changes, he’s his personality is different, his likes are different, his responses to things are different than they were before. And we were married for three years before he had a stroke. So we weren’t married for very long and had newborn twins. You know, there were nine months old, but when he had the stroke.

    Claudia 33:51

    So I had to figure out how to be with this new person. And we went through he came home in a wheelchair, he came home in a hospital bed, we were transferring and bathing and not to be too, you know, wiping and going through all of that as a newly married couple in all honesty. I mean, you know, three years in is not very long.

    Claudia 34:21

    And we were trying to figure out how to be married to each other before all of that happened, especially with kids. And then to have that kind of come in was was a challenge. And it forces again, to have some very serious conversations that I think most relationships would not have had at that point.

    Bill 34:40

    There’s no it’s not rare for relationships to break down after stroke when the stroke survivor comes home, because the character can’t deal with it or doesn’t want to deal with it or all sorts of different things and the many people that I’ve spoken to whose relationships have broken apart because of that, they do in hindsight, say they’re better for now.

    Bill 35:05

    Because imagine trying to recover in a difficult relationship at the same time, I mean, recovery would not work. So if there’s distance, and there’s less issues to deal with, then that person can recover, and can focus on being a bit selfish.

    Bill 35:22

    But if you’re somebody who has, if you’re a caregiver who has values around being spoken to a certain way or feel a certain way, or treated a certain way, and you’re not getting that, especially in those short years after marriage, it’s like, I didn’t sign up for this. And if death do us part is down the track, like that’s far away. So what’s this junk coming to me right now? It’s too soon.

    Claudia 35:56

    One of the books I read talked about if marriage doesn’t work out after stroke, it probably wasn’t doing so well before it. And I mean, we didn’t have a perfect marriage before it. We don’t have a perfect marriage now. But we’re working hard on it. We really are.

    Claudia 36:14

    And there’s challenges and there’s days that I’m angry and fed up. And there’s days he’s angry and fed up. I think the other day, he looked at me said, well, do I do anything? Right? Yes, you do. But right now, I’m only going over the things you’re not doing correctly for me. So you know, and I think I get it, I think that conversation could have happened, whether he’d had a stroke or not. Because I being a nagging wife.

    Bill 36:40

    I know what you mean, I feel you I’m probably the nagging one in our relationship. So my nagging maybe went up a notch or two after the stroke, right, because I couldn’t do as much as I as I wanted to. And I used to get frustrated, and we had teenage boys. So they didn’t do anything.

    Bill 36:59

    And they didn’t care to do anything. So it was like, I need help. And I didn’t know how to ask for help. So I would just get really, really tired and frustrated, and then just take it out on everybody and anybody who was in front of me. And of course, Christine, who was the one who was doing most of the hard lifting with cop the brunt of that.

    Bill 37:18

    And then she would be like, what am I doing? Like, what else do I need to do to make this thing better or to get through it, and at the same time, she lost her mum. In those three years when I was in recovery, and just before surgery, and you can’t even imagine I’d say to people, you can’t imagine what it was like to be a stroke survivor, because it never happened to you.

    Bill 37:41

    But I can’t imagine what it was like to be a caregiver because I was not the caregiver. And I wonder about that so much. And that’s why I love to encourage caregivers to come onto the show so we can explore it and get the message out there so that some stroke survivors who are like me, a little bit nasty, can be less nasty, perhaps.

    Claudia 38:03

    I do remember I broke down one time with Rand went even a year after his stroke and said you don’t know what I went through, like I hear from you. But you don’t know when you were laying in the coma at the hospital for 30 plus days, and I was just signing white paper after white paper for you to have whatever surgery they decided was going to be thrown at you.

    Claudia 38:26

    And I didn’t ask me any questions, I just kind of kept going with it. You know, I was going through taking care of the kids working trying to be at the hospital trying to make sure insurance was covering whatever was going on next, hoping you were going to survive and survive to a point that was going to be worth it for him right.

    Claudia 38:26

    And I didn’t want to just keep throwing everything in the kitchen sink at him and and have him you know, not be happy with the situation. I wanted to be doing the right thing for him. And we did have that conversation as well of, hey, I can do this with you. And I understand you are grieving and you’re unhappy.

    Claudia 39:06

    But I need you to find happy if we’re going to stay together. We got to find happy. And it doesn’t have to happen tomorrow. But we need to know that down the road. We’re going to be happy and I can’t make you happy, you’re going to have to figure out how to be happy with your new situation. And I think that’s what really has kept our relationship together is finding happy and being happy with where we are.

    Bill 39:35

    Yeah. And then having that goal for happy out there somewhere that you just work towards. It’s not something that you actually achieve. It’s something that you always work towards. And at that time you’re increasing your level of happiness because that is your outcome. It’s not happy when I get to this stage in life or this milestone. It’s like I’m working towards happiness and let’s see how many milestones there are in there. along the path.

    Claudia 40:02

    Right. And, you know, can you be happy with where you are in this very moment, even though you don’t have everything back that you really want to have back, let’s keep working on that. And it may come back beautifully. It may not I mean, Rand really wanted to drive and everybody at rehab kept telling him, don’t count on it, don’t count on it, don’t count on it.

    Claudia 40:26

    And that was really bumming him out. And I said, You’re you might not and we need to talk about this and what that means. And how you are going to be okay. And he’s had setbacks. He’s had some issues with medication, and it caused him to have a seizure again, and had to stay out of driving again for another six months and be seizure free, all that kind of stuff.

    Claudia 40:50

    And that’s been tough, but he’s been able to figure it, we’ve been able to figure it out. It’s not exactly where we thought we would be. But again, finding the happiness and where we are at this time, and setting those goals and moving forward from there.

    Bill 41:06

    Has Rand sought out other people to help him get through those psychological challenges that stroke throws?

    Claudia 41:17

    No.

    Bill 41:19

    Something that Claudia definitely wants him to do.

    Claudia 41:23

    Yes, I am the, if you haven’t noticed the outgoing, kind of go getting. He is more of the introvert. And more of the I can do it myself, I don’t need any help kind of person. And he does I mean, he pushes through what he wants to accomplish. But no, he hasn’t really reached out to anybody else. Now, we did have some people when we were in rehab, and he connected with some of those people, and he’s kept in touch with them.

    Seeking help


    Bill 41:57
    All right. This is me giving Rand unsolicited advice and support. So what I’m going to say to him is, he can push through the things he’s aware of, the things he’s not aware of are beyond his peripheral vision, he’s got no idea that they’re things that are slowing him down and stopping him from doing.

    Bill 42:19

    So they’re the things that he needs to seek help for the ones that he’s not aware of. Because if you don’t know, what’s stopping you from feeling happier, better, or recovering, you know, faster or whatever. How are you going to actually push through or tackle those things? So Bill out, Rand, take that advice, or don’t take it. It’s just we’re having a chat. That’s it.

    Claudia 42:47

    I love it. I mean, I think if you ask him, how much he’s recovered, he would give you a much higher percentage number than I would. And again, I think it’s because he sees the physical difficulties in the physical side of things, but some of the mental stuff is a little bit harder for him to realize.

    Bill 43:09

    Yeah, absolutely. Because when you’re going through it, it’s tough. And for me, I used to, I remember saying, so I’ve been on this journey now for more than eight years. And I remember saying all the time, I’m about 99%. And if I compare my 99% today to my 99%, back then, back then it was nowhere near 50%.

    Bill 43:31

    That’s the illusion that I had it was that I was 99% recovered. But man, let me tell you that 1% getting that back, is the part where the lifelong journey starts. Because it’s not something that you can just get back. It’s like that Formula One car, you know, to get it to go one second quicker around that whole check.

    Bill 43:52

    They’ve got to spend millions and billions of dollars. I don’t know what and to get that one second, they might not even get it. So that’s kind of where I’m at. And at five years in, I can understand why he thinks he’s maybe you know, 90% or more recovered. Because I don’t know why because that’s how you feel and think it’s bizarre. I don’t know.

    Claudia 44:13

    I mean, to go from where he was, and when he went into rehab, he thought he could walk still. And they went to stand him up about a week and a half after being there. And it took him 10 seconds and he just went right back down. He lost all ability. Laying in a bed for a month didn’t have help, either.

    Claudia 44:38

    But, you know, I think that was a huge shock. And so the physical side he worked on and worked on and worked on, and then the mental side. It came with all of the rehab that he did from speech and occupational and everything but also it’s still improving.

    Claudia 44:56

    Five years later, I’m finding things that he wouldn’t ever have remembered or done or thought or, you know, some of my sarcasm. Initially, he had a lot of trouble with and couldn’t understand he was taking a very literally. And I’d have to say, Oh, no, no, no, that’s let’s step back, let’s talk about it, you know, so. And he started to get my sarcasm again, which is kind of fun.

    Bill 45:23

    That’s great. So you’ve thrown yourself into learning a lot, though, haven’t you? I mean, your Instagram is full of books with living with stroke. Jill Bolte Taylor’s My Stroke of Insight, your traumatized brain, you’ve spent a lot of time really learning about and trying to get an understanding of what it is that’s going on. How’s that helped guide you with regards to how to deal with Rand and his challenges?

    Claudia 45:59

    It’s been interesting. So I didn’t even open the computer or Google anything. When all of this was started. And everybody was shocked. They couldn’t believe that I wasn’t looking up everything. And I kept saying, we keep being told these low percentage chances of him surviving and him waking up of him, you know, all of these things, and it keeps happening.

    Claudia 46:20

    So why am I going to go read that he’s not going to recover, and he’s not going to live if he keeps doing it. So I didn’t do any research. And then with him coming home and having the girls and trying to work and everything we just kind of went through and did the best we could for a long time. And I have been asked to be a part of your mentor program that’s getting started at the rehab center that Rand went to, and that got me back into it.

    Claudia 46:53

    And I was answering the same questions over and over again, to each person that I spoke to, and I thought, you know, would it be nice to have some videos that are already done up so that if somebody else has experienced this, that I don’t get a chance to talk to listen to those videos and learn from them and, hopefully get something from it.

    Claudia 47:12

    And then I found I was learning from it more than probably anybody else’s is helping me more than anybody. And I started kind of reading books to try to find books to help better Rand’s brain or my understanding or some of the small issues that we’re having still that I could maybe learn a little bit more and make some differences from that standpoint.

    Claudia 47:36

    So we are drinking more water and eating a little bit better and decluttering some places and, you know, I did a calendar up that I had done initially, when we first got home, it was more work for me. And we’re stress and poor man, it didn’t even know it existed.

    Claudia 47:53

    And I would show it to him every day. And we would talk about it every day. And it’s still the next morning wake up and had no idea was there. So I think some of the things I initially started didn’t work so well. So now having that ability to go back and to do these things to make our communication and our relationship honestly better, and hopefully Rand better in the long run. And me drinking more water is great for me too. I feel better.

    Bill 48:22

    Yeah. I started out sharing these types of stories, because I thought it was going to help other people as well. And I did it partly just to get a better understanding as well of what the complex nature of stroke is. Because when you hear a stroke story, it’s similar and as in something happened, but then after that, it’s completely different for everybody.

    Bill 48:47

    So I found that every time I do an episode and listen episode, that it does help me more than I expected that it would and it’s a really great outcome from doing this whole I’m gonna make it about somebody else. But no, actually what it is, it’s really about me, that caught me off guard. So I hear that that’s similar to what’s happening to you, you thought you were gonna go help others and now here you are getting this beautiful gift back.

    Claudia 49:16

    Very true. And I told my mom I said, I think this is better for me than it is for anyone else, you know, I’m pushing more date nights and asking Rand to do more things and committing myself on social media to work on things and having me follow through with it because I’m being held accountable in my own mind by I think I had 200 followers.

    The growing stroke community

    Bill 49:41

    Yeah, 223 followers, you’ll be surprised how quickly that grows. Because the stroke community is pretty big. It’s pretty active on Instagram, and they looking for people that are going to share stories about their version of recovery or what it is that they’re going through because we can relate to it but also we’ve been from it, so it grows, it grows rapidly. And, they’re really active, they love to engage and share what it is that they’re going through. And, that’s really, really helpful, especially when you make a post, like I did recently, which was about Are you okay day? Do you know?

    Claudia 50:18

    I saw that I loved it. I thought it was great.

    Emotional and psychological recovery

    Bill 50:20

    Yeah. So from that what actually came was people step forward in sent me a private message and said, No, I’m not okay. So that was amazing. So those people were in New York, on the other side of the planet, I’m in Australia, I mean, we couldn’t be further away. But to get that, and then to be on a zoom call with them within 10 minutes of them sending that is really amazing, because that’s why I did it so that people know that they can reach out.

    Bill 50:47

    So then what that shows me is that, yes, there’s a lot of people doing the physical recovery, very few of them are really going and doing the emotional recovery, and that very few of them are doing the psychological recovery. And that means you’re only doing one third of the recovery, if that’s all you’re doing, you’re missing out on these two important parts, the emotional recovery, and the psychological recovery are the most important parts to to healing.

    Bill 51:12

    And I say that from experience, because I think so my first bleed, had been in hospital for seven days. And then on the 10th day from being admitted to hospital, I was in a counselor’s office and seeing a psychologist. I just got onto it straightaway. And I think that the mindset that it gave me, seeing this counseling psychologist for such a long time, afterwards, was able to stop me from having the anxiety episodes was able to stop me from having these thoughts in my head about what happens next.

    Bill 51:51

    And I didn’t even know that it was going to happen another two times, and then I was going to have brain surgery. But it just put all that junk out of my head. And then it made me start to focus on emotionally what I needed to do to heal. And what I needed to do was, I needed to apologize to my wife more I needed to tell her I loved her more, I needed to, you know, do the same thing with my family, extended family, friends, people who came to see me the messages, I needed to actually express that stuff.

    Bill 52:18

    So they knew in case I did kick the bucket that Bill hadn’t left anything unsaid, we’re not going to have any regrets. And that’s kind of what I really worked on because I got the most enjoyment out of that. I know I got a lot of enjoyment out of being able to walk again. But I got the fuzzies you know about doing the emotional stuff. And that was something I hadn’t really experienced much before my stroke.

    Claudia 52:48

    Right, The Traumatized Brain was the most recent book that I finished. And they talked a lot about how you’re not going to fully recover. If you’re having any sort of issues with anxiety or depression, it’s going to hinder your outcomes. And that you definitely need to find some way whether it’s through counseling, going to your neurologist and talking about medications or whatever is needed to help you cope and recover from that.

    Claudia 53:24

    Well, we’ll hopefully be the benefit out Rand got put on a drug that I don’t like and I wish I could get them off of it. I’m having trouble getting off of it. But he seems to be, he probably should be talking to somebody he has before. We we did some cat he did some single counseling, and we did some a couple of counseling. And but it’s been a while. I always love counseling. I think it’s a good thing.

    Bill 53:49

    Look, it’s tough for guys to do I know a lot of guys struggle with it. Because they fear being emotional, or, you know, having feelings and feeling things because they’ve been raised being told you’re tougher than that or get over it. You don’t need to be crying and all that kind of junk.

    Bill 54:07

    But the relief that you get like the pain it’s more painful in the not going there. So in the in that stage of thinking about oh my god, it’s going to be difficult if I go there, you know, I can’t be vulnerable, all that kind of stuff. Like, before you go there, it’s so much harder than when you’re actually there.

    Bill 54:30

    When you’re actually there, you get relief. It’s like you know that the floodgates open and the relief valve goes and then it’s done and you never get that pain anymore that concern about what if I go there and experience this emotion. Experiencing the emotion is not as much pain as not experiencing it.

    Bill 54:53

    So all those people who are afraid to go there who are watching now and listening. That’s a story that hopefully They can trust me about and maybe if they feel vulnerable in the right space with the right person at the right time. Just go there, just test it, don’t test it on the biggest worst problem you’ve ever had in your life, just do a little one, on the one where you lied about something, and that made that person feel bad.

    Bill 55:19

    Do it about that one, and then test yourself and see if you can go to the next level in a session or two or three down the track, you know, not, don’t do it all at once. It doesn’t have to be that kind of journey. It’s gentle, and it’s and it’s soft, and it’s caring. But that just changes the body’s ability to heal as well. Because that stuff’s gone. And then all of a sudden, there’s just space there for healing and for other things to occur.

    Claudia 55:48

    I mean, as a caregiver, I’m going to say the same thing, you need to go, yeah, take care of yourself. I did not do it during the time that Rand was in rehab. And I was invited multiple times to go to group sessions and peer support sessions. Funny that now I’m on the whole mentor peer support side of things.

    Claudia 56:08

    But I remember telling the case manager, I didn’t have time to hold hands and sing Kumbaya, I had other things that needed to I was out of there. As soon as, as I got everything needed to be done, I was on to my next task, and I was moving on, and it wasn’t taking care of myself.

    Claudia 56:22

    And everybody knew it. That’s why I had so much support. But I did go to some counseling, after I Rand was back home, I made some time we set it up where the nanny would stay late. And I would go on one night a week and talk to somebody. And that I think was extremely helpful for me to for me to be able to come back and say, Hey, I’m in for this, but we got to find happy or you need to realize what I went through and to be able to have kind of pushed those tougher conversations to get those emotions out of me.

    Claudia 56:55

    And not feel like I was saying the wrong thing or hurting his feelings, because he’s a little bit more sensitive than it used to be or making him more stressed out or upset. Because that was not what I wanted to be doing to him at the time is he needed to recover. But I needed to say it, and he needed to hear it. So it was very important to do.

    Bill 57:17

    What do you think? I know what the thinking was. And I know you’re in solving problems mode early on. But why do you think you used that excuse, the excuse of I’m too busy, I’ve got stuff to do.

    Claudia 57:32

    I didn’t want to face it. I didn’t want to break down I needed to just go and stay strong. And I think I felt like if I started hearing other people’s situations on top of my situation, that I was just gonna roll over into a ball and you know, sit in a corner, and suck my thumb, rock back and forth.

    Claudia 57:52

    I had my place and my moments where I would let out a little bit you know, if I was finally got the girls to bed and I was, you know, going to sleep in a quiet, I would probably cry. Then I say my dog was my therapist. The dog knew more about everything that was going on than anyone or when he was in ICU, and it was finally quiet and nobody else was around. I would cry then too. I mean, I had some good hard cries in ICU late at night. So in church, I also cried some at church, just kind of quiet. You know when I could get there and do it?

    Bill 58:34

    Yeah. And there’s nothing wrong with that. Christine says the same thing she went through. And I interviewed her on on episode 100

    Claudia 58:41

    Oh I have to watch that.

    Bill 58:43

    Yeah, that’s a good one. Because she gets really, really deep into what she was going through. And trying to get through and trying to overcome while things were uncertain and unknown. And she says the same thing. She just had stuff to do. She had stuff to be on the go for. And she felt like she couldn’t take a backward step because she needed to keep the momentum going of whatever we were trying to achieve and all the things that we needed to do.

    Bill 59:14

    She became you know, the main breadwinner, she became the carer she became the mom, she became all these things. And then what I realized which I didn’t comprehend at the beginning, because I didn’t get to questions, she still have to manage the emotions of everybody who contacted her to find out how is Bill doing.

    Claudia 59:34

    I haven’t thought about that, and that’s kind of true, you do.

    Bill 59:38

    And that was tough, right? Because she knows that they are most of them can’t deal with it. And because they’re not close to me, they don’t have first hand experience of where I’m at and however, and how I’m going. So they’re always in this heightened state of anxiety and they’re more wanting to know the good news so that they’re in anxiety levels can be decreased more than anything else. And Christine’s finding herself trying to keep them feeling good. And neglecting herself at the whole time.

    Claudia 1:00:13

    Interesting, I hadn’t thought about that. That’s funny we we did a caringbridge page and anyone who would ask me questions that, or calling me that had questions, a lot of times, I would send them to the caringbridge page, which helped but close people, you know, that really wanted to talk or were coming to see me, I talked on the Instagram page a little bit about how I remember people coming to sit with me in the intensive care unit, to wait for a surgery to get done or to wait for the doctors to come by.

    Claudia 1:00:46

    And it was so nice to have somebody there. Because if you needed to go get something to eat, or you just needed to get fresh air, you always were afraid you were going to miss somebody or something. And I really didn’t want them to talk to me. I didn’t want to have to think about anything else. I just wanted to kind of just be there, but I don’t want to be alone.

    Claudia 1:01:07

    So a lot of, no a few of my friends understood that. And we’re great about that. And that helped a lot. It was the I hear Christine side, it was the ones that were kind of needy, that really wanted to talk to me and really wanted to, like get into these deep conversations that I didn’t have the energy, I didn’t have the energy, the patience, or, could emotionally handle it and keep it together.

    Bill 1:01:34

    If I could, and there was people that would take the course, I would have a course on how to be a friend during a crisis, so that people didn’t come with their baggage and make the crisis even worse, because now the caregiver, and the person recovering has to deal with their baggage as well as everything else.

    Bill 1:01:53

    And, if you were ever allowed to. And it was just known that when you turn up to be a friend to somebody who’s partner’s in hospital, there’s this rule that says if you don’t have the right kind of attitude, we can kick you out and you can’t get offended. Like if we could have done that, that would have been amazing, because I had some people in the hospital waiting room, or in my bloody room as well, which I used to tell Christine, like, Is it possible to make them not come again?

    Claudia 1:02:30

    But it is it is possible, you can ask them not to that was one of my things. I was too nice during all of it. No, you can you can ask them not to, you can say this was great. We love seeing you, but it was too much or we can’t do it.

    Bill 1:02:46

    And that was Christine’s responsibility. And she’s not that kind of gal.

    Claudia 1:02:50

    Well, I didn’t do it either. I’m just saying now to anybody who’s watching this or listening to this it is okay. You don’t have to be the nicest person, you can do it. You can say hey, I know you said you wanted to come help take care of the kids. But I’m socializing with you and I’m not getting anything out.

    Claudia 1:03:06

    I’m taking care of the kids, you need somebody who’s going to be like, Hey, I got this, go take a nap, go for a run, go, you know, read a book, go see Rand, go see your loved one, I got the kids. So, you know, putting those certain people in charge of understanding that people who have been through the crisis are the best people to have on your team. And they know they got it.

    Bill 1:03:29

    Yeah, that’s part of the reason for the podcast as well is to paint the picture of it’s pretty bad at the beginning and then it gets better. As time passes, things change and things improve and you adapt and you learn and you grow and, it gets better. So hopefully, when people are listening, that’s they’re listening with that frame in mind and that they’re getting the whole okay. All right, I got that shitty part at the beginning of that first 10 minutes or so. But then the rest of it is about what we needed, what we grew from how we learned how we adapted. Hopefully, that’s how your story has evolved as well.

    Claudia 1:04:07

    Yes, no, it was horrible in the beginning, but again I never thought I never thought he would be so well back into what we were doing before me. It’s a little different. It looks different. But it’s the same. You know, it’s nice.

    Bill 1:04:26

    What has stroke taught you about you though, what has his experience taught you about you?

    What we learn from stroke


    Claudia 1:04:34
    Oh, that’s an interesting question. I can get it done when I have to get it done. I’m definitely a multitasker. I’m the organized one. I think that I’m surprised to what I was capable of doing. And I think I’ve surprised a lot of people of what I was capable of doing. I wasn’t a meek person before, obviously.

    Claudia 1:05:07

    But I think that what we’ve been able to accomplish and do and have two young girls who have gotten through it as well and to be happy and easy kids that don’t really see a difference. I think that’s been pretty amazing as well. I couldn’t have done it without my support. I mean, rands parents lived down the street, my parents came, our friends, my brothers, I couldn’t have done it without everybody.

    Bill 1:05:41

    Sounds like there was a lot of things, a very good foundation there to support anyone through some sort of a crisis anyway. So it sounds like that. Whether you guys plan that or just happened, to have so many people so close to you makes a massive difference in sharing the responsibility for each other.

    Bill 1:06:03

    Really, that’s what it is. It’s not about one person doing it on their own. And I know, life these days, you know, does make it hard, because we live in cities. And we live in all these weird situations that are so different to perhaps, you know, the village of the old, but it’s really what’s required isn’t.

    Claudia 1:06:25

    It is we needed it for the girls guiding twins, we needed a village and then on top of that, so it was kind of in place from that. And then, yeah, I, I didn’t realize Rands friends were so amazing. I knew I liked them. They were nice. And I enjoyed being with them. But the day that he went into the hospital, he was in surgery for seven hours, and I sat in that waiting room.

    Claudia 1:06:50

    And I remember, within the first 30 minutes, all of a sudden, his friends just started walking in their suits with, you know, they just came in, and they just sat down. And they didn’t even really say much. But I think that there were 10 guys in that room, they all dropped everything they were doing, and they just showed up to sit with me.

    Claudia 1:06:50

    And I didn’t know them very well, it still brings chills to my arms and tears in the back of my eyes. And the idea that these guys dropped everything just to come and sit with me for seven hours to wait and see what was going to come out of the surgery and how their friend Rand is going to be was a beautiful thing.

    Bill 1:07:20

    That is amazing. That is amazing. The best kind of support is that support, which is just the in body and nothing much else. Because you don’t need to talk at that time. You don’t need anything. You just need people that you can lean on if you need to lean on them. And the fact that they were so aware that they didn’t have to talk maybe they just men and they don’t know how to talk.

    Claudia 1:07:59

    It was great. They’ve been guys but it was great.

    Bill 1:08:05

    Claudia I really enjoyed our conversation. Thank you so much for being on the podcast and sharing your story. I wish Rand all the best for his recovery from me. I haven’t met him. But hopefully he gets to listen to this. And he gets to really understand how much you care for him what you went through and you know, what you’ve been prepared to do, and how much his recovery is important to you.

    Claudia 1:08:32

    Thank you. Yes, I’ve enjoyed it and he’s definitely gonna watch it.

    Bill 1:08:35

    Well, thanks for listening to this episode of the recovery after stroke podcast. If you like this episode or any other episode, please hit the like button. If you’re watching on social media. Give us a thumbs up if you are watching on YouTube. And give the recovery after stroke podcast a five star review on your favorite podcast app.

    Bill 1:08:54

    Doing that will make the podcast more visible to other stroke survivors that are doing a tough right now. And it could help them feel inspired and feel better about the road ahead. Thanks for tuning in.

    Intro 1:09:11

    Discover how to heal your brain after stroke go to recoveryafterstroke.com.

    Intro 1:09:20

    Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals that pinions and treatment protocols discussed during any podcasts are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.

    Intro 1:09:37

    All content on this website at any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis the content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice.

    Intro 1:10:00

    The information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose, treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional.

    Intro 1:10:15

    Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitation program based on our content if you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional.

    Intro 1:10:29

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    Intro 1:10:52

    If you choose to rely on any information within our content, you do so solely at your own risk. We are careful with links we provide however third-party links from our website I followed at your own risk and we are not responsible for any information you find there.

    The post A Brain Aneurysm That Burst At 40 – Claudia Faulkenberry appeared first on Recovery After Stroke.

    1 hr 12 min
  • A Link Between Contraceptive Pill And Stroke? – Priya Sharma

    Priya Sharma was 24 years old when multiple blood clots caused an Ischemic Stroke. There is some suspicion that the stroke, may have been caused by the contraceptive pill.

    Socials: www.instagram.com/mystrokeofinspiration/

    Highlights:

    01:05 Introduction

    03:16 No signs of stroke
    04:53 Contraceptive Pill and Stroke risk
    12:24 Lifestyle change after stroke
    16:02 Initial stroke deficits
    22:44 Having family and friends during stroke recovery
    29:25 My Stroke of Inspiration
    38:03 Considering mortality
    40:10 Positive Mindset
    49:05 How to deal with negative comments
    56:32 Explaining to people that you’ve had a stroke

    Bill 0:00

    Did they know what caused those clots?

    Priya 0:03

    They haven’t actually found out yet, a factor of it was just the contraceptive pill. The thing is if you read the little dockets that come in medication packets and stuff that no one reads because it’s very small writing.

    Priya 0:24

    It’s actually in there that a side effect could be blood clots. But I wasn’t told that like my doctor didn’t say anything when I was prescribed it either. So it is kind of an, I guess, not normal, but it does happen. It’s just that people aren’t told that it could be a potential side effect when they’re prescribed the pill.

    Intro 0:52

    This is the Recovery After Stroke Podcast, with Bill Gasiamis, helping you navigate recovery after stroke.

    Introduction


    Bill 1:04
    Bill from recoveryafterstroke.com This is Episode 118. And my guest today is Priya Sharma. Although Priya doesn’t have all the answers about what may have caused her to have an ischemic stroke at age 24, she does suspect that the contraceptive pill she was prescribed by her GP to treat a skin condition may have played a role.

    Bill 1:25

    Now before we get started, if you have ever wondered what else I can do to help you with your stroke recovery, you should know that you can now get recovery after stroke coaching right from the comfort of your own home.

    Bill 1:36

    I too am a three times stroke survivor and a brain surgery survivor and I have built for you. But I was missing when I was sent home from hospital in the hope that you don’t have to do stroke recovery as tough as I did.

    Bill 1:49

    Support packages give you access to a variety of tools 24 hours a day, seven days a week, so that you can also work on other areas of stroke recovery that you don’t get the chance to at physical therapy or rehabilitation.

    Bill 2:02

    With tailored support available for less than $8.50 per week, all recovery after stroke support packages. Bring stroke recovery to you in the comfort of your own home. To try out recovery after stroke support and see if it’s right for you. You will get the first seven days free as well as a 30-day money-back guarantee. No questions asked.

    Bill 2:22

    As a bonus, you will also get to face to face zoom support calls with myself to help take your recovery to the next level. Go to recoveryafterstroke.com/momentum to sign up. It won’t cost you anything for the first seven days and you will get a full refund if you’re not happy after 30 days.

    Bill 2:39

    You have nothing to lose and everything to gain. And now it’s on the show. Priya Sharma. Welcome to the podcast.

    Priya 2:45

    Thank you.

    Bill 2:46

    Lovely to meet you. We’ve known each other for a little while on social media. And you did some volunteering for the Stroke Foundation, which I also do.

    Priya 3:01

    Oh, okay. So as much as I can, I guess I’ve got two jobs at the moment. And I’m studying as well. So it’s sort of whatever time I can get.

    Bill 3:13

    Tell me a little bit about what happened to you.

    No signs of stroke


    Priya 3:16
    So I had my stroke in July 2015. I had gastritis the week before, so I was already off work. I didn’t really have any of the signs. And of course, I didn’t expect a stroke at 24. So I was pretty weak already and kind of not eating and stuff. So I got taken to the hospital.

    Priya 3:50

    And then it was in the emergency department. While we were waiting. They sort of wheeled me to get some blood tests, and I started having a seizure. So that’s when they took me out to ICU and I had like MRIs and CT scans, which is how they found they found quite a few clots in my brain, which obviously caused the stroke.

    Priya 4:19

    And then I was transferred to a different hospital just that had kind of a better stroke came and everything. And then just during my stay there, they found kind of more clots. So I had two Thrombectomies. And I think that when they were taking the clots out of my brain it must have traveled. So they later found clots in my legs and my lungs as well.

    Contraceptive Pill and Stroke risk

    Bill 4:53

    Wow, did they know what caused those clots?

    Priya 4:56

    And they haven’t actually found out yet, a factor of it was just the contraceptive pill. But they don’t know the full cause yet. And I’m still on blood thinners so they can’t. Like they ruled out blood disorders and everything. They tested me for all that in genetics and everything. And it was none of that. So it’s still like a mystery.

    Bill 5:26

    It’s interesting that you said the contraceptive pill maybe, because you’re not any person who I’ve interviewed who said that, that they think that the contraceptive pill might have something to do with it. And it’s still kind of this thing where maybe it has something to do with it. And I don’t really know.

    Priya 5:44

    It does. The thing is if you read the little dockets that come in medication packets and stuff that no one reads, because it’s very small writing. It’s actually in there that a side effect, could be blood clots. But I wasn’t told that like, my doctor didn’t say anything when I was prescribed it either. So it is kind of an I guess, not normal. But it does happen. It’s just that people aren’t told that it could be a potential side effect when they’re prescribed the pill.

    Bill 6:23

    Wow. If you had known that, I know, you were 24. So let’s just pretend that you were aware of the issue of stroke as a side effect of taking the contraceptive pill. Do you think you would have taken that seriously that you could have a stroke? Or do you think you maybe would have ignored it and taken the medication anyway?

    Priya 6:48

    Well, that’s the thing. Like, I’m kind of on the fence about that, because I was only taking it from my skin. So to me, it wouldn’t have mattered if I didn’t take it or not. But then, I guess back then, I didn’t think a stroke could happen to someone so young.

    Priya 7:10

    And it’s only since I’ve had it that I’ve met so many people around my age, with similar stories. It’s because I guess, young story isn’t publicized. So what you see in the media is just that it happens to like elderly people.

    Bill 7:29

    So this is the thing about the contraceptive pill, a lot of people think that it’s taken just for contraception purposes, but I know lots of people have taken it for many other reasons that are not related to contraception, and babies and intercourse.

    Bill 7:50

    And it’s just crazy that this pill is so widely used for so many things. And it interferes with the body in so many ways. And it’s still considered to be okay to prescribe to people, even though it says it on the paperwork that you can have a stroke.

    Priya 8:09

    And I think so the particular one that I was prescribed has actually got a higher risk of clots than all the other ones. And I think there’s actually, I don’t know if it’s still around, but a local MP, I can’t remember what state he’s from. But his daughter had the same problems. And he created a petition to get it banned.

    Priya 8:36

    Because it’s kind of I need that particular one that was more dangerous than the others. I had a higher risk. But no one’s told that when they go to their doctor, or their doctor prescribes it.

    Bill 8:51

    So you haven’t had that conversation with your doctor prior to taking the medication. Did you have a conversation like that with your doctor after?

    Priya 8:59

    No, because I changed doctors after. And, and that wasn’t the reason why I changed doctors. But I’ve got a different doctor now. And I feel like he’s a bit more like he listens and is more understanding as well. So basically, the reason I changed doctors was because obviously when I came out of hospital, the nurses were like, make sure you’ve just got a doctor who will see you kind of straightaway.

    Priya 9:35

    And you won’t have to wait too long, especially I guess at that stage, like, I guess you would know you get tired easily and all that. And so we kind of went to this doctor twice and both times I was waiting over an hour to see her. So that’s when we kind of changed doctors obviously, I’m never allowed to take it again. And I was only on it for I think, three months before my stroke. So that’s kind of the more shocking bit is that it only took that amount of time.

    Bill 10:19

    Yeah to cause a reaction. So how has life changed now that you’re recovering from the blood clots and the strokes that they caused?

    Priya 10:32

    I guess, like my story is not too, I guess not much the same as everyone else. I pretty much physically recovered when I got out of rehab. So I guess the main things for me, I just kind of when I’m, like walking long distances, I’ve still got kind of stuff muscles. So I guess that’s the main thing. And then just, I just had anxiety since then. And I think those are the main things for me.

    Bill 11:10

    And the anxiety, what do you think that’s in relation to is that something you’re concerned that something terrible might happen? Or what brings that on? Do you know?

    Priya 11:20

    Well, yeah, that’s probably a point because we don’t know their cause yet. And I guess my kind of thoughts are like, I don’t know, what sort of things to avoid, or not do to bring on I guess, because of everything I went through, I’m at a much higher risk now of having a second one. And so I guess, yeah, that’s probably one of the main things.

    Bill 11:51

    So you’re kind of thinking in the background, that maybe there’s something going on? And maybe I’ll have another one?

    Priya 11:58

    Yeah, exactly. But I think that’s everyone’s, everyone’s scared of that. I think, for me, it’s just not knowing the cause. Every year, I go see my hematologist and they still haven’t figured it out. So it’s just, I guess, in the back of my head, it’d be nice to just have answers as well.

    Lifestyle change after stroke

    Bill 12:24

    A little bit of the unknown, it can be a drama. I know a lot of stroke survivors do talk about the thought, the concern that there might be another one around the corner or something like that. But a lot of them as a result of that take some dramatic steps to change the way that they live their life, you know, the things that they do, for example, you know, if they drink, or smoke, they might stop smoking and drinking, and they might change their diet. Have you done some things like that to sort of support your health?

    Priya 12:54

    Well, no, because I was already like that I was before my stroke, I was going to the gym five times a week, I was eating healthy, like I drink more than enough water. So it’s not really a change for me. And I think that’s probably what helped me recover really well, as well.

    Priya 13:16

    So yeah, that hasn’t really been a change. And I guess aside from the basic things that you learn, or that you know, can reduce your risk. I’ve still got that unknown, of not knowing the cause and not knowing, like not being able to exactly pinpoint what I can avoid or do different.

    Bill 13:42

    Yeah. I think you’re on the right track, though. It sounds like you’re doing all the right things anyway. And your most serious risk of stroke, I think, but I know you and from just from our conversation. Sounds like it’s been already taken out of the picture. So you haven’t, you’re doing that now. You know, you’re not taking that medication. So it’s not likely.

    Priya 14:10

    That’s the thing though, that was only a kind of small factor. They did say there’s no way it can be the full cause. So I guess trying to pinpoint it would be great, and have answers, but I guess doctors can only do so much as well.

    Bill 14:32

    Yeah. So you were 24 What were you in the middle of? Were you doing studies? Were you working? What were you up to?

    Priya 14:39

    I was working full time at the time. So I was working for Serco. So like transport info in New South Wales. But then I was sick that whole week. So I was at home anyway. They actually they’re not sure when I had the stroke because I had it before I got into the hospital as well.

    Bill 15:06

    Do you think you went to work? And well?

    Priya 15:11

    Well, I don’t know, possibly because I guess with the amount of blood clots I had, it could be possible. But yeah, I’m really not sure. I don’t even the first few days of me being an ICU, I don’t have much recollection, I was pretty out of it. Which I’m sure most people are at that point.

    Bill 15:38

    It’s pretty common after the stroke. Most people are out of it. So you’re in hospital for how long?

    Priya 15:46

    I was in the hospital for three and a half weeks. I was then in inpatient rehab for two weeks. And then I was in outpatient rehab for four weeks, but sort of only twice a week.

    Initial stroke deficits

    Bill 16:03

    When you were, in rehab, what was it that you needed to get back or overcome?

    Priya 16:10

    So the main thing was walking, and definitely walking up and downstairs, because we have a two-story house. And I guess just my speech, my speech was quite slow compared to what it was before. And then just basic things like learning how to use a fork and knife again to eat.

    Priya 16:39

    And then just the physio, and that goes with the walking I guess. I’m just getting my strength back and walking without losing my balance all the time. And then, yeah, I think those are the main things I had a bit of occupational therapy as well. But that was more so like, we had a thing where we had to show them that we could make a meal ourselves. Because, and I’m sure you went through that as well.

    Bill 17:16

    And I was so annoyed, because they were making me make my own meals and my hand wasn’t working properly. I was thinking why they making us cook our own meals.

    Intro 17:24

    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?

    Intro 17:41

    Doctors will explain things that obviously, you’ve never had a stroke before, you 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.

    Intro 18:04

    It’s called 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.

    Priya 18:27

    Yeah, so I think that was just a way for them to make sure that if you were alone in your house, you could do like you could at least make yourself food. And even if it was like just a basic toast.

    Bill 18:43

    I did ask them that. And then they explained it to me. And then I understood why they were doing that to us. And they weren’t being nasty, or lazy. So how long did it take you to get back to work?

    Priya 18:55

    So I, I had five months off. So I guess three months if you take out like the hospital and rehab part of it. And then yeah, just had the three months off. And then yeah, when I went back gradually, so I started off with like, two days a week, four hours and then I just kept building up from that.

    Priya 19:22

    I was pretty lucky with my workplace they will or like my contract manager was quite supportive. And when I asked her like I said, I have to come back gradually, because that’s obviously what my doctor had said. And they were very accommodating with that.

    Bill 19:43

    When you got back to work was fatigue, an issue sitting in front of a screen and trying to do you work during the day?

    Priya 19:49

    Yeah, for sure i am and i think that i did ask my neurosurgeon about this and he did say sometimes it doesn’t go away. All I don’t know if you still experience fatigue. But yeah, I definitely have some times where I’m still, I get fatigued a lot. And I guess that’s the difference. Trying to explain it to other people is hard because fatigue is different from neuro fatigue is not just I guess tiredness.

    Bill 20:29

    Right? That’s actually a really interesting point because neuro fatigue is something completely different. I’ve not experienced up until my surgery and brain hemorrhages. I never experienced neuro fatigue before, but I did experience fatigue. And that was really hard. But usually it came from doing too much work or a hard day’s work or putting in too much effort somewhere. But neuro fatigue is just there. And it’s not physical fatigue, isn’t it? It’s just got nothing to do with that.

    Priya 21:00

    Yeah, it’s not always physical. Like it’s just like, I guess, mental fatigue as well. I guess just wanting to switch off and, like not being able to concentrate and things like that.

    Bill 21:17

    So did that affect you at work and the amount of time that it took you to get back to, you know, “normal”?

    Priya 21:26

    Um, yes, I would say so. However, I guess because my recovery was, was quite done quite well. And I, like recovered pretty quickly. I, I think so I went back to work in November 2015. And then I was by, I think, July 2016. I was back at full-time work. Yeah. Okay. So, to me, it didn’t take too long. It was just sort of, I guess, liaising with my doctor and making sure I was okay to increase my hours every so often.

    Bill 22:11

    Were you living at home during that time when you were unwell? With mom and dad is what I mean.

    Priya 22:17

    Yeah, I’m living with mom and dad. And I guess that was a good thing as well. Because if I wasn’t, I’d have been alone at that point. And I guess, because I didn’t know I had this stroke. It’s good, because I got treatment quickly. Whereas if I was alone, I wouldn’t have known and it might be very different.

    Having family and friends during stroke recovery


    Bill 22:44
    Yeah. What are some of the things that you missed out on during that recovery time? When you were kind of out of it? And you weren’t working properly? Was there people that you couldn’t catch up with? What types of issues did you have to face?

    Priya 22:59

    Not really, so kind of my friends that. I’m the kind of person that will keep like, I’ll have a close group of friends and I’m kind of more so now I’m very, very picky about who I sort of hang out with, or who I invited out to dinners and stuff. But, um, to my friends at that point, obviously, I’m still friends with them, but they kind of more accommodated me as well.

    Priya 23:33

    So obviously, my mom was pretty worried about me going out to the city or like, being by myself and stuff. Because this is only a few months after, but they were pretty good. Like they come meet me at the station or something. So I wouldn’t be alone. So that didn’t really change much. I’ve thought, I’ve always kind of been that person like that. I’m quite picky and like, I don’t go out a lot.

    Bill 24:10

    So is it kind of business as usual? Not too much changed.

    Priya 24:15

    Yeah, not too much changed. I guess kind of the main thing would have been just work just increasing my hours just trying not to let the fatigue affect me too much. because like you said earlier, staring at a screen for so long. A day does give you the mental fatigue as well.

    Bill 24:43

    Yep. Were you a driver?

    Priya 24:45

    No.

    Bill 24:46

    So you didn’t miss out on driving and learning how to drive again wasn’t an issue?

    Priya 24:53

    No, that hasn’t been an issue for me. No.

    Bill 24:56

    Yeah. That’s pretty cool. Most people have real big disruption to their life. Yeah, strike because they, I’m not sure. I’m not sure why? Because maybe because they do so much. And they do. And they cram so many things into their day, and they have to play so many roles, you know, pick up kids drop off, whatever, all that kind of stuff. So although it was quite a difficult time for you, it caused some disruption for sure. You didn’t really change the way that you went about your life for a long period of time.

    Priya 25:31

    No, not really. And I suppose like you mentioned, like, I don’t have kids, I don’t have any, like, I don’t have dependents. So I don’t have that in my life that would be disrupted. And yeah, I don’t drive anyway, because I don’t feel the need to. Really, um, so especially now, I guess that everyone’s well, working from home.

    Bill 26:03

    You did well there. So tell me about did it motivate you in different ways, though, it seems like you’re potentially doing things that you haven’t done before was the kind of work that you did for the Stroke Foundation, which is presenting stroke safe talks. Have you done anything like that before? Had you ever considered volunteering or anything like that?

    Priya 26:27

    No, I actually never heard of the Stroke Foundation until I did my own research. afterwards. I joined a couple of like stroke survivor groups. And I do see a lot of obviously questions for like, has anyone had this kind of strike? And like, how was your recovery and things like that? So I guess Yes, in a way I did. Because I’m getting my story out there as well.

    Priya 27:00

    And letting people know that strike can happen at any age. I’ve had quite a few people message me on social media, just being like your story. So inspiring. And just asking more questions and stuff. And then, yeah, with, like I mentioned earlier with my muscle weaknesses, kind of, does motivate me to do more like this year was five years for me.

    Priya 27:31

    So I did the Sydney Harbour Bridge climb, which I probably would have never done because I’m terrified of heights. But I was like that will be a good kind of celebration. My friend suggested it as well. And he’s like, you’ll be at the like, highest point in Sydney. Like, what else would you want to do? Like, that’s an amazing celebration? Because I’m the I’m one of those ones that celebrate each year. Because I look at it, like, I survived this major thing that I probably shouldn’t have.

    Bill 28:14

    Yeah, absolutely. It’s definitely something to celebrate. At the top of the Sydney Harbour Bridge, how long does it take to get there?

    Priya 28:26

    Probably about just over an hour, because the whole climb is three and a half hours. But that being said, we do stop a lot along the way, to hear like the history and stuff of the bridge and the area around it. So it’s not like a continuous walk. So I probably say even less than that if we weren’t if we didn’t stop along the way.

    Bill 29:00

    That’s quite a few steps up, I would imagine. And you can see a 360 degree view of Sydney Harbour. I mean, was it a good day that you went out there was the sun out?

    Priya 29:13

    So I did the sunset climb, and we had an amazing sunset, which was really nice. I do have some photos on my Instagram as well of it.

    My Stroke of Inspiration


    Bill 29:25
    Wow. Yeah. I’ll have a look at those. And maybe we can post some as well. And have a look at them. Now. your Instagram is a stroke of inspiration. Is that right?

    Priya 29:36

    My Stroke of Inspiration.

    Bill 29:39

    Why was stroke an inspiration to you?

    Priya 29:44

    I think it’s more because I use the platform to share my story and stuff. And obviously I’ve had a lot of people saying it’s an inspiring story and stuff and I’m like, it makes sense and it’s a different name. I don’t like using my, like full name or just my name on my social media handles.

    Bill 30:15

    Yeah, fair enough. It’s a great name. It really makes people pay attention, especially with regards to, you know, something from stroke becoming inspiring to other people. That’s a great thing.

    Priya 30:28

    And I think it’s brought up a lot of conversations as well. Like, when I tell people my handle, it sort of gets a conversation going as to like, why you have that name. And then I tell them, and I share my story as well. So I guess it is, in a way, getting the story out there a bit more as well.

    Bill 30:50

    Yeah, that’s awesome. Why not? I like that it creates a conversation without really meaning to raising awareness and telling people of something that’s serious, that maybe will help somebody at some point in time.

    Priya 31:04

    Yeah, definitely. I’ve had, I think there’s been a couple of people that have reached out because they’re, my speakers, people have, like an AVM or something like that, that have caused their stroke. And I think my story is a bit unique. And I’ve had a few people reach out to me being like, I’ve never met anyone with a similar story to mine, as well. So I guess in that way, it’s good as well. And because other people are finding someone that’s had that similar story to them.

    Bill 31:45

    Yeah. I mean, that’s one of the best things that happened to me is I found people that were, I suppose that was like me, and then they understood me. They got what I was saying. They understood what fatigue meant, you know, when we talk about fatigue, yeah. And it made a huge difference to the way that I was feeling. And then it allowed me to have conversations with that person that I wasn’t able to have with anybody else.

    Priya 32:15

    That’s exactly right. Like I was saying this the other day to someone as much as I guess our other friends and family tried to understand they just won’t because they haven’t been through a similar situation. Whereas I guess the people I’ve met since they obviously have similar stories, or then they’ve been through the same thing, just a different situation. So then know exactly like what you’re talking about.

    Bill 32:51

    Yeah. About, probably about 18 interviews ago, I interviewed a lady called Kelly. And she had an ischemic stroke as well, she was 32. Now one of the things that she said, which was similar to you was that she was also taking the pill.

    Bill 33:10

    And then after the stroke, again, she became aware of the fact that there’s a possible side effect, which causes stroke for some people and blood clots for some people. And she was a bit shocked and surprised as well. And she hadn’t really come across anybody else that had been in that situation. So yeah, it is uncommon for sure that people experienced stroke. But it sounds like there’s still too many of them out there, that experienced stroke because of potentially a medication.

    Priya 33:42

    And I guess I’m just going back to what I was saying before, it’s more because it’s not publicized. And I’m finding more information about stroke now than I ever would have, like, five, six years ago.

    Priya 34:04

    There’s a lot more information out there now for people. But I also think, doctors should be going through that with you if they’re prescribing your medication.

    Bill 34:17

    Absolutely, they should they should be telling you, I’m going to prescribe this medication, this is what it’s for, and have the conversation with you so that you’re informed and you can make a decision at the time whether you want to take that risk or not.

    Bill 34:31

    If you don’t what’s the alternative? Can they present another version or some other alternative? Instead of just going for the one that might cause another health issue? Because what we’re trying to do is fix a health issue, not create more.

    Priya 34:47

    Create another one Exactly. And like, I guess it’s going to if it was someone quite young, like say 17, 18 They wouldn’t, I guess like me, they wouldn’t think that a stroke could happen to them and they won’t research it, they would just say like I need this, can you prescribe it to me and the doctors just do it.

    Bill 35:17

    Yeah. It’s pretty sad. I yeah, I think there’s a couple of things that we need to work towards fixing with the way that doctors become informed about the kind of medication that they should be prescribing. And then their duty of care to go out of their way to explain what they’re actually giving that person to swallow.

    Priya 35:43

    And I think also, like triage nurses in the hospital. So when I went in, it was a Saturday night. I was 24 years old. I was unable to walk, I couldn’t talk properly. So they probably just thought I had taken something or I was drunk. And then they’re like, it’s gonna be like, a two and a half hour wait to see someone.

    Priya 36:13

    And then obviously, we waited. But if it hadn’t been for me having that seizure, then we would have just waited for the two and a half hours. And like, you know, how quickly you need treatment after a stroke.

    Bill 36:35

    Minutes count. You sit on the chair, outside of triage at a hospital. It’s the craziest thing. But it is true that they do generally they do a good job, but sometimes the wrong person at the wrong time.

    Priya 36:53

    Yeah, exactly.

    Bill 36:55

    Too much pressure, and maybe before you maybe five or six other people that came in drunk or on drugs?

    Priya 37:02

    Well, I think it was also quite busy that night as well. So I definitely understand that. But it’s just, I guess a bit of education is probably needed, as well.

    Bill 37:18

    And maybe some questions of the people that you’re with, Has she taken anything? Is she drunk?

    Priya 37:22

    Yeah, exactly. Like if they’d done that, they would know I was home. Like, I couldn’t even get out of bed. I guess, like you said, unless they asked that they won’t know. So that’s why I say it was lucky I had the seizure. Right? Not that it’s lucky, I had one in the first place. But that’s what led them to find the clots and everything. And then I got started on a heparin drip straightaway. Which obviously would not have happened if I didn’t have that seizure.

    Considering mortality

    Bill 38:03

    Yeah, that’s nuts. Are you the kind of person who did the whole thing at the beginning? Did you consider your mortality all of a sudden? Did you start thinking about, Oh, my God, I might not be here next week or in a month or has that played on your mind at all?

    Priya 38:21

    Not really, because I think I always have that kind of mentality that can be for anyone, whether you’ve been through health issues or not. I don’t want to be too morbid, but you could drop dead at any moment, no matter who you are. So that, I guess that’s always been a mentality. And that’s why I guess especially now, I’m also do the things like the bridge climb, I’m doing a hike with the Stroke Foundation next year as well.

    Bill 38:59

    So what you’re saying is that you were the kind of person that lived in the moment, understanding that life to be lived and perhaps it may be short. So similar mentality. Your you’re going forward with now and it was just who you were before, anyway.

    Priya 39:20

    Yeah, it was and like, I’ve lost a cousin at 17 years old. So I guess that’s kind of what started that kind of mentality. Like I obviously firsthand, I know, life can be really short. And you don’t have to have health issues for that to be a true statement.

    Bill 39:45

    Where you 17 at the time or was it your cousin that was 17?

    Priya 39:49

    I was 17. He was 16.

    Bill 39:52

    Yeah, so close in age. So that would have been a big wake up call.

    Priya 39:57

    Yeah, um, and yeah. What probably started that mentality. So it hasn’t really come about after I had my stroke, it’s always been there.

    Positive Mindset


    Bill 40:10
    So you pretty positive kind of person?

    Priya 40:14

    Yeah. And I think that’s what my nurses were saying that they think that’s what helped me as well, because and I guess that’s true. Your mindset does help you or break you.

    Bill 40:29

    Yeah, absolutely some people get stuck in a negative mindset and a negative mindset won’t help growth occur. Positive mindset isn’t gonna make anything worse, it’s going to encourage you to be curious and to find, you know, new ways of looking at things and potentially finding new ways to overcome some of the challenges that you have.

    Priya 40:57

    Yeah, I think, yeah, the positivity was something they said would have helped me a lot. Because I did see a lot of pain, obviously, in the ward I was in was shared with three other people. So I guess looking from the outside, you would have seen such a difference with me, as opposed to the other members in the ward. Obviously, they will all die as well, so. And I like I don’t know, their lifestyles or anything like that. But if you’d come in, you would have seen, I guess the difference.

    Priya 41:39

    Yeah, I know, you may know, I had all the people in my ward as well. And now, in the beds next to me in the public hospital, they were not getting up and about they weren’t doing much. As I was up and about us walking after the first time, not the second time, and not the third time. But wasn’t walking after the first time. So it was this really weird experience to be in a hospital in a stroke ward, where I’m supposed to be really sick, but I don’t look it to anybody and don’t feel it other than numbness on my left side.

    Priya 42:22

    This lady I was talking to the other day, I was actually saying that, because she has no physical disabilities or anything. So like, sometimes she just feels like a kind of a fraud, calling herself like a stroke survivor. And I’m like, it’s not always physical, though. Yeah. And I guess that’s, I guess this is all disabilities. So people don’t know it’s there unless they can physically see it.

    Bill 42:56

    Yeah, it’s the biggest issue that we have with mental health across the planet, not just in Australia. But also then, with people who recover from stroke and may have a limp or an arm that’s not extending fully. Even people like that find it difficult to explain to other people have the neurological fatigue is a problem for them, even though we can see some kind of sign that they’ve had a stroke in the past or they’ve experienced a stroke. I was pretty dumb like that. Like I didn’t understand before I was unwell. That somebody’s in a wheelchair, for example. was doing a tough in many other ways. They weren’t just sitting in a wheelchair. They had all these other issues.

    Priya 43:47

    What, once you’ve gone through an experience, something like that, I think everyone’s kind of like that as well. Unless you’ve experienced it yourself, or you’ve like, a close friend or family member has experienced it, you don’t understand it. And I do sometimes I feel like that as well. Like I can, walk I can talk I can use my arms, everything’s functional. So I don’t, when you look at me, you don’t know that I’ve had a stroke. Unless you’ve obviously read my blogs and my social media.

    Bill 44:31

    That would confuse a few people and shock them as well, wouldn’t it? because they’d look at you and go you look like you’ve had a stroke. What do you mean, you’ve had a stroke? Like What’s all that about?

    Priya 44:41

    Oh, you’re too young or like those kind of comments. Yeah, definitely. I’ve gotten those. I’ve gotten a couple of negative comments as well because I was doing so well after my stroke.

    Bill 44:59

    A negative thing. How come somebody would say something negative about that.

    Priya 45:04

    So, I, about a year after. So, just before I went back to full time at work, my doctor cleared me to go back to the gym. And so I was going to a strength gym that time so I was lifting like pretty heavy weights and stuff. And my PT was a neuro psych. He worked in a lot of neuro awards as well. So he was also a physio, so neuro physio as well.

    Priya 45:40

    So that was kind of good for me as well, because I had someone training me that knew what I had been through. So I kind of was posting some videos on stroke survivor group that I was on at that time. And I guess, people are just kind of upset at themselves that they’re not, if people don’t work on their recovery, or they’re not, because no one’s exactly the same.

    Priya 46:10

    So my recovery is not going to be the same as yours. And if I’m cleared to go, lift weights and do that kind of stuff, then I’ll do it. Like, I’m the kind of person that will always listen to my doctors, I won’t. So my doctor said, I can’t go like skydiving or anything because of the pressure to your head.

    Priya 46:38

    I’m not going to be the person that then will go skydiving. So I just got a lot of comments like, Oh, you shouldn’t be doing that. It’s only been like 10 months after your stroke, bla bla bla. And like, when you have another stroke, then don’t come crawling back to us.

    Priya 46:58

    And I’m like, this should be a group to like, motivate each other. Like, majority of the comments I got were like, Well done, congratulations and all that. But then it’s always I guess the negative ones that do stand out and they were quite negative, like quite rude as well.

    Priya 47:21

    And I’m like, look, I’m listening to my doctor, if he said I can do this, then I’m gonna do it. I’m not gonna listen to someone that doesn’t know my story. And then I had this one saying, oh, not all strokes are the same. You can’t say like, you’re doing this like 10 months after. And then I kind of went on to list every single thing that happened while I was in hospital. And then I didn’t hear anything after that.

    Bill 47:51

    Yeah, sounds like those people. Were those kind of people before stroke anyway, it sounds like everything was a competition for them.

    Priya 47:59

    Exactly. And it shouldn’t be like everyone, like I said, everyone’s recovery is different. And especially with a stroke, you should be lifting people up. You shouldn’t be like saying stuff like that, because like you said, you never know what else is going on for someone.

    Bill 48:20

    Yeah, it’s nuts that somebody would compare themselves to you. And then complain about what you’re doing and that you shouldn’t tell people to get back on to their lives or with their life. If they can. It’s not like it’s the rules are not for everybody. They don’t have to do what you did. But just have to be happy that you can do it that’s all.

    Priya 48:39

    Yeah, exactly. And I would be like, if it was someone else, I’d be like, that’s great. You don’t go and sort of tear people down after something like this as well. But then a few people message like privately messaged me, and they’re just like, just ignore it, which I do anyway. But they’re like, they’re probably just unhappy in their own sort of recovery and stuff like that. Which makes sense.

    How to deal with negative comments

    Bill 49:06

    They would be unhappy somewhere. And stroke makes things worse, it doesn’t make things better. So if you’ve got a bad relationship, or if you’ve had some trouble in the past, stroke doesn’t come in and make it all better. It makes it worse. And therefore it might highlight some of the issues that people have in their lives. And therefore make them act out and choose to get offended where it’s not a place to get offended.

    Bill 49:34

    That’s not somewhere where you need to take offense that somebody is perhaps doing well. And I think what it should do is those people should pay attention to why they’re getting offended with somebody posting that they’ve achieved something amazing after the stroke. I mean, that’s where the lesson is for them more than anyone.

    Priya 49:53

    Yeah exactly. That’s what I was saying. Not everyone’s going to be the same. Like everyone. Even looking back to the ward I was in, like he said, everyone’s different.

    Bill 50:07

    And it’s just pure luck that the blood clot went into that part of your brain, that it didn’t go into just, you know, one other part one, how to re over the left or to the right or to the front or to the back. That’s just pure luck, luck that my brain hemorrhage happened, where it happened.

    Bill 50:25

    And therefore I can be mostly active, and out and about and do all those things, and very rarely suffer from any dramatic problems. And, and I often think about, like how close it came to just being worse somewhere else. And the timing was on my side. And the people I was with, at the times that I happen to was on my side, like, everything that could go right, during a really, really bad time went right.

    Priya 50:56

    Yeah, that I guess that’s how I look at it as well, like I had, obviously, it was multiple clots in my brain. And then I had the clots in my legs and my lungs. And obviously, the lungs can be deadly as well. And so my doctors were actually quite surprised that I had no chest pain, I could breathe properly. Like there was no other signs. And, and I guess just luck that I got there in time because my surgeons did say if you had waited any longer, you wouldn’t be here today.

    Bill 51:36

    Unbelievable. So did you go into surgery and they retrieved a lot of those clots or some of them?

    Priya 51:43

    Yes, I had to clot retrievals. And so they did the first one about two date on the Monday because I got in on Saturday. And then they transferred me overnight to a different hospital. Then they did it first thing on Monday. And then they did another scan and they saw there was still quite a lot. So they did a second one on the Wednesday and got pretty much all of that out. Well, I was actually discharged from my new year last year, because it’s all clear, which is great.

    Bill 52:25

    Okay, so until last year, you were going in doing new scans and just checking everything out.

    Priya 52:30

    Yeah, just sort of every year my scans were always clear though it was more they were wanting to make sure and everything. So I still see my hematologist once a year as well.

    Bill 52:45

    Yeah, and the hematologist is just checkup confirm that everything’s going okay that you’re still taking the medication?

    Priya 52:57

    Basically, he manages my blood thinners. So, and he just kind of checks to see if like my legs are swelling and stuff like that, to see if anything’s come back. So it’s more just making sure everything’s okay. Honestly, I think I’ll be on the blood thinners for a while. So I’ll probably be seeing him for like the next few years. Just because he’s like, you had so many problems. We don’t want to take you off them. And then you have the same issues again.

    Bill 53:38

    Yeah. So steady as she goes. And let’s just focus on on paying attention to what changes occur in your body, if any. And address things rather than being kind of blazar about it because yeah, serious.

    Priya 53:54

    I have heard a lot of stories like that with a doctors have been just so like, just dismissive, or they don’t listen, and it just makes me feel lucky to have the specialists and the doctors that I do.

    Bill 54:12

    Yeah. I think it’s important for people if they’re not happy with the doctors as well, to find another doctor. Like get rid of that doctor, sack that doctor so to speak.

    Priya 54:21

    Yeah. changed. Like there’s no issue and changing doctors.

    Bill 54:25

    Yeah, they just take the record from the previous doctor and move on. I like it so you’re a pretty positive person. You have had a miraculous recovery. It has been an absolute miracle that you didn’t have any lung issues, any brain issues ongoing and all those dramas ongoing apart from a couple of little things that you’re dealing with. What has I know this is a loaded question like has stroke taught you anything like what has it taught you? What have you got out of this holiday experience other than the obvious?

    Priya 55:03

    I guess yeah, like it is just more the obvious like, life is too short part, I guess a bit more now. So and, just I keep, I guess a tighter group of friends as well. Whereas I’m kind of like people in my group that I know that are there for me or that have been there for me.

    Priya 55:34

    Especially, I guess people that if I want to talk about something related to my stroke, they’re there to listen, they’re not just going to be like, Oh, you’re always talking about this and things like that. Because I guess if, if you know me, I guess anyone’s like this right? And correct me if I’m wrong if you’re not this way. But after such a big life event, it’s always going to come up in even little conversations you have, you’re always going to make some kind of reference to it.

    Bill 56:11

    Yeah, absolutely. I mean, I have a podcast about it. I don’t stop talking about I talk about it with everybody forever. You know, there’s 117 episodes with this one. So it does come up because there’s some times at dinner, for example, I may not have an alcoholic drink, or something.

    Explaining to people that you’ve had a stroke

    Bill 56:32

    And people who don’t know me, we’ll ask why aren’t you drinking? And of course, you can give them the just don’t feel like it’s story or whatever. Or if they’re the right person, and you think that they might listen, you might say, because, look, I’ve had a brain injury, and I can’t drink because it makes me feel like I’m having another stroke again, or something like that.

    Bill 56:55

    And that’s how it comes up for me all the time. People notice how I’m different than them. And then they ask me, why am I different? And then I give them an explanation.

    Priya 57:08

    But it I guess it also educates people as well. When you bring that up, like the other day I had friends over. And I am allowed to drink I just have to kind of be careful how much I drink and just to space it out. But then my friends, like, they’re always like, Are you allowed to drink? If they don’t know that I’m allowed. And then they not in a nasty way either. Like, why are you drinking? It’s more like caring and understanding, like, Are you allowed to? And then it does sort of start a bit more conversation as well.

    Bill 57:55

    Yeah, it comes in the same way to me. It’s, and I’m not trying to educate everybody all the time. But sometimes they don’t mind listening to a little bit of my story. If if we go down that path, only if they allow me to go down that path, do you not? I mean, like, I don’t shove it down their throats and say, this is what blah, blah, blah.

    Bill 58:16

    You know, if they know me, because they’ve met me elsewhere, they know that I have a stroke podcast, then it’s not a shock to them that I’m not drinking because I had the stroke years ago. Okay. Yeah. And they’re not really going to have a conversation with me about all of the stroke-related stuff.

    Bill 58:33

    But somebody who doesn’t know about my podcast, who asks at dinner, who is a friend of a friend, you know, we have a little conversation if it doesn’t go any further, it doesn’t go any further. I’m okay with that. I’m not there to educate them on stroke at a party. And let’s have a party but.

    Priya 58:48

    Yeah, exactly. Now, I’m like that, like I wont sort of go further unless they ask more questions about it. And I guess, so when I went back to work after I had a lot of people coming up and asking me cuz obviously, no one knew where I was and things like that.

    Priya 59:11

    And at that point, it was really fresh, and I didn’t really want to talk about it. So I just wrote a blog. Whereas now I’m kind of more I get my story out there if someone asked, I will tell them but then, because there’s so much of my story, I won’t just kind of spill it out if you ask me sort of certain questions then. Because I guess for my story, there’s a lot to digest. Especially for someone new.

    Bill 59:49

    Yeah. And stroke is a massive thing to just for anybody because most of them are like us. Most people are like us before we had a stroke. They had no idea what a stroke was. So they, you know, get stunned and then and then some people don’t want to deal with that kind of information at that point in time.

    Bill 1:00:07

    So that’s all good. I know why you do it. It’s the same reason why I do it. So, look, I’m really pleased to have gotten the opportunity to chat with you and to meet you and to learn about your story. Thanks for sharing on the podcast, I really appreciate it.

    Priya 1:00:22

    No worries, thanks for having me.

    Intro 1:00:30

    Discover how to heal your brain after stroke go to recoveryafterstroke.com.

    Intro 1:00:39

    Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. Opinions and treatment protocols discussed during any podcast are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.

    Intro 1:00:56

    All content on this website at any linked blog, podcast or video material control this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis, the content is intended to complement your medical treatment and support healing.

    Intro 1:01:13

    It is not intended to be a substitute for professional medical advice and should not be relied on as health advice. The information is general and may not be suitable for your personal injuries, circumstances, or health objectives. Do not use our content as a standalone resource to diagnose treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional.

    Intro 1:01:34

    Never delay seeking advice or disregard the advice of a medical professional your doctor or your rehabilitation program based on our content if you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional.

    Intro 1:01:48

    If you are experiencing a health emergency or things you might be call 000 if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department. Medical information changes constantly. While we aim to provide current quality information in our content. We did not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content.

    Intro 1:02:11

    If you choose to rely on any information within our content, you do so solely at your own risk. We are careful with links we provide however third-party links from our website or follow that your own risk and we are not responsible for any information you find there.

    The post A Link Between Contraceptive Pill And Stroke? – Priya Sharma appeared first on Recovery After Stroke.

    1 hr 3 min
  • Brain Stem Pons Stroke – Gloria Morgan

    Gloria Morgan had just given birth to her third child when a brain stem pons stroke threatened to turn what was supposed to be a happy time into a tragedy.

    Socials: www.instagram.com/howglodoesit/

    Highlights:

    01:14 Introduction

    03:18 Pons Stroke and Brain Stem Stroke symptoms
    14:16 What is the Pons?
    20:36 Stroke caused by pregnancy?
    27:35 Nystagmus
    36:50 Refusing to become right-handed
    45:12 Tinnitus
    50:17 The lessons

    Gloria 0:00

    And so now I’m recovering my left hand. And I know of a few other survivors who just switch to writing with their other hand, either because they were faced with paralysis, or they just couldn’t make it work, or they just decided that was the best decision for them.

    Gloria 0:21

    And so I thought about it, and I toyed with it a lot, but I am proud of being a lefty. I feel like it’s part of my identity. And I also realize that because I mean, like I have full use of my fingers like, it’s just a very fine control. And I felt like if I make the conscious effort to start writing with my other hand, then I feel like that will become a learned non-use that will be hard to overcome.

    Intro 1:01

    This is the recovery after stroke podcast. with Bill Gasiamis, helping you navigate recovery after stroke.

    Introduction

    Bill 1:14

    Bill from recoveryafterstroke.com This is Episode 117. And my guest today is Gloria Morgan, Gloria experienced a rare Pons Brain Stem Stroke caused by a blood clot that may have formed around the time of giving birth to her third child.

    Bill 1:29

    Although she had some serious symptoms that were not usual stroke symptoms, it took doctors more than two weeks to make the diagnosis. Now just before we get started, if you have ever wondered what else I can do to help you with your stroke recovery, you should know that I have set up a few recovery after stroke support packages, where stroke survivors can come into a community while trying to get better on their own, and get help from people who are already further along in the recovery timeline.

    Bill 1:57

    I too am a three times stroke survivor, and a brain surgery survivor and I have built for you what I was missing when I was sent home from hospital in the hopes that you don’t have to do stroke recovery as tough as I did.

    Bill 2:10

    Support packages give you access to a variety of tools 24 hours a day, seven days a week, so that you can also work on other areas of stroke recovery that you don’t get the chance to at physical therapy or rehabilitation. With tailored support available for less than $8.50 per week all recovery after stroke support packages, bring stroke recovery to you in the comfort of your own home.

    Bill 2:32

    To try our recovery after stroke support and see if it is right for you to get the first seven days free, as well as a 30-day money-back guarantee no questions asked. As a bonus, you will also get to face to face zoom support calls with myself to take your recovery to the next level.

    Bill 2:49

    Go to recoveryafterstroke.com/slash support to sign up. It won’t cost you anything for the first seven days. And you’ll get a full refund. If you’re not happy after 30 days. You have nothing to lose and everything to gain. And now it’s on with the show. GLORIA Morgan, welcome to the podcast.

    Gloria 3:08

    Thank you.

    Bill 3:09

    Thank you for being here. I really appreciate it. I know it’s late where you live. Tell me a little bit about what happened to you.

    Pons Stroke and Brain Stem Stroke symptoms

    Gloria 3:16

    Well, I had an ischemic stroke a left cerebellar stroke. So ischemic obviously I’m sure anyone who listens to this podcast is familiar it’s a blood clot rather than a hemorrhage stroke which is rupture of a blood vessel.

    Gloria 3:38

    But my stroke was extra special in that the location is very unique. So it happened in a part of the brain called the Pons. I think it stands for something I don’t really know. But basically, it’s part of the cerebellum, which is part of the brainstem. So cerebellar strokes are, I know you’re in Australia. So I don’t know if the statistic is the same worldwide, but I assumed it would be similar but in the US the statistic is less than 2% of all strokes, of any kind are cerebellar.

    Gloria 4:24

    And because the cerebellum deals with more delicate systems like vision, balance, swallowing and things like that, being part of the brainstem, it doesn’t present with the typical symptoms of stroke.

    Gloria 4:42

    So you know the acronym fast face, arm, all that stuff. Those are not the typical symptoms. So what I learned is that cerebellar strokes typically present with the three V’s violent headache, vomiting, and vertigo, which I did have all of those three. But we didn’t know. And those are not typical symptoms.

    Gloria 5:10

    And I’ve never heard of the three V’s. So we didn’t know. So, what happened is, I had a baby. And, about a week after having the baby, I started getting headaches, and they were pretty bad, which was unusual, because I don’t usually get headaches, but you know, I just had a baby, which is a big experience, and all of a sudden, you don’t sleep at all.

    Gloria 5:40

    So, I just didn’t think anything of it, I just thought, Oh, I need more rest. And I need to drink more water and eat more high protein foods, you know, now im feeding a baby that really depletes your body a lot. So, and then after about a week, after the headache started, I started in addition to a really bad headache, like, I mean, like, it was so bad, it would wake me up at night, it wasn’t a headache I could sleep through.

    Gloria 6:13

    After about a week of that off and on, I started getting some like, I would have moments where it would look like the room was kind of like swimming around. And after about that, about four days of that happening off and on, all of a sudden, one day, I got double vision, just like the room split in half and just started going like this.

    Gloria 6:40

    And, you know, that went on for like a minute. And then it went back to normal and just a headache. And at that point, I was like, okay, that’s not normal, I should call my doctor. But the symptoms had already been going on for like a week and a half, almost two weeks at that point.

    Gloria 7:00

    And so, I talked to my Obgyn, she referred me to my primary care doctor, and my primary care doctor wanted to see me right away. And I’ll just kind of push this all together, because of course, there’s a lot more detail in there. But basically, I went to see my primary care doctor, and she wanted me to see an EMT and otolaryngologist nose, throat guy, just basically to rule out vertigo.

    Gloria 7:35

    And she insisted on having me see that guy that day. And so I went straight from her office to his office, like she called him up, he was a friend, she called him up and had me go over there and straight away. And this is the only part of the story that I feel like is important, because I think for many of us, especially young stroke survivors, it’s like those little things that we missed that we regret that now we feel like, I need to tell people so that if this happens to them, like they won’t skip over this and think it’s nothing.

    Gloria 8:13

    They’ll just go like, go get the MRI, go get the test, go get the scan, just call the doctor, you know, so that they’ll find out hopefully, it’s a false alarm. And if it’s not a false alarm, you’ll catch it in time.

    Gloria 8:28

    So we went to the EMT, and he asked me about all my symptoms, and I did a few tests and stuff. And then he explained at the end of the appointment that probably I had benign positional vertigo, which is you know, very mild thing like crystals and calcium crystals in the ear getting displaced and it can cause dizziness and even cause novel visions.

    Gloria 8:57

    So I was like, okay, that’s obviously what I had, because it wouldn’t be anything more serious than that. And no just had a baby, you know, that’ll really really mess you up. And little did I know. And so he gave me something called the Epley maneuver, just it’s like a set of exercises you do where you like turn your head to different sides at different angles, which can apparently help roll the calcium, the displaced calcium crystals in your ear and just reposition them so that it basically resolves the vertigo.

    Gloria 9:36

    And I explained that I needed to do these exercises, you know, at so many times per day, and if I didn’t see the symptoms improve, then I should go to the ER because that means it’s not a physiological problem. It’s a neurological problem. And he didn’t say it was a lot of alarm, because I guess he’s a doctor.

    Gloria 10:04

    But he didn’t say it seriously. And so when he said, that means, you know, if your symptoms don’t improve, that means you should go to the ER right away because that means it’s not a physiological problem. It’s a neurological problem. And so I said, you mean like a stroke? Like, just joking. And he looked at me and said, Yes, not joking.

    Gloria 10:30

    I know, right? And so we went home. And by that time, my eyes were just like, not really seeing clearly. And so I was having to walk, I remember I was having to, like, touch things to kind of, like, keep my balance. But I’ve got, displaced crystals in my ear, I just, you know, and just need to rest and do these weird exercises.

    Gloria 10:42

    So I wake up the next morning, and do the weird exercises, and which it should be noted, these exercises, were literally laying on my back, turning my head in a series of directions, very specifically, which, obviously, I never realized I was basically moving blood clots around in my head, is what happened.

    Gloria 11:24

    So within about 15 minutes of doing those maneuvers, I got up from doing the exercises, and then you know, I have a baby, I haven’t really slept that much before, I need to eat something. So I scarf, like a piece of toast and some water and then, like, all of a sudden, it just all comes up all of it violently into the sink over and over and over again.

    Gloria 11:55

    And basically that was the rest of the day. That was it. Like I couldn’t, all of a sudden, I couldn’t walk, I had to like shakily crawl back to my bed. And I couldn’t see I was seeing double, everything was moving around and there’s two of everything. And I couldn’t stop throwing up. And that’s when we knew it was really bad because I couldn’t hold that water and, like not even water, like it would just all come up violently over and over and over again until I was just dry heaving over the toilet.

    Gloria 12:30

    Nothing would stay in my body. And you know, I had a 24-day old baby who needs to eat like every two or three hours. I couldn’t hold him. I couldn’t see him. I couldn’t see what I was doing. So my husband had to go out like two hours later, he had to go out and go to the store and get baby formula.

    Gloria 12:48

    And our baby went from breastfed to formula fed, like literally overnight, like in one feeding. He went from breast friend to bottle fed and that was it. Because I couldn’t feed him. And so we thought, I don’t know what we thought at that point. It just the word stroke never entered my mind.

    Gloria 13:10

    And I’ll be honest, I don’t actually remember making that joking comment to the EMT. I didn’t remember that until months and months later. Like when I was telling the story to someone I was like, Oh, yeah, I actually joke with the guy like he was trying to tell us like this could be a stroke. I joked with him like do you mean I might be having a stroke? And he was like, Yeah, and I didn’t even remember.

    Bill 13:40

    Well, you’re probably having a stroke. And that’s maybe why you didn’t remember it. How long did it take? How long did it actually finally take for you to get diagnosed?

    Gloria 13:54

    From the original, like the very first onset of symptoms to actual like, I’m in the hospital getting MRI, it was about two weeks. But from the point of me, calling a doctor to getting diagnosed was probably like 48 hours.

    What is the Pons?

    Bill 14:16

    Yeah, well, even then. So it took you two weeks, you’re dealing with this for two weeks. So just for people listening, who might not know the pons, according to teach me anatomy.info is the largest part of the brainstem. It’s located between the medulla, which is the bottom part of the brainstem that comes up from the spine just before it gets to the actual brain.

    Bill 14:44

    And then, and then there’s the pons, quite a large area of the brainstem. It’s the last part of the brainstem. And then it attaches to the middle brain, the part that actually is nearest to the cerebellum.

    Bill 14:56

    I had my bleed near the cerebellum and the second time it bled, and the blade was really large, I had vertigo I had throwing up and I had all those symptoms, except for the headache or didn’t have the headache that you described, I had those other things.

    Bill 15:14

    And I didn’t have those at the beginning and the, and the symptoms that you described, less than 20% of people who experienced a stroke have the standard fast symptoms of stroke. So the other people, the 20%, that don’t fit that category have all these different versions of potential neurological issues showing up that you ignore.

    Bill 15:44

    Like you, it took me a week before the hospital to tell them that I couldn’t feel my left side. You know, it took me a long time to come to terms with the fact that the changes in my body were potentially something serious and I was 37. Like, as if I was having a stroke. How old were you?

    Gloria 16:05

    I was 35. So this was two years ago, almost two and a half years ago.

    Bill 16:11

    Yeah. What was the hardest thing? not physically or emotionally for you at that time? What was the hardest thing that looking back now you had to deal with?

    Gloria 16:24

    Emotionally? Really, it was the fact that I just had a baby, like, I had a 24 day old baby who just all of a sudden didn’t have a mom. And we have three kids. And the oldest is six just now. So when the stroke happened, he was not even four and a half. And then we had a two year old who, and he was still having a bottle with me every morning.

    Gloria 16:52

    So he would get up, have his bottle of milk in my lap in the rocking chair. And then he would go play and I would feed the new baby. And then, you know, all of that, like they didn’t understand. So the hardest part emotionally was basically feeling like my kids were being ripped away from me.

    Gloria 17:14

    And then also being separated from my husband for six weeks, because we’re very close. And but yeah, the hardest part. For me, it was emotionally, it was definitely feeling like I was losing my kids. And like, knowing that my kids were missing their mom, like I will never forget, my husband’s a tech guy.

    Gloria 17:36

    So he had everything set up, like connected to our phones. And so even in hospital from my phone, I can click into the monitor in our son’s room, and look, and so I made the mistake.

    Intro 17:51

    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 now how long will it take to recover? Will I actually recover? What things should I avoid? In case I make matters worse, doctors will explain things. But obviously, you’ve never had a stroke before, you probably don’t know what questions to ask.

    Intro 18:15

    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.

    Intro 18:34

    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.

    Gloria 18:53

    The second night I was in the hospital. I was in the ICU at this point. I clicked into the the monitor in our kids room and like eight o’clock at night around them time basically. And there was my husband on the floor holding my four year old who was screaming with his entire being like just as loud as he could scream like his whole body is just shaking and he was just like screaming and thrashing.

    Gloria 19:31

    Just in that moment, I physically felt like my heart is going to just rip in half and die like I’m going to die this hurts so bad. so that that was the hardest thing emotionally.

    Bill 19:45

    Yeah, I’m sorry to bring it up. I just wanted to give people an understanding that when people have a stroke, everything stops automatically and it doesn’t matter what you’re in the middle of nothing continues. And I know that’s the same for anyone else who has any other type of, you know, health challenge, I get it, I get that too, right?

    Bill 20:06

    That you have to go from being a mom of three kids to a stroke survivor and happens so quickly and leave a 24 day old baby at home with your husband. Yeah, and then somehow you have to navigate all these things, just all at the same time, and you don’t have any of the skills, you don’t have any of the support any of that. No idea. And all of a sudden.

    Gloria 20:35

    It’s just thrust on you.

    Stroke caused by pregnancy?


    Bill 20:36
    Yeah. And it’s emotionally really challenging, I didn’t have that kind of separation, anxiety from my kids, they’re a bit old, and we’re able to see them and there was none of that stuff going on. But I can’t imagine what it would have been like to be such a young mom, and there is a theme in some of my podcasts as a few ladies who have had a stroke, or near or around childbirth, Is this some kind of underlying reason that may have caused that to happen then for you.

    Gloria 21:07

    I’ve never actually talked about this before. But this is the terrifying and sad truth, I probably did this to myself. So what happened is that, you know, I like to be healthy. And you know, I’m young. And I like to consider myself an attractive person. So you know, I want to take care of my body.

    Gloria 21:32

    And we always talked about having three kids. So this was the third kid and I was like, you know, after this, we’re going to be done. And now I’m going to focus on me and taking care of my body and getting myself back to where I want to be where I feel good in my own skin.

    Gloria 21:47

    Any mom listening to this is gonna relate. So the third time was, for whatever reason, it was the easiest delivery super fast, I felt great, almost zero pain, like just barely any discomfort, like nothing. So I was feeling really good really fast. And within a week, I decided, you know what, I’m not going to do anything crazy, I’m not going to go run a marathon, I’m not going to get on the treadmill, and I’ll just do some yoga, I’ll just do a little bit of yoga, something very gentle.

    Gloria 22:25

    And what I realized later, is that, you know, after childbirth, you have an open wound in your uterus that is bleeding. And a major problem, the opposite problem is when women bleed out after birth, so that’s why most women, and after immediately after delivering a baby, they’ll get a vitamin K shot, because vitamin K helps your blood clot.

    Gloria 22:57

    And what you want is for your blood to clot. So that the wound in the uterus, seals up and you don’t hemorrhage and bleed out. Because that’s a very serious life threatening problem for women who’ve had a baby.

    Gloria 23:13

    But the thing is, you have an open wound healing up in your body and what I did, because in yoga, you know, the downward dog position, you’ve got your hips up above your head.

    Gloria 23:24

    And so basically, I was pointing an open clotting wound at my head. And so I mean, this is my theory, and I talked about it with my obgyn she concurred that that was a very likely cause, that it was the yoga of all things. I’m not saying Yoga is bad. But for women who have just had a baby.

    Bill 23:52

    You don’t need to do that.

    Gloria 23:54

    Don’t do handstands, like it’s okay to do some stretching, if you feel up for that. But you should never put your hips above the level of your head when your uterus is bleeding. Because those blood clots those teeny, tiny, microscopic blood clots. I mean, just gravity is gonna do its thing, it’s going to pull them down.

    Gloria 24:16

    And if your head is down there, it’s going to go into your head. That’s why women who just had a baby are also very closely monitored for something called DVT. deep vein thrombosis, which is basically the same thing. It’s just the clots going into your legs rather than your head. So I don’t know, maybe if I hadn’t been doing yoga, maybe I would have had DVT instead. I don’t know. We don’t know.

    Bill 24:46

    It’s a hypothesis worth thinking about. But the fact that there’s no underlying cause is a good thing in that now you know that it’s not something else going wrong that’s causing these things to occur and how how long Are you in the hospital? And what deficits Did you have when you came out of hospital.

    Gloria 25:05

    So I was in the ICU for a week, and then I was in a rehab hospital for five weeks, so a total of six weeks. And when I was discharged home, I was not able to walk, I was barely able to stand on my own. Excuse me. And so part of the cerebellum, as you must know, is that it affects your balance.

    Gloria 25:35

    And my major deficit is I lost fine motor control on my left side. So I can still move all my limbs, thankfully. But the muscle tears basically, in the whole left side of my body didn’t work together. So like, you know, if any stroke survivor, you probably had to do this test where you do this thing, I can move all the fingers in my hand. But like, if I tried to hold a pen, say, like, guide, I can’t.

    Gloria 26:14

    But it was a lot worse when I was in the hospital, like I would hold up my two arms and my left arm would just float away on it. So and I couldn’t do anything about it, I would have to wait for it to stop floating, and then like, consciously pull it back.

    Bill 26:32

    So when you went home, you also weren’t able to fully be involved in your motherly duties, your responsibility, your baby again, you still had to sit on the sidelines.

    Gloria 26:48

    Yeah, basically, I would just move between the bed and the chair so that I would get put in a chair. And anytime the baby needed to feed, they would hand me the baby. And that would just like subtract one of the kids to be taken care of. And so every time he needed to be fed, I would feed him like I would hold him and give him a bottle, which I really appreciated.

    Gloria 27:12

    But that was about all I could do. Until I was able to start walking again. Which actually happened pretty soon it came together pretty soon after I was discharged from the hospital, I was almost kind of there, which is why I think they were like, Okay, get her out. She’s gonna be fine.

    Nystagmus

    Gloria 27:35

    But that was the biggest physical deficit. But I really the biggest deficit overall was my eyes. So basically, when we went to the hospital, I was seeing crazy double, and everything was just like shaking around. And it just stayed like that. And it’s slowly improved to where I don’t see double all the time. And the movement is less. But that is the greatest misery of every waking moment of my life now.

    Bill 28:19

    So the slight vibration of the eye, what’s it’s called?

    Gloria 28:25

    Nystagmus.

    Bill 28:27

    Say it again?

    Gloria 28:28

    Nystagmus. So it’s not very obvious here all this. But if you can see, like you’ll see my eye just kind of ticking.

    Bill 28:43

    Yes, yes, it’s moving. Left and Right, left and right all the time.

    Gloria 28:48

    Right. And if I look up, then it goes up and down. And if I look straight, like, if I look directly at the camera, it looks like I’m just kind of looking around. But that’s because I can’t directly focus my eyes. So what you see is my eyes just kind of looking around, like I just don’t want to look in the eye.

    Gloria 29:10

    But what I see right now looking at the camera is I see two edges of the laptop, and four little dots kind of jumping around. And so my eyes are like constantly trying to pull things together and like make things stand still. And that’s every waking moment. And it’s maddening. So that’s the worst thing.

    Bill 29:35

    Is there. Anything that can be done about that? Does it resolve does it get better?

    Gloria 29:44

    No. I’m no farther. There’s no treatments and the only treatment I’ve been offered by traditional medicine is opioids. And all that does is basically just it’s not a treatment. It’s it’s symptom management. So it’s supposed to basically just sedate the brain so that hopefully the eyes would less.

    Gloria 30:16

    And I mean, we were desperate, you know, so we tried one that my neuro ophthalmologist recommended. And it made me It did nothing. It changed absolutely nothing in my eyes, but it made me so like kind of woozy that I would fall over from a sitting position, just like sitting Indian style, or what do you call it? You know? Just on the floor. Cross legs I just fall right over. I fell over on my baby and hurt him. So nope, can’t do that.

    Bill 30:55

    Wow. Yeah. That’s tough. So you’ve been going through it now for around two years, your husband stepped up and did all the things he had to do. We had a chance to speak to him about what he went through and what it was like for him to suddenly not know what’s happening to you, and what might that mean for his children and him?

    Gloria 31:20

    I’ve gotten sort of a picture based on things he says, but he’s the kind of guy who’s like, just do what you got to do. Like, I mean, he will push through everything, whether it’s like, his wife having a stroke, or like just doing the dishes or putting the kids to bed or if it needs to be done.

    Gloria 31:37

    He’s He’s a German engineer. If it needs to be done, he’ll just do it. But I did, just like from his comments here and there, or to other people or things, like his mom told me a lot of things because when I was in the ER, and like, unconscious, his parents and his brother came up.

    Gloria 32:00

    And so we were in Northern California, they’re in Southern California, it’s about a six hour drive. And so we went to the ER Friday afternoon, and I don’t want to freak anybody out. But it was July 13th. So it was Friday the 13th. I’m not superstitious, but I do like to point that out to people. Because, I mean.

    Bill 32:27

    It’s fun. It’s quirky.

    Gloria 32:32

    I like that. It’s fun. It’s quirky. That’s what I’m gonna say about it next time. But yeah, so we went to the ER, four o’clock on a Friday afternoon. And probably within two hours, we knew that it was serious. And I think they diagnosed it, like within three hours or less. It took several stands, because FYI, a cerebellar stroke will not show up on a CAT scan. It might look like a tumor, but it will not present on a CAT scan, you have to have an MRI. So just good to know.

    Bill 33:17

    So then, are you driving now? Are you back at being physically active like that?

    Gloria 33:24

    No, I’m able to walk. But I have to fight for my balance every single step. So I’m not yet able to balance on either leg actually, which means that walking is very much a challenge.

    Gloria 33:39

    So that’s my physical recovery goal for the next year of my recovery is I want to be able to balance on one leg, because having that balance will mean that I have a better command of my body in order to control motion like jogging, like, ultimately, I want to be able to go back to jogging.

    Gloria 34:02

    I wasn’t a big jogger before the stroke. But that’s mainly because I had small kids. So I was actually starting to ramp up and invest in good workout gear. And like training abs, like I was starting to get into it. And then I had a stroke. Well, when I had a baby and then I had a stroke. And so everything just like you said just everything. It just stops without warning no matter what it is.

    Bill 34:32

    Yeah, your recent posts on Instagram. You show photos of your face before and after. And how it’s improving. Was one side drooped for quite a while and was the eye affected for quite a while.

    Gloria 34:53

    Yeah, so I would say I mean it was the whole left side of my face was basically immobile probably for at least the first two months, or no, I should say at least the first month. And then by the end of my time in rehab, I was starting to see a little bit of improvement, they had exercises taped up in my room that I was supposed to do where you like, you know, open your mouth and stretch your lips, and use your tongue and all that kind of stuff.

    Gloria 35:26

    And, you know, make a fish face and make a big O and all those kinds of things. And because I didn’t know what else to do, there was very little else I could do on my own, I would just do that over and over again. So I was starting to see a little bit of improvement by the time I was discharged.

    Gloria 35:48

    And then I haven’t been like, consistent with exercises, specifically for my face most of the time. But recently, I have been trying to be more consistent with it. Because to be honest, when the pandemic started, and everything shut down, I basically lost the ability to do any kind of meaningful recovery therapy of any kind.

    Gloria 36:17

    And doing face exercises, or something for which you don’t need equipment, you don’t need a therapist, you can just, you know, oh, I’m sitting here while my kid plays with this toy in my lap, and he doesn’t need to get some students in here.

    Gloria 36:35

    I’m just gonna sit here and pull funny faces.

    Bill 36:39

    Yeah, I’ve also seen a post there with regards to your writing. So were you right-handed? And now you can’t write with your right hand, what happened with the right hand?

    Refusing to become right-handed

    Gloria 36:51

    So it was the left side and I was left-handed before. And so now I’m recovering my left hand. And I know of a few other survivors who just switch to writing with their other hand, either because they were faced with paralysis, or they just couldn’t make it work, or they just decided that was the best decision for them.

    Gloria 37:17

    And so I thought about it. And I toyed with it a lot. But honestly, I am proud of being a lefty. I feel like it’s part of my identity. And I also realize that because I mean, like I have full use of my fingers. Like, it’s just a very fine control. And I felt like if I make the conscious effort to start writing with my other hand, then I feel like that will become a learned non-use that will be hard to overcome.

    Gloria 38:01

    Yeah, yeah. So I decided, basically, my motto as stroke recovery, in general, is do the hard thing. And like, so even in the rehab hospital, if my therapist like at the end of the session, they would say, Oh, we have time for one more exercise. Do you want to do this? Or do you want to do that? I would always ask, which one’s harder? Ok let’s do that one. Like, whatever is hard, do that.

    Bill 38:28

    Yeah, that’s not a bad approach. I know that some people avoid doing something hard, that’s painful, that’s difficult. Because they’re going through a lot of other things right. And doing another thing hard and difficult might be, you know, not on the to do this, just let it go push aside, find the easy solution.

    Bill 38:48

    Sometimes that’s a really good approach to because if that makes you feel better, that you found an easy solution and a quick solution. That’s a positive thing as well. But I’m like you, I tend to take the stairs instead of the elevator or the escalator. And I won’t or if I’m extremely tired, but I will do it when I’m feeling good about it because I can walk and most people wouldn’t notice that I’ve had a stroke.

    Bill 39:12

    And they would have noticed that our left side struggles a little bit, especially going upstairs, you know, if if I’m tired, I might clip at the bottom of one of the steps. And that might cause me a trip or lose my balance. But if I’m feeling well, I’ll make sure that I take the escalators because I don’t want to get to that point where I’m avoiding doing something that is really important, like walking upstairs because we have stairs at home. And, you know, just want to make sure that I practice that. And it’s such an easy way to practice. Without putting in too much effort.

    Gloria 39:46

    Absolutely. We just moved into a house that has stairs. And thankfully when we were looking for a house. We didn’t put any limits. assumed it would have stairs. And we both the day we got the keys to the house, I went up the stairs and came down again. And of course, I had to hold the handrail and be careful.

    Gloria 40:11

    But by the end of the day, I got up and down the stairs probably, I don’t know, half a dozen times, or maybe more, maybe 10 times or a dozen times. And I had to you know, concentrated Be careful each time but I was when did I feel exhausted or fatigued? Or, you know, all I had to do is just be careful and carry things.

    Gloria 40:37

    And so my husband and I were both like, oh, the stairs are no problem. Yeah. And we Yeah, even just today you’re like, well, so when the stairs problem, and he’s, you know, you asked earlier what his feeling is what his reaction wasn’t, I don’t think I quite answered it.

    Gloria 40:56

    But basically, he was just like, oh, you can do it. You can do it. But then whenever it’s like, oh, I can handle stairs and it’s fine. He was like, oh, but can you just see the relief Like he wasn’t willing to show that he wasn’t worried. But then the relief comes out like, these are no problems. You’re just like running up and down the stairs. No problem.

    Bill 41:15

    Yeah. So he’s trying to protect you from showing concern or worry. But then when something amazing happens, he is unable to withhold.

    Gloria 41:26

    There’s a little crack like, Oh, I really was worried.

    Bill 41:30

    Yeah, yeah, I understand. That’s a man thing. And that’s probably a German man thing more than it is an Australian man thing. But yeah, it’s definitely a man thing.

    Gloria 41:40

    Thank you for translating.

    Bill 41:41

    Yeah. With regards to the children now, how have they been getting their mom back? Have they kind of transition back to, “what was normal” beforehand now with a new sibling, and all that stuff?

    Gloria 41:59

    Yeah, I mean, you know how adaptable kids are, especially young kids. So they adapted to the changes. But on the other hand, they’re just kids. So like, they understand that mom, had a brain owee that’s how I explained, because, you know, our kids are so young, her oldest was four and a half when it happened.

    Gloria 42:21

    So he understands owee he is. And so I explained it like, well, I had an owee in my brain made me forget how to walk and I can’t drive anymore. And so he understood that. So that’s what my kids understand. I have a brain owee. And now my oldest son understands that brain owees are called strokes.

    Gloria 42:42

    Doctors call a brain owee a stroke. And strokes are very serious. And, you know, we try not to get too serious with them. But like, on the one hand, they’ll ask me to come play with them. And they’ll, like, run up to me and like, just like, run into, you know, barrel into me and grab me around the legs. And I’ll have to scream. Don’t hit mama, mama can fall down, you know?

    Bill 43:12

    They can bring you on stuck.

    Gloria 43:14

    Yeah. So they’ll like play with me. Like they forgotten that I can fall over and get hurt. But on the other hand, like our oldest is, like, Sometimes he’ll show an extrordinary concern, like, unusual concern, like, you know, Mama, I want to protect you. So you don’t get hurt. Like he’s conscious that’s something happened to me that was serious. And he worries and like our four year old, who was only two and a half.

    Gloria 43:46

    And it’s hard to tell him because he’s still so young, but he hates being alone. So if you can’t find Mama or Dada, he’ll get really upset. And now that we’re in, like, we used to be in an apartment now we’re in a bigger house, so even if I’m just downstairs, so just want to come in, like, even if he’s just, you know, watching something on his tablet, he has to be where he can see us.

    Gloria 44:15

    And he’ll like, he still wakes up in the middle of the night and comes into our room and wants to sleep next to me or on me or like, just be closer, all the time. And all of our kids are like that they constantly want to be close to each other or to us and so, it’s sweet.

    Bill 44:31

    Sensitive Kids, that’s all that’s all.

    Gloria 44:35

    Yeah, on the one hand, they’ve adapted to what my limitations are and they tend to forget, sometimes they need to be a little extra careful. But they’re just kids, they just play which is great. But on the other hand, they do have this slight kind of awareness in the background on to that thing happened to Mama so they’re extra sensitive about like, being careful sometimes. and wanting to they’re just very affectionate, which I think is wonderful.

    Tinnitus


    Bill 45:13
    It’s beautiful. It’s awesome. Tell me about the noise that they make. So being young and being kids, they’re going to be very loud and boisterous and fully energetic does the noise and the energy that they have sometimes tire you out and take you kind of to that place of fatigue?

    Gloria 45:33

    Every single day. So I don’t talk about this as much on my Instagram or in person, because I honestly just don’t have time to think about it. But I also lost all the hearing in my left ear and I have really bad tinnitus. So right now, for example, I’m really only hearing you in my right ear.

    Gloria 45:59

    And in my left ear, I hear like a really high pitched electronic buzzing, almost like a sound machine or like an old CRT TV like that high pitched electronical. And it’s really, really loud. Like, I can hear it over the noise of a vacuum cleaner, or a blender, it’s really loud.

    Gloria 46:21

    So any background noise at all just like air conditioning, or a fan or like the dishwasher or just like, while I’m washing my hands, any background noise at all, I won’t be able to understand someone talking to me, even if they’re standing right next to me. So any noise the kids make let’s just say I’m really glad we have a big backyard,

    Bill 46:53

    You can send them out when you need to.

    Gloria 46:55

    Yeah, and so I just after a while I just decided like this needs to be a rule. Now we have a house, we have a backyard. And so I just tell my kids loud noises are for outside you can make if you’re going to make loud noises, you can go outside. So when they start yelling in the house, I’ll give them morning counts. Like that’s one loud noises outside.

    Gloria 47:17

    And if I get to three, I just tell them like, it’s not really a punishment, per se. It’s like, okay, that’s three, you need to go outside, go outside, that’s where you make loud noises. Or if they want to like seeing or if they’re just playing a loud game, I tell them like your noises are just for you, you can go do that in your room.

    Gloria 47:37

    And, you know, if you’re playing that game, or you want to sing that song or whatever, like you can do that in your room. But if you’re going to be in the living room, this is a space for everyone. You have to share, and your noises are just for you. So I’m trying to use it as a way to teach them basically respect and consideration for others.

    Gloria 47:51

    So I try not to make it too much about me and the fact that I’m deaf. I’m trying to partially deaf, I’m trying to make it more about just educating them to be sensitive to the existence and comfort of others.

    Bill 48:13

    I think you’re doing a great job.

    Gloria 48:15

    Cool. Thank you.

    Bill 48:16

    Yeah, it sounds like it because it’s a really unique approach and a lot of mums and dads will be listening, wondering how to navigate this. And I stuffed that up because I would just lose my marbles and yell and scream and be really insensitive to them and really treat them unfairly.

    Bill 48:32

    But not because I was trying to be nasty or aggressive. It’s just because I was at my wit’s end. And I didn’t know how else to do it. And they copped it. And, and then I would spend a lot of time apologizing, and try to make up for the mistakes that I made.

    Bill 48:48

    But I didn’t understand. And perhaps they were a bit older. They were teenagers. So we didn’t have those rules previously. So trying to create new rules around, something like, this was almost impossible anyway.

    Gloria 49:03

    Oh, yeah, for sure. I mean, my kids are really young. So they’re learning the world for the first time anyway. So in that sense, I’m glad that this happened earlier on, so we can just kind of like all learn and grow. And so I’m just teaching them. Like, they’re learning everything for the first time as it is.

    Gloria 49:24

    And this is just kind of part of that. Yeah. And I also realized that, you know, everyone’s deficits are different, like, the tinnitus is horrible and terrible and unbearable, and all the negative things, but there are some people who deal with like, you know, noise sensitivity or photo sensitivity or other things that were the reaction to noise or light or things like that is extreme. And, you know, so everyone’s deficits and struggles are different.

    Bill 49:59

    Yeah, that’s it. I asked now I know, I’m aware of the time because I know it’s after midnight already where you are. So as we come to wrap up, I just wanted to ask you about what some of the biggest lessons have been like, is there something that has stood out?

    The lessons


    Bill 50:17
    That you’ve kind of gone? Oh okay. And, and It happen for me, there was a lot of them. And I know a lot of stroke survivors talk about getting something good out of this thing, like, has there been something like that for you?

    Gloria 50:32

    Definitely a number one lesson. And this is just a phrase that I made up for myself, everyone’s pain is their own. Which basically, to me means don’t compare you suffering. And I seen those two things as basically a gateway to empathy, like, that should bring you to empathy.

    Gloria 50:55

    So that was the big aha moment for me was, like, in order to really empathize with people or someone has gone through something hard, so that when you are going through something hard, you know, they get it.

    Gloria 51:27

    So, I realized early on, you know, if I started talking about what I was going through, people would say, Oh, I totally know what you mean, I get headaches too. Or sometimes my eyes bother me too or, oh, sometimes I get tinnitus too. Or Oh, I know what you mean. Like some days, I just am so tired. Like, oh that’s insane.

    Bill 51:58

    So they try and have a conversation with you by bringing themselves to a place where they can relate and then continue the conversation in a cordial way. But they don’t know how to relate. And they use skills available to relate. And they failed dismally. But then it’s also important for us, to allow them to fail dismally, and to just not make it.

    Gloria 52:27

    Not make it a big deal. Yeah.

    Bill 52:29

    And try to teach them a lesson all the time.

    Gloria 52:31

    Yeah. But as a survivor, I mean, I’m sure you know, it’s hurtful to just be like, Oh, yeah. And to minimize your own suffering. And after doing that many, many times, and I’m sure, you know, I’ll probably continue to have to do that permanently now. It really just helped me realize like, you know, I probably do that to other people.

    Gloria 53:00

    And just because I’m going through something harder than them, or that I feel is harder than what they’re going through. That doesn’t mean they’re suffering in any less of a struggle, like my suffering doesn’t invalidate yours. So I remember talking to a friend one day, and she’s just, you know, your typical stay at home mom.

    Gloria 53:25

    And she was having a hard time. And, you know, you’re talking to him, like, oh, but I know it’s nothing compared to what you’re going through. And that was the little moment where it clicked. I was like, You know what? You know, she has had a stroke. But that does not mean her day is not fresh, straining, or that she should feel frustrated and like vent a little bit.

    Gloria 53:48

    And so I told her, you know, just because your biggest struggle this week, was that your toddler mashed banana into the carpet. Like if that’s the biggest thing you struggled with this week, if that’s your most frustrating problem this week, the fact that you didn’t have a stroke doesn’t make the mashed banana in the carpet any less frustrating.

    Gloria 54:15

    So that, to me, it just became this mantra to meet everyone’s pain is their own, like, it still hurts to them, it’s still a struggle to them don’t invalidate what other people are going through. Because it’s not the same.

    Bill 54:33

    We can win the I struggle more than you battle every time. I mean, if we wanted to, apparently, you know, our like you said it’s worse for us than it is for them. But when the banana gets mashed into the carpet, it’s not the banana in the carpet that’s the issue. It’s all those little things that have led up to the banana in the carpet. That we cop and cop and cop and cop and cop and cop and then one day, a banana in the carpet just drives you bonkers.

    Gloria 55:03

    Yeah, exactly. See, now I can tell you’re a parent, you know, you get. It’s not about the banana in the carpet, it’s all the other little things. And so I just realized whether it’s a mom at home with her kids getting frustrated over, you know, the mess at home and just never having enough me time, whatever, or it’s, you know, I’ve had friends who have lost a loved one suddenly and tragically in ways that were just devastating.

    Gloria 55:32

    You know, there are, you know, like, I don’t know what it’s like to have, I just told a friend this the other day, like, I would never compare the tension headaches I get with my eye problems to a migraine because I have never had a migraine. You know, she gets migraines all the time, which is terrible. And I know how much how painful and what of what a struggling is for her.

    Gloria 55:58

    So you know, I’m not gonna be like, Oh, well, you know, that’s nothing compared to what I went through. Like, I’ve never had a migraine in my life. Yes, I had a stroke, but I never had a migraine. So, like, Why make her feel like, what she’s going through? Isn’t worthy of weight? Yeah, it’s like, there’s no reason to invalidate it. Her suffering is still valid.

    Bill 56:22

    Yeah. Gloria, thank you so much. I really appreciate you reaching out and being on the podcast, I realized that it’s 12:30am, where you are right now.

    Gloria 56:34

    You’re very kind to keep the time I wasn’t paying attention. And I didn’t notice.

    Bill 56:39

    I know. If I was a stroke survivor, I probably wouldn’t get on somebody’s podcast at 12:30. I am. Because I don’t do well, if I haven’t slept enough. So I really just appreciate you being on here. I appreciate your sharing on Instagram. It made me curious about getting to meet you and understanding a little bit about what you do and how you’re going about your recovery.

    Bill 57:03

    I think it does help for me to see what you’re going through and the sharing that you’re doing. And I think a lot of other stroke survivors respond in the same way. So well done, keep doing what you’re doing. And I hope everything goes well from here on.

    Gloria 57:16

    If you don’t mind. Can I just mention one thing for anyone interested in checking out my story on Instagram, I do want to caveat that, like I do like sharing progress and recovery and hope. But a lot of what I share on Instagram is related to grief and the struggle just because I find that for me at least, I just really believe that sharing the grieving process is very healthy and productive.

    Gloria 57:46

    But I also don’t want to alarm or depress anyone, I’m not there, constantly, like grieving over my life. Just sometimes whenever those really hard moments happen. That’s what I share. So I do tend to share a lot of that stuff. Just as when I first came on Instagram looking for other young stroke survivors, I mostly saw people who were like your stroke four years, we can do this. And I didn’t see a lot of people who were expressing what I was feeling. So I just started thinking like, Guys, this really sucks and I hated it.

    Bill 58:18

    And that’s so fair, because it does suck and it is shit. And I go through this a lot. And I didn’t get that from your page. I didn’t get that you just talk about the negative or the grief and all that kind of stuff. I’ve got that it’s an inspiring thing. And your stories are true. And they’re real. And for me, I do post about things like the screws in my head hurt, and why do they hurt and you put that out there and people respond and they go yeah, the screws in my head hurt as well.

    Bill 58:46

    And then it’s because of the barometric pressure, and oh my god, like it’s scientific. Wow, like, you know, there’s a whole different kind of level of learning and understanding. You know? So thanks for saying that. But I didn’t get that from your Instagram for people who want to follow you.

    Bill 59:04

    I’ll have a link to your Instagram there. And they can reach out and have a look for themselves. That kind of stuff. your photos are pretty cool. There’s some photos there. There’s food photos. There’s handwriting photos. There’s a lots of stuff. There’s even a book that is about the foods that you should eat to help with health and well being and it’s next to a cake.

    Gloria 59:33

    Yes, hashtag doing it wrong.

    Bill 59:38

    I love it thank you Gloria so much.

    Gloria 59:40

    Welcome. Thank you for having me.

    Bill 59:44

    Well, thanks for listening to this episode of the recovery after stroke podcast. If you like this episode or any other episode, please hit the like button. If you’re watching on social media. Give us a thumbs up if you are watching on YouTube and give the recovery after stroke podcast a five star review on your favorite podcast app. Doing that, we’ll make the podcast more visible to other strike survivors that are doing it tough right now, and it could help them feel inspired and feel better about the road ahead.

    Intro 1:00:19

    Discover how to heal your brain after stroke go to recoveryafterstroke.com.

    Intro 1:00:29

    Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals opinions and treatment protocols discussed during any podcast are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.

    Intro 1:00:46

    All content on this website at any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis.

    Intro 1:00:58

    The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice. The information is general and may not be suitable for your personal injuries, circumstances or health objectives.

    Intro 1:01:14

    Do not use our content as a standalone resource to diagnose treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional. Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitation program based on our content if you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional.

    Intro 1:01:37

    If you are experiencing a health emergency or think you might be called triple zero in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department medical information changes constantly. While we aim to provide current quality information in our content.

    Intro 1:01:53

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    The post Brain Stem Pons Stroke – Gloria Morgan appeared first on Recovery After Stroke.

    1 hr 3 min
  • Brainstem Cavernous Angioma – Whitney Spotts

    Being a mom to a toddler is challenging enough and when you have to deal with a brainstem cavernous angioma causing a bleed in your brain it becomes even harder.

    Socials: www.instagram.com/whittermac/

    Highlights:

    00:59 Introduction

    03:41 The Stroke Symptoms
    04:51 Brainstem Cavernous Angioma
    11:21 Life at home after hospital
    15:14 More self-love and compassion after a stroke
    22:44 A reason to recover after a stroke
    31:52 Acceptance
    38:09 Finding happiness
    45:57 (BDNF) Brain-Derived Neurotrophic Factor
    52:24 Meditation helps with stroke recovery
    58:04 Intimacy Issues caused by the stroke

    Whitney 0:00

    I was just a very active person that was my lifestyle. And now to not be able to stand on one leg, not be able to really run for longer than 10 seconds, you know, not be able to do so much like even to write or, you know, a lot of things it’s very different. But I don’t care as much as I did before. I was really upset in the beginning. Because change is just difficult. There’s no way around it. And I learned, the more that you accept what’s going on, the better things become and the better you actually feel, and acceptance is huge in my recovery.

    Intro 0:46

    This is the recovery after stroke podcast, with Bill Gasiamis, helping you navigate recovery after stroke.

    Introduction


    Bill 0:59
    Bill from recoveryafterstroke.com This is Episode 116. And my guest today is Whitney Spotts. At 34 Whitney experienced a brain stem stroke caused by a cavernous angioma. At the time of the stroke, Whitney was only very recently married and was also a mom to a toddler, who was one of the big motivating factors that kept her mommy going and doing her best to overcome the challenges that stroke caused.

    Bill 1:29

    Now before we get started, if you have ever wondered what else I can do to help you with your stroke recovery, you should know that I have set up a few recovery after stroke support packages where stroke survivors can come into a community while trying to get better on their own and get help from people who are already further along in the recovery timeline.

    Bill 1:49

    I too am a three-time stroke survivor and a brain surgery survivor. And I have built for you what I was missing when I was sent home from hospital in the hopes that you don’t have to do stroke recovery as tough as I did. Support packages give you access to a variety of tools 24 hours a day, seven days a week.

    Bill 2:07

    So that you can also work on other areas of stroke recovery, that you don’t get the chance to a physical therapy or rehabilitation. With tailored support available for less than $8.50 per week, all recovery after stroke support packages, bring stroke recovery to you in the comfort of your own home.

    Bill 2:27

    to try out recovery after stroke support and see if it is right for you, you will get the first seven days free as well as a 30 day money back guarantee no questions asked. As a bonus, you will also get two face to face zoom support calls with myself to take your recovery to the next level.

    Bill 2:44

    Go to recoveryafterstroke.com/support to sign up. You won’t cost you anything for the first seven days. And you will get a full refund. If you are not happy after 30 days. You have nothing to lose and everything to gain. And now it’s on with the show. Whitney Spotts. Welcome to the podcast.

    Whitney 3:03

    Thank you. It’s an honor to be here and just help raise awareness about stroke.

    Bill 3:09

    It’s interesting how many people come forward to talk about it. And how many stroke survivors say things like I just want to help other people. I just want to tell other people what my story is what my experience is just to make their life a little bit better, which I just find amazing that stroke survivors are doing it really tough. really have that front of mind and it’s heartwarming. Tell me a little bit about what happened to you?

    The Stroke Symptoms

    Whitney 3:41

    Right before the stroke, you know, I was 34 years old when it happened. But I was a physician assistant in the ER I was comfortable in my job. I’ve been working six years I married my husband just a couple years prior and had a beautiful baby girl and it seemed like you know, life was just starting for us.

    Whitney 4:02

    And I really didn’t have any warning it was just another Monday morning and I woke up at about 3am with the worst headache of my life. And as a physician assistant in the ER you know what that means, but I didn’t even put it on the radar because I was young, I was healthy. I had no risk factors, no family history.

    Whitney 4:28

    So I just assumed I had a migraine or something I’d never really had a migraine before. And I was very wrong. I started to get sick and slur my speech and my husband luckily knew that something was very wrong and took me immediately to the hospital but I was having a hemorrhagic stroke.

    Brainstem Cavernous Angioma

    Bill 4:51

    Was it an aneurysm and AVM what caused the bleed.

    Whitney 4:55

    I had a cavernous malformation in the brainstem. And so in addition to having a hemorrhagic stroke, I needed emergency brain surgery on my brainstem. So it was a very risky procedure and but I’m here all as well,

    Bill 5:14

    Yeah, well, it’s so fascinating, because I know plenty of people who have had brain stem stroke. I know plenty of people through the podcast, of course, who have had a Cavernous Angioma, that has caused the bleed.

    Bill 5:28

    And when, in the past, I had heard about people having a brain hemorrhage, or an aneurysm burst or something along those lines, it is very, very rarely was a good outcome. Like we never in the past, we never got to hear about all these amazing stories of survival and recovery and overcoming. When you woke up from all of this drama, what were you left with? What kind of challenges did you have to overcome?

    Whitney 5:59

    Well, unfortunately, I was awake, I didn’t have the proper affect. Like now I would be scared what was happening, but I was more I had a flat affect that I was just curious, I was losing function on my arm, I couldn’t sign into the ER, I was losing function of my leg. They told me I had blood on my brain. I needed surgery and all these things.

    Whitney 6:25

    And I’m just like, it wasn’t quite clicking appropriately. But the way there was so much inflammation on my brain that the surgery was done in one day, because it was located in my brainstem, and there was so much inflammation, they weren’t sure that they’d be able to get to it.

    Whitney 6:44

    So that one day was pretty tough, because I couldn’t talk I had severe facial droop. And I could just think, all day of possible scenarios. And so I kind of wish that I was asleep, but I was awake during that time.

    Whitney 7:06

    And then when I woke up from surgery, I was completely paralyzed, on the right side the surgery did cracked, the facial droop, and it took about a few weeks to significantly change, and then a few months to change all the way. But it was corrected a lot by surgery. But I was left with my arm and leg paralyzed completely no movement, nothing can wiggle toes, like there’s nothing for about two months.

    Bill 7:40

    So that was a pretty intense rehab. So what you’re saying to me is you went to the hospital, actually quite aware, although you didn’t realize the significance of what you’re hearing and what were telling you, you actually quite with it, and therefore you had a lot of time to run everything through your mind on what the possible outcomes might be.

    Whitney 8:01

    Correct. So it was a tough day for sure. I have a daughter, as I said before, and she was 18 months at the time. And so I was fearful of having to say goodbye and my family and my husband and my life. And just I felt young. I was 34. I was like this is all at this time I have you know, it was a tough day.

    Bill 8:32

    And was family able to get there and see you or did it happen relatively quickly that it was just about getting you well, rather than sort of bringing everyone around.

    Whitney 8:44

    They did. They flew from California, New Mexico, my mom drove up from South Florida, everybody was there because we had that one day. So it did give people a little bit of time to say goodbye, if you know, that was kind of it was presented like this is really your only choice.

    Whitney 9:06

    She’s bleeding in her brain and we don’t like to do brainstem surgery, but this is the best option for her. And so it was a very real possibility. And like I said, I just had a very flat affect. Like I couldn’t really comprehend the severity of what was happening to me.

    Bill 9:25

    How could you I mean, you’re three minutes earlier, you’re just a normal person in bed sleeping, no need to worry about brain injuries or anything like that. And now you’re suddenly bombarded with all this new information about your life being at risk and you can’t comprehend it how can you possibly comprehend it?

    Bill 9:45

    I went to a hospital and I had a bleed on my brain and I went seven days after it started bleeding. And then when I was at hospital, I was walking around I was never in my bed and the the nurse we’re always looking for me and telling me to stay in my bed. But because I felt well, after they gave me some medication.

    Bill 10:07

    I didn’t also connect the dots into how serious this could be and turn out. And they were so concerned. And I think that being unaware of the seriousness really helped early on, especially when family found out that I was in hospital, they came and saw me and they did the whole oh, but he looks great. I don’t really know what the issue is. Which was good and bad. Because then later on, they did the whole you look great, even though I was really unwell. So how long has it been since so you were 34? How old are you now?

    Whitney 10:45

    I’m 36. Now, so I’m very early on my stroke, recovery, and having a miraculous recovery, really. But it was January of 2019. When that happened.

    Bill 11:00

    Then you’ve gone from hospital into rehabilitation for a few weeks, or was it months.

    Whitney 11:06

    I was in the hospital for a few weeks. And then I went to two different rehab facilities for a few weeks each. And it was a total about two months.

    Life at home after hospital

    Bill 11:21

    And then when you came home, what was that like how was the reintegration into the house life after that with a little baby and being a mom and dealing with stroke.

    Whitney 11:34

    It was really, really tough. There’s really no sugarcoating or silver lining, it was absolutely terrible. In the beginning, I couldn’t change her diaper, put her in a highchair put her in a car seat, put her in bed, I couldn’t hold her, I couldn’t really barely walk. So I couldn’t chase after her and play with her, there were so many things that I couldn’t do.

    Whitney 11:59

    And as a new mother, as a young mother and a new mother, you just almost feel like you’re not doing enough or you’re not a good mom, even though that’s not true. But you just can’t do so many things I couldn’t do her hair, for example, like, which is not important. But like I just couldn’t be the mom that I wanted to be. And I couldn’t drive to the grocery store for my family, like help out my husband and I just been through a lot.

    Bill 12:29

    Were you hard on yourself sounds like you were hard on yourself for not being able to do these things.

    Whitney 12:34

    I was in the beginning. And that has been this whole experience has been has taught me so much about myself. But it’s kind of a neat experience, really, I’m grateful for the wake-up call. And just for all of the lessons that I’m learning. And I was proud of myself, when I couldn’t do something, I would say, Oh my gosh, you should totally be able to do this, you know, I would try 20 times or something.

    Whitney 13:00

    And I couldn’t take as little as I do unto a lid or something like that. And you’d have to ask for help. And it was really hard for me to ask for help. I’m a very independent person. In the beginning, I needed help with everything from tying my shoe to putting up my hair and taking a shower to just driving to rehab. Like I just needed help all the time. And I was harsh on myself. And I’m learning just to let go and soften you know, and just be a different person, I guess.

    Bill 13:38

    Now, the question would be, what do you say to yourself, you know, the person you are today to the person just two years ago? What kind of conversation would you have with that person now?

    Whitney 13:54

    You know what I did, which really helped me I put a picture of myself as a baby as a little girl, I think I was four, right by my bedside in a frame. And I really liked this picture. And I talked to that person all the time, because she looks like my daughter, like look like Stella and of course I would never say what I said to myself to my daughter, or my best friend or anybody else besides me.

    Whitney 14:25

    And I knew that it wasn’t a healthy relationship or personal relationship with myself, and that I was going through a really tough time and that I needed to soften and that I needed self-love. And that was probably the best thing. I still have that little picture by my bedside.

    Bill 14:46

    Whitney, that’s really profound what you just said. How did you get to that point because not many people think of that and you did and you’ve experienced a profound shift in how you’ve experienced it. The challenges that you’ve had to face so, what made you get to that point to bring little Whitney into the picture and have this amazing heart to heart conversation with her.

    More self-love and compassion after a stroke

    Whitney 15:11

    I must have read it somewhere or seen it somewhere or something, I don’t recall that. But, I mean, just this whole experience, the emotional journey has almost been harder for me in a way than the physical journey. So I have thought about ways to create more self-love to create more compassion for myself.

    Whitney 15:40

    I mean, I went into medicine because I wanted to help serve other people. That’s why I became a physician assistant. So when this happened to me, I was like, it’s not about serving other people right now. It’s about serving yourself so that you can serve other people.

    Whitney 15:57

    And that was kind of the turning point where I just started. I feel like I just kind of came into all of the right people at the right time. I mean, books and people like you and, you know, just, I’m in sync or something, you know, and I just feel like I’m getting tons of information.

    Whitney 16:25

    That’s really neat and really interesting from everything about neuroplasticity, two-stroke rehab, to the American Heart Association that I’m working within the United States. And just, there’s so many great things happening right now.

    Bill 16:43

    That’s great. I know that in coaching, when I’ve coached people in the past and now. And before I coach stroke survivors are coached people just from all walks of life, often, very often, many of them, when they had an injury that was associated to their body or to their health or to their well being, they often went into the physical side of it.

    Bill 17:06

    If I can get up and go there, it’s all good If I can do that, it’s all good. If I can do it all good. And they neglect the emotional recovery, thinking that it’s too hard, or they don’t know how to go there, or it’s too raw. And there’s a whole bunch of reasons why they avoid it.

    Bill 17:22

    But sometimes it’s just because in stroke recovery, to get out of hospital, you really have to be able to be independent in some way, shape, or form, whether it’s pushing your wheelchair around, or walk with a cane, or with the assistance of some sort, it’s all about the physical recovery.

    Bill 17:41

    And for some people, that takes a really long time. And therefore, it could be the only focus for a really long time. And the emotional recovery just gets neglected, not by choice or on purpose just because it has to take a backseat so that that person can go to the toilet themselves or shower themselves or all those other things.

    Bill 18:03

    And then it catches up with people eventually. And and if I can bring people to that point where they are doing both recoveries at the same time, then that’s even better. Because what you want is you want to do the physical stuff. But while you’re sitting down and resting do a heartfelt meditation doesn’t take any time, it doesn’t take any extra effort, just pop your headphones in, grab one off YouTube or Spotify for free.

    Bill 18:30

    And just allow yourself to go into this place, you know, where I think recovery really begins and what we see externally on the physical is important, but I think its second in the order of which recovery is most important.

    Bill 18:49

    And I know for me, when my head went offline, I actually started to notice my heart in my chest for the first time like I properly started to notice that I didn’t realize that this thing that I was feeling in my chest was my heart and the importance that played in my life and it was just so bizarre. I’m glad I found it.

    Whitney 19:11

    Yeah, I mean the mind-body, some people speak of the mind-body connection, and I don’t feel like they’re separate. Like it’s one unit. It’s not mind affects body or body affects the mind but like it’s all one thing. So I think that for people to separate physical limitation, and then separate emotional or mental health, that creates a barrier for some because it’s all kind of related and intertwined. And it’s like one unit.

    Bill 19:44

    Yeah, it’s like the, you know, we’ve got the land that we can’t get to the different continents unless we use the sea and the sea is what connects the entire planet, right? So without the sea. Then we’ve just got this landmass and you could be forgiven for thinking that if it’s all landmass, then it’s all connected.

    Bill 20:06

    And because the sea is in the way, we kind of see this disconnection. But the reality is that there’s ways to navigate that. And without one, we don’t have the other. We just, we have this different version of it. So I love the way that you spoke to this little version of yourself. It’s a really important thing. And I love that you’re somewhere you don’t know where but somewhere you picked up on that you wouldn’t talk to your friend the way you’re talking to yourself. And you ran with it.

    Whitney 20:38

    Yeah. It really worked for me. Like I really feel like I actually not that I was never a person that hated myself or anything or thought I wasn’t enough or anything like that. But I wasn’t necessarily a person in love with my qualities, and myself. And now I can say that I am. I think I’m amazing. And I’m just wonderful. And happy to be here and survivor and thriver and everything.

    Bill 21:14

    Yeah, that’s awesome. How did your husband deal with all of the sudden stuff that happened? hospitalization and then your recovery? How is he doing?

    Whitney 21:25

    Well, it’s really tough also on him just because we have a toddler. Um, well, I mean, the initial response from him was amazing. Like, he noticed something was wrong. He got me the help that I needed. He was really calm, even when we got terrible news. You know, he didn’t freak out, which probably helped me not freak out.

    Whitney 21:49

    And he was wonderful. And it was really tough because I live in Florida, and one of my rehab centers was in Georgia. So I was about seven hours away from here. And so it was tough to try to see me like he wasn’t always there. Because we had our daughter. And we were trying to make life as normal as we could for her because she was just at the age where, of course, she didn’t know why I was in rehab or anything.

    Whitney 22:21

    But she sort of knew that I was in the hospital like mommy’s not here, you know, Where’s mom kind of thing. And so I think that just tugs at your heartstrings, you know, and it was hard for him, but he did a really wonderful job. He’s very supportive. And yeah, I couldn’t ask for more.

    A reason to recover after a stroke


    Bill 22:44
    Yeah. How, what an amazing motivation, though, you know, having the little one at home, thinking, Where’s mom? And it’s like, well, I’m getting back to you, like, I’m gonna get there. You know, I’m gonna get better. Did she play a massive role in your recovery?

    Whitney 23:03

    Absolutely. When I was at my first rehab center, right out of surgery, I was in the hospital for a couple weeks, but a couple of weeks out of surgery. I was pretty blue. I was paralyzed, I was down and out. I was feeling really emotional. And just wait, what, why am I here? Why did they even save me? Why did I even get out of surgery, I don’t want to even really be here.

    Whitney 23:33

    Not that I contemplated suicide. But I just felt so useless. And I couldn’t move my right side. And I couldn’t do so many things. And so I put pictures of her all over my hospital wall, like 25 pictures, probably. And I just looked at them every day. And over the course of a few days, even.

    Whitney 23:58

    I just changed my attitude. And I said, she needs me and I want to be here for her. And I can only be here for her if I’m here for myself. So even if I can’t move my right side ever, it’s okay. And it was like the first step of acceptance. Like I started thinking of all these people that I have seen celebrities and things that don’t have arms or don’t have legs or are in wheelchairs or whatever. And I was like they have a beautiful life. So you too can have a beautiful life.

    Bill 24:33

    Regardless of what happens.

    Whitney 24:36

    Yeah, and she has been a huge factor. In my recovery every single day. I play with her toys, like when I did OT, I would play with her toys and just do as much as I could because I had all of these puzzles and blocks and stuff in the beginning that you know, was very hard for me.

    Whitney 24:58

    And so she’s perfect. She’s at the perfect age. Actually, I don’t like using the word perfect, because what’s perfect, but she was a great age. And really, she’s my little angel.

    Bill 25:14

    You can say she’s perfect. I mean, there’s nothing wrong with that she’s perfect. In Episode 56, I interviewed Jason Gaudette and Jason was from Canada. And he experienced the bleed in the brain, he had an AVM rupture and arteriovenous malformation.

    Bill 25:33

    And he, in the interview was talking about how the recovery that he experienced, was happening around the same time that his son was starting to walk. And he couldn’t walk. And he realized that his son was going through the same things that he was. And because he had this real adult awareness of what it’s like to try and walk again, he was his son’s biggest, you know, supporter of go on, you’ll be right, you know, you’re not walking yet or you fell over, you fell on your bum, it doesn’t matter.

    Bill 26:08

    And he just had this new awareness of what his son was going through to get back on his feet for the first time. And it was so motivating to him. And he was talking about that really massive connection that he was able to have with his son that he wouldn’t have had in that way had he not experienced the challenges of regaining his ability to walk again.

    Whitney 26:33

    I mean, that’s kind of how I feel this time that I’ve spent at home with Stella recovering and everything, I was always at work, I wasn’t around as much at all. And we have formed a really beautiful bond over this. And I feel the same way. It’s really, kind of neat.

    Bill 26:58

    I was at home when my kids were in their teenage years. So at a time where I would have been pretty full-on in work and out of the house for many hours. And then in the study, you know, putting together all the things I needed to do for work, I would have spent less quality-focused time on them.

    Bill 27:23

    And my wife was at work doing all those things that she needed to do to keep us going and keep the family afloat, in financial and all those things. And because I wasn’t able to work, I was able to be there for the kids, when they came home from school. When they left for school, I was able to prepare their lunches and do all those things.

    Bill 27:42

    And I wouldn’t have got that opportunity to be so involved in their teenage years at a time, which I think is really important for kids for their parents to be really involved when we’re in the thick of trying to keep the bills paid, and the mortgage paid and all that kind of stuff. So it was a really amazing time for me as well.

    Bill 28:08

    And I got to have this little gift that kept on giving for both the stroke and the opportunity to be at home with the kids. The stroke kept on giving the gift of letting me be at home for years. And the being at home for years kept me involved in those for many years of my kids lives without trying to be a weirdo Dad, you know, who imposes himself all the time.

    Bill 28:35

    I was just here. So I wasn’t doing the whole imposing myself. It was just I’m here, they’d come home. And we’d chat about things that at 3:30 or four o’clock in the evening. I wouldn’t normally chat to them about because I wouldn’t see them until seven o’clock. So it was a really bizarre gift that you get. It was a great gift that you get from a bizarre situation.

    Whitney 28:59

    Yeah, yeah, it’s really tough to have kids and have a stroke. And then on the flip side, it’s the most beautiful thing because you do have that time and you do have that bond.

    Bill 29:12

    Yeah. How long did it take for you to get back to all the things that you were doing beforehand? Basically what I mean by that is, did you get back to driving relatively quickly. Did you go back to work? What happened there?

    Whitney 29:29

    Well, I’m still am recovering. Today, actually. But I couldn’t drive for about 11 months. I am not able to go back to work yet because the duties of a physician assistant suturing and just doing tons of typing. I can’t really type on the computer. I usually use voice to text a lot for our social media or for texting.

    Whitney 30:05

    Although it is getting a little bit, it’s gotten better with my left hand. But I had spent last year yeah, it’s just still ongoing. I am just starting to be able to run again I just another probably a couple months ago, got the strength to hold my daughter again. I’m almost fast enough to chase her. But, you know, there’s a lot of things that I once did. I mean, I was a gymnast growing up, I was a competitive cheerleader. I was super active prior stroke. You know, I did yoga paddleboarding, running , I mean.

    Intro 30:50

    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 now long will it take to recover? Will I actually recover? What things should I avoid? In case I’ll make matters worse.

    Intro 31:07

    Doctors will explain things that obviously, you’ve never had a stroke before, you 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.

    Intro 31:29

    It’s called 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. And 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.

    Acceptance

    Whitney 31:52

    I was just a very active person, that was my lifestyle. And now to not be able to stand on one leg, not be able to really run for longer than 10 seconds. You know, not be able to do so much like even to write or you know, a lot of things, it’s very different. But I don’t care as much as I did before I was really upset in the beginning.

    Whitney 32:19

    Because change is just difficult. There’s no way around it. And I learned, the more that you accept what’s going on, the better things become and the better you actually feel. And acceptance is huge in my recovery.

    Bill 32:36

    So what it does is acceptance allows the body to just calm down, it allows the stress hormones to relax, to go away, it allows the blood pressure to stabilize, it allows the heartbeat to you know, just settle down. And therefore that creates the perfect environment for healing in the brain to happen. And then as you go about your daily life because you have to be active anyway, because you have a toddler.

    Whitney 33:05

    Right, which is a good thing.

    Bill 33:07

    Yeah, you have to because what that’s doing is that’s allowing neuroplasticity to continue happening and repetition to continue happening. And there’ll be a time where you’re holding something in your left hand, and you’re going to try and reach out with your right hand.

    Bill 33:21

    And that movement without thinking about it in that acceptance phase of your life is going to allow for great neuroplasticity to occur. And, I’m not saying that that means that your hands are going to come back exactly the way that it was before. But what it will do is allow for the natural evolution of recovery to happen.

    Bill 33:40

    And therefore you don’t have to really think about it, you just have to know is that I need to be able to chase after this little thing because I need to be able to get to her when she’s going into the wrong direction, you know. So the running will come as well. So I started running probably about eight or nine months after my brain surgery.

    Bill 34:03

    And at the beginning, I was really afraid to do more than a couple of steps because I felt weird. It felt strange, the feedback from the ground was different. I was afraid that I’ll buckle my knee and hurt. But then as I started to just run to the corner of our street or across the road when it was quiet or something like that. Then I started to notice that the amount of distance that I could take next time just grew, even if it was by two or three steps.

    Bill 34:21

    The muscle memory kind of kicks in a little bit. And before you know it, you’re like oh yeah, I know how to do that.

    Bill 34:44

    Yeah, so it might feel a bit different and a bit not the same as before, but it still allows you to do the function of running so that it could be useful. Whereas before when I used to run at the gym I think I did it because I thought I was running to be fit healthy, all those things.

    Bill 35:04

    But I didn’t realize what they used to running was for me running became useful after the strike because one of my physios said to me, why do you want to be able to run and I said not to run a marathon, but just to get across the road for cars coming, but don’t want to be in the middle of the road? He goes, Well, that’s a great idea. It’s a great reason to run. Now let’s give it a go.

    Whitney 35:30

    Well, yeah, I actually have found other things that I almost love more than running. Because, you know, adapt is the name of the game when you have a stroke. And so I bought a tricycle and it looks just like a beach cruiser. I live on the beach here in Florida. And it allows me to go with my family for bike rides.

    Whitney 35:53

    And when I kind of drive, I would ride my bike 8, 10 miles and go to my appointments and stuff. And it was great repetition, and I took up swimming. And running is kind of on the back burner. You know, it was more important in the beginning, because I couldn’t do it. And I just wanted to do it. It was like, something that I had to work with. And now it’s okay, that I can’t exactly run because honestly, I like other things better.

    Bill 36:29

    You seem like a very curious person. Is it curiosity that gets you thinking down these paths? And tangents? Or is it just a willingness to explore? What is the quality that you’re tapping into, to discover all these new things?

    Whitney 36:46

    I would say I was just raised from two beautiful people. And I don’t know, I just keep a really open mind, this whole experience has really offered me like an opportunity to just dive deep, you know, and explore and just don’t sweat the small stuff, you know, and just kind of explore options and ideas maybe that you didn’t think about before, or that you are opposed to or closed minded about before, like, maybe, you know, think about something new or try something new.

    Whitney 37:31

    And it’s liberated me. And in a way, I was always a very, I wasn’t like necessarily. But I did have perfectionism. I did have overachiever in my blood. And I still do a little bit, but it’s not about that. And that’s what this whole experience has taught me.

    Bill 37:53

    Who would have thought that these profound amazing lessons come from such adversity, but you’re not the only stroke survivor, to say that there’s so many people saying the same thing. And there’s a lot of stroke survivors who aren’t there yet. They’re still cranky about it and upset about it and still have a lot of other struggles.

    Finding happiness

    Bill 38:09

    And that’s perfectly fine. And sometimes it’s okay to not be happy with something that it’s left you you know, I mean, that’s perfectly fine, too. The thing is, is not to stay there. It’s just to acknowledge that you’re not happy with something and then go alright, well, I’m not happy with that, what can I be happy with and move towards finding what it is that you can be happy with.

    Bill 38:32

    And you’ve got so many things that you can be happy with, because you have so many other gifts that life has given you and so did I, and so do many stroke survivors, and one of the great questions that I asked myself was even in this most terrible time, like what’s good about this situation right now? And that one thing of what’s good that curiosity to find what might be good, even if it was just the flower has bloomed? That’s enough.

    Whitney 39:01

    If I can say one thing, gratitude has changed my life in a big beautiful way. And I was in rehab and somebody told me to start a gratitude journal and at the time, I really couldn’t hold a pen I couldn’t write one letter. And that so I looked at her like, she was crazy. You know, I said I’m grateful to be alive and that’s about it.

    Whitney 39:01

    Then I thought about it and I was really at that time just very determined to get my handwriting back. I was right-handed and I didn’t want to learn with my left I just want to do my right. And so I did it and it started out, you know, a letter and then I thought and then a word and then months later and sentence and then months later, a couple sentences.

    Whitney 39:52

    And the uniqueness the muscle memory as we talked about. It has coming back in my In my hand, and it’s like my handwriting has a little bit of its uniqueness back. And it’s still very hard and challenging and my wrists get tired easily. But it’s, it’s a beautiful thing. And in the meantime, my whole life changed.

    Whitney 40:16

    I see gratitude, everywhere I look every day, I wake up grateful for the day grateful that I’m awake. And it’s a beautiful thing. So just to have one good thing you know, even if you just cling to one thing, you know, flood yourself with gratitude and things shift.

    Bill 40:38

    They do, because it focuses the mind it gives creates neuroplasticity, new pathways in focusing on the positive rather than the negative. And the sneaky part about writing a gratitude journal is that it’s stimulating all sorts of parts of the brain, and connecting dots that were potentially lost in mist, and I’ve gone to sleep. So you think you’re writing a gratitude journal, just to focus on gratitude, but it’s doing all sorts of amazing things to heal your brain.

    Bill 41:08

    But we’re not really focusing on that we’re not aware of it’s just happening in the background, just this amazing stuff. So yeah, gratitude is a huge one. And a lot of people who know about gratitude can go into it quite easily. After a serious health issues, some people need to be reminded of the fact that somebody told you that it’s possible at the time for people to also take that the wrong way.

    Bill 41:37

    Like, if somebody came to me, at certain times in my life, when things were terrible, and I’m not talking about my stroke experience, and tell me to be gratitude, to have gratitude, I would have probably told them where to go, you know, seriously, I should be grateful about this terrible thing that just happened to me. That was, that was where I was then.

    Bill 42:01

    And, yeah, and when you’re stuck there, when you don’t understand where they’re coming from, it’s pretty easy to get stuck in that place of, I’m going to be shitty with you for even suggesting that I should be grateful about this situation, because I’m not going to be grateful about this situation. But then if you allow yourself to see beyond that, and the offense, and then you can move on.

    Whitney 42:30

    And that’s my thing, it’s really important just to, to allow yourself time to go through all the phases, because at first I was angry, I was sad. I was like, Why me? You know, and someone said to me one time, why not you? What makes you, you know, too good for this to happen or something.

    Whitney 42:50

    And I was like, I was so kind of taken back in the beginning. But it’s true. It’s like, why not you? And you know, just to go through that angry face and questioning why and what does this mean, and you know, it is really important to designate time to you know, really feel all those feelings during that time, because so many people have a tendency to say I shouldn’t be angry, I should be grateful, I shouldn’t be sad, I shouldn’t cry, these feelings aren’t valid, or, or whatever.

    Whitney 43:27

    And it’s not true. And in order to move through those feelings, you have to feel them and they’re uncomfortable, they are painful, they are scary, they give you anxiety. But the bravest thing I ever did was just sit with it for a little bit. And then it’s almost like it just kind of eats away. I mean, it doesn’t go away completely, but it does just change.

    Bill 43:55

    It becomes less impactful. And that’s the thing, you know, with emotional hurt when people have been hurt in a relationship or in any part of life, and it’s affected them emotionally. You see a lot of people after many, many years and decades, you know have not, for example, talking to a family member or a brother or a relative or whatever.

    Bill 44:16

    They get stuck on the fear of allowing themselves to experience the emotion in its full experience, right so that then they don’t realize that it’s on the other side of that where the healing happens, where you can then just let go of the hurt that was caused or the misunderstanding that occurred and getting people to go there can be scary, but it’s scarier to stay there because the regret happens later.

    Bill 44:48

    That’s where regret is. But if you allow yourself to go there and be brave at that time and overcome that fear of feeling the feeling that you are so desperately trying not to feel. Just do that. Then it just, it’s like a switch. Isn’t it just like flicks over and then it’s different.

    Whitney 45:10

    Yeah, if you can just stick with that, well, it’s so tough. That’s like the transformation. You know, like if you just stay with that. Like I say, I’m trying to get comfortable being uncomfortable. So you know, so that when something uncomfortable comes up and you don’t want to do it’s like, that’s the exact thing you should do it.

    Bill 45:33

    Yeah get comfortable being uncomfortable. Yeah, that’s a great thing to do. your Instagram is a really cool one, because it’s got a lot of the stuff on there that I like to read about. For people listening who might want to connect with Whitney, they can go to whittermac.

    (BDNF) Brain-Derived Neurotrophic Factor

    Bill 45:57

    I’ll have the links on the show notes. And the reason I said that it’s a really cool one is because some of your posts, they speak to me and one of them, particularly that speaks to me is the one where you’re introducing BDNF Brain-Derived Neurotrophic Factor and it’s this cartoon of this little dude, doing this with a, really colorful hat on and blue shorts, and he’s green.

    Bill 46:24

    And what people need to know about the BDNF is, that’s one of the most amazing things that we create, just by being active. Exercise creates a whole bunch of amazing impacts and positive things into the brain. And one of those things is the BDNF the Brain Derived Neurotrophic Factor, and you can support it in many different ways.

    Bill 46:46

    And here, the other ways, you can support it other than exercise is, you can support it by having good levels of vitamin D going out into the sun, green tea, social connection, omega 3 that comes from foods. And, isn’t that amazing that social connection supports healing the brain after stroke, and getting people better. I’m lost for words like reading that I know. But just reading that, that’s fascinating to me.

    Whitney 47:23

    They say it’s like Miracle Growth for the brain, you know, it’s really important.

    Bill 47:32

    Yeah, it’s amazing. How did you grow your social network? Is it roughly the same? Or does it include people now that have had a similar challenge to you?

    Whitney 47:45

    A few since I started working with the Local American Heart Association. And even the National American Heart Association, I’ve come across a few people that we have connected and shared stories and spoke to each other and done zoom calls together. And some of them you know, I was really big into yoga before.

    Whitney 48:12

    And some of them were yoga teachers now. And you know, a lot of people that I talked to just had this beautiful life experience that unraveled with the devastation of a stroke. And most people that I’ve connected with have a really positive outlook. I’m not a big fan of like positive vibes only, because it dismisses the negative, which is really important.

    Whitney 48:40

    And it’s telling you something about your life or yourself or something that needs to be addressed. But, but they’re very optimistic, I would say. And that’s really helped me a lot. Because in the beginning, especially when I was still paralyzed, I was really scared, I was scared of how I would do so much in my life.

    Bill 49:06

    Optimism is such an important tool. I mean, if you can’t be optimistic, you’re missing out on the possibility to find those unique things that come out of left field you know, those doors that open that you didn’t expect that then change your life like the gratitude journal.

    Whitney 49:24

    Yeah. I live so much more presently. Like I’m really grateful for the wake up call that I was given, because when you almost die, and as you know very well, and it like shakes something up in you and it makes you realize, wow we might not have as much time as we think we all pretend like we’re going to live to we’re 100 and it’s not the case and you don’t have to be fearful at all.

    Whitney 49:55

    But if you’re just aware of your time here, and you make the most event with social connections and other people and your work and your family and whatever is important to you, then it’s when it does come. It’s kind of okay. This big, fearful, scary thing.

    Bill 50:16

    I was raised in a family. That’s Christian. I suppose they’re religious, I would say, but I’m not really, really religious. But I do understand what people say when they talk about having faith. And was your faith tested? Did you feel that your faith was tested? Whether you’re religious or not? And has that shifted? Now?

    Whitney 50:45

    I would say that I’m very much of a spiritual person who believes definitely in a bigger energy or God, maybe that even though that was overplayed, but for me, that’s not the right word. But definitely don’t think that I’m really religious, but I do believe in higher power.

    Bill 51:14

    I suppose the question was, I know I tied it into religion, but it wasn’t about that it was about faith. And do you kind of practice a faith of some sort, and I’m not talking about a religious faith or faith of things will be right things will turn out all right, that type of thing.

    Whitney 51:30

    Well, I’m a big believer that life happens for you, not to you. So it’s all acceptance. Like I said, you know, it’s just things are gifts with really ugly wrapping paper, you know.

    Bill 51:50

    If you chose the gift based on the wrapping paper, you might not want it right?

    Whitney 52:00

    Right, exactly.

    Bill 52:03

    That is such an awesome analogy. I love that I’m gonna use that I’m gonna steal it.

    Whitney 52:07

    Yeah, use it.

    Bill 52:09

    You’ve got one of your most recent posts on Instagram, it says focus on the shape of your mind, rather than the shape of your body. What do you mean by that? How come that resonated with you?

    Meditation helps with stroke recovery


    Whitney 52:24
    Well, there’s a couple reasons. One is that my body is not the body that I had before, it’s not able to do so many things that I once did. And so you know, really, when I do focus on my mindset, and my mind, some how my body gets better, or more agile, or I can do more things, or, you know, the more meditation I’m really big on meditation, because I didn’t meditate prior to my stroke.

    Whitney 53:03

    And I wish that I would have, I found it because I couldn’t do anything, I couldn’t walk down my street and drive my car, go for a run, you know, I couldn’t do anything. And I was very, it was hard for me to sit still in the beginning. But I rather do meditation than just cry everyday, like I did for a few months.

    Whitney 53:29

    And so I found it. And it came to me about a year and a half ago or so. And I love meditation. And I think that’s another reason why I’ve developed the relationship that I have with myself, in addition to the photograph that I put on the bedside, because it just puts you in touch with your triggers and your personality and, life in general and how precious this time is on the planet.

    Whitney 53:58

    And so the more I meditate, the more my body responds. So it’s like, I’m more focused on my mindset, which in turn brings recovery to my body.

    Bill 54:13

    Yeah, mindset is really important because it can derail recovery, and it could make it harder than it has to be. Meditation is really awesome because you can do it just by sitting in your chair at any time of the day, you can do it for a minute that has positive beneficial effects. any longer than that, it’s just positive right through.

    Bill 54:36

    It is bringing together it starts to help combine the body and mind where we’ve experienced our body as separate entities because of the way that it’s spoken about. You know, when you have a headache you go to see somebody about your head when you have a problem with your heart.

    Bill 54:54

    You’re gonna say somebody about your heart and so on and medicine and the Western world has compartmentalised the body. And we’ve learned about it in the same way. So meditation starts to reunite everything and bring everything together. And I remember being in hospital trying to, and waiting for rehabilitation and to get back on my feet for the first time and start learning how to walk again.

    Bill 55:21

    And I had been practicing meditation before my surgery. And then after surgery, I was meditating, and watching myself walk again. Because I learned that neuroplasticity activates the same part of the brain, if you pretend that you’re doing something as it does, if you’re actually doing something.

    Bill 55:48

    So that time that one or two hours, a day that I spent imagining myself walk was doing the same positive things to my brain as if I was actually walking, and therefore I was able to double my rehabilitation time.

    Whitney 56:05

    I visualization is huge. Also, in my recovery. I visualized just for five minutes or less every single day, for a year of running on the beach, what it would feel like the sand, the smells, you know, everything. And then I did it one day, you know.

    Whitney 56:29

    And so for me, it’s just, I visualize, you know, I can’t really do certain movements with my foot, and ankle and different things. And I visualize all the time, because I read a study one time that showed if you visualize, you know, doing bicep curls for a couple of months.

    Whitney 56:57

    My daughter, I’m she’s like, pounding on the door. But anyway, I read that if you visualize that, they actually strengthened the muscle, and they never touched a weight. And so just powerful for me, like I visualize all the time, everything. That’s probably why athletes and CEOs and really professional people do it because it primes the brain, in addition, maybe to strengthening the muscle or something, but it does prime the brain to get ready for the activity. And like you said, the brain doesn’t know the difference between what’s you know, really happening and what you’re imagining,

    Bill 57:38

    Yeah, we can take a little bit of we can make it think that it’s doing something that it’s actually not, and then we can use that to our benefit. And that’s a really amazing thing. And one of the hardest things for me, one of the things that I feared a lot about was getting intimate with my wife again, because I had a bleed in my brain and it was there for a while I was there for about three years.

    Intimacy Issues caused by the stroke

    Bill 58:04

    So they kind of said to me, you’re going to have to take it easy on a lot of things that are strenuous. And that means you shouldn’t go to the gym, exercise, run any of that stuff. And then I asked the inevitable question, you know, like, what about intimacy? And I said, you know, off. Right, so getting it back was a bit of an issue a bit of a concern. Did you have any challenges around intimacy? Was it something that you guys were able to navigate quite well? Or was it a bit of a challenge?

    Whitney 58:16

    I would say that it was a challenge. Because of our relationship stressors, because of how stressful this was on a marriage on a young couple that just sent their vows, you know, in sickness or health like just a couple of years ago. And that’s exactly what it was.

    Whitney 58:57

    And it brought a lot of challenges into our marriage. So I think that played a role in it. I don’t know if it was really the surgery itself or the stroke itself, but maybe our connection at the time. Just was very, it was a stressful time. And it wasn’t as supportive as we are because of each other. He was going through his own stressful event. And then I his wife had a stroke. And it was it was a very stressful time. And I think that had a lot to do with it.

    Bill 59:39

    A lot of things coming together at once. And that’s interesting, because I’ve been spoken about that specifically. Not the intimacy part, the marriage part specifically with a lot of people in that very early marriage. 34 year old people doing the vow of in sickness and in health in death do us part.

    Bill 59:59

    I mean, you’re basically not really focusing on what that means. You’re focusing on all the amazing things that are going to happen? And that’s kind of funny that you say, because most people say it. And then, man, you’re dealing with all of that stuff that the vow is talking about right now.

    Whitney 1:00:16

    Yeah, it’s pretty wild really.

    Bill 1:00:24

    Wow. I really have enjoyed getting to know you over this last hour. I really appreciate your being so candid, and so open. I love what you’re all about. And I think it’s really important the story that you shared today, because it’s going to make a difference for other people that are listening.

    Bill 1:00:46

    What makes it possible for you to say, to the stranger from the other side of the planet, who sends an email and says, you know, can you be on my podcast? Like, what makes you able to go yeah, I want to do that I want to be a part of that I want to share.

    Whitney 1:01:10

    First of all, I’ve made sure you have like a page and that you weren’t a creeper or something. And I looked you up online and made sure that you know that that was okay.

    Whitney 1:01:23

    Because I get people commenting all the time that say weird stuff, and they don’t have any followers and posts and no website and I’m like, I’m not gonna say anything back to you.

    Bill 1:01:33

    I know them.

    Whitney 1:01:36

    I guess I just really want to help be another person that can raise awareness about stroke, because so many people in the stroke community know that it definitely happens to young, healthy people.

    Whitney 1:01:51

    But outside of the stroke community and outside of the medical field, it’s not common knowledge that a stroke can happen to a young, healthy person. And it’s really become important to me just to be an advocate and just raise awareness. And also to tell people that, you know, we all go through the unexpected.

    Whitney 1:02:14

    I mean, you if you can’t control what happens to you, like, you can control how you respond. And I just want to give inspiration to people that might be really having a hard time because when I was having a hard time, if I had somebody come to me and say some things that I know now, it would have been amazing.

    Whitney 1:02:39

    It would have meant a lot to me at the time. So I want to give that back to others. And I just always have loved helping people. So I feel like I’d like to keep sharing.

    Bill 1:02:51

    Beautiful. That’s a perfect way to end the podcast. Whitney, thank you so much for being on the podcast. I really appreciate it.

    Whitney 1:02:58

    Yes, thank you so much, Bill.

    Bill 1:03:01

    Thanks for listening to the recovery after stroke podcast. If you like this or any other episode, please hit the like button if you’re watching on social media. Give us a thumbs up if you’re watching on the YouTube channel and give the recovery aftershock podcast a five star review on your favorite podcast app.

    Bill 1:03:19

    Doing this will make the podcast more visible to other stroke survivors that are doing a tough right now. And it could help them feel inspired and feel better about the road ahead. Thanks for tuning in.

    Intro 1:03:35

    Discover how to heal your brain after stroke go to recoveryafterstroke.com.

    Intro 1:03:45

    Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals opinions and treatment protocols discussed during any podcasts or the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.

    Intro 1:04:02

    All content on this website at any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis.

    Intro 1:04:14

    The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice. The information is general and may not be suitable for your personal injuries, circumstances or health objectives.

    Intro 1:04:30

    Do not use our content as a standalone resource to diagnose treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional. Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitation program based on our content.

    Intro 1:04:46

    If you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional if you are experiencing a health emergency or things you might be called triple zero in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department.

    Intro 1:05:04

    Medical information changes constantly. While we aim to provide current quality information in our content, we did not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content. If you choose to rely on any information within our content, you do so solely at your own risk. We are careful with links we provide however, third-party links from our website are followed at your own risk and we are not responsible for any information you find there.

    The post Brainstem Cavernous Angioma – Whitney Spotts appeared first on Recovery After Stroke.

    1 hr 6 min
  • Showing Kindness Even If We Disagree – Helen Mitas

    Disagreements in 2020 have been on the rise, especially with the COVID crisis and world events that polarize communities everywhere. How can we be kind and still disagree?

    Socials:
    www.helenmitas.com/hypnofit                        
    www.instagram.com/helen_mitas_hypnofit_founder/

    Highlights:

    01:11 Introduction
    05:42 Dealing with our disagreements
    17:39 Taking conversations too personally
    23:37 Why so annoying?
    29:48 It’s not about being bad or good
    36:05 Using the opportunity to become a better person
    41:16 Where the disagreement began
    49:38 We all want the same thing
    54:49 Fear of uncertainty

    Transcription:

    Bill 0:00
    It’s just about me trying to express myself and have a conversation, which I miss the most at the moment I missed that more than anything because I can’t meet with people. And I can only have this conversation with my wife so many times because she’s amazing.

    Bill 0:15
    She’s probably sick of hearing me, you know, and she wants respite she doesn’t want to hear from me. Though kindness is one of my core values and for me to feel like I’m not being kind in a conversation really bothers me and concerns me.

    Bill 0:32
    And I know you’re kind, and I know, we, both have communities who genuinely are trying to be kind, because they wouldn’t be in our communities if they weren’t, now that doesn’t mean that your posts haven’t annoyed me the most. They have and I’m wondering why? Why is it that your post have annoyed me the most?

    Intro 0:59
    This is The Recovery After Stroke Podcast, with Bill Gasiamis, helping you navigate recovery after stroke.

    Introduction


    Bill 1:11
    Bill from recoveryafterstroke.com This is Episode 115. And today, I am a guest of longtime friend and hypnotherapist, Helen Mitas from Hypnofit. Helen first appeared on the recovery after stroke podcast in Episode 13, where we discussed ways that hypnotherapy might be able to help stroke survivors quit smoking.

    Bill 1:33
    In today’s conversation, we discuss something very topical, especially for people living in the state of Victoria, Australia, where we have been in COVID, lockdown in some way since March 2020.

    Bill 1:45
    And we have had a curfew imposed on 6 million people since August. And at the time of this recording, we are at September 22. Let’s just say that emotions are running high. And in this time, Helen and I have completely disagreed on almost everything.

    Bill 2:04
    And we learned that we have totally different views about the way the government is handling the lockdown. And this has played out on my personal Facebook page, where I make comments inviting conversation, and then get completely frustrated with the opposing view.

    Bill 2:21
    But I never become rude and personal. So when this happened again, I reached out to Helen to take the conversation away from the keyboard where things can get misconstrued and became curious about where we agree, and if there was a middle ground.

    Bill 2:38
    This is really an important conversation, especially with all the turbulence in the world right now. I hope our conversation will help you navigate these important yet challenging conversations.

    Bill 2:50
    Now before we get started, if you have ever wondered what else I can do to help you with stroke recovery, you should know that I have set up a few recovery after stroke support packages, where stroke survivors can come into a community while trying to get better on their own and get help from people who are already further along in the recovery timeline.

    Bill 3:11
    I too am out three times a stroke survivor and a brain surgery survivor. And I have built for you what I was missing when I was sent home from hospital in the hope that you don’t have to do stroke recovery as tough as I did.

    Bill 3:23
    Support packages give you access to a variety of tools 24 hours a day, seven days a week so that you can also work on other areas of stroke recovery, that you don’t get the chance to at physical therapy, or rehabilitation.

    Bill 3:38
    With tailored support available for less than $8.50 per week all recovery after stroke support packages, bring stroke recovery to you in the comfort of your own home, to feel comfortable about trying out one of the recovery after stroke support packages and see if it’s right for you.

    Bill 3:55
    You will get the first seven days free as well as a 30-day money-back guarantee no questions asked. As a bonus, you will get two face to face zoom support calls with myself to take your recovery to the next level. Go to recovery after stroke.com/support to sign up.

    Bill 4:12
    It won’t cost you anything for the first seven days. And you’ll get a full refund. If you are not happy after 30 days. You have nothing to lose and everything to gain. Now it’s on with the show.

    Helen 4:24
    I love your jazzy studio setup.

    Bill 4:28
    I’m trying to make it sound less like a garage and more like a professional recording.

    Helen 4:34
    It’s awesome. It looks good. I like what you put there on the walls and everything.

    Bill 4:39
    It was my little project one of my little projects on during lockdown it was to create some soundproofing I suppose or barriers or whatever and it’s made a massive difference to the way my podcasts sound. And I’m really loving it because the room feels different when you come in it’s quieter, it’s kind of like it’s a little bit of a cocoon. It feels really nice.

    Helen 5:00
    Awesome, you should see what I’ve got. I’ve got hanging a big doonah. And he just lives there now just lives right in front of me this big doonah because my video man taught me to do that.

    Helen 5:13
    And so it just actually, this doonah lives here in front of my desk, because it actually blocks out the sound coming from all around. Incredible we’re doing this. Yeah, honestly.

    Helen 5:23
    So before we continue, I’m just going to introduce what we’re doing. So whe didn’t plan this, first of all, this just came about I love things like that I just come about. So for those of you who are listening, Bill, and I have been friends for a long time.

    Dealing with our disagreements

    Helen 5:42
    And, you know, I’ve always respected Bill’s opinion. And I think that, you know, he has felt the same about me. And it’s interesting that during this time, and during this year 2020, when we’re thrown with so many with a different reality, we find ourselves disagreeing with people that we are surprised that we disagree with them.

    Helen 6:03
    Because, you know, prior to 2020, this is the thing right prior to 2020. Usually, we could predict the why people would think and the people that were in our circle pretty much thought the way we thought, but 2020 has put that into disarray. And people who you thought were on the same wavelength as you are not necessarily seeing things the same way as you.

    Helen 6:03
    And so this played out this morning, and it’s been playing out all year for Bill and I. So we’ve been thinking we’ve actually been seeing two different sides of the same coin all the way through the year. You know, Bill’s been with his viewpoint. And you know, he’s been pretty vocal.

    Helen 6:42
    And I’ve been with my viewpoint. And today play that, again, we’re by Bill put up a post on his personal page, about the way that he saw a situation unravelling in Victoria and I had, of course, the opposite view to that. And rather than, you know, saying what a lot of people do around the place, you know, Bill, you know, to your credit, how you’ve always been respectful.

    Helen 7:12
    And what Bill then did was he private messaged me directly after and said, You know, I see that we don’t see things eye to eye, but I also respect your opinion, how about we have a talk about it. And I thought, wow, I thought, Let’s have a talk about it online.

    Helen 7:32
    Because I think this is the important thing here, what Bill just did, which is acknowledging, I see things different, he sees things differently. But you know, when we’re actually talking, as opposed to behind a keyboard, where you can write things that are not so respectful.

    Helen 7:49
    You know, as soon as I saw you, it connected to our friendship, you know, as opposed to a post, you know, where it’s not personal. And as soon as I saw bill just then it connected to the fact that I really like Bill, I really respect Bill’s amazing story. And, you know, it doesn’t matter that we have opposing views, I’m still the same person like I was in 2019.

    Helen 8:16
    And Bill’s the same person that he was in 2019. We just happen to see things in a different way. And so Bill said, How about we just talk about it? And I said, Why don’t we talk about it publicly? And he goes, I’m up for it. And let’s see, we haven’t had any kind of talk before that in all sort of played out online in the public arena. So tell me, Bill, what inspired you to actually reach out?

    Bill 8:47
    I think every post that I made this year, I think he’s actually made reaching out to the people who I’m friends on Facebook with because I don’t just have friends. I don’t make friends with people on Facebook and in real life that are not respectful or who I wouldn’t have a beer with, you know what I mean?

    Bill 9:09
    Those types of people. So over the last, particularly the last two months, but before that, when I was posting about this COVID situation and how our government in Victoria specifically handled it, I was trying to create a conversation so that I can express myself because before I used to do that, when we caught up with people on the weekend or for a coffee during lunch, and what I realized in those conversations was that my passion and my anger and my frustration was the same as it is in private or at a pub or wherever.

    Bill 9:43
    It’s never rudeness it’s never any of that. It’s never me shutting somebody down. But I noticed that I couldn’t express myself correctly in typing because I don’t have that face to face thing where people actually can see that you’re not having a go at them and that you don’t want to smash him and you’re not being rude, you’re just talking and you’re being passionate.

    Bill 10:05
    So after months of trying to get my head around, how am I going to converse with people about this topic, I thought you’re the perfect candidate, because I know you’d be up for it as well talking offline, or in any other way. And I thought what I wanted to do was I wanted to speak to you because you have the most opposite view from me.

    Bill 10:30
    And I know that your view comes from a really lovely place like mine does. And that got me kind of weirded out, like goes in. I know, she’s really thinking about things in an amazing way. And she has the completely opposite view for me, and I have a similar thought process myself, I want the best for people.

    Bill 10:51
    But what I have realized is that you tend to be on the allaying my concerns, which at the time, I feel like I don’t want you to do, but I’m glad to do it. And I tend to be on that pointing out the stupidity in my eyes of what a government has or hasn’t done. So you’re kind of coming in trying to smooth things over. And I’m trying to go “Did you say what these idiots did?”

    Bill 11:15
    And I was like, I think I needed to have this conversation face to face so that you can do that to me in person, even though I disagree with those idiots. You could calm me down and allay my concerns and just get me breathing or something. I don’t know what you know, like, that’s kind of why I reached out.

    Helen 11:36
    I really love that. I really love that you did that. And it shows little character. You know, it really shows character, in that we were both disagreeing online about what our governments, you know, the latest action is. And he reached out and said, let’s talk about it.

    Helen 11:51
    And I think that, when you did that, I really thought it was important that I put this online, and I’m going to take this video, and I’m going to put this as a newsletter, I’m gonna send it to my database. Because I think this is a very important message. And the message is, I don’t have to convince Bill of anything, actually.

    Helen 12:09
    And bill doesn’t have to convince me of anything, because it’s his view. And who’s to say my view is right? Who’s to say his view is right? Who’s to say his view is wrong? Who’s to say my view is wrong? But when we get triggered, you know, because we are triggered, all of us are triggered, and especially this year, we’re triggered something is triggering us to respond in such a way, we want to prove the other person wrong. And we want to prove ourselves, right. But at the end of all this, what’s gonna matter is how we treat each other.

    Bill 12:40
    Yeah, I really hated the thought that perhaps how I was responding was making people feel uncomfortable. And some people did write in my posts, they wrote stuff, like, obviously, we disagree, and I will probably stop commenting on your post. And I was like, no, I don’t want you to stop commenting, because you disagree with me, I need to hear the opposite view, even though I don’t like it.

    Bill 13:04
    Because, believe it or not, I don’t think the sun shines out of my ass. I don’t think that I have all the answers. And I’m correct. I’m putting it out there so that maybe somebody can throw something my way that I can consider for a moment and go. I wonder if they have a point.

    Bill 13:19
    And I wonder if I bring that into my point of view, will that make it easier for me to get through this speed hump that I’ve come up to. And for me, that’s what they seem like, they seem like speed humps. And when I reach out in this way, by posting live, or posting on Facebook, it’s like, I’m looking for people to help me over the speed hump.

    Bill 13:39
    And, and I’m not happy about the speed hump being there, but maybe they’ll help me over it, which means I don’t want to discourage them from coming to help me. I just want to tell them that I’m at a speed hump and I’m struggling to get over it. And this is what I feel and think.

    Bill 13:56
    And hopefully, your response is going to make me feel or think differently. And I’m not getting mad at anyone who has a different viewpoint. Even though it might seem like that in writing because I don’t have the skills to clearly portray my fullest, deepest emotions and desires and feelings in writing.

    Helen 14:20
    Exactly. I mean, emojis help us. Thank God, you know, like, if it wasn’t for emojis this year, you know, like, I would be misunderstood everywhere. You know, thank God, you could do that (tongue out) like, I still like you kind of thing because if it wasn’t for that it would be even worse, but you know, you’re not typical Bill because most people are not putting their opinion so that somebody else can bring another opinion. Most people are putting their opinion so that they can feel supported in their opinion.

    Bill 14:54
    Yeah. I’ve got to say though, it does help when you feel supported because that means that you’re not completely crazy. There’s some other people that think like you. And that’s cool, right that people think like you as well. That’s also cool. But it’s definitely not enough for me.

    Bill 15:07
    Because if 20 of us are thinking in the way that I’m thinking, and we’re all frustrated to heck, well, I don’t see that being is completely good. I just see it as creating more frustration to beyond heck. So it’s kind of like, alright, how do we all relate to each other and then find another path forward?

    Bill 15:30
    Because when I get to that speed, hump, I feel stuck. And what I would rather feel is like there’s still a path forward, because there are infinite ways to get beyond an obstacle. And I’m only looking at one way. And I want to be reminded what might be another way?

    Helen 15:49
    Yeah, and of course, and we’re all making assumptions based on our own experience. So for instance, I’ll give you the back end story to you know, my reaction to your post was that, you know, I had a friend call me a few days ago, and she’s, you know, she started basically the same sort of stuff that you’ve been saying all about, you know, heavy handed, you know, the numbers are down, they’re still not doing and he just wants to control.

    Helen 16:11
    And I said, Chris, this is my friend, Chris. And I said to her, haven’t you even listened to one, you know, full briefing of the premieres given? Because I’ve listened to every day to the full briefing. It sounds like you haven’t, because you haven’t got the information you have?

    Helen 16:27
    She says, no, I haven’t, you know, and fair enough. She works, she’s still one of the ones that does go into an office. And so you know, and she’s got a child and all the rest of it. She says Helen, you’re the only one that has given me the opposite view. No one else has given me that view.

    Helen 16:44
    But I said to her, how many of your friends have actually listened to the briefing? And so then you put a post up today with the same sort of ilk? And so then I say, Have you ever listened to the briefing Bill up, you know, and that reaction is not really about Bill, it’s about the fact that I’ve just had a conversation with Chris, she’s just admitted, she’s never listened to a briefing, right?

    Helen 17:04
    And you may have, but what we’re doing is we are, as humans, what we do is we gather all the information that’s not even relevant to the moment and we bring it to the moment. So the information that I’ve got is the people I’m talking to, don’t even listen to the briefings.

    Helen 17:20
    And they come up with these conclusions based on media reports. And therefore you say something similar, and then I base my preconception on what you’re saying. And I’m putting you in that category of people that are not listening to briefings, and then you could probably think, well, in fact, I do listen to briefings.

    Taking conversations too personally

    Helen 17:39
    You’re just assuming I don’t. And that’s true. And this is what happens, right, is that we’re just assuming, based on not just the conversation happening at the time, but based on a whole experience of other conversations with other people. And then people feel personally attacked, because we’re making it personal.

    Helen 17:57
    And so you see it play out all over the world. And it’s hard, it’s really hard, not to make assumptions, not to want people just think the way you think, you know, you want people to see the way you see it, but that’s never gonna happen, it’s never gonna happen.

    Helen 18:17
    It’s impossible, because you’ve had, you know, 100 different conversations to me, you’ve seen different things that I’ve seen, you have a different experience than I’ve had, you know, it could be that, and I’m not saying this is the case at all. But it could be that you have a distrust of authority, because of things that have happened in your life, it could be that I have a complete trust in authority because of things that didn’t happen in my life.

    Helen 18:43
    And that they’ve come, you know, when I needed authority, they were there to back me up when you needed authority, they weren’t. And so we come together with this, you distrust authority. And therefore you draw this conclusion, I trust them, and therefore I back them.

    Helen 18:57
    And then it seems like we’re actually at loggerheads, when really, you know, I think the most important thing that I want the message to be about as hard as it is, because it is hard, it is hard navigating these times, especially, you know, people don’t know, how it actually feels like to be in the situation that we’re in, you know, and so it is hard.

    Helen 19:22
    But to be kind. To Be kind, irrespective of your beliefs. And I just think that by you reaching out to me today, when I publicly went against what you said, you know, on your post, so this is your page, and then you reach out to me and say, how about we just talk about it to me, it just like it’s you know, I’ve always respected you but now like, respect you through the roof, because it’s like that is character.

    Bill 19:57
    So your community is a community that helps people the hypnotherapists community. It’s amazing, right? I’ve interacted with a lot of people from your community, because I’m part of it. Because you’re my coach, once upon a time I came to you to be my coach, because you’ve done things that I wished I could do, and I wanted to learn how you did it so I could do it.

    Bill 20:19
    So, you know, Steve has come onto the posts and responded, and Steve and I completely disagree. But again, I hope I didn’t annoy or make him feel that I was personally attacking him because Steve and I have never met in person.

    Bill 20:32
    So I don’t really know how he communicates. And that’s really difficult to navigate is you don’t have an understanding of how face to face people communicate. But if he’s in your community, I’m assuming that he’s a good guy. And he is somebody that wouldn’t be in your community if he wasn’t the kind of people that is good.

    Bill 20:55
    You know what I mean? Like, because you guys are communities based around helping people overcome drama and challenges and problems and move on in their lives and expand and grow right? My community is stroke survivors. They are people who are looking for somebody to help them get through the hardest time in their lives.

    Bill 21:17
    And I wouldn’t have a community if my stroke survivors who follow me didn’t feel supported and feel comfortable, and feel like I wasn’t kind. But that gets all blurred when you’re sitting behind a keyboard, and trying to communicate to people like Steve, who hasn’t ever met me, and I’ve never met him.

    Bill 21:37
    And I was really concerned that I would be doing that. And I always try to at the end of my posts, finished by saying, Hey, guys, thanks for the chat. Sorry, if we disagreed, or hopefully, I didn’t annoy anybody by being too personal or anything like that.

    Intro 21:51
    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 now long will it take to recover? Will I actually recover? What things should I avoid in case I’ll make matters worse?

    Intro 22:08
    Doctors will explain things that obviously, you’ve never had a stroke before, you 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.

    Intro 22:31
    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.

    Bill 22:51
    It’s just about may try to express myself and have a conversation, which I miss the most at the moment. I missed that more than anything, because I can’t meet with people. And I can only have this conversation with my wife, so many times because she’s amazing.

    Bill 23:09
    She’s probably sick of hearing me, you know, and she wants respite. She doesn’t want to hear from me. Though kindness, is one of my core values. And for me to feel like I’m not being kind in a conversation really bothers me and concerns me. So I know your client. And I know, we both have communities who genuinely are trying to be kind because they wouldn’t be in our communities, if they weren’t.

    Why so annoying?

    Bill 23:37
    Now, that doesn’t mean that your posts haven’t annoyed me the most. They have, and it’s not. And I’m wondering why is it that your posts have annoyed me the most. And that is the lesson for me. It’s like, I know, Helen, I know how amazing she is. I know how kind she is, I know how super positive she is, I know what she does in the world, I know how helps people.

    Bill 24:00
    Why a posts from somebody that I value and respect so much so annoying? And that is where my lesson is. And I’ve been asking myself that for a couple of weeks now. And I don’t know that I’ve got the solution or the answer yet. But at some point, I think I’m going to come to terms with the learning that I get from that.

    Bill 24:20
    And I’ll be able to use that when I’m coaching stroke survivors, when I’m supporting my community, and when I’m putting things out there that other people are getting annoyed with. When I’m being kind, and I’m not being rude, but they’re responding in a negative way that’s going to make me better In my world you know?

    Helen 24:40
    Exactly. And what you just said then Bill is so like key, which is what you did. That is a strategy. So and that’s what I would teach you know, my people is you stepped outside yourself. And you looked at yourself and you went, why is this a trigger for me? Why is this a trigger for me?

    Helen 24:59
    What’s going on there, what? What is going on? Why is this a trigger? Why is this a trigger for me? And it’s exactly what I did. Because when I was feeling about a couple of months ago, I was feeling like I was judging people, like I could be very judgmental on their views.

    Helen 25:15
    And one of my core values, one of my highest core values is to be non judgmental. As a therapist, as a therapist, you know, if someone walks into a room, you know, if I’m judging them for whatever they’ve done, and I’ve seen clients who have done all types of abhorrent, which the community would deem is definitely abhorrent acts.

    Helen 25:37
    But if I see them in that lot, I can’t help them. So I don’t, I really, really don’t and I take the judgment away. And I pride myself in that. And then a couple of months ago, I saw myself judging. And, I was quite distressed at that, because I tried not to, but then I couldn’t help it.

    Helen 25:55
    And it’s almost like, then I started judging myself for judging. It’s like, what are you doing? Like, why are you behaving like this? Why are you saying those things, just because people disagree with you, of course, they’re going to disagree with you. So I had to then go outside myself and look at myself.

    Helen 26:10
    And by doing that, and having compassion to myself and saying, because I’m human, you know, as much as I’d like to believe that I’m be super, you know, light being, you know, I actually am human. And it’s okay to navigate during these extraordinary times, and to, but now that I’ve seen myself do it, and I don’t want to do that, I was able to step away from it.

    Bill 26:32
    It’s ugly isn’t it? When you’re judgmental, it’s ugly. And then, if you’re judging people and people are judging you, I mean, and it doesn’t feel good when you’re being judged. Well, man, you don’t want to be putting that out there to the person on the opposite side of the therapy, call it screen now or room or whatever.

    Bill 26:51
    And that is one of my biggest lessons is to pay attention to me, and why am I getting triggered? Why am I responding in this kind of way? And how can I not respond in that kind of way, because what it’s going to do is be better for me, in the long run, and in the short term, and it’s going to be better for that other person on the other side of the keyboard who is typing their response to me on Facebook.

    Bill 27:14
    And this is the only challenging part with these social medias is that very few people come offline and go, let’s get to the bottom of this, let’s work it out. Let’s understand it rather than stay in the negative cycle into the abyss, you know?

    Helen 27:34
    Exactly. And even worse, and what’s been happening is that people who have been close for a long time, even closer than us people who catch up on a regular basis, they all of a sudden, have had to disconnect and not talk to each other again, because it became so bad.

    Helen 27:51
    And that’s what this year has shown us, I think this year has shown us up in terms of what is really inside what is going on inside us and to see it and to be aware of it so that we can actually deal with it. So I think that all this is positive that we are becoming very aware of who we are.

    Bill 28:13
    I don’t disagree with you, because that I love what you said there about it’s showing us up. I mean, if ever there was a facade around somebody’s amazingness, it’s coming down now you have seen behind the curtain. And that wasn’t good for me when I kind of saw a little bit about that in me like at the beginning.

    Bill 28:40
    And I quickly addressed that so that it’s not a facade, this thing that people see on my podcast is not a facade, because imagine I’m going out to a community forever. And being this person and then the glitch in the matrix happens and all of a sudden this other Bill turns up, these people are gonna go, who are you? Like, why have we been listening to your crap for the last 110 episodes?

    Bill 29:09
    Why are we going to continue to listen to you all the good work that I’ve done since 2015 out the window. And it’s not about that it’s not who I truly am. But it is okay to experience that guy who I didn’t really like as well, because now I really know who I don’t like me to be, you know.

    Helen 29:30
    That we don’t say we don’t like a part of us. Because that is not healthy either. I think it’s important to acknowledge that that was something that we would never get in at the time and we did the best we could. But we don’t have to do that again. You know, we can learn, we can learn from that.

    It’s not about being bad or good


    Helen 29:48
    But that part of us is not bad. Because it’s not about being bad or good. It’s just about that’s the best we could do at the time, you know, with what we had and just to really be compassionate because we can’t be compassionate towards other people unless we are compassionate first towards ourselves. We have to be it’s okay. You know, Bill just reacted like that, because that’s what Bill was going through at the time. You know, he was feeling frustrated, and he voiced his opinion.

    Bill 30:17
    Yeah, absolutely. And, look, it’s, I’m lucky that my online community is full of cool people. Even Gabe, who commented in one of the posts said, Bill you’re lucky, you’re surrounded with amazing people in your friendship group. And he’s 100%. Right? Even Gabe and I disagreed on a number of things on a number of posts.

    Bill 30:39
    Now, one of the best things that I’ve done though, is delete the posts after I’ve put them up, because I have the conversation. And I kind of get it out of my system for a little bit, everyone gets to chime in and get a little bit of stuff out as well. And then the post goes away, because I don’t want to be reminded of that post in 12 months time when Facebook decides to remind me about it.

    Helen 31:00
    Exactly. And I say that to my therapist community a lot. But she is one of the things that you need to do is declutter your Facebook, just like you declutter your house, just like you want to get your bedroom clean, and your living area and clean, keep your Facebook clean.

    Helen 31:13
    So you know, get rid of stuff. So if you want to give an opinion about you know, Dan Andrews or whatever, do that, but delete it, you know, delete it after 24 hours. In the end, I’ll put a post up today about the same issue that, you know, we have two opposing views, one on your page one on my page, if you want to see what Bill’s view is go to Bill’s page, if you want to see the polar opposite, go to my page, and in 24 hours a month will be deleted for that exact reason not because I don’t believe in what I said. But because it’s like it doesn’t it’s past, the moment has passed, it doesn’t need to stay begin the day with new energy, you know.

    Bill 31:53
    It’s actually exactly what it is. It’s a reset. And, I think that if I was able to get together with my friends, in a pub, at a cafe, wherever and have that conversation, I wouldn’t need to have it online. On Facebook, it wasn’t something that I used to do. On Facebook, I never posted about anything that was along those lines, it was always about helping stroke survivors, etc. and sharing something amazing that happened in my life.

    Bill 32:16
    So the fact that I get to do that on Facebook is a blessing, it’s definitely a blessing. Because we do it, we have the conversation. And then we just draw a line in the sand and go that was then scrub it from the record and move on. And hopefully the people who come back to my Facebook feel okay to be able to have that conversation with me, because I achieved to them the same thing that I achieved for me, which was we had a chat about it, we expressed ourselves. And then we moved on because we still friends, we still love each other, and we value each other.

    Helen 32:50
    Exactly. And you know, it really is challenging. Not that God knows I’ve edited so many posts so that either message doesn’t come across like that. But not to be condescending to someone else’s opinion, it’s really easy to do that, because you’re so convinced of your truth.

    Helen 33:08
    So therefore, because you’re so convinced of your truth, you’re just as convinced as somebody else, you know, but it really is just, it’s okay, that’s my truth. It doesn’t have to be someone else’s truth. It doesn’t make them an idiot, if they believe something different.

    Helen 33:22
    It’s just, that they believe something different. Okay. And just to be caught into people more than ever, just like you would if, you know, people, you know, I gave this example of where I’m at, made a comment on someone else’s page. And people came in who didn’t know me, and actually were abusive towards me.

    Helen 33:45
    So were quite abusive. And then the person that knew me liked their comments. To me, I saw that the same analogy as if I went to that person’s party at her house, say, and some people came up to me and abusing me, because they didn’t agree with me, just because the hostess agrees with that person or not mean in terms of whose side she’s on.

    Helen 34:06
    She shouldn’t be patting that person in the back and saying, it’s okay for you to abuse my guest. You know, like, there’s certain behavior that as the owners of our Facebook pages, and what goes on on our Facebook pages that irrespective of who we agree with, that we should have a standard of respect that is occurring on that page. So you don’t it’s not okay, you know, for abuse to happen on your page.

    Bill 34:33
    Absolutely not. It’s not okay for abuse to happen anywhere. And especially when we don’t know, more than ever, we don’t know what’s happening for the other person, because we’re not in front of them. We can’t judge from their expressions from, you know, the stress levels in their face, you know, with their body.

    Bill 34:53
    We can’t see any of them so we can’t judge more than ever, what they’re going through and if we’re going through a tough time It’s likely that they’re going through a tough time. Because, you know, we’re all stuck in this Limbo of COVID together. And there’s no way that somebody is kicking back on the other side of Facebook going, Yeah, I’m loving this, this is amazing.

    Bill 35:17
    No one’s doing that everyone’s having their own struggle. And we should be aware of that more than ever, that we don’t know what the other person is going through right now in this time. And what we might be able to do by having a conversation is help them vent.

    Bill 35:30
    And if we can help them vent, like they’ve helped me vent, then I think that’s a great thing to add to this online world. And then we can just reset, move on, and then go back to life, when it happens, go back to seeing people in person, and picking up where you left off, hug, that embrace the things that are important to us that we can’t have right now that we value the most, I don’t want to piss off my friends, and then they don’t want to hug me in the real world. No chance.

    Using the opportunity to show kindness


    Helen 36:04
    But also, as well as that bill is apart from you know, and navigating through it, actually use this as an opportunity to become a better version, I feel that over the last month, you know, I might be wrong, I feel like I’ve changed already. I actually feel like I am a better version than I was three months ago, because I saw myself, you know, have those judgments.

    Helen 36:29
    I saw myself reacting a certain way. And now I’ve seen myself pull back and breathe. And that’s their opinion, I respect their opinion. they’re entitled to their opinion, and, you know, show compassion more than ever. So be able to give compassion and love to people you don’t agree with?

    Helen 36:47
    You know, I’ve seen myself do that. And I think that’s a better version, Helen. And we’re all got the opportunity now to do this. So we all have the opportunity now to be better versions of ourselves, because we can always be better versions.

    Bill 37:00
    Yeah. And we need to step up. I mean, if there’s ever been a time where we need to be better, it needs to be right now, because the world needs more better things than ever before right? And I don’t know if I’ve improved that dramatically in the last few months.

    Bill 37:15
    But definitely, it’s always my aim. My aim is always to be a better version of myself, so that I have a better experience. So that I can give more so that people around me have a better experience. And this is where I think I’m learning how to navigate this Facebook interaction, because I never really did anything other than like people’s posts and give them a thumbs up, up until now. And now it’s really this. It’s actually a conversation where before it was just, yeah, great photos, nice trip or whatever it was.

    Helen 37:48
    I would like to eat that too.

    Bill 37:50
    Whereas now it’s actually we actually tried to have the most serious conversation that we’ve ever tried to have before.

    Helen 37:59
    About everything, and this is the incredible time about 2020. Right? It’s not just about one thing, it’s not just about human rights. It’s not just about, you know, Black Lives Matter. It’s human rights. It’s you know, sexism, it’s children, it’s everything. So every kind of agenda is all playing out at the same time. It’s no one politics, who’s the best leader who’s the worst leader? You know, it’s all playing at the same time. And we all got different views.

    Bill 38:29
    Surprise, surprise, we’ve all got different views,

    Helen 38:34
    And you know, what did you really want to talk about today?

    Bill 38:39
    I think that’s what I wanted to talk about what we’ve spoken about. But I didn’t want to talk about the politics, because there’s no point in that. And I’m not interested in politics, per se. I’m not a political person, although it may appear, just through my posts that I have been, I’m not, I feel, my biggest issue is I feel like I’m being what’s the word?

    Bill 39:00
    Sometimes I feel like I’m being personally hard done by with decisions that appear to be inconsistent. And those inconsistency is really frustrating. And I just get frustrated, generally with inconsistencies in the way that people behave and react towards me, where it matters to me now.

    Bill 39:20
    And that’s because of the kind of work that I’ve done in the past and I’ve had a property maintenance business. And in our business, you can’t be inconsistent with the way that you apply yourself and get work done you need to be consistent so that your clients can feel like you’re delivering the right job, the right result every time so you can get paid every time so they can call you.

    Bill 39:41
    Also consistency is important to me because when I’m coaching people, I need to be consistently in a space where I am holding the space for them so that they can feel safe so that they can come alive, overcome their challenge, whatever it is.

    Bill 39:58
    So consistency is one of my values and when I appear to see it in public, by a public figure in the way that I apply a law or rule, and I’ve been doing, quote unquote, the right thing, then I feel like I’m personally getting singled out, for example, perhaps, that a certain group can behave this way and a certain group can’t behave this way.

    Bill 40:28
    And lately, I felt like I’ve been on the, I’m not allowed to behave this way group. And I feel like I’m getting punished for it. And, it happens in waves, right? So many days, I won’t post about it. But today, I posted about it, because it was kind of like God, here we go again, once again, I feel like I’m being singled out.

    Bill 40:50
    And why would that person single out all the people doing the right thing, and the people that are doing the wrong thing are getting a slap on the wrist. Now, your response makes sense to me. And the response that Steve had make sense and Gabe had make sense.

    Helen 41:03
    Just give a bit of context, anyone who’s listening, they don’t understand what we’re saying here. Because I think it is relevant. And it’s a perfect example of how two people can see things completely differently. And what you said there about your value also plays into that.

    Where the disagreement began

    Helen 41:16
    So, what actually happened here in Melbourne, was that we have strict rules at the moment in terms of what we can and can’t do. And if we break those rules, we will get fined and we have been getting fined. Now, what’s actually happened recently is that somebody four or five families have been visiting each other against the rules, though, that one person who was infected with COVID, has now gone to 40 people.

    Helen 41:40
    So 40 people from one person has now been infected, because they’ve been visiting each other. Now, even before the story broke out, I knew that the government would not fine these people, because for me, it would make no sense to fine them. Because you’re interviewing the family members, the first thing you’ve got to say is, tell me who you spoke to, I promise I won’t fine those people because we need to know who you spoke to.

    Helen 42:02
    We’ve got to contain this ASAP. So that 40 doesn’t become 400, so 400 doesn’t become 4000. Because that’s the most important agenda right now in the state of Victoria, because we’re nearly there. And what people instead were focusing on was the fact Well, it’s not fair, you know, that, if I did this, I’d be fined, so why aren’t they getting fined?

    Helen 42:23
    But to me, it’s always about the bigger picture, always look at things from a bigger picture. Now, what you said makes sense, because what you said is your value is consistency. Because of your role. As in building maintenance, it’s important for you to make sure that you treat every client the same, you can’t decide to treat that client different to that client.

    Helen 42:43
    So consistency is top of mind in terms of value, whereas the way I see things is, yes, I’m a therapist. Now, I used to be a project manager. And I used to manage large projects. in managing large projects. My role as a project manager was always about the overall project.

    Helen 43:01
    Sometimes we had to make decisions that seemed unfair. And some people as a consequence, were fall out of that decision. But at the end of the day, what I had to consider was the deliverable of the overall project, what is my intention with this project, I will do what it takes to achieve that.

    Helen 43:21
    Okay, as a project manager, now, what you get there is you will always get people that feel had done by feel that you do your best to be fair, but at the end of the day, you have a project to deliver. And so the way that I saw the state of Victoria is our most important deliverable at this very moment is not about fining a family 1600 dollars.

    Helen 43:46
    Our most important deliverable is to get to where we need to go to open up the state, you know, we have to open up the stake safely. And we have to open it up in a way that we do not go into lockdown again, because we do not want that none of us want that. So I would rather I know what people want, you know, things to happen earlier rather than later I’m the reverse.

    Helen 44:10
    I want him to be sure. I want him to make sure that we do not go into lockdown again. I’m always one who wants to do things properly and not half assed, you know, and I was one of the ones who I believe that the mask thing came in too late. So every time I saw a press conference, I would actually put bring in masks, bring in masks bring in masks, I could see how that impacted numbers overseas.

    Helen 44:34
    We got masks to late. So a lot of mistakes were made. I absolutely agree with that. But I would prefer to properly stay down longer, stay down longer and get this done. So that we don’t go down again because Melbourne can’t go down again. Right. We want to be open and we want to stay open.

    Helen 44:54
    You can see interstate they’re not even wearing masks overseas. They are you know You want to be in a place in Melbourne, where we’re not wearing masks, we want to be in a place where eventually you know that the numbers are so low and so contained, not not eradicated because they won’t be, you know, we’re not used Zealand, but they will be suppressed.

    Helen 45:15
    And so the premier, you know, I’ve made it a point that every time it’s the Premier’s briefing, I go for a walk during that time, so I can hear it. So I’m not wasting time. So I actually give him what, like the full hour and a half, two hours that he’s been talking every single day.

    Helen 45:33
    So this question that you’ve put up, it frustrated me, because for the last four days, the the reporters have been asking this question, what the same question. He’s giving the same answer. And it’s the same question and they still report it. They’re reporting it. Why? Because they want people to say, that’s not fair. We’re doing the right thing. So it frustrates me because I feel like people are quick to go onto social media and complain, but have they listened to any briefing in full?

    Bill 46:06
    Yeah, I agree with you in that, as a project manager, when you put it that way. Because, as a property maintenance guy, I manage projects too. And that project, the most important thing is to deliver the project on time on budget and the quality that the client expects, they can get paid the same thing that I said before, right and get more work, etc.

    Bill 46:25
    People do it safely the rest of it. So you do you put in place, things that are gonna rub people up the wrong way, as long as you get the result in the end, and everything went well, and no one was harmed. And everything’s amazing. Everyone makes a buck, that’s really the most important thing.

    Bill 46:42
    The other side of that is that side where I put myself, personally, when I’m listening to the premier speak, I’m putting myself personally in that position of man, if that was me, you would’ve fined me. And that’s kind of what throws it out of whack. For me, that’s kind of like what gets me derailed.

    Bill 47:07
    And if I’m thinking about me, if it’s me that’s listening to him, rather than the project manager listening to him. Then I’m taking it personally, the project management in me is going yeah, I get it. And that’s why I also got your perspective on it. And that’s why I wanted to talk about it, because part of what you’re saying made proper sense to me.

    Bill 47:30
    And the other part was like, now this guy is still having a go at me, he’s still attacking me, it’s all about me. And I’ve done the right thing. And I’m not working. And I’m this and I’m that and I know people, and so on and so on. But there’s nothing worse than me, in my mind imagining us being in lockdown for another month or two.

    Bill 47:49
    And I think one of my issues with our premier particular is the way that he speaks to me reminds me of one of my teachers who I disliked way back whenever. So I kind of get that that comes into the picture. So I’m constantly aware of why he irritates me, amongst other things, and amongst the fact that I disagree with some of those things.

    Bill 48:11
    But then I also had an experience on the weekend, where I was at South Melbourne for work for a legitimate work purpose. So it was on a construction site where work was allowed. And I was the only one there. And there was a guy sitting outside. He was obviously unwell. And he was not wearing a mask, but he was sitting alone and he was on his own.

    Bill 48:33
    And he got arrested by six police officers. They did, it took six people came to surround this guy to take him away. And it’s kind of like, before all of this stuff, that guy was just the guy sitting on a couch on a bench before. Now he’s public enemy number one. And I feel that that’s unfair as well.

    Bill 48:58
    So you’re exactly right in what you said, My experiences and my background is informing my decision right now like yours are. And I know that I think I’ve become smarter in my older years in that knowing that I know that there’s not only one way for the world to exist and it’s definitely not the way that it exists in my head only.

    Bill 49:25
    And that’s why the most important thing for me is being able to get together and have the conversation and hear your point of view so I can find where I agree with you because I agree with you in so many places.

    We all want the same thing


    Helen 49:38
    We all want the same thing. You know, my whole view is do it properly. So we don’t do this again. We don’t want to do this again. We don’t want to go into lockdown again. Let’s get this done properly. So no more lockdowns and you know what you said about the police, you know, probably not from the other point of view.

    Helen 49:56
    We’ve got one of our clients and we still see clients, we see them online, we see them via zoom like this. And one of our clients is a police officer. And she was one of the ladies who was on the, you know, at the, charlotte remembrance during one of the protests.

    Helen 50:12
    Now, she had to stand there for eight hours with full gear, you know, like, very in an uncomfortable way. And she was abused the whole day. And then she comes home. And then her husband’s complaining about the state of Victoria and, you know, the premier, and what he’s done.

    Helen 50:30
    And, you know, you can see, so my heart goes out to yes. Am I saying that all police officers do the right thing? Of course not. But that’s you find that in every profession, but now they’re under the microscope like never before, they can’t do anything without a camera. Imagine this Bill, everything you do, someone will be recording it, someone will say you’re wrong in doing what you’re doing. Someone will post it and put it out of context. I’m not saying they’re all out of context. what I’m saying is, you can bet that in some instances, it will be.

    Bill 51:06
    I feel for that police officer. And I also felt for that guy, you know, that got surrounded by six police officers, and he was just sitting there, he wasn’t doing anything. And it was just, this place that we’ve got to is, it seems like what you said, everything is polarizing. It’s no longer just the bloke sitting there. It’s a bloke doing the worst thing in the world.

    Bill 51:30
    I mean, he has moved to that very, very rapidly. And we haven’t had time to adjust to what does it mean to be sitting on a chair, in public without a mask on now, three minutes ago, it wasn’t a problem. So when I kind of go through all those things, like you’re right, it’s, all got to do with my view of the world, which is generally positive and, and generally about making things better.

    Bill 52:01
    And then it’s also got to do with how I’m feeling. And it’s also got to do with what I saw, and how I dealt with that. And then it’s also got to do with who responds to me when I say it, when I say something, if Helen had a go at me. And I felt threatened, I would definitely go, you know, bite back if the conversation was able to be framed in a way and I hopefully I’ve done this now by now I’ve framed my conversation so that people know, they can comment on my posts.

    Helen 52:35
    Yeah. And it’d be good if you actually share this onto your page as well.

    Bill 52:38
    Yeah, I will hundred percent

    Helen 52:39
    To actually bring it to, you know, conclusion, that it’s okay. It’s okay for us. And I love our conversation today. Because what it’s showing up is all the reasons as to why we think differently. You know, you said Dan reminded you of an ex teacher, but the thing is, because of all these things happening at the subconscious level, we’re not aware of them.

    Helen 52:59
    We know we have this belief, and this is a truth. But we don’t know why. You know, but you stood back and gone why am I so triggered? Oh, he reminds me of my teacher hated my teacher. You know, I’m all about consistency, the building trade, so you’re you’re actually all your experience and everything that you know, is your truth, forms an opinion, that is very different, in my opinion, because my experience is completely different.

    Bill 53:29
    Yeah. And I’m curious kind of guy. That’s why I go, I never speak to him about this. I don’t want to talk about it on Facebook. I want to speak to her because I’m curious. How did she get to that point? How did she come to that version of events? Can collusion response reaction?

    Bill 53:45
    And how come I’m not there? And am I okay, with not being there? Am I okay with where I am? Do I want to meet in the middle somewhere? Like what do I want to do about that now that I know. And it helps to inform how I’m going to then behave in the future.

    Bill 54:01
    And I just reminded myself that what I think I’m going to do from now on is frame my posts, so that I can say I’m, this is my feeling right now. I’m inviting a conversation and at the end of this in 24 hours, it’s going to be deleted, I want to have a conversation. I don’t want to attack you for your beliefs, please respond. That’s going to make it much much better for me because then I won’t feel like people think that I’m having a go because I don’t want that I don’t want people to feel like I’m having a go.

    Helen 54:30
    And guess to me also it’s about, well what truth serves me. So what truth actually serves me to feel good and to feel safe. And I think that’s important too because a lot of people are buying into there’s a lot of fear going on around now in terms of different fear paradigms.

    Fear of uncertainty


    Helen 54:49
    And so why buy into that fear because to me, that’s the crux of my work in terms of anxiety. Okay, that’s the crux of it is imagining something going wrong. So why buy into this fudgy story, you know, it hasn’t happened yet. Okay, it might happen. But it hasn’t happened yet. And lots of things might happen. But do we need to buy into that as our present moment reality, we don’t.

    Helen 55:17
    I think that this has been a really, really fruitful discussion, because different people have had two different opinions on the way that 2020 has come out. But really, both of our intentions are good. Yes. Okay. I want what’s best for the world, you want what’s best for the world? We just have different opinions. And most of the time that is the situation for the human rights most of time, not all the time. But most the time, people mean, well.

    Bill 55:47
    Yes, absolutely. I think that’s where it comes from more than anything is, there is an I dare say, like, even the protesters, they mean, well, underneath. They’re turning up and protesting in a lockdown, which I disagree with. I think that what they’re doing is they’re intending for something good to come from that whatever, in their worldview is good.

    Bill 56:11
    And, and I appreciate them for that. I don’t appreciate them being out in protest during a lockdown. I understand why they’re doing it. But I wouldn’t be there. I’m not going there. I won’t be supporting their their cause in that way. Because it’s the wrong thing to do during a lockdown.

    Bill 56:35
    So it’s been an amazing conversation I really thank you for firstly, chatting to me, but I know you chat to people all the time, and you chat to me all the time. So it’s not what I’m thanking you for, I’m thanking you for really taking a leadership position and going, you know what, let’s put it out there. And let’s help other people understand and to navigate this complex conversation that we’re all having behind the keyboard.

    Bill 57:02
    I needed it, because I needed to understand it. So I really appreciate that you’ve done that. And I think it’s going to make a massive difference to the people in the hypnotherapy community and in the stroke community, because I’m going to post it to my stroke podcast as well. And I think we’ve made a small difference for the good, right now. I think we really have and that’s gonna pay dividends for them.

    Helen 57:27
    Absolutely. And I want to thank you for reaching out respectfully, and in love, really, which is what you did. And you’re the one who reached out to me. So I really thank you for that. All I did was respond. So you’re welcome. Thank you. Okay, so thanks, everybody.

    Helen 57:45
    And just to finalize that, at the end of the day, let’s just get away from right and wrong. Let’s just move away from it. It’s your truth. But you don’t have to prove someone else wrong so that your truth can be right. And we can still be respectful to each other. We can still you can see how this one event that played out in Melbourne, just the last few days one little event and get there’s so many events happening in the world right now.

    Helen 58:14
    And we both saw it so different because of who we are as people, not because one of us is smarter and one of us is, you know, not as smart. But because we just have different life experiences. And we see it different because we’re different people. So that’s all it is. Awesome. Thank you Bill for saying yes to these. Thank you so much.

    Bill 58:36
    Thanks, Helen. Thanks for listening to this episode. If you like this or any other of the recovery after stroke podcast episodes, hit the like button if you’re watching on social media. Give us a thumbs up if you’re watching on the YouTube channel and give the recovery after stroke podcast a five star review on your favorite podcast app. Doing that we’ll make the podcast more visible to other stroke survivors that are doing a tough right now and it could help them feel inspired and feel better about the road ahead. Thanks for tuning in.

    Intro 59:14
    Discover how to heal your brain after stroke go to recoveryafterstroke.com

    Intro 59:24
    Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals opinions and treatment protocols discussed during any podcast are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.

    Intro 59:41
    All content on this website at any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis.

    Intro 59:54
    The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice the information is general and may not be suitable for your personal injuries, circumstances or health objectives.

    Intro 1:00:09
    Do not use our content as a standalone resource to diagnose, treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitation program based on our content.

    Intro 1:00:25
    If you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional if you are experiencing a health emergency or think you might be called triple zero if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department.

    Intro 1:00:43
    Medical information changes constantly. While we aim to provide current quality information in our content. We did not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content. If you choose to rely on any information within our content, you do so solely at your own risk. We are careful with links we provide however, third-party links from our website or follow that your own risk and we are not responsible for any information you find there.

    The post Showing Kindness Even If We Disagree – Helen Mitas appeared first on Recovery After Stroke.

    1 hr 2 min
  • Vertebral Artery Dissection & recovery – Amy Wells

    A vertebral artery dissection is not what you’d expect at 35 years young. In this interview, Amy Wells talks candidly about her stroke and how life has changed for the better in the last 12 months

    Socials: www.instagram.com/aimzwells/

    Highlight:

    00:52 Introduction

    03:45 Life before the stroke
    09:54 Vertebral Artery Dissection
    12:20 Fibromuscular Dysplasia
    16:30 Taking stroke recovery day by day
    21:56 Stroke recovery expectations
    26:00 Post-stroke realization
    39:22 Resting helps heal the brain after a stroke
    47:00 Physical limitations during recovery
    54:42 Uncertainty
    1:01:15 Turning corners
    1:09:50 Better after stroke
    1:16:33 Be kind to yourself

    Transcription:

    Amy Wells 0:01

    I’m in, the hospital had a bit of a tear in my artery. They’re saying I’ll be a bit slow for a few days, but you know, I should be back at it pretty soon. I guess it’s a blessing to think to be like that, at that point in time.

    Amy Wells 0:16

    You don’t want to know what’s necessarily ahead and what challenges you’re going to run into. And you know, where that would be awful to sit in a hospital bed and be like, okay, you’re going to come up against this, this, this, this and this, and the next 12 months you’d have a meltdown so that ignorance is bliss is probably a good place to be and you just have to take it day by day.

    Intro 0:40

    This is the Recovery After Stroke podcast. with Bill Gasiamis, helping you navigate recovery after a stroke.

    Introduction


    Bill 0:52
    Bill from recoveryafterstroke.com This is Episode 114. And my guest today is Amy Wells. At 35 Amy experienced an ischemic stroke caused by vertebral artery dissection. Before the stroke, almost every waking hour of Amy’s life was scheduled and jam-packed with things that needed to be done, and events to participate in.

    Bill 1:16

    In our chat, we talked about what it’s like for her and the family almost a year post-stroke, and how life has changed for the better. Now before we get started, if a stroke has made you feel isolated and lacking purpose, you’re not alone.

    Bill 1:30

    If you’re fed up with the lack of progress during your stroke recovery, I want you to know that there is help available. Most stroke survivors have been where you are now and you should know that it is possible to get to the other side with a little support.

    Bill 1:45

    For years now, I’ve been helping stroke survivors beat fatigue, reduce anxiety, and get their confidence back from a stroke. As someone who considers themselves fully healed after three brain hemorrhages and brain surgery, I will spend time with you, help you get clarity, on what the first thing is that you need to do to help you get past the roadblocks that are stopping you from getting back to your life before stroke.

    Bill 2:08

    When you sign up for one of the recovery after stroke support packages, you will get help from someone who was where you are now and has turned the corner to being healthy again.

    Bill 2:18

    There are different levels of support with packages offering private one on one coaching with myself. instant access to online training materials, access to courses, monthly training, and challenges made by stroke survivors for stroke survivors.

    Bill 2:32

    All training is transcribed to PDF for people that prefer to read and take notes or highlight important bits for reviewing at a later time. You can access the training area 24 hours a day, seven days a week, and complete training at your own pace without needing to leave the comfort of your own home.

    Bill 2:49

    People that have already taken action and done what you are still thinking of doing have described recovery after stroke coaching as leaving them feeling much more positive about themselves.

    Bill 2:59

    And this has a clearer understanding of what they can do to take responsibility for their own recovery. If you have tried another program and is still feeling the same or not much better off than when you were when you started, then you might want to consider a more tailored approach where support is designed specifically for you.

    Bill 3:16

    All support packages are free for the first seven days so you can see if you have chosen the right solution for you. To find out more simply go to recoveryafterstroke.com or send an email to [email protected] I answer all my emails personally. And now it’s on the show.

    Bill 3:35

    Amy Wells, welcome to the podcast.

    Amy Wells 3:37

    Thanks for having me, Bill.

    Bill 3:39

    It’s a pleasure having you here. Tell me a little bit about what happened to you.

    Life before the stroke

    Amy Wells 3:45

    Okay, on October 2019 life was babbling along as normal. Normal probably is a bit questionable now. I was you know, trying to do it all thought I was invincible. I had a job, which was quite stressful but demanding. I have two young children who I like to over-commit to extracurricular activities.

    Amy Wells 4:15

    I like to then take on their extracurricular activities. I’m not good at saying no like to jam-pack, the days and the weekends. I also exercise full-on pretty much every morning, every second morning of the week 6 am before everybody woke up, and I socialized a lot.

    Amy Wells 4:37

    So that’s how I thought life was supposed to be until I had the shock of my life. I had a great day at the races on a Saturday last October and went to work that following Monday and just felt a bit off during the day. I thought maybe one of the kids might have passed on a virus and I was coming down with a bit of a cold or something.

    Amy Wells 5:07

    As the day went on, I just sort of, you know, had a bit of a sore neck. And, you know, I couldn’t really look over my left shoulder, I was like what is this? Must have been gone too hard in my workout last night.

    Amy Wells 5:20

    Anyway, it was about three o’clock in the afternoon, and I’d walked out of the office with one of my colleagues, and we were walking back in with cups of tea. I looked at my feet, and they sort of went blurry.

    Amy Wells 5:32

    And then I looked up and the room did a spin. And I felt Oh, that was a bit strange. So I kept on walking and as I sat down at the office desk, I felt my left ear being pulled towards the ground, almost like a force. Something I’ve never experienced before in my life.

    Bill 5:52

    Like physically pulled.

    Amy Wells 5:55

    Like someone was pulling a string sort of out of my ear towards the ground, my whole left side. And I tried to sit up and I was able to sort of fight it. And I said to the guy in the office with me, I don’t feel so good.

    Amy Wells 6:11

    And you know, just getting a little bit sick or I don’t know about this spinning and this force, and I said, I’ll just lay down on the floor and put my feet up on a chair. This guy must have thought I was a bit crazy, but no, that didn’t seem to fix the problem either.

    Amy Wells 6:29

    And then half an hour later, I said, I might just go home, so my colleague drove my car, drove me home in my car, and I got home and basically went to bed, my husband fed the kids and I think I must have fallen asleep because about nine o’clock pm, I woke up and tried to lift my head off the pillow, and it was that same force that didn’t want to come off the pillow.

    Amy Wells 6:29

    And then I sort of opened my eyes and I felt like I was on a roller coaster. So imagine doing like the loop at a theme park. I thought oh yeah, this dizziness is back. And when I did get home from work, I was self-diagnosing on Google, okay, dizziness, head spinning, what does this mean?

    Amy Wells 7:18

    And obviously, that’s not a good idea at the best of times. So yeah, I sort of caught out to my husband. And luckily the kids were in bed and I said, yeah, I’m not good. I think it’s hospital time. I think something’s wrong here.

    Amy Wells 7:32

    And he said, Okay, get out of bed and call your mom and get in the car. I said I don’t think I can walk. And then I started becoming nauseous. And luckily, my mom lives around the block just around the block.

    Amy Wells 7:45

    So she’d started walking over. And my husband got me a bucket and I sort of started growing up. And I said, Yeah, I think it’s an ambulance. I think, you know, I could hardly speak and, but we knew that we started to look a bit more serious than just a virus or food poisoning from the races on the weekend.

    Amy Wells 8:05

    Yep, so an ambulance took me into the a&e. I spent the night you know, in a very bright emergency department laying on a bed, throwing up anything I had to throw up and my husband sitting on his chair and I remember if I had my eyes open and it looked like he was coming off the wall, so it looked like he was turned 90 degrees.

    Amy Wells 8:28

    But if I had my eyes closed, it was like bright yellow strobing like hallucinations, memories I couldn’t recall and couldn’t tell you about now because I didn’t even know I had them in my mind. So it’s obviously that subconscious. So really bizarre experience, which sort of didn’t let up till about eight o’clock the next morning.

    Amy Wells 8:52

    Funny enough, I could hear everything everyone was saying I was very much with it and even my mind wasn’t good hear exactly what the doctors were saying I could hear the cleaners talking I could hear what was going on in that emergency department and when they were talking about me I heard certain words thrown around like meningitis.

    Amy Wells 9:15

    So you know she’s got vertigo and should be going home at nine o’clock in the morning me thinking to myself there’s no way I can go home feeling like this. Yep, so the next morning, the physician came up and said, we’re going to do two scans a CT and MRI.

    Amy Wells 9:34

    So they got me to complete those and they were interesting because every time I moved my neck even slightly I threw up. So yeah, just looking back on that what an awful experience. And also embarrassed and I can’t move my neck without throwing up these four nurses that had to get me in position.

    Vertebral Artery Dissection

    Amy Wells 9:54

    But yeah, once the MRI and the CT were done, they were able to conclude that I had a vertebral artery dissection on the right side of my neck. And following that, after a few days in the hospital, we did a die angiogram of my renal arteries and also of my brain.

    Amy Wells 10:22

    And they sort of thought I had a condition called FMD, which I think that inside of your arteries, looks like a spring of pills. So it can look a little bit rougher than it’s supposed to I guess that’s how I interpret it.

    Amy Wells 10:38

    And that condition perhaps was responsible for this more tear that formed and then the blood clot moved around to the tear and then broke off. So the stroke itself was in the cerebellum.

    Amy Wells 10:56

    So as the blood clotted around the tear broke off, traveled up landed on my cerebellum. So essentially, that’s what happened. Nine days I think in the hospital. I didn’t actually hear the word stroke for, I think about three days. You know like these doctors are talking, in their language they talk in and I remember the neurologist came in on a particular morning, my mom was in the room, and he came in he is bouncing around and he’s saying, oh, yep, so yeah, these strokes are, you know, not so bad.

    Amy Wells 11:36

    You’ll be back to work. You’ll be back doing what you were doing before like he seems very, very positive. And I just said to him, hang on did you just say stroke? He said, yeah, small stroke on your cerebellum.

    Amy Wells 11:48

    I was sort of winded up back a bit. Hang on, hang on. I thought we were talking about a dissection. What’s the dissection so to get it really spelled out at that basic level, I guess didn’t really happen until I sort of got wind of what was going on, and yeah a bit of a challenge because then when you hear the word stroke, that sort of alarm bells.

    Bill 12:10

    I’m too young to have a stroke.

    Amy Wells 12:12

    Well, yeah, I just thought I had to be at work that day. I was like a stroke. How did this happen?

    Fibromuscular Dysplasia

    Bill 12:20

    That condition you mentioned FMD fibromuscular dysplasia? And when you look at the images, the images it does look like the blood vessels look like a string of pills that have been put together and what it seems to do is therefore create the incorrect blood flow.

    Bill 12:46

    And because of the different places the Blood got to go to flow instead of flowing straight across, bits get stuck on the inside of the blood vessel and then slightly they just collect them together and together bits of blood.

    Bill 13:01

    And then when they get big enough, they just let go. And then they just move. So that seems to be what it looks like that might have happened then it’s similar to what happens to people who have a hole in the heart.

    Bill 13:12

    And then the heart pumps the blood as per normal, but because of that little hole, the blood flow changes and the direction of it changes and then it gets stuck in a little bit of spot, and then it just increases in size and then it lets go.

    Bill 13:27

    And the first time they realize they had a hole in the heart was when they end up in the hospital and they’ve been told the same thing that you were told. But yeah, doctors. They’re so good at what they do in order to be good at that. I think they’ve got to be bad at communication or something because most of them can’t communicate if they like.

    Amy Wells 13:50

    Yes, or they’re just on a different level. Aren’t they? And if it’s not a crisis, which they obviously thought, you know, the crisis was over. You’re okay, now it sort of gets downplayed.

    Bill 14:06

    So you’re in hospital and then you’re thinking you’re going to go to work because that was my whole routine. That was why I didn’t go to the hospital for seven days. Because I had all these jobs to do. That’s why I argued with my chiropractor who told me to go to the hospital with my wife, with everybody.

    Bill 14:22

    So then, the next day I rang one of my clients and I said to him, listen, I’m in the hospital, and they reckon that I’ve had a bleed in the brain or something and I can’t come to work today.

    Bill 14:34

    I know we’ve got to do this job. And I started balling my eyes out to my client thinking the world’s gonna come to an end and fair enough right? Did you end up going to work like what happened that next phase how did you get your head around “I’m actually not going to be going to work today”?

    Amy Wells 14:54

    Yeah, I think I was a bit delirious, to be honest. Um, ah, the first thing I said to the irreligious was when will I be back at work? Work was my identity. You know, I’m a finance manager of a large hospital. And that’s all I know is finance, accounting, and deadlines.

    Amy Wells 15:17

    You worked on a monthly cycle. So everything’s so structured. You’ve got deadlines throughout the month and people that need certain reports and forecasts each week and what do I do my stroke happened on a Monday night so on Tuesday afternoons, we had a weekly video call with all the different hospitals in the state.

    Amy Wells 15:36

    And I was thinking well, I’m probably not going to do that from the hospital bed at three o’clock today. So I had my mom call my boss and explain that you know, there was no word stroke at that point. It was Amy in the hospital with the symptoms etc.

    Amy Wells 15:54

    And finally, because my bosses are all ex-nurses or ex-medical professionals, You know they have known ahead of time I guess what is ahead of me? And you know, I’m still a little bit delirious too and a little bit I’m invincible.

    Amy Wells16:13

    You know, this isn’t that big a deal. Things will go back to normal. And I guess, resistance to accept. I’m much better at it now but yes straightaway I look at text messages that I sent people during that hospital stay.

    Taking stroke recovery day by day


    Amy Wells 16:30
    I was doing a cleanout last week and I found some text messages from October. And yeah, it was like gee I’m in, the hospital and had a bit of a tear in an artery. They’re saying I’ll be a bit slow for a few days, but you know, I should be back at it pretty soon. I guess it’s a blessing to think to be like that, at that point in time.

    Amy Wells 16:51

    You don’t want to know what’s necessarily ahead and what challenges you’re gonna run into and you know, that would be awful to sit in a hospital bed and be like, okay, you’re going to come up against this, this, this, this and this and the next 12 months you’d have a meltdown. So that ignorance is bliss is probably a good place to be, and you just have to take it day by day.

    Intro 17:13

    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 now long will it take to recover? Will I actually recover? What things should I avoid In case I’ll make matters worse?

    Intro 17:30

    Doctors will explain things that obviously, you’ve never had a stroke before. You 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 recovery after stroke.com where you can download a guide that will help you.

    Intro 17:52

    It’s called seven questions to ask your doctor about your stroke. These seven questions are the ones Bill wished he’d asked when he was there. recovering from a stroke, they’ll not only help you better understand your condition, but they’ll also help you take a more active role in your recovery. head to the website now, recoveryafterstroke.com and download the guide. It’s free.

    Bill 18:16

    I agree with you, I was probably oblivious to everything that happened for around six weeks. And then it happened again to me because the issue wasn’t rectified immediately, and it couldn’t be rectified for turned out up to almost three years.

    Bill 18:31

    But yeah, my identity was work. Running my business, my identity was telling myself that I needed to be doing that seven days a week, 12 hours to 16 hours a day, you know, from waking up in the morning being at the job to coming home and doing the quotes and then doing the paperwork and then doing the emails and then doing all that junk.

    Bill 18:55

    That my identity was I was going to be that guy. That’s the only thing I knew a dad yeah, sure that kind of stuff, but there was nothing else. Take that away. And then it’s like, what I’m a guy in a hospital? Like I don’t know what that means.

    Bill 19:12

    And it’s one of the things that helped me. Eight years down the track go, okay, when somebody asks me, what do you do for a living? I’m like, I can’t answer that question anymore. Because I don’t say that I’m this or I’m that what I talk about is the things that I do on a daily basis. Some days I do this, and other days I do that.

    Bill 19:32

    And the things that I have, and I involve myself with, so that my identity can’t be questioned by an event or by somebody. And therefore what it also does, it opens up possibilities so that when somebody says, do you want to do this, or would you do that? I don’t say no, I don’t do that. Because I’m this guy. I have a label. And I don’t do those other things because I have a label.

    Bill 19:39

    I never used to travel, I never used to do all these things, and my wife started to bring in these little experiences to take me out of this very narrow-minded view of what, of who I was. And then I became somebody who loved traveling. And then I became somebody who loved trying a different food than I loved somebody to either become somebody who could handle eating a vegetarian diet, and it didn’t mean that I was the worst person for not eating meat and all this kind of junk.

    Bill 20:31

    And it’s a really lovely evolution because for the first time ever my identity came into question, and not by the usual methods, not by mom and dad going “We don’t behave that way, Bill” or anything came in from idiot, you’re in bed in a hospital. And it’s the second time you’ve been here in six weeks for the same issue.

    Bill 20:54

    Maybe you’re not a guy who works 16 hours a day, seven days a week, maybe you need to be a different guy, you know? And then the world opens up. And then I noticed myself while I was in the hospital, making, more money, my turnover, increasing my days decreasing, my time on the job site decreasing everything going down except my turnover.

    Bill 21:24

    And I was like, What the hell have I been doing all this time? How did I have to get to this where I was in the hospital to achieve these amazing things without even trying? It’s nuts. So how do you find yourself transitioning back into life? And what does that look like? Now, October wasn’t that long ago. So you’re pretty early on in your recovery? Where are you at?

    Stroke recovery expectations

    Amy Wells 21:56

    So it’s almost 11 months so approaching the 12-month mark? Look, it’s been really difficult. Take the hospital experience out of it. And I kind of just expected that within three to six months, I would be normal again, I’d be myself and when that doesn’t happen, you know, it’s really hard to handle and this recovery is not like getting a cold.

    Amy Wells 22:29

    It’s not like, I’ve got a cold, but tomorrow, I’ll wake up and I’ll be okay. Because that’s generally what happens you have a cold and the next week, you’re fine. It’s not really the case. I’ve explained it to people as it’s more of a quarter-by-quarter comparison. So, for example, at the start of this year, I take my son to school and we’d cross this busy road and I’d have to hold on to whatever was on the footpath so like a phone box.

    Amy Wells 22:58

    I put my hand on it to locate the way and that would be how we get across the road. But, you know, I often think now when I’m crossing the road, it’s now September, three quarters on, I don’t have to touch that phone box. So that to me is progress. But that’s nine months.

    Amy Wells 23:17

    You know, that’s, insane when you are someone that used to being results-driven. If I do this, this will happen. You know, I’ve done nothing wrong. I’ve done everything people have told me to do in this recovery. So stroke, you know, stroke survivors, get psychology, get into the nature exercise, eat well, I’ve done it all.

    Amy Wells 23:40

    And nothing you do speeds this up. So except probably rest and rest isn’t my strong point. So, where I am now, I guess I’m a lot more accepting of what’s happened. I’m not resisting it. Like you say, opens the doors to other things, and I’m probably enjoying life more than I was before because I’ve slowed down and I can take things in.

    Amy Wells 24:10

    You know, I’ve had so much time with my kids. My son started a new school this year. So I’ve pretty much been there for every drop-off and pick-up. And prior to that, when I was working, I think I would probably be at school maybe twice a term. So I guess, you know, just little things like that and, in my prior life I wouldn’t have wanted to be at school, but now I find enjoyment in that and you know, you make friends with people and you make stronger relationships because obviously, I’m quite open.

    Amy Wells 24:48

    For the first half of this year, I thought I had a stroke written all over my face. So anyone I meet anyone I met you know, almost use it as a disclaimer and say I had a stroke in October. So if I I’m looking at you funny. Or if I look like I’m off balance, you know, that’s why there’s something wrong with me.

    Amy Wells 25:06

    And that’s so silly because physically, I wasn’t really affected. And you can’t tell by looking at me where my head is and how my foggy brain operates. But yeah, yeah, so I’ve got to the point where I’m not having to really throw that disclaimer out there in the first sentence of meeting someone, but you know, when you are vulnerable people will tell you about their vulnerabilities.

    Amy Wells 25:29

    And I’ve had so many conversations this year that I wouldn’t have had in my previous life. And it’s just opened up my eyes to how rushed and stressed and perhaps how I was doing it wrong before because, yeah, I don’t know how I’d go over that and talking to all these different people on a weekly basis. And it’s kind of nicer,

    Bill 25:55

    I completely relate to you. I was 37 How old were you?

    Amy Wells 25:59

    35.

    Amy Wells Post-stroke realization

    Bill 26:00

    Yeah, I was 37. My kids were one of them was a teenager, and one of them was in grade six. So I was going through the whole what are my kids thinking and worrying about and all that kind of stuff. And while they were thinking or worrying about all those things, I was able to be with them.

    Bill 26:20

    And therefore, they were able to be less worried and less concerned. Of course, they were worried when they saw me in hospital twice in six weeks. For you know, all up for about, I don’t know, 10 or 11 days. But then I had a good opportunity to start pulling my head in and going and doing things like, you know, when dad was an idiot, you know, a couple of weeks ago? I’m sorry, you know, when I did that stupid thing two years ago, like, I know, now that was stupid.

    Bill 26:54

    And I started to build this connection with them. That was Like you did with the people that you’ve met, I’ve done it with heaps of people, right? Or that I didn’t know that I also got to deal with my kids.

    Bill 26:55

    And then that next thing that it allowed me to do was go if this ends badly, and I go to wherever I’m good, I’ve done what I needed to do. Now had three years before surgery nearly almost three years. And therefore, I just ramped that up, ramped up hugging and apologizing and telling everybody what a dickhead I had been and how I apologize for the stupid things that I had done.

    Bill 27:35

    And then that brought me closer to my circle of people that I was around all day, every day that I was mistreating because I was stressed, tired, short of time, and running these stories that were created in my head.

    Bill 27:50

    When my head switched off, it completely switched off like I couldn’t connect to it and make up bullshit stories like that anymore. And I started to notice my heart actually in my chest. Physically, I noticed something in my chest for the first time. And I wondered, What the hell is this? Like? What am I feeling in my chest, it was my heart.

    Bill 28:09

    And those conversations that were pouring out, were waiting there. They’re sitting in the background, while my head’s doing all this bullshit, for 37 years, and then eventually they got a chance to come out and talk and say what they had to say. And then, I felt at ease with everything.

    Bill 28:25

    And I knew that my kids, if I croaked, it would not say, you know, we had my dad, he was a good bloke but he was always kind of pissed off and angry. And I was then highly motivated to be the guy that I know parents screw up their kids, that’s just their job. That’s part of what we do. But I was going to be the guy that was going to minimize the amount of damage that I was going to do to my kids as much as I possibly can.

    Bill 28:53

    Knowing that I can’t control anything other than my behavior, how I behave. Pick-ups, Drop-offs, schools cooking. When I got the energy, my wife would go to work in the morning I’d go out and pick up a few things from the shopping center and prepare the meal so that when they all came home at around 6:00, or 6:30 food was ready to go.

    Bill 29:16

    You know, everyone got to eat. I’d be exhausted most days that I did that. But if I broke it up and planned it properly, it meant that we could eat together as a family not rushed. And not sitting down to cook dinner prepared, you know, at seven o’clock. Oh my god. It I had never experienced that life in all our married years and with the kids, I’d never experienced that type of old-school, old-style family life, you know?

    Bill 29:45

    And I would have traded my job for being able to just stay at home and be a stay-at-home dad. If my awesome clients didn’t keep calling me but also if we were financially better off right. I would have just gone. I’m done. You know, like 180-degree turn is just completely improved my life so many ways, and I had all these issues that I never had before, you know, stroke issues like, most people wouldn’t think that that’s an improvement on your life.

    Amy Wells 30:20

    Yeah. Like a new-found harmony.

    Bill 30:24

    Yeah. And it came from this massive amount of what we call it like, chaos as it came from chaos and disaster. Just such a beautiful place to be. And I’m kind of still there. You know, like, I’m not really, I haven’t really adjusted back. I haven’t really gone back to my old ways too much. Of course, sometimes I’ll work too many hours. But sometimes I have to but I’m aware that I’m doing that because I’ve just got to get by for that particular time. And then I’m going to go back to the new way of doing things.

    Amy Wells 31:01

    Yeah. It’s so great to have that perspective, which I don’t think anyone can truly understand. I can’t put it into words. And the old me wouldn’t have understood it. Like it was all about status and how high you can get on the corporate ladder. And you know how many sports you can have your kids down for? Every night of the week, you know, are we doing all the extracurriculars we need to and you wear everybody out, you wear the kids out you wear yourself out?

    Bill 31:33

    Yeah. And then you wonder why kids become hyper-vigilant and why they come always obsessed to put their head in a device or whatever because they’ve had enough of you that don’t want to bloody listen to your bullshit anymore.

    Bill 31:48

    They want a distraction, and they’ll take it wherever they can get it. You know, and my kids stopped playing sports. I was devastated when they stopped playing sports what do you mean you’re not gonna play sports? And really made them feel bad about not playing sports anymore. It was terrible that I did that to them because it started off as something that we were going to do for fun. And then I made it about me and I clued on that as soon as I made about me, they were like, no, I’m out of here.

    Amy Wells 32:15

    Yeah. And also having the time to understand what your kids are into. So, you know, I’ve had extra time to watch my children and go, you really like making comics? And it’s, you know, if you’re stressed all the time and busy, you don’t have the time to sit down and really understand. What is it that these kids like to do? You just assume that they like what they’re supposed to like or what society says.

    Bill 32:44

    Yeah. And you impose your model of the world on them. You then get kids to resent you because like, I like doing that stuff that you like doing, you know, Why should I do that? And it’s a strange gift. Stroke can be a strange gift, you know, and I’m not saying that it’s easy. And I’m not saying that it’s pleasant.

    Bill 33:02

    And I’m not saying that you should like it especially early on Absolutely not. You know, you should feel every emotion and go through all the trauma and all the troubles and all the anger and everything, you should do it all.

    Bill 33:15

    And then when the dust settles, reflect back and look at how you’ve changed and how you’ve evolved, and become a better version of yourself because of these lessons that didn’t take your life that just came as a reminder that she has to change.

    Amy Wells 33:36

    Yeah, I agree.

    Bill 33:39

    How do the kids deal with that?

    Amy Wells 33:44

    Yeah, obviously, like you the hospital stay. It’s not great to see a mom in a hospital bed. But at the same time, I don’t look any different. So from that perspective, I guess it’s been lucky, if I was struggling physically, then I think that would have impacted them a little bit more.

    Amy Wells 34:07

    However, in saying that old mom has gone and there’s this new mom that gets really tired and you know, I have only recently just been able to start kicking the football with my son or, you know, any sort of neck movement up until about nine months ago, up until about the nine-month mark just made me dizzy and made me feel sick instead of vertigo.

    Amy Wells 34:31

    So I am different, but I think it’s a blessing that they don’t see it and I like to think I’m pretty tough and deal with it internally. And yes, I might go to bed at eight o’clock every night. But you know, that’s not impacting on them. I’m home and I can help with their homework, I can help with a research project.

    Amy Wells 34:55

    I can take them to the school and pick them up and drop them off and so I think the loss probably got better. But yeah, there are definitely times where I mean my daughter, she’s five, she probably feels a bit more than my son who’s eight. Whether that’s a female intuition type thing.

    Amy Wells 35:16

    She, I think is struggling with it a bit more. She doesn’t like seeing Mommy tired. And I think it’s sort of just worn off a bit more on her. So she senses that I’m struggling some days and yeah, she’s regressed a little bit in some areas. But I think she starts school in January. So hopefully, when she’s got a full structured day, that’s the full week where she’s busy and you know, wearing myself out and that might improve. But yeah, on the whole, I’ve been quite lucky.

    Bill 35:53

    Interesting, isn’t it like five-year-old child dials straight in and knows exactly what’s going on? And can feel what you’re feeling and has enough awareness and consciousness to say no I don’t like it when mom’s tired.

    Amy Wells 36:10

    She, yeah, I was talking to a neighbor the other day and explaining obviously what had happened to me and why I’m not working at the moment. I said, I had a stroke last year, and my daughter was standing next to me. And she looked up and she said, it was in October. And I thought, oh, okay. Yep, it was they, who listened to everything. And maybe I need to be a bit more aware of that because she’s probably heard the story multiple times.

    Bill 36:39

    Yeah. My kids probably got sick of me talking about it and basically doing the same thing to you. That as you I have to tell people that I had a stroke because sometimes I would just fade out like while I was talking, or I couldn’t get the word out, I would get stuck when I speak or whatever, you know?

    Bill 36:57

    And I would tell people and often it would come up when I was eating because I really changed my diet a lot. So to decrease inflammation, I really changed my diet. So part of what happens in the brain is the stroke happens. And then there’s an area around it there’s a technical term for I don’t know what it is, where, where the deficit is happening from, as well as the area that’s actually physically died.

    Bill 37:22

    And that area is the area that’s going to come back over time. As things get better inflammation goes away, the healing happens, it comes better, right? So I wanted to take control of something that I could, and what I could take a job was what I used to eat, and my diet wasn’t the best before Coke, two or three days, two or three cans a day.

    Bill 37:42

    Smoking, alcohol, all that kind of stuff. And I’m not saying that somebody should never indulge in one of those things, but really sugars like that. They don’t really help they increase the fatigue. So we would go to places and I would have a salad and Grilled Chicken and mineral water with a little bit of lemon in it.

    Bill 38:04

    And people would go to me, are we going to have dessert again? I’m good. Don’t you have dessert, no I don’t eat it. And then I would try and avoid the conversation for as long as I could. And then eventually I’d say, look, had a stroke, blah, blah, blah, the kid was sitting there, their eyes be rolling back, because then the conversation goes to the next level.

    Bill 38:23

    They think oh my god, here we go. And of course, I did that you guys need to stop eating sugar so much and they were like oh my god, this goes on and on and on. And eventually what happened was, I just let them be themselves. And I just stood up, and I lead by example without preaching.

    Bill 38:44

    And then I just accepted that they’ll come to their version of balance in their own way, but at least they’ve got somebody to refer back to when they have a question to ask about something that’s troubling them. That was similar to me when I was in trouble you know with your daughter I mean what a great example to set for a five-year-old when you’re tired you rest when you feel unwell you rest instead of soldier on.

    Amy Wells Resting helps heal the brain after a stroke

    Bill 39:24

    Go to work and smash another five hours out you know what a great example. What you know about stroke recovery and how your brain heals you know that it happens when you rest what we want for our daughters and our boys when they’re recovering from being unwell is we want them to rest and when they’re growing and we want the growing brains to grow as healthfully as possible, we want them to rest as much as possible.

    Bill 39:49

    Because at night is when the gold happens. It happens when we slip into this awesome book called why we sleep I forget the guy’s name but I’ll bring it up in a second. And he talks about how at night, the cells decrease in size, they kind of shrink, and they separate from each other.

    Bill 40:09

    And they allow the cerebral fluid to get up into the cells and do this kind of a wash and drain all the toxins out of the brain and get it out into the excretory system. And that only happens at night when you’re doing REM sleep. And stroke survivors will tell you that they often struggle to sleep after a stroke.

    Bill 40:35

    And it’s all sorts of reasons why, if they dial that down, they can get their sleep cycle, kicking in and better. They’re doing so much to support their brain in recovering more than they would if they know more than they could ever imagine that it does for them. It is such a fascinating thing that people especially in Australia and probably in other Western countries go yeah, I only slept for three hours last night.

    Bill 41:04

    I mean, I don’t need to sleep more than three hours. I’m good to go. Dude like stroke survivors, the more you sleep the better. You’re in that really cool phase of knowing how if we transfer what happened in our brain and how to heal the brain into how to develop a brain like you’re in a really cool space because you’re learning about how to get yourself feeling good in that put that into a child’s brain and then bang you’ve got an amazing healthy you know creative child who with a really, really sort of happening brain.

    Amy Wells 41:47

    Yeah, I’ve seen quite myself to my five-year-old in many different ways. Yeah, cuz I basically I’m retraining my brain she’s developing her brain at night. I have this little ritual where I balance on one leg on a piece of foam to help with my cerebellum repair and balance.

    Amy Wells 42:08

    And she sees me doing it. And last night, she’s trying to stand on it with me, and she could probably almost do it better than me. But like, how good’s that to teach your five-year-old to balance on a piece of foam? Well, that’s difficult. And um, yeah, my son who’s eight can’t do it. All that well. But it’s, you know, I’m doing something that an eight-year-old and a five-year-old can’t really do that well. It just yeah. So I try and teach them to do it too. And we can all do it together.

    Bill 42:36

    And it’s really helpful. You, people, don’t realize how powerful that is. But that means that you, if you can balance better, that means you’re less likely to fall, that means you’re more is activated better, which if your cause activated better, then when you get a dizzy spell, you can, you know, stabilize yourself, you can make sure that you’ve got a little bit of time to respond and react.

    Bill 42:54

    So it’s amazing and the kids, a lot of them don’t have that because they don’t exercise enough and I’m not saying Now take them and do 10 times more exercise, but they don’t exercise enough because it’s sitting down too much. their bellies aren’t activated. And they should be able to stand on one leg on a piece of foam. Like their kids. They’re the ones that are going to be able to do better than anybody.

    Bill 43:14

    But look, it’s not about that. It’s lovely that you’re in that stage where you see how this could this thing that you’re doing to help yourself is rubbing off. Like it’s a beautiful thing. And you do it together, you know? connecting over balancing on a piece of foam.

    Amy 43:33

    I know I would have thought hey, um, yeah, stretching on the ground and throwing a tennis ball against the wall trying to catch it on one leg, and yeah, I think balance is good for kids too. Their coordination.

    Bill 43:50

    Who in your family was the worst in a crisis? For me, it was my dad like the time I ended up in hospital the first time. He forgot to take his blood pressure tablet or something collapsed at the house and came to the hospital in an ambulance.

    Amy Wells 44:17

    Oh, because you went there?

    Bill 44:20

    Because he found out that I was unwell in hospital. He went to water and then ended up in the hospital and I was in the stroke ward and I had to come down to see my dad come to visit me in the hospital in the emergency room, connected to heart machines and all sorts of stuff.

    Amy Wells 44:40

    That’s crazy. Funnily enough, my 84-year-old grandma was in the hospital, the same hospital around the corner for me when I was in hospital after having a stroke, but I don’t think it’s for the reason your dad was it was more so heart fluttering. Yeah, I was walking around with a walking frame to visit her room you know to try and push get moving and get better and get back to work and get life back to normal.

    Bill 45:08

    That’s what I was doing. Who else was terrible in a crisis around you? Or wasn’t there anybody?

    Amy Wells 45:17

    I didn’t think there really is anybody I mean, it’s been a learning process for everyone. There’s no history of stroking our family at all. And I guess people deal with it and deal with it in different ways. But you know, my husband seen it from the beginning from that night in my bed when I was on a roller coaster to you know, now being out of fill my days with more things, and I think he’s managed the process really well and has been positive for the whole thing.

    Amy Wells 45:55

    I mean, I guess I found it difficult you know, it’s such an invisible problem and people want you to be normal and people want you to be better. So yeah, I think my mom is a super positive, optimistic lady that you know, she can’t really get it down, go back. It’s amazing.

    Amy Wells 46:21

    And in the early days, you know, we didn’t know straight recovery was a one to two-year thing. We thought we thought it’s just a small obstacle to get you to need to get over and you should be like, okay, so maybe on the weekend, we can do this, this and this, and I’d say yeah, okay.

    Amy Wells 46:38

    And then we get to the weekend and it would be, you know, one of the bad days of the week and we physically just need to be in a quiet room. And not much fun for anybody. And, you know, I’d have to say, No, I can’t do that. And I think that’s been the hardest part is me thinking I’m letting people down or I’m having to say no to friends.

    Physical limitations during recovery


    Amy Wells 47:00
    Like, I don’t want them to stop inviting me, but you know, come out to dinner at seven o’clock on the weekend and I’ll be thinking, but I go to bed at eight o’clock. And it’s really hard to sometimes I kind of wish I had a sign to put on my head to say, you know, it’s not normal, or, you know, I was walking down the beach last night and I was thinking maybe I should get a T-shirt printed on the back says I had a stroke, I walk slow or it’s that I’m trying to get other people to understand what you’re going through.

    Amy Wells 47:35

    And while everyone’s been great in a crisis, like beyond great, it’s I think it’s they can’t understand it and it’s only a straight about the cat.

    Bill 47:47

    My wife’s been on that journey now as well. As long as I have in the beginning. It was really difficult. You know, I do remember her saying to me like it’s getting old enough. And me getting really offended about that, and thinking that she was telling me, you know, to get over it and just, you know, be better.

    Bill 48:09

    And she wasn’t really saying that she was really saying it’s getting old for her that she’s struggling through not having me the way that she remembers me being and all that kind of stuff. And not wanting to go out in public because too much noise was affecting me, or on a particular day I’d be wasted or whatever.

    Bill 48:30

    And I remember traveling overseas one year and Christine’s amazing. She’s the kind of person who, if you want to go overseas, just give her a buzz and she’ll itinerary, the whole thing for you to the nth degree. Yeah, not one thing. There’s no one thing that you miss.

    Bill 48:48

    However, what that means is that I don’t get time to just do nothing when I’m overseas because she’s overseas and it took us so long to get there and money and all that. So I want to say as much as I can I’m like, man, I can’t do that like I need a day where I’m doing nothing.

    Bill 49:05

    At least please give me one of those so that I can do those other things The next day, you know? Yeah. So we would go somewhere and I would say to her, listen tomorrow, do not expect me to be up and about all day to do all those things that you’ve claimed. Don’t expect there is no chance. And she’d go all right.

    Bill 49:25

    And then if I had a good night’s sleep and woke up feeling well, I’d say to her, you know those things that you wanted to do today? They’re on baby let’s go and she’s like are you sure? Are you just doing that because you want to make me happy? No, I’m feeling really good.

    Bill 49:41

    I want to do them let’s go like strike while the iron is hot you know? And we started, it took some time, but we started to get to that point, just through a lot of conversation about how it made me feel how fatigue made me feel, and me reminding her about how fatigue when she was fatigued a couple of times, for example, in her life how it felt well, but I reminded her of how when you’re fatigued and completely wiped out remember that day?

    Bill 50:10

    Well, that’s how I feel most days, you know. So that was the only way for me to get my to get understanding across for her to go, I can relate to that. And I’d say to her like, and it happens all the freakin time and I can’t stop it from happening and I can’t just rest and switch it off, you know?

    Amy 50:29

    Yeah, you can’t predict it.

    Bill 50:31

    Yeah, which is the worst part, right? And, then what I would do is go to parties. And I would hang out, like on a stool on my own in the corner. Just try and quietly get out of, you know, the business of the party and just try and be there so that people could say, ah, he came and then maybe they wouldn’t notice me sneak away into the corner and just sit quietly and just chill.

    Bill 50:59

    That made it easier for me to be there a little bit longer. Yeah. And then not make them feel like, you know, Bill never rocks up anymore because, people who are living outside of the house, are even harder to bring on board and make them understand the ones living in that house are doing it hard enough, but the ones outside the house even worse.

    Bill 51:21

    And then what I found was that as I sort of stretched my being-out time from 8:00 to 8:30 then I realized where my new normal was, and then it started to creep up and creep up. And I don’t enjoy being out till one or two o’clock in the morning at all anymore. I can’t because then I don’t sleep enough hours to feel good in the morning. But if I had to, I can get through it if I had to. But back then we often sort of said it’s 11 o’clock. I’m going home.

    Amy Wells 52:00

    And there’s nothing wrong with that.

    Bill 52:03

    And my friends didn’t understand and how could they the only way they’re gonna understand is if they had a stroke and bloody hell. We don’t want anyone to understand us that way.

    Amy Wells 52:13

    No, it’s kind of like being a baby or like a young child is sometimes how I explain it in, they need their rest, you know, they get to have a playdate and they play for two hours straight and then they all pop all end up piled up on top of each other. It’s almost like they’ve drunk too much alcohol. It’s like that tipping point. And you need that risk to regenerate. And yeah, it’s very much like it’s being a child. It’s like having an immature brain again.

    Bill 52:42

    Yeah, I I you stole away also then took it upon myself to use it to my advantage a couple of times as well. Yeah, yeah. So it did some stupid I would say, Hey, guys, I’ve had a stroke.

    Amy Wells 52:56

    Get away with more.

    Bill 52:59

    After about five years you kind of got, enough. How are your work colleagues? Being that they’re all from hospitals? How are they sort of relating to you now that you haven’t been back to work?

    Amy 53:19

    I couldn’t ask for a better response from them. They, right from the beginning. You know, I’ve got different contacts there that I speak to regularly. And some have said from the beginning, you know, this is a 12-month journey for you. And I’d laugh and be like, no, it’s definitely not how dare you say that I always get offended.

    Amy Wells 53:42

    But then I had one that straight up said to me, you know, you need to treat this like it’s maternity leaves and people take 12 months off to go and have a baby. And obviously, she knew that I’d had children and well while working and sort of listen to that and thought, yeah, okay, I can do that.

    Amy 53:59

    You don’t lose what you know, through maternity leaves, you get back and there’s a bit of a transition period to, you know, get that from the folk. But yeah, like we have recently had some chats, and we’ve got a bit of a plan in place to start up in a couple of weeks.

    Amy Wells 54:17

    But yeah, with some limitations. So as I approached the 12-month, Mark, there’s no way I would have even been considering taking on work, even probably three months ago, that something’s turned a corner at some point, which I can’t quite identify. Also, just the more people you speak to, they give you those two years, don’t they?

    Uncertainty

    Amy Wells 54:42

    And they say you’ve got two years to technically rebuild the brain cells, or do as much as you can in your recovery. And while physically it’s been tough this last 12 months and a lot of the time I don’t know if I’m standing up for where I am in space. But as that improves with my phone balancing, you know, I want to start pushing the mental side of it. And intellectually I know I can still do the job. It’s whether I have the stamina, the fatigue allows it, whether cognitively can be as quick as I used to be. So all those, you know that all those little challenges are going to be coming up.

    Amy Wells 55:29

    And yet it’s all a bit of the unknown, which is a bit scary. But I won’t know unless I try. So I want to use those two years to jam in as much as I can. Because that’s my mentality is Go go go. And I don’t want to regret anything. So I don’t want to get to two years and mentally say, Oh, well, that’s my recovery done.

    Amy Wells 55:52

    I didn’t try hard enough to get my cognitive thinking going. And yeah, I guess you I’ve got a bit of a challenge, a different phase of the recovery coming up. And I’m expecting it to be very, very tough. And you know, I’ve been told by you know, the professionals and the people I work with a lawyer on the weekends like this is going to be hard for you don’t expect it to be easy. But yeah, it’s something I do want to try. I don’t want to leave it. I’m not ready to close the door.

    Bill 56:28

    Yeah. No, I agree. I was never an office kind of guy. Yeah, it was worked outdoors because we had a property maintenance business. I still have it. And that business was it was I was unable to go back to a fully for many, many years. And at around the six-year mark, I was completely wiped out, or probably about around the five-and-a-half-year mark, which was about a year and a half after brain surgery.

    Bill 56:55

    I was completely wiped out. But I was wiped out through an issue with my thyroid, which creates neurological fatigue the same way as the strokes did, they just happen to one come after the other, right? And I went into an office for the first time in a long time probably the first time in about 15 years to do an office job.

    Bill 57:18

    And I remember sitting in front of a screen and trying to get through the first hour or two and then being wiped out completely, and then struggling to get through the rest of the day and recover and do all those things. And then as time went on, I ended up being employed there for just less than three years.

    Bill 57:39

    As time went on, the ability to stay in front of the screen and do those heavy, heavy lifting with my brain, you know, thinking and solving problems on a computer started to increase and it started to get better and better. And it was like it was like a physical recovery of the brain in that the before that cover that part of the brain recovery couldn’t have happened if I didn’t sit in front of a computer.

    Bill 58:05

    So I had to do the stuff that I was doing outside of an office, which was happening, you know, through rehab through my nutrition through all those things. But then there was this part that I had to do, which I didn’t realize at the time, but reflecting on it now, which was in front of the computer.

    Bill 58:21

    And that slowly allowed my mind to get more resilient at dealing with bright lights in an office and all that kind of stuff. And I asked them to switch off the two lights though on top of my head. And we put a filter over the screen, and I wore glasses with a filter. And everything that I did, added just a little bit more time to my day so that by the end of the three-year mark, I was no problem.

    Bill 58:50

    You know, like any other staff member, able to be completely functional for eight hours a day and productive for them and do my job. They were extremely happy. In, in taking me down that path, I didn’t have the awareness of having the conversation with them again, at the beginning, sorry, and saying, you know, my brain doesn’t do well with lots of light, fluorescent light, and it doesn’t do well with lots of noise.

    Bill 59:14

    So I didn’t create the right environment for a healing brain when it when they get back to work. But you’re in a situation where you can have a conversation about that. And they already understand that because they’re medical people. So you’re, really, you’re well set up to achieve success in that space. And don’t put a timeline on it. Yeah, people talk about two years, but it might be three might be four.

    Bill 59:43

    Others might come back and things might work in six months, other things might not work for a different amount of time. So I found that by not having a deadline on those types of things, but having little goals, it worked better because my goal was, for example, to be able to be present. for eight hours at work, but I didn’t put a timeline on when.

    Amy Wells 1:00:03

    Yeah, sure.

    Bill 1:00:05

    That takes the pressure off. And then it doesn’t make me feel like a failed at the 24 month mark, you know?

    Amy Wells 1:00:13

    I think it’s, um, I was I’ve listened to a lot of podcasts during this time. And I heard something on one a little while ago. And, you know, you go, Okay, so I want to achieve this. So and that might be a particular row or a particular number of hours a day, whatever it may be, but it may seem daunting, and you know, to me going back to work is a little bit daunting.

    Amy Wells 1:00:39

    But it’s all about breaking it down into steps. So think about where you are. Now, that’s step A. Step b is, you know, do your three hours a day in the morning, two days a week. And then once you get to B, you go to C instead of saying, oh, I’ve got to get from A to Z.

    Amy Wells 1:00:58

    And that’s anything in life, really. Looking at A to E, well, it can be quite overwhelming. And you have to get to B, C, and D before you can get to E. So I’m just trying to take that approach in really not looking too far ahead.

    Amy Wells Turning corners

    Bill 1:01:15

    Yeah, absolutely. And I think you continue to recover and turn corners all the time. Like I spoke about it. I think it was just a couple of weeks ago, on one of my posts on Instagram, you know, I spoke about how I had, I’ve turned another corner, you know, and in COVID, I’ve been able to actually focus so actually sitting at work and working in a computer is one thing.

    Bill 1:01:43

    But focusing on for extended periods of time is another thing and for me, that’s another layer to the spin able to sit in front of a computer and work being able to sit there and focus without distraction. Like that’s another level. So I found I found myself because I’m in Melbourne, we’ve been in lockdown for 37 years. And I know where I’m still in lockdown.

    Bill 1:02:07

    And I don’t know if we’re ever going to get out of bloody lockdown. But I’ve been really productive in this last six-week block. And, and focused, really focused. And normally I wouldn’t be able to do that, you know, where I find myself spending 12 hours a day in front of the computer with breaks and coffee breaks and all that kind of stuff.

    Bill 1:02:29

    But without even noticing that I did it and not feeling like shit at the end of it. And it’s doing work that I love. It’s all about the podcasts, right I’m putting courses together, thinking about meditation challenges that I can create for people. I’m thinking about who I’m going to interview next and transcribing it and doing all that kind of stuff.

    Bill 1:02:48

    But that doesn’t just happen in the last six weeks and I’ve been doing this podcast since 2015. And it’s been a bloody pain in the ass struggle. that entire time, but the value and the joy that I get out of it made it impossible for me to stop. But nonetheless, like, I haven’t been able to focus on it, and it was happening episodes would happen intermittently.

    Bill 1:03:14

    And all the work that I was able to happen just infrequently. And now it’s kind of been like just bang, like on point. So, I’m eight years down, and you still turn corners all the time.

    Amy 1:03:27

    So it does happen. So you have to you really have to expose yourself to it to train your brain again, which is what I keep getting told by the, you know, the doctors and it’s another phase if you don’t try, you’re not gonna know.

    Bill 1:03:42

    And you’re early on, Amy, I mean, you’re so early on. And what they do is, we haven’t spoken about it a bit. So maybe we can, like, how did you I’ll ask the question, and then I’ll explain why I’m asking it. So my question is going to be at the end of this little next section. It’s going to be how you deal with it psychologically.

    Bill 1:04:05

    And because dealing with it psychologically, for me they do not also offer another level of leveling up and another turning point in how my brain heals, and it sounds weird, but if I deal with my psychological issues, then the healing in my brain happens differently and better and takes another level. So how have you experienced the whole did you do the whole? Oh my god, I’m a mortal thing?

    Amy Wells 1:04:36

    Yeah, I think I went through phases. So I know it’s kind of like great isn’t it that I don’t know those seven phases off by heart? But yeah, there was denial for sure. That was the hospital phase. And then there was a fear phase and which brought on anxiety so because that day when the stroke happened, I remember how I felt. I felt like I was getting a virus I felt like I was getting a cold.

    Amy Wells 1:05:03

    And I had a really sore neck like someone was sitting on my shoulders and you know, I had anytime I feel a little twinge in my neck, I would go doing oh my goodness, oh my goodness, I’m gonna have another stroke. And that’s kind of passed now, but that was awful.

    Amy Wells 1:05:19

    That was, you know, that’s only just sort of passed in the last two months. And the more people that tell me the physios the GPs and neurologists you know, these dissections are quite rare to happen twice, especially in the same spot and you know, you could have professors telling me that I still wouldn’t believe it I’ll be the one that has it twice.

    Amy Wells 1:05:38

    And so there’s that fear. There was frustration there’s still frustration you know, if I exercise for more than 20 minutes I get dizzy. So if I live quite near the beach, I can handle 20 minutes if I went for 30 minutes. Oh, that dizziness would start kicking in. springs on a bit of anxiety, what if I fall over and public?

    Amy Wells 1:06:05

    So, that’s bizarre because I exercise of exercise a lot in my life, I kind of live for it, you know, used to teach aerobics at one point have played different sports. I like long-distance running and to not be able to do that is also a loss of identity, which has been awfully frustrating.

    Amy Wells 1:06:28

    And, yeah, I guess with the fear with the frustration with the denial, eventually, you have to accept and, you know, move on, and this is how it is now. So I sort of reconfigure your loss to how it is or keep dwelling on what happened. So psychologically, it’s the hardest thing I’ve ever had to deal with, hands down. Just Wow. Like you cannot describe it to anybody.

    Amy Wells 1:06:59

    It’s just, it’s a roller coaster. And like you say, you might wake up one morning, feeling like you blacked out for the day. I can’t do anything today. But along with that comes frustration and fear. And I feel really tired today, but I didn’t do much yesterday. So does that mean, I’m going backwards?

    Amy Wells 1:07:18

    And you know, back in January this year, I might have had five bad days and two, good, two semi-good days in the week. But I can say now that those bad days are nowhere near as bad. So I’m not I’m very rarely sort of bed bound. Now, a bad day might be just staying home doing not much and resting and sitting on the couch a bit more.

    Amy Wells 1:07:43

    But I think I, you know, tend to have maybe four good days a week so it does shift and that helps you psychologically as well when you see those shifts and when you can cross the road without holding on to the phone box. But it’s slow. And it’s tedious and you have to be very patient and all of these things I’m not I was not so I’m a different person.

    Amy Wells 1:08:11

    Yeah, it is a complete 180 I now have to be patient I have to become there’s nothing I can do that’s going to speed this up and I saw a psychologist straight up after the stroke happen because I was told, you know, get some psychology that’s what strikes others do so I saw one. And she was good at the time. But now I switch to a new one. He uses the David Schwartz technique about internal family systems and labeling the parts of your body and I’m finding it really really effective.

    Amy Wells 1:08:52

    So it’s, yeah, we focus on why have you got that pushy part? You know you’ve had a stroke you can rest it is okay to respond. sit on the couch and I’ll look at the ceiling and I’ll say that ceiling, it’s really dirty. It needs painting. We’re gonna paint the ceiling. So I’ll call my dad often you’ll come over and we’ll paint the ceiling.

    Amy Wells 1:09:09

    And the psychologist will say, okay, but we don’t want to be painting ceilings, we need to address this pushy part and try. Yeah, we try and isolate it, talk to it. So we’re having a bit of success with that. I’ve only seen her three times. But um, yeah, I think I think psychologically, your podcasts have been really good.

    Amy Wells 1:09:29

    Particularly like the ones where you’ve spoken to other survivors that have had the vertebral artery dissection because it’s, you know, I can relate to it and also the young girls that are in their 30s. And I’ve, you know, I’ve made friends with Kelly, and we talk a bit on Instagram.

    Better after stroke


    Amy Wells 1:09:50
    But it’s Yeah, it’s a new life and I’m much clearer about what, what matters to me now. And I am a better person, and there are silver linings. And there will continue to be silver linings. But where I’m going to go and what I’m going to be you know, I think there’s lots of possibilities.

    Amy Wells 1:10:13

    And as I start to feel better, and my focus gets better and my brain less foggy, I kinda want to use this experience for the better. Like, I want people to know, and kind of like what you’ve done. You know, there are, people out there you can help and I want to share and I want to I kinda want to show the world that just because something bad happens to you. You can overcome it. And yeah, I’m not sure how that looks right now.

    Bill 1:10:49

    That looks perfect it looks the way that it needs to look for right now for nearly a year. And what an example you’re sitting for your children, you know, you didn’t take these thing’s lying down, and then I just fall into a bowl of mess and then just, hope that your life is over and blame things, you know, blame everything on this one experience.

    Bill 1:11:12

    Like, it’s not what you do, you know, it’s the seven stages of grief, a shock and denial, pain and guilt, anger and bargaining, depression, the upward turn reconstruction and working through and acceptance and hope. I mean, you’ve gone through all of those. And now what happens is what I found was that you cycle through them one at a time again, and again and again.

    Bill 1:11:34

    I went through it in shock and denial. Every time I wanted to do that old thing that I used to do, again, frickin Hell, I can’t do that still, why can’t I do it? And for me, it was bike riding, you know? Yeah, and I still love riding my bike. And I don’t ride it like those guys in lycra or anything like that. I just ride it just for the sake of riding.

    Bill 1:11:55

    And I remember getting back on my bike and then my foot falling off. pedal because I couldn’t feel my foot and then the pedal scraping my shin and destroying machine, you know, then I got a stirrup, I tied my foot onto the pedal. And then I would go to put my foot down.

    Bill 1:12:11

    When I stopped the bike, forget that my foot was in the stirrup and not get my foot down, fall over. Oh my god, I can’t do that either. And then I discovered, you know, so I went through all those prices. And then I discovered electric bikes, which meant that my left foot didn’t get tired, it didn’t need to be in a stirrup. And now I can ride because the motor is doing most of the work.

    Bill 1:12:34

    And I don’t have to worry about falling or any of that stuff. And I’m back and that took four years to get to that point, you know. And I wasn’t going to like you, I wasn’t just going to accept the fact that no, I can’t do that. And that’s not going to happen. Because just before I bought the two-wheeled electric bike, I was considering a three-wheeled regular bike because that meant that even if I got tired, I didn’t have to worry about resting and stopping myself from falling.

    Bill 1:13:04

    But what I discovered about this electric bike so you know, we get there we go through the cycle over and over again and you’ll get there one of the things that I do want to mention and discuss with you is just that idea that when you get to the 30-minute mark of exercising that you can start feeling dizzy again and seeing how much of that is the fact that you’re getting there.

    Bill 1:13:28

    And you’re getting sick or the fact that you’re expecting yourself to get there and getting sick and therefore making that happen. Now, I could be wrong, right? But there’s an expectation and an anxiety level that builds up at the 30-minute mark. What makes you think that you’re not setting that up at around the 15-minute mark and then creating the environment to trigger you at 30 minutes? Because your body will do what you set it up to do what you tell it to right. So when your body realizes that 30 minutes are up, it’s Go. she’s expecting this. Let’s give her this.

    Amy Wells 1:14:03

    Yeah, yeah.

    Bill 1:14:04

    I could be wrong. But a lot of people have these ideas again, that they create in their brain, in their head about what it means you know what all this stuff means and the meaning they give to it they might live up to. So be careful the meaning that you give to things because if that meaning is not a supportive one, and you’re living up to it, and you’re not noticing, well, you might be the person who’s getting in the way of your own recovery. You know, possibly, yeah.

    Bill 1:14:34

    And I was that guy, because I used to do that, to do that to my wife. You know, I used to sometimes have those days where I talk about, you know, how I’m never gonna do this again, and I’m never gonna do that again. And I would just devastate her. And I realized that I was never doing those things because I was the one that was saying that she wasn’t saying that to me.

    Bill 1:14:55

    It was me and I was living up to my words and as a result, you know, I created one of one of the presentations that I did for a group, probably a couple of years a bit years ago now, maybe three years ago was a presentation that I’ve labeled words like weapons, you know, they win sometimes.

    Bill 1:15:16

    And I talk about how one of the people that I was in recovery with was calling his hand a bastard and every time he called it a bastard it didn’t do what he wanted to do. As soon as he changed those words to a friend, that hand moved and did what it wanted him to do. Like, it was a one-word, and the time difference was 30 seconds.

    Bill 1:15:37

    And the achievement was a dramatic improvement in his ability to move his hand just because of that word. So he was setting himself up. Because a bastard hand is not a supportive one it doesn’t do what you want it to do. It lives up to what you call it. When he called it his friend man that was a compliant hand. It didn’t have a perfect function, but it was just compliant.

    Amy Wells 1:16:05

    Yeah, I’ve been told it’s a bit similar, but speak to yourself like you’re a child or like you’re a baby. You know, don’t be so aggressive and don’t be so angry towards yourself. So, and I’ve actually got a written on a pink post-it note from psychologists that said, that says, you know, speak to yourself in a kind manner like you would to a little person.

    Be kind to yourself

    Bill 1:16:33

    And don’t speak to yourself in a tone of voice that you would never speak to another person in. You wouldn’t speak to your friend like that. Why would you speak to yourself like that? It’s a really important thing to remember and just catch yourself out when you’re doing it.

    Bill 1:16:52

    That doesn’t mean you’re always going to be perfect. That just means that you have a bit more awareness and when you do, stop and treat yourself how actually go. You know what? Omar, I forgive myself, I’m sorry for speaking that way. And you can just get on with it. You know, what I love? About what you said that you’ve connected with Kelly.

    Bill 1:17:14

    And you guys are friends and you talk from time to time, because of my podcasts. I mean, my God, that is amazing to hear. I really loved that you said that, you know, it’s the most brilliant thing that I never expected would come out of a podcast that I would connect people and help people find other people that could relate to that were like them.

    Bill 1:17:39

    And there was another time that that happened to me was when somebody asked me from New York, whether I knew instruct survivors in New York, and I said, Yeah, I do. I know about four. And I was able to connect with somebody who’s in New York who didn’t know any stroke survivors, two-stroke survivors. We’re in New York and I’m on the other side of the planet.

    Amy Wells 1:18:07

    no worries a lot. We have a lot in common and um, she’s in Hawaii at the moment about to move back to mainland America. And I just recently moved house so it was kind of just going through a lot of the same stuff. Yeah, when she turns her neck her eyes make her feel dizzy and it’s similar to what I experienced. And she does some really good like, Instagram stuff about physical recovery and different exercises. Yeah, she’s quite an inspiring, inspiring person.

    Bill 1:18:43

    Yeah, she’s lost a paperweight she realized that maybe she was eating way too much and indulging way too much on you know, those things that that we love, potentially dine support us and she does a lot of awesome assizes she had a stroke at 32. Yeah, she was on episode 99. Kelly. I can never pronounce a surname.

    Bill 1:19:09

    Something like that. And she was just really, really cool to interview as well, because she was so young and she has so much. She’s so inspired, you know, to overcome and get better and achieve and then also help others. And it’s just brilliant that everyone’s helping everyone. I mean, that is the one thing that struck survivors seem to do heaps off is just that’s it. I know something. I learned one thing that helped me, I’m going to tell everybody about it.

    Amy Wells 1:19:40

    Yeah, and you should because it’s hard. It’s so hard. I think you’re doing a great job. Keep it up. I really love listening to them.

    Bill 1:19:51

    Thank you so much. Well, do me a favor. When this one comes out. Listen to this, as if you’re not the same person just so you can have this third-person perspective of your own stories that you’re telling yourself about this recovery. Right?

    Amy Wells 1:20:09

    That’s gonna be psychologically hard because I’ll just want to criticize, you know.

    Bill 1:20:16

    That’ll be the next level of learning. And you know what, and then tell your husband when he’s on the way to work when they are wherever he goes in the car, to put it on and have a bit of a listen, because that will also help him in this process of understanding you having a conversation to a stroke survivor, which he doesn’t ever hear.

    Bill 1:20:33

    He doesn’t ever hear these backward and forwards between two stroke survivors. It’s going to give him a better understanding as well. And hopefully, it’ll help him with the things that he’s feeling that I imagine. He hasn’t really been so upfront in telling you about, you know, carers tend to be stoic, but I reckon they need to be given the permission to be vulnerable as well and to feel like they’re freakin over it or whatever.

    Amy Wells 1:20:59

    Yeah. Yeah, definitely over it.

    Bill 1:21:04

    Amy, thank you so much for being on the podcast. I really appreciate it.

    Amy 1:21:08

    Yeah, I’ve had a great chat. It’s been really good Thank you.

    Intro 1:21:16

    To discover how to heal your brain after a stroke go to recoveryafterstroke.com.

    Intro 1:21:26

    Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals’ opinions and treatment protocols discussed during any podcast or the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed all content on this website at any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis.

    Intro 1:21:55

    The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice. The information is general and may not be suitable for your personal injuries, circumstances or health objectives.

    Intro 1:22:11

    Do not use our content as a standalone resource to diagnose, treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional. Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitation program based on our content if you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional.

    Intro 1:22:34

    If you are experiencing a health emergency or think you might be call 000 if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department medical information changes constantly.

    Intro 1:22:47

    While we aim to provide current quality information in our content. We did not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency, or completeness of the content if you choose to rely on any information within Now content you do so solely at your own risk, we are careful with the links we provide. However third-party links from our website are followed at your own risk and we are not responsible for any information you find there.

    The post Vertebral Artery Dissection & recovery – Amy Wells appeared first on Recovery After Stroke.

    1 hr 24 min
  • Arteriovenous Malformation Recovery – Paul Fink

    While getting ready to go to work, Paul complained of a shocking head, soon after his speech was gone and the next thing he remembers is being cared for by the paramedics.

    Social: https://www.instagram.com/professor_fink/

    Highlights:

    00:53 Introduction

    07:56 Speech Issues after stroke
    16:18 Post-stroke anxiety
    20:51 Professor Fink
    33:05 What’s it like to have aphasia?
    41:18 Stroke recovery goals
    57:05 Post-stroke deficits

    Transcription:

    Paul Fink 0:00

    In fact, this conversation on the phone is more challenging because I think using screens or on the speaking on the phone is more challenging. With me with my brain, I need to see the information, written information to understand if not, I struggle a little bit.

    Intro 0:41

    This is the recovery after stroke podcast with Bill Gasiamis helping you navigate recovery after stroke.

    Introduction


    Bill 0:53
    Bill from recoveryafterstroke.com This is Episode 113. And my guest today is Paul Fink. Calling experienced a hemorrhagic stroke caused by an AVM or an arteriovenous malformation when he was just 34. And has been getting better ever since.

    Bill 1:09

    Paul has started to walk again, talk again, he’s running and driving a car. He still has some speech issues due to aphasia, but this hasn’t stopped him from also taking up public speaking.

    Bill 1:22

    Now has your recovery had to take a backseat due to COVID-19 restrictions? If you’re feeling a little disconnected from your support team due to restrictions from COVID, 19, shutdowns, and lockdowns and you are looking for more support, you may want to consider recovery after stroke coaching.

    Bill 1:39

    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 by a private forum. You have instant access to online training materials that can only be accessed by coaching clients.

    Bill 1:55

    You get access to courses, monthly trainings and challenges made by a stroke survivor. For stroke survivors, you also get expert interviews that are only available to coaching clients, and mp3 which you can download for listening on the go.

    Bill 2:10

    All trainings are transcribed to PDF for people that prefer to read and take notes, or highlight important bits for reviewing at a later time. You also get two live hour long coaching calls per month where you can ask questions and get answers.

    Bill 2:26

    You can access the site 24 hours a day, seven days a week and complete training at your own pace and without needing to leave the comfort of your own home. To find out more simply go to recoveryafterstroke.com/coaching. And now it’s on with the show.

    Bill 2:41

    Paul Fink. Welcome to the podcast.

    Paul Fink 2:44

    Thank you very much.

    Bill 2:46

    Thanks for being here, man. I really appreciate it. You’re a local lockdown person.

    Paul Fink 2:54

    Yeah. Well be okay. Very soon, I guess

    Bill 3:00

    Yeah we’ll be okay eventually can’t go on forever. Paul tell a little bit about what happened to you, man?

    Paul Fink 3:09

    What happened? Well I had a stroke over six years ago I was 34 I was pretty healthy and fit, never had medical problems growing up and I was pretty fit and anyway, I found out after I had a AVM stroke and what happened?

    Paul Fink 3:47

    My memory is all a bit hazy because my stroke was very quick. Basically, it was Friday morning. almost going in the shower going to work. And I was Yeah, I was feeling okay. feeling fine, I guess.

    Paul Fink 4:18

    And my wife said, because I can’t remember saying that. My wife said I have a shocking headache. So but basically all of a sudden, I was sweating trying to speak but my words was not English was very gibberish, I was almost past rational thinking at this stage pretty quickly.

    Paul Fink 5:02

    Luckily, I was at home and my wife was here. And my wife called the ambulance to help me. And I think I remember the paramedics came with my bed. I remember needing water, lots of water, because I was sweating and I was struggling I think maybe half an hour I reckon I passed out at home.

    Paul Fink 6:01

    And I can’t remember after that. I can’t remember waking up after two weeks in the coma. Three or I think three brain surgeries. But I can’t remember. I can’t remember my ICU stay. Vaguely I have memories with the ward at the Alfred hospital. And I think because my wife said, I have lots of drugs in my system.

    Paul Fink 6:52

    So I was partially very confused with the drugs. But I think I was pretty fortunate because I missed everything so and possibly I’m not traumatized with me because I can’t remember and yeah, I think more my wife and my family’s more traumatized.

    Bill 7:43

    That’s really really interesting man. This whole experience that has left you with, I imagine at the beginning aphasia you couldn’t talk?

    Paul Fink 7:52

    Yeah.

    Bill 7:54

    Swallowing issues?

    Speech Issues after stroke

    Paul Fink 7:56

    I think I cant’t remember swallowing issues but mouth I have few issues one stage option two with a Trekkie with a my throat but luckily I avoided it and yeah waking up after the coma. My speech was zero but I’m not aware I was not speaking.

    Paul Fink 8:40

    So I was thinking, always but I thought I was talking also I remember at the Alfred my best friends visiting me And was nice conversation nice laughs laughing and was funny anyway, and I thought I was talking also two way conversation but found out after my speech was zero.

    Bill 9:24

    How long after did you find out? How long did it take before you realized and someone told you that you weren’t actually speaking in that conversation?

    Paul Fink 9:32

    I reckon few months maybe I think pretty sort of weird experience but feel never scared because I was feeling normal I guess.

    Bill 9:58

    Okay so your physical body is not normal, but you’re feeling internally. And in your head. You’re feeling normal.

    Paul Fink 10:06

    Yeah, I was talking speaking normally.

    Bill 10:12

    You couldn’t walk right? You couldn’t walk?

    Paul Fink 10:15

    No, definitely. And I remember one vague memory in Alfred in the ward, I think. And I think I was trying to walk somewhere maybe going to the toilet I can’t remember. Anyway. Lots of cubes in my body, and basically, I tried to walk fell over on the floor. And lots of doctors and nurses running to help me and whatever. But yeah, but I was not aware I was not walking and speaking and all that.

    Bill 11:06

    So, how long after that did you take to actually speak again and start to communicate and most importantly, realize that you are speaking, actually speaking and not thinking you were speaking?

    Paul Fink 11:24

    Yeah, I think after moving to rehab at Caulfield hospital maybe four weeks after the stroke. So, I remember what happened was moving to Caulfield and was thinking I was waiting to move and why the wait?

    Paul Fink 11:59

    I was thinking my wife, Lauren maybe call my folks to come to drive to the hospital or whatever, but basically I need a hospital transport. So, the hospital transport trip one other guy was transport also.

    Paul Fink 12:34

    So, and this guy tried to speak with me. And this guy said, I remember well, this guy said, what happened to you and trying to respond and my words was zero. So I was lost for words literally.

    Bill 13:09

    Yeah, literally lost for words right.

    Paul Fink 13:12

    So after that I found out I’m maybe in trouble.

    Bill 13:23

    So took you on the trip in a in a ambulance transport vehicle. It took you that long to realize that oh actually there’s nothing coming out of my mouth I’m not actually able to talk yet.

    Paul Fink 13:35

    Yeah, I think I’m in trouble and after moving to rehab and seeing my doctors and doctors discussing with other doctors and nurses, all about me, but not to speak with me. But always a little bit isolated the conversation and a little bit anxious because I was thinking this guy is this doctor must be.

    Bill 14:32

    Big road ahead. Yeah? So when you woke up you spent some time in hospital you couldn’t speak you had right side deficits?

    Paul Fink 14:43

    Yeah, Right side

    Bill 14:47

    Right side deficits arm and leg? And that meant that you had to recover both your speaking and your ability to walk. How long did you spend in rehab In total, getting back on your feet in some way?

    Paul Fink 15:05

    Including the hospital and rehab, roughly six months. The doctors trying to discharge a little bit earlier. But I was I’m always going so well with rehab. That the doctors decided extending the stay. I was pretty happy about it. Because I was a bit anxious to coming home.

    Paul Fink 15:45

    Because I was thinking coming on maybe less rehab. Less sessions. But I think yeah, I think overall was good idea staying more time.

    Bill 16:09

    Yeah more rehabilitation give you more chance to be safe inside their place where they help you where they’ve got a lot of support.

    Post-stroke anxiety

    Paul Fink 16:18

    Yeah and I’m a bit anxious to I have two overnight trips before my discharge. Try to I guess maybe reacquaint with my own life and because initially I was thinking at home more anxious because thinking where is the closest doctor In case?

    Bill 17:04

    Yeah, right.

    Paul Fink 17:12

    Yeah, I said, I’m not much traumatized, but I am a little bit traumatized with the, I guess Anxiety coming home.

    Bill 17:23

    Yeah. And it’s about what happens if it happens again? How will I be able to get help? Who’s gonna be around to help me out?

    Paul Fink 17:32

    Yeah because I’m almost 10 months after the stroke my wife drives me to the Alfred my home and not myself. So I was pretty anxious driving further. For example, we had a two days trip at Mount Martha. Maybe one year after my stroke, and I was a bit anxious to drive same feeling.

    Bill 18:21

    My wife organized the trip for us overseas about a year after my stroke. And that was really hard because we were going to go to New York. And I didn’t want to go because I was afraid. I’m what happens. I’ve heard all the bad stories about you know, New York about American hospital system and all that type of thing.

    Bill 18:49

    And my thoughts were what if something happens and I’m there, and I can’t get back home quick enough or I can’t get hospital care, wasn’t gonna cost If I have to go to hospital with a will like, give me a bill for $100,000 or something. Yeah, we went and it was okay. But it was on my mind the whole six weeks that we were away it really played on my mind.

    Paul Fink 19:14

    I think it’s very similar I guess any trips and extending myself and if I survive and I’ll be more relieved and less anxious after that.

    Bill 19:32

    Did they remove the faulty blood vessels in your brain the AVM is gone now?

    Paul Fink 19:37

    It’s gone. Luckily.

    Bill 19:39

    Yeah. Which means it will never bleed again now it’s completely gone, like me that was a relief after they took it out because now I know it can’t possibly bleed again. It’s not there anymore.

    Paul Fink 19:52

    So true. I think I had an angiogram after eight months after my stroke and before I was pretty anxious because recurring strokes and whatever but after the angiogram and the confirming the I will be all clear. I was so relieved and almost turn the corner with my rehab.

    Paul Fink 20:30

    Because after that is the worst case you will be tired or, but never not more other strokes. So, again, I’m still very fortunate.

    Professor Fink


    Bill 20:51
    Yeah, absolutely. In your Instagram, your Instagram says your Instagram is professor Fink. Are you a real professor?

    Paul Fink 21:02

    No. Definitely not.

    Bill 21:08

    How did you get the name Professor Frink?

    Paul Fink 21:13

    Basically, my English teacher was a funny and zany person. Mrs. Scott decided every pupil had a nickname. So mine was Professor Fink for example, other pupil was, doctor, I was professor. So, sometimes school friends use it professor so not sure why with Instagram.

    Bill 22:04

    It’s awesome man. I love it. I love it.

    Paul Fink 22:07

    Nothing to do with medical. My wife is a physio luckily, because Lauren she’s more medical oriented, I guess. Luckily, Lauren’s background is very beneficial with me because my understanding is sometimes is lacking. But, Lauren always translates with doctor’s conversations.

    Bill 22:45

    In normal language?

    Paul Fink 22:47

    Yeah, exactly. So I was working with full time with IT with computers, nothing to do with professors.

    Bill 23:05

    How long are you back at work? Are you working in your field? Or have you changed fields? What kind of work you do now?

    Paul Fink 23:13

    Yeah, still not working. I guess my recovery is ongoing. And good chance I will never fully recover. But that’s fine. It’s fine for me. But I’m keen to work on the feature. I guess I’m still smart. I guess.

    Paul Fink 24:00

    But, I guess I have limits with my aphasia, medication, mobility. But also, I was I said I was working with I’d say, but I was I guess I was trying to get a good job. Any job. Yeah. But I was never passionate with my career.

    Paul Fink 24:36

    I’m not knocking IT, but I never found the perfect role for me. So and yeah, that’s why I’m not working still. But my wife always said pre-stroke I said I’m always a hands on dad.

    Bill 25:15

    So you can be, daddy daycare kind of guy.

    Paul Fink 25:22

    Exactly.

    Bill 25:24

    Sounds good, man, nothing wrong with that, that’s amazing. I actually enjoyed being at home more when I was recovering from the bleeds in my brain and then the surgery because I was around the kids more.

    Bill 25:38

    So I was at home when they came home from school. When I started to drive, I would take them to school. So it was really good because I had more time at home, which I’d never had in 37 years, you know, in all the years that I was working, I was always the one who was away from home and my wife was the one that I was always doing pickups and drop offs and all that kind of thing.

    Paul Fink 26:03

    I’m so fortunate because my oldest son was 7 months after my stroke so very fortunate because my son can’t remember my stroke and I have two sons now and I guess dad me is normal I guess because no other comparison.

    Bill 26:40

    So no trauma about your stroke and what happened to dad and oh my God, we nearly lost him and none of that stuff.

    Paul Fink 26:48

    Not really. My son is more curious with more strokes now. And possibly a little bit anxious because Dad had a stroke but (inaudible) yeah, I think I’m very blessed not almost six years not working because lots of time with my family and dropping off and picking up I’m driving now so more independence.

    Paul Fink 27:42

    The stroke is a life changing experience with me but I feel my manner or attitude I guess, always very positive pre-streike anyway. Always very positive. So I guess my attitude is I had a stroke and I can’t change the past so move forward and I was listening thing with other podcasts recently and pretty similar.

    Bill 28:46

    Outlook Stephanie Ho you mean?

    Paul Fink 28:49

    Yeah and I think she said similar thing you can’t change the past.

    Bill 29:05

    Yeah, I know what you’re saying Stephanie was on episode 102. She’s an extremely positive person. She just talks about moving forward, the future recovery. She’s been recovering for 10 years. And recovery is still continuing, and it’s still ongoing for her. And she’s getting better and better.

    Bill 29:23

    And it sounds like you’re getting better and better as well. And you had aphasia. Your speech is really good. As far as I’m concerned. Like, it’s fine. You can communicate normally. But tell me, like with aphasia, because I don’t completely understand it, and a lot of people might not.

    Bill 29:43

    Is it just the words that you have trouble getting out? Is the thinking the same? Is it normal? Is it always kind of happening as it always has? And it’s just the words that don’t come out. How do you experience aphasia?

    Paul Fink 30:01

    Lots of elements I guess one is, can’t find the words. The thinking is always there, saying it out loud is more harder. And the aphasia is infected with different loss of passes my memory, for example, I mix up with similar objects.

    Paul Fink 30:48

    For example, I mix up my kids names.

    Bill 30:55

    Everyone does that Paul I used to do that. My kids are 24 and 20. And I still get them mixed up. And they always roll their eyes or just ask are you having another stroke like what’s wrong with you, man?

    Paul Fink 31:10

    Yeah, I think for example, pass me that fork and my son Dad it’s a knife. I said oh yes, so similar objects, Knife to fork and spoon is similar objects.

    Bill 31:35

    Is it getting better? So do you notice that some days the speech is better than other days and what is it affected by? Is it when you’re tired? Does it get a little bit harder?

    Paul Fink 31:50

    Yeah, yeah, definitely is more challenging after being more tired.

    Intro 32:02

    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 make matters worse, doctors will explain things, but obviously, you’ve never had a stroke before, you probably don’t know what questions to ask.

    Intro 32:26

    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 seven questions to ask your doctor about your stroke.

    Intro 32:46

    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.

    What’s it like to have aphasia?

    Paul Fink 33:05

    In fact, this conversation on the phone is more challenging. Because I think using screens or on the speaking on the phone is more challenging. With me with my brain, I need to see the information, written information to understand if not, I struggle a little bit.

    Bill 33:43

    So if you can read something that’s easier for you to take that information in, then just by watching a movie or by listening, is that what you’re saying?

    Paul Fink 33:55

    Yeah, definitely. And, in fact, recently Sometimes watching a movie or a show. I love using English subtitles. Okay? Because I miss a few words and not sure, I can’t understand it. So subtitles is easier.

    Bill 34:32

    That’s amazing because I have the opposite. Words don’t do me any favors I can’t get information off a page. If I’m watching a video that is the best for me if I’m watching the video and trying to read subtitle that’s really distracting. That bothers me a lot.

    Bill 34:53

    So I can’t deal with words I have to watch a video or listen and I think I prefer to watch a video because when I’m listening I get easily distracted with a video I don’t get distracted. I see what’s happening and I hear the sound at the same time.

    Paul Fink 35:12

    Yeah, so interesting because I love listening on the radio and but listening on the radio even including podcasts and whatever. I enjoyed it. But sometimes the information is in and out quickly. I can’t process quickly to remember it.

    Bill 35:48

    Yeah. So, when I listen to audio books, because I prefer to listen to audio books instead of read the book. That information seems to stay around longer for me, then the information that I’ve read on the page. Yeah, reading it often I have to go back many times to read the same paragraph. But hearing it, that information goes in better.

    Paul Fink 36:17

    Yeah, that’s, well, I guess any stroke is different. So, my problem is unique or very common.

    Bill 36:31

    I’d say what’s happening with you is common. for other people. There’ll be many people that have the same experience as you. It’s just interesting. It’s definitely every stroke is different for every person, you’ve been recovering for six years. And how long did it take you to get back behind the wheel of a car?

    Paul Fink 36:56

    Two and a half years. My wife was pretty shocked with the progress I was pretty shocked myself because after the stroke I have few issues with my left eye, what happened was after the stroke one eye bled so I was see with one is fine other eye is little bit blurry.

    Paul Fink 37:57

    The problem is I was not speaking So I can’t tell anyone with my problem and eventually with my wife with a sort of guessing game describing my problem basically one eye was blurry, can’t see well, so, maybe I was in a hospital maybe during roughly I started to walk after four months and basically I had a minor eye operation and basically fixed the eye properly and after that my eye was fine, but saying that other problem occurred.

    Paul Fink 39:06

    There was a little bit tunnel vision, sort of looking straight is okay. But looking on the side. Very hard to focus on the sides quickly. So, I was a little bit nervous to learning to drive with this problem, but sort of resolved pretty quickly maybe two years.

    Bill 40:03

    You’re eye got better and the tunnel vision went away?

    Paul Fink 40:06

    Yeah not fully but pretty quickly and yeah, I think driving was a pretty big milestone with my independence obviously with kids because my goals was to try to, I guess being normal as possible and driving with my son will be and driving to school, is a big part of my motivation to get better.

    Stroke recovery goals


    Bill 41:18
    Sounds good, man. It sounds like you’re, you’ve got some goals. You’re working towards them. You’ve achieved some really big ones. And you’re still achieving more goals. Because I noticed on your Instagram, you’re doing running. How long has it been since you started running again because I remember commenting on one of your posts that you looked like you were running because you had stolen something and they were chasing you.

    Paul Fink 41:44

    Basically, I was after the strike was we will chip down for months. And first goal was learning to walk, learning to walk was was a big milestone. And I use aid, afos initially and walking cane after that, removing the afo and walking cane and eventually sort of on backtracking but I love running pre-stroke my passion was running or is because running is my sort heavy place, I think clearly with running.

    Paul Fink 43:19

    But I have a pre-stroke issue injuries with my knees prevent to run. So, it’s a long story but um maybe three, three years or three and a half years after my stroke and I was doing well improving my mobility I found out this program at the hospital with all that high intensity running group.

    Paul Fink 44:07

    So the guy the physio Gavin Williams was a, I guess the guru in this area with neuro and I start to this program. Initially I was not running yet. So I have lots of drills preparing to run lots of mini tramps and stairs and lots of exercises and maybe 10, 11 months after that technically, I ran.

    Paul Fink 45:04

    I was using a AFO because I was not using AFO at home around the house but only only this program and I started just 10 meters and stop and start it again. Whatever. I guess very common with stroke survivors is repetition.

    Bill 45:40

    Yeah. And slowly slowly and then increasing it and then increasing it by a little bit.

    Paul Fink 45:47

    Yeah. And eventually I guess I started running further. And removing the AFO was a big thing also. And every mini milestone will be good will be nice. Exciting, I guess.

    Bill 46:31

    So how far do you run now? So how long has it been since you started running? Did you say?

    Paul Fink 46:39

    Ah, I was. I think 2018.

    Bill 46:47

    So it’s been about two years. So how far do you run now? And how long do you run for?

    Paul Fink 46:55

    The most run with not stopping was 400 meters. So, obviously for normal people 400 meters, not that much, not only one lap at an oval. With my one side paralysis it was a huge thing 400 meters.

    Paul Fink 47:33

    And I’m still going with my running group now and now my more interval training. So more cardio so for example run hundred meters and stop 10 seconds and start again and stop, and helping with a height right and with COVID I guess is more tougher because I can’t see my physios.

    Bill 48:18

    And your trainer, and you’re running group as well yeah?

    Paul Fink 48:22

    Yeah but I think i’m achieved with I can do myself now so I go to the local parks and I run and always better with other people.

    Bill 48:41

    More fun.

    Paul Fink 48:43

    But saying now I enjoy listening with my headphones and motivational music and whatever.

    Bill 48:54

    So do you find your happy place again in that time when you’re running is it going back there?

    Paul Fink 49:01

    Good question because I started to run maybe few years ago. But the feeling was very different versus normal running because I was running not freely. But more than few months ago only, I try to feel a little bit more natural and feeling the same amazing feeling to run again.

    Paul Fink 49:47

    Not, freely, fully nowhere near but I guess more freely more faster. I Guess.

    Bill 50:00

    So what you’re saying is slowly, slowly you’re because this was my experience and I don’t run Paul, I’m not interested in running. That’s where we’re different hundred percent. But when I do run, it’s to run across the road or to get away from the car or you know, just to mock around with somebody to run after them just for a bit of fun.

    Bill 50:07

    I don’t run as for any other purpose, but when I started to rerun, I had to focus where my foot was landing and that made it really difficult and really tiring. Is that what your experience was when you have to focus so much? And now are you starting to focus less on where your foot goes and you’re just doing it instinctively?

    Paul Fink 50:52

    Bang on basically, initially I was very scared. rolling my ankle all the time, especially not using the AFO. I’m using the soft ankle brace basically almost similar to basketball players use more support I guess. But not AFO not hard. And yeah it was I rolled my ankles so many times and one sense was lucky because my sensation is so much poor I can’t feel my ankles.

    Paul Fink 52:02

    But I can’t control my ankles. So it sort of with repetition more and more I trust my legs and more level ground because I have a bit inversion issues basically my ankle rolls up easily rolling my ankles.

    Paul Fink 52:38

    But i’m pretty cautious I never feel, once it rolled badly only sore maybe one or two days but now I’m more and more confident. But saying that I’m anxious to walk with uneven grounds. For example, last year, and my physio and me went to the 1000 steps it was beautiful spot.

    Paul Fink 53:32

    And I was thinking about going there may be testing it out. unlikely to climb all away. So my physios try to stop Paul stop. But I was thinking, I’m feeling pretty good. And we climbed all the way and it was a nice feeling.

    Bill 54:03

    Been up there I went there. As I got to the top, my left leg started to get heavier and heavier and it was a bit harder. So I had to pay attention to where I was putting my foot and make sure that it was above the steps or I would have tripped over. Is that what was happening to you as well?

    Paul Fink 54:25

    1000 steps is a little bit different I guess walking but steps.

    Bill 54:39

    Yeah. up. Like you’re climbing like steps in a like in a house?

    Paul Fink 54:48

    Yeah, so versus ramps I guess. But I’m pretty good. a hard pill. But coming down is more challenging because other other muscles not firing yet. Especially with my quads and hammies sorry my quads is firing well sorry, the hammy is not firing at all. Not much. So coming down is more with gravity is more careful to roll down I guess.

    Paul Fink 55:38

    And coming down the 1000 steps some paths with no railing, basically I sit down on the floor not kneeling, but almost one, step down, down down on my bum.

    Bill 56:06

    On your behind. Yep. Okay.

    Paul Fink 56:08

    Yeah. Because it’s the only way or other option is sideways. So because I’m, for example, my home has a double storey house. And after discharging the railing is the only one side. But coming down almost three years, maybe two and a half year I use sideways method coming down at home.

    Paul Fink 56:54

    Yeah. And I was, I guess resisting home modifications.

    Post-stroke deficits


    Bill 57:05
    We’ve got an upstairs as well but my bedroom is downstairs. So for the first three or four months after surgery, I didn’t go upstairs, I did use the stairs for rehab. So my physio came over and he taught me to step 1 2 3 steps up and then 1 2 3 steps down.

    Bill 57:25

    That was to give me a little bit of start getting the muscle tone back on the left side. And it was safe because I could hold on. And it was only three steps and I wasn’t going to go to the top. I was doing that as an exercise. But I didn’t actually go to the top of the stairs because I was afraid of falling and my knee used to buckle because I’m not sure why the knee used to feel like sometimes it would just give way It must have been one of the muscles, maybe either the quads or the hammies.

    Bill 57:56

    I did I never asked for why it was happening. So I stopped. So I stopped going up the stairs. And then I remember coming down the stairs focusing really harder, a lot harder focusing where my foot was landing and being very slow and holding on to the railing in case I lost my balance. But then if the railing was on my left side then it was a problem because my left hand couldn’t grip very well.

    Bill 58:32

    And I was afraid on my left side so I had to try and find stairs where the railings on the right side and always take the right railing. Yeah, that so are better with time. So did you find yourself feeling more and more comfortable coming down the stairs from your house now without your bum?

    Paul Fink 58:52

    With level ground? Yes, but uneven ground is still a problem. I guess one goal beside running is I like hiking. So 1000 steps is similar to hiking. And so talking with my orthotist special brace with specifically hiking and this brace physically can’t roll the ankles. So more safer, I guess. Because at the 1007 I use my soft ankle brace. The ankle brace is pretty good with stability, but not fallproof, so I can roll my uncle.

    Bill 1:00:00

    That’s interesting man as we’re coming up to the end of the episode, so what is the future? Looking like for you? What are your next few goals that you want to achieve or get better at?

    Paul Fink 1:00:18

    Good question. Our hope will be still always motivation to get better. And try to, I guess being a role model with my kids. To work on the future, I started public speaking a little bit. And I’m liking so far, possibly not full-time roll on feature, but I’m definitely continuing public speaking because I guess people like my story. I’m not sure why?

    Bill 1:01:35

    You’re a likable guy man you’re alright.

    Paul Fink 1:01:44

    But other goals I guess improvie my running, hiking, improve my mobility I still go with my speech therapy and OT and physio to improve my physical and mental abilities that will be more ready to work.

    Bill 1:02:34

    That’s perfect man, that’s perfect for now. You know what will be fun is if you’re up for it and we ever get out of this lock-down, maybe one day I’ll come up to your place and we can go to a cafe and you can buy me a coffee.

    Paul Fink 1:02:52

    Yeah, I’ll be a coffee you choose.

    Bill 1:02:58

    Probably a coffee mate.

    Paul Fink 1:03:03

    Yeah, sounds excellent idea.

    Bill 1:03:08

    Paul Fink thank you so much for being on the podcast.

    Paul Fink 1:03:11

    Thank you very much. Bill.

    Intro 1:03:13

    Discover how to heal your brain after stroke go to recoveryafterstroke.com.

    Intro 1:03:23

    Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. The opinions and treatment protocols discussed during any podcast are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.

    Intro 1:03:40

    All content on this website at any linked blog, podcast, or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis.

    Intro 1:03:53

    The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice. The information is general and may not be suitable for your personal injuries, circumstances or health objectives.

    Intro 1:04:08

    Do not use our content as a standalone resource to diagnose, treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional.

    Intro 1:04:17

    Never delay seeking advice or disregard the advice of a medical professional your doctor or your rehabilitation program based on our content. If you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional.

    Intro 1:04:31

    If you are experiencing a health emergency or things you might be call 000 if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department medical information changes constantly.

    Intro 1:04:44

    While we aim to provide current quality information in our content. We did not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content. If you choose to rely on any information within our content, you do so solely at your own risk.

    Intro 1:05:00

    We are careful with links we provide however third party links from our website are follow that your own risk and we are not responsible for any information you find there.

    The post Arteriovenous Malformation Recovery – Paul Fink appeared first on Recovery After Stroke.

    1 hr 6 min

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