Stroke with Jo Aurora, Stroke UK and Hayette Wilkinson

Speaker Key:

VO      Voiceover

CB      Chantal Boyle

PS       Paul Shriever

JA       Jo Aurora

HW     Hayette Wilkinson

00:00:00

VO      

Welcome to The Sunflower Conversations, where we explore the Hidden Disabilites Sunflower and its role in supporting people with hidden disabilities.

CB      

Welcome to The Sunflower Conversations with me, I’m Chantal, and with my co-host, Paul Shriever. How are you doing, Paul?

PS       

I’m very well, Chantal.

CB       

So, our conversation today is all about strokes, and we are joined by Hayette Wilkinson and Jo Aurora. Hayette, at the age of 32, had a stroke, and has since been on a long journey of rehabilitation and recovery. Jo joins us from the charity Different Strokes to explain what a stroke is, what the signs are, and what action to take, as well as some advice and support available to patients. 

We have a couple of questions submitted by Sunflower Friends, which Jo will get to at the end of this podcast. So, Paul, you’ve had some significant health impacts in your life, and, as a consequence, you experienced two mini strokes, didn’t you?

00:01:30

PS

This is something that’s quite close to me in terms of how it’s impacted me through my life, certainly in the last ten years. In my thirties, I had a bit of an episode at work, and I won’t go into the details about it, but I was up in London, where I used to commute and travel to and work, and I ended up in the UCLH, and it transpired that I ended up having a collapsed heart valve, and I had a minor stroke which was triggered by this. So, yes, this is something that really interests me, as well, and it’ll be interesting to hear what everybody has to say about it.

CB      

Yes. Well, Jo and I had a little chat before, and I believe that 100,000 strokes occur in the UK each year, which seems to be significant number. And one in four of these occur in somebody of working age or younger. So, I think, I don’t know, stereotypically, we might think of maybe our nan or granddad suffering a stroke, and Hayette obviously is here, and you are, Paul, it happened to you when you were actually quite young of age. 

So, you’re both stroke survivors, which is great, and we’ll find out a little bit more about it as we journey through our conversation today. So, Jo, thanks so much for giving up your time to come in and enlighten us today. 

00:03:12

JA       

Thanks for having me.

CB

We do appreciate it. So, what is a stroke, I guess? That’s the first question. And then, what impact can they have?

JA

So, a stroke is a disruption of blood flow to the brain. There are two types. So, there’s an ischemic stroke, which is a blockage of the blood vessel, and second is a haemorrhagic stroke, which is where the blood vessel ruptures to cause bleeding. So, the disruption in that blood flow to the part of the brain affected causes those brain cells to start dying, and that happens within minutes. So, that’s why it’s really important to get help as quickly as possible.

So, the impact of the stroke, it’ll be really different for everybody, because it all depends on the part of the brain that was affected, but the effects can be wide-ranging. So, from physical, cognitive, emotional, sensory, fatigue, pain, swallowing problems, bladder and bowel function. 

And people can have a combination of all of those. And they might only have one, they might have all of them, and the level of severity of each of those can also be different. So, no stroke is the same. There are the common side effects that people are often aware of, and that’s like the one-sided weakness, but it’s important to know that it’s not just those visible effects.

00:04:49

CB      

I think that’s really important to point that out, actually, because I think that, again, is one of the best misconceptions, is that you become really paralysed on one side of your body, and it doesn’t progress any. That’s it, as such. But you’ve literally covered the full spectrum of how a body operates there. Obviously, that makes sense, because it’s your brain. And I think that I hadn’t put two and two together, which is silly of me. But it was when you said that the cells start to die during the stroke. So, are they ever replenished, or is that all about fixing the neural pathways?

JA       

Yes, so, those cells never recover, but your brain is very clever. So, there’s something called plasticity, so the wiring in your brain will find new pathways to try and reconnect those functions. It doesn’t always happen. It might partially happen. So, yes, the brain can rewire itself to a certain degree.

CB      

It’s overwhelmingly crazy how the brain is so intelligent, and what it can do, and what it can prevent us from doing, but also that there is sometimes the hope of the recovery and the rehabilitation.

JA       

A lot of hard work, but stroke survivors can regain some function in some areas. And that can go on for years. It’s not a plateau, which is quite often discussed, that a certain timeframe, and after that you can expect no recovery. That isn’t something that we hear. We hear people say that years later they can make some progress.

CB      

And the incidences, 100,000, is that a number that’s remained fairly static in recent years, or do you see an upturn in that number?

00:06:58

JA       

Rising. It is going up every year. We can’t be certain why that is.

CB

Because I saw on your website that babies can have strokes.

JA       

Yes, anybody can have a stroke. Any age.

CB      

And is there an at-most-risk age, an age group at most risk? I don’t know if I’ve said that correctly, but you know what I mean.

JA       

Yes, I know what you mean. It does naturally increase as we get older, and just wear and tear on the body, and over time your arteries can weaken. So, it is more common in older people, but it does still happen to anyone at any age for various reasons.

CB

I guess that’s a good point to bring Hayette into the conversation, so that she can share with us how many strokes have you had, and did you know what was happening to you at the time?

HW

I didn’t know what was happening at the time, because I was unconscious most of the time. I had two strokes. I had first a subarachnoid haemorrhage, which is bleeding in the surface of the brain. It is very serious. Life threatening. You need emergency medical treatment. And roughly a third of subarachnoid haemorrhage patients can die immediately or soon after. So, I’m very lucky to still be alive.

00:08:30

And there are multiple causes, as per usual. And for me it was due to hypertension, high blood pressure, and it can happen at any age, like Jo said. Even babies can have strokes, and people don’t know it’s a stroke.

CB      

So, that’s what hypertension is. Hypertension is high blood pressure.

HW

Yes. And also smoking or lack of activity. And I was 33 years old, but it’s more common in people from age 45 plus. And then, the second stroke that I had was an ischemic stroke, which happened to me a few days later after my subarachnoid haemorrhage. So, it’s the most common type of strokes, which I think Jo mentioned already. It happens when there’s a blood clot that blocks the flow of the blood or oxygen to the brain, and these blood clots typically form in areas where the arteries have been narrowed and blocked over time by fatty deposits like plaques.

I have four brain aneurysms, and one of them ruptured, which made my state get worse and worse. I was very unlucky. As you know, for quite a long time, I was in hospital. I was just unlucky. But I’m happy to be alive.

CB

Yes, unlucky but lucky, in a sense, because we’re lucky to have you here and being able to tell the tale of what happened.

You are listening to The Sunflower Conversations with Chantal. To learn more about the Sunflower, visit our website. Details are in the show notes.

So, Paul, do you think that’s what you had, an ischemic?

00:10:16

PS

I think it sounds to me something similar to that. I think it’s really interesting to hear what you guys are saying, because what is very clear here is that the scope, the breadth of how a stroke can manifest is massive, it’s broad. So, it can be something that actually can go undetected, so it could be something that’s very mild. But also, the flip side of that is, it can be absolutely catastrophic and can be fatal. 

So, some people can actually… My mother, when she was getting very old, had multiple strokes, and I think some of them she had, and then she carried on, and she just thought it was like a bad episode, or she was having a headache or something, like Jo was just describing. So, that’s just to me a very interesting point. 

And I think how it manifested with me was that I had issues with my vision, and I felt like I couldn’t move, and there were other symptoms which came into it, and that scared me. And so, I rang up my GP, and he said to me, you need to be not contacting me. You need to be going to A&E. And so, I was like, wow, okay. So, I then walked round the corner and went in, and they admitted me, and I was in there for days.

CB      

Can you describe what was happening with your vision, just out of interest?

PS

It’s something actually I still suffer from, but I think it’s to do with the fact that I’ve had issues with my heart. But I have hotspots and I couldn’t see properly out of my left eye, and I had numbness on my side and did not feel right. I felt lightheaded and just not myself. So, that was the symptom that really frightened me, and it wouldn’t go.

00:12:04

CB      

Well, thank goodness you had that, so you were able to get round. And Hayette, you didn’t have any warning symptoms that you can recall?

HW     

So, I don’t remember anything prior to my stroke, because I rely on my husband to tell me everything. And he said I was in a virtual work meeting, and I had a serious headache, so he called an ambulance. And after I lay down, I was not feeling better. I have no recollection about what happened to me. It’s usual for the brain to not remember the trauma or the bleed in urgent treatment, because my brain wasn’t working properly. I have later memories of my early stay in hospital. 

But my stroke was severe, because I had to go to intensive care to manage my stroke. I have cognitive impairments. My right toes and ankles are paralysed, and there is damage to my brain demonstrated in my follow-up scan. But I would say each time you go to the hospital, ask, insist for a CT scan so they can check your brain.

CB      

Okay, CT scan.

HW     

Yes, CT.

CB      

Out of interest, how often do you go for a follow-up?

HW     

Yearly. And when there’s a malformation, you can go again.

00:13:16

CB      

So, for you, the warning was this severe headache which then triggered your husband to get in touch with the ambulance. I guess if you’re somebody who does unfortunately have migraines, you might not realise what was happening there, would you?

PS       

Precisely.

CB      

And you’d go to bed.

PS       

Because you’d never had one before, right? That’s the other thing. Hayette clearly hadn’t had a stroke prior to that. So, you’re just thinking, I don’t feel great. You don’t see that as something that is coming as serious as that, do you?

HW     

No, never.

CB

So, Jo, are there other warnings that people experience? I know that there’s the acronym. Is it FAST?

JA       

FAST, yes. That is a good starting point, and that’s really important. So, that’s F for face drooping. A for arms if they’re unable to lift one of their arms. S is for speech. So, it’s not only slurred speech. It could be they’re speaking, but it’s not making any sense. And T for time, so, that’s the importance of calling an ambulance as soon as possible. Like we said earlier, the longer the brain is starved of oxygen, the more damage is done.

00:14:39

But we also try to raise awareness of other symptoms. So, as Paul mentioned, visual disturbances. So, that could be flashes, part of your vision field going, seeing double. And there’s also balance, so, stumbling, not able to stand. Vomiting is quite a common one, and sudden severe headache. So, they’re really important especially in young people, because they are quite often assumed to be drunk, because they’re young, they’re stumbling around throwing up and got a headache. They can be just passed over as being drunk. 

So, it’s really important to know about those separate symptoms. So, our acronym is BEFAST, so, balance, eyes, face, arm, speech, time. That’s quite a lot to remember.

CB      

Yes, so, let’s just say that out clearly. So, it’s BEFAST. So, B is balance.

JA       Balance. E is eyes. F is face. A is arm. S is speech. And T is time.

CB      

And just to be clear, it wouldn’t necessarily be all of those things.

JA       

No. It could be one. It could be a couple. So, if somebody is just vomiting, then you probably wouldn’t even think that it might be a stroke. But it’s just to have that in the back of your mind, that that is a possibility.

CB      

This is one of the issues with the job that we have, is that sometimes I’m talking about things, and I think, oh my gosh, did that happen to me? But when I was a teenager, I had been partying quite a bit. I was a really young teenager, but old enough to party. And I had this experience where I just went completely blind. Couldn’t see a thing. Nothing. Everything just sort of went completely white, and then it was black, and I couldn’t see anything, and I kind of went into panic mode, and then I vomited, and then it seemed to clear it. So, I don’t know whether that was anything to do with what we’re talking about here, but…

00:17:01

JA       

You just never know, really. But it’s possible. Yes, it could’ve been a passing TIA.

CB      

Yes.

JA       

You’ll never really know. Or it could’ve been something completely different.

CB      

I remember thinking, oh my god, my mum’s going to kill me.

JA       

That [unclear] you out of partying so much, maybe.

CB      

Well…

JA       

Or not?

CB

Well, it was where I was. I was on a campsite, and it was a bit weird, anyway. I was a long time ago. So, if that was happening to my husband, any of those things, I need to get on the telephone to A&E.

JA       

Call an ambulance. Better to be safe than sorry. If it turns out that it was a bit of food poisoning, then it doesn’t really matter. And you know your loved ones best. You know what’s probably a bit out of the ordinary, and you just get a gut feeling about these things and just trust it.

00:18:06

CB

And would I get them to just sit down, lay down, recovery position?

JA       

It depends. If they’re unconscious, yes, definitely recovery position if you know how to do that. But yes, just get them to sit down if they’re conscious, and just mention that you are worried it might be a stroke to the paramedics, so they can check for that.

CB      

Okay. And just out of interest, what is that procedure? So, obviously, it’s something, really, that only the hospital can try to help and fix. What do they do if they know it’s a stroke?

JA       

There’s a couple of things. So, there’s a clot-busting drug that they can give you. I believe there is a new initiative where the paramedics can deliver that, but I’m not 100% sure. But otherwise it would be into A&E, and there’s also a procedure where they can go in through your leg vein up into the brain, and they can actually retrieve the clot and pick it out, which is a wonderful thing.

CB

Wow.

JA       

Yes, so, if it’s done quickly enough, it can completely cure you. You can recover from that stroke. 

CB      

That’s why time is so, so important.

JA

Yes, exactly. It’s really important.

00:19:31

CB      

And Hayette, I know that when you were in hospital, you had to have operations on your skull and have fluid drained out, didn’t you? Can you tell us a little bit about that?

HW     

So, I had two types of surgery. The first one to coil my four brain aneurysms, and they used a platinum metal to coil them, to insert them, and then fill up the aneurysm. That was a success, but then my state deteriorated, so they realised that it was even more severe. So, they used a drain, inserted something in my skull to drain the extra fluid to remove the pressure on my small brain. It’s been tough, yes, but I’m alive.

CB      

Yes.

HW     It’s important.

CB      

It is the most important thing. So, can you share with us what your life was like prior to having a stroke, and then the things now that you have had to relearn to do.

HW     

So, before, I used to be quite active. Very active, driven, and organised. I used to go a few times a month to reformer Pilates to get a great body, but mostly feel good. And I used to look after our son, who was a baby, a tiny, tiny wee baby. And I used to work hard while being a good mother. And I used to put a lot of things on myself, and I used to be able to organise trips and meetups easily, but it’s not the case anymore, because it just takes me longer to do most things. I just need a little extra time.

00:21:19 

I had to relearn how to eat with cutlery, how to use a pen, how to make a tea, everything basically I had to learn again. But now I’ve improved just doing practice, practice. You can do it. Yet, the magic word, yet.

CB      

Yes. And having that determination to want to get better, is that one of the five reflexes? Fly, flop, freeze kind of fear. In that you don’t know what kind of a survivor you’re going to be until you’re in that position. Because you’ve mentioned it’s hard work. Jo has mentioned it’s hard work. And I guess you don’t know how you’re going to deal with this massive mountain that you’ve got to try and climb to try and get back to some semblance of your former self.

HW     

Absolutely.

CB      

What was it like when you went to eat something, and you saw a knife and fork? Did you remember what a knife and fork was, but you weren’t sure what to do with them?

HW    

How to use them, yes. Because when I was in hospital, I used to eat with my hands, or there used to be always a nurse or a carer to feed me like a baby. And then they taught, because I’d be like, even using a fork and a knife, how do you use them? I used to hold the knife wrong, and then an occupational therapist showed me how, and now I can do it. It’s not elegant, but at least I don’t eat like a wolf with my hands.

00:22:58

CB      

But you and your little boy, Aidan, who’s still very young, have been learning together.

HW    

He was 14 months old, and when I got back from the hospital, he was around two. I think about two. And I said in the previous Instagram live, that initially he was very cold with me, because he quickly realised I wasn’t the same mother, the same person. It took us one year to go back to an agreeable relationship. Sometimes he snuggles me and kisses me. I’m like, oh my god.

CB      

That is the most difficult thing, I can imagine, to feel apart from your child.

HW     

Yes, because I was in hospital for eight months. And I thought, yes, I’m discharged, I’m strong. But I wasn’t strong, because then I had the community therapist, I have occupational therapists, speech and language therapists, and physiotherapists who came to my flat and taught me how to do these things.

CB      

Paul, when you had your major health crisis with your heart and your strokes, your children were young, as well, weren’t they?

PS       

Yes, they were. I ended up in hospital for months, because I had to have open-heart surgery, and that impacted us in a huge way, and it put huge pressure on my wife, who was looking after three young children. So, yes, it’s a huge thing. And actually, I would imagine Hayette, for all that she’s going through, which is a huge upheaval, it also ripples out and affects her poor husband and all her family and dearest loved ones around her. 

00:24:48

So, it’s massive. It’s a big thing. And you talk a lot about just how that alone impacts you in life. And actually coming out of that, and I’m sure all the legacy and how that manifests in terms of the symptoms that you then adopt and pick up, and how long it takes to come out of that, even if you ever do, coming to terms with it, with the medications and all the other parts which add up, and how that affects you, is huge.

CB      

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You’re taking anti-epilepsy drugs, aren’t you, Hayette?

HW     

Yes, I do. I don’t know why. I asked many times at my brain injury clinic, why am I taking this? And according to my medical records, I did have epilepsy, no-visible epilepsy, when I had no visitors. And now I’m taking it constantly to prevent me from having another seizure as my role of mother for my son. But it’s tough. Like Paul said, very tough. People don’t understand what it is.

PS       

Hayette, is it something you’ve been told could happen again? Could it reoccur? Is it something you have to be very mindful of now in terms of how you conduct your life and how you live? Do you have to change what you’re eating, what you’re doing? Has everything changed? Your diet? The impact must be huge.

HW     

Yes, it’s huge, massive. Yes, a little bit, but also I did some digging of mine, because Miss hyperactive. And eating healthily, being active, and try to always psychologically flip it to the positive side, like I said before. I try to always take baby steps. Even if you can’t do it, use the magic word, yet. And with that, I’m able to get better and better. I’m a survivor just for being alive. I’m enjoying celebrations. Picking up my son…

00:27:06

CB      

Going to the toilet?

HW     

Yes, going to the toilet is one celebration.

CB      

Celebrate the small wins.

HW     

The small wins, yes. Making a cup of tea, I can do it, yay. Washing the dishes, yes, I can do it.

CB      

Yes, things that I take for granted.

JA       

Be happy doing the washing up next time.

PS       

Yes.

CB      

Yes, exactly. And gratitude is something that’s spoken a lot about. Mindfulness has really come to the fore, I think, hasn’t it, of people looking after their health and their mental health and physical health. And I think gratitude is something which I don’t think was probably even really mentioned about ten years ago, but it’s gratitude for those small things, and I think you can get mindfulness. 

I’ve heard people talking about that they can experience mindfulness whilst washing up, feeling the soap suds, feeling the water running through their hands, and the motion. And all of these very, very, I would say, prior to speaking to you guys, very small and basic thing, but actually, no, they’re big.

00:28:21

PS       

I think, Chantal, that’s a really, really good point. I think one of the things that slips away when you have anything as major as Hayette’s been through, is all the ephemera, all the stuff around your life, just slips away. And actually, what really matters at the end of the day is your loved ones and the people around you, like your son and your husband and your mum and dad. And all of that other stuff is just stuff. And that’s the reality of it. And what it does is, it makes you realise what matters. 

And you come out of this, if you come out of it, with a newfound… Well, I did, with a newfound kind of valuing life. You look at life in a different way. And that’s something I think that I think, personally, I look at it and go, I’m glad something’s come of that. And that is that I look at things differently now. Because before that, I was just charging along in life. Now I’d look at it and think, I’m glad I’m still here, and I make a little bit more of my son, or like Hayette, her son. 

And those things are really, I think, important to pick up on, and it’s really interesting to hear Hayette talking about that, and you, Chantal. That is something good that comes out of something very, very bad.

HW     

I would say it gives you a different perspective on life in general. Like you said, Paul.

00:29:48

CB      

Yes. And Jo, you must have so many different people from all different walks of life, different backgrounds, different ages, that Different Strokes supports. And I guess helping them through their journey of their recovery.

JA       

Yes, and it’s everything that Hayette’s spoken about, and it’s those sort of additional needs that younger people have, like with families. You’ve still got the bills to pay. So, you’ve still got all those additional pressures. And the children, and how they deal with that, seeing their parent change, is also really difficult. So, we are actually in the process of updating all of our children’s resources information, because that’s a real struggle.

I’m not a stroke survivor myself, but we have three stroke survivors in the office who provide that peer support. But I’ve spoken to many stroke survivors myself, and I think that is a key point, that people do look at life completely differently after it’s happened to them. It takes some people a while to move into that positive mindset. Initially, there can be a lot of anger, and why has it happened to me? But I think to try and get to that gratitude point is really important. But it is difficult for a lot of people. I think I would probably find it quite difficult.

CB      

Yes. And that’s why I think having these conversations is so important, because you may not have had a stroke. You might not even know anyone that’s had a stroke. But if you listen to this, you’re going to totally flip how you think about strokes, and the impacts, and what that lies ahead.

00:31:51

So, we’ve got a couple of questions from the Sunflower community. So, the first question is, my father had a stroke. Are there any health tips you can give me to prevent the same thing happening to me? It’s probably quite a difficult question, because you don’t know all of this person’s health history.

JA       

Obviously, we don’t know what their history is. Everyone can help to reduce their controllable risks, so, the main one is being high blood pressure, which Hayette knows all about. So, you can maintain a healthy weight by having a healthy and varied diet, which is just common-sense advice that we all know that we should try and follow for every kind of disease. So, that’s the main one. 

And actually know what your blood pressure is. So, get it checked by your GP if you can. Take up those Well Woman and Well Man clinics that are offered to you at a certain age. And a lot of pharmacies have blood pressure monitors now, as well, so you can just pop in there and get it checked. And if it is high, then make sure you go and see your GP and get it looked at. There might be something you can do about. There might not, so you might have to go on some medication. But just get that under control.

And then, reduce your alcohol intake, unfortunately. We all know that you shouldn’t too much alcohol, again, for lots of reasons. And recreational drugs, they increase your risk of stroke. So, again, that might be a factor with young people. And knowing what your family history is. So, if high blood pressure runs in the family, if you know of any blood disorders, then just get that checked out. But unfortunately, there are lots of things that are out of your control, which you can’t really do anything about.

00:33:50

CB      

 And that’s quite a good one that you were saying. Well, they’re all good ones, obviously. But about knowing your blood pressure. Because I have my blood pressure taken when I go to the doctor’s. I don’t know if it’s good or if it’s bad. I mean, obviously, if it was really bad they would tell me. But it’s up to us, isn’t it, to actually take an ownership in our own health, and we can then maybe monitor it. Oh, well, it’s still in that okay zone, but it has been creeping up. And maybe put the onus on us to actually take a bit more of an interest. I often say to them, is that high, is it low?

JA       

Yes, ask those questions when you go. And the other factor I forgot to mention was stress, as well. So, that is something to a certain degree you can control. I hear a lot of anecdotal stuff from stroke survivors where, leading up to their stroke, they were under an incredible amount of stress. Hayette, you mentioned you were working hard. You were balancing that with being a mum, putting a lot of stuff on yourself. So, stress does increase your blood pressure, as well, so try and manage that as best you can.

CB      

That’s perfect, because it’s good to know. I think it’s good to hear that. Because everybody’s operating 100 miles an hour. So, if that doesn’t get done, generally, no one’s going to die. If you keep operating at that rate, you might die.

JA       

My favourite motto. Nobody’s going to die. And that usually calms me down in a stressful situation where I think, oh god, I can’t do this, have I got enough time? But it’s like, what happens if I don’t do this? Nothing, probably. It’s okay. So, again, it’s a mindset thing, isn’t it?

00:35:56

CB      

Yes.

JA       

So, maybe if you’ve got a lot of stress, the CBT and counselling, perhaps. So, there are things you can do.

CB      

Okay, brilliant. And then, the second question is, my partner is in her forties and has had a stroke. How long does it take to recover? So, it sounds like this has been quite a recent thing.

JA       

Yes, so, I think a lot of stroke survivors will tell you that this is one of the most irritating questions that they can be asked. Mainly because there is no set recovery time. You don’t just suddenly get better in six months. So, every stroke is so different, so, therefore, the recovery is completely different. And some of those effects might be lifelong. They might never go away. Some may get slightly better. Some may go completely. But like I said earlier, it’s good to know that improvements can be made years later. So, there isn’t a recovery time. 

CB      

Yes, it’s your new life, and it’s ongoing, and it will take time.

JA       

Yes, and those things may all be hidden, so, to everyone else in the outside world, they’ll think that they’re better and they’re fully recovered, and that might not be the case.

00:37:34

CB      

And you mentioned before about this new guidance that you’re working on as a charity to support families adapt to their loved one, their parents, and their newfound health and being as post-stroke. So, we want to put that in the show notes so that people can read it, and that will really help them. But how else can people find Different Strokes?

JA       

They can visit us at our website, which is www.differentstrokes.co.uk. But I’d say the best way to contact us is by phone, because then we can chat to you, find out what it is that you need, how we can support you and tell you about all the different services that we have. So, our number is 0345 130 7172.

CB      

Thank you.

JA       

Maybe you can put that in the notes somewhere.

CB      

Yes, I will, definitely. I will put that in the notes. We’ll put the website address in the notes, as well. And Hayette, I’ve got two questions for you. One is, what do you think about the Hidden Disabilities Sunflower?

HW     

It’s amazing. I managed to get one with my brain injury, ID card. Very important. And it saves me from getting in trouble outside, if I get lost, or sometimes because I have a mild to moderate communication disorder, I can’t find the words for it. I might suffer from anxiety. Please be gentle and nice with me. And I think it’s amazing. There’s a lot of opportunities to be made aware that not all disabilities are visible.

00:39:34

CB      

So, we have our little catchphrase, if you like, is, making the invisible visible.

HW     

I highly support that.

CB      

Thank you. And have you got some final words of inspiration and hope for families who may be at the beginning of their recovery?

HW     

I would say, be patient as your stroke survivor story, and you have a young kid, like a toddler, you need to be extremely patient. Because negotiating with a toddler is very difficult. Take baby steps. Practise everything with the magic word, yet. This was hard the first time. The second time will be easier. And the third time will be easier. And so on, and so on. It’s about practising.

And I would say, don’t rush back into work without fully understanding what happened to you. And chase. Chase if you don’t have any answers. Chase, chase, chase. Because chasing makes you stronger. You understand what happened to you, and it’s therapeutic for yourself. And it’s cathartic, as well. It helped me a lot, knowing what happened to me. For a year, I didn’t know what happened to me, and I was left in the dark.

CB      

Well, I think those are amazing words of advice. Don’t you, Paul?

PS       

I do. It’s lovely to meet you, both of you, actually, and hear your information and experiences. It’s been really interesting. And I wish you all the best.

00:41:08

HW

Thank you, Paul. And you, as well.

CB      

If you are interested in any of the advice discussed in this podcast, please follow up with your GP or healthcare practitioner. If you enjoyed this podcast, please share it. Leave a rating and review to help raise awareness of non-visible disabilities and the Hidden Disabilities Sunflower. You can also follow and subscribe to The Sunflower Conversations podcast.

VO

If you’d like to share your Sunflower story or conversation, please email conversations@hdsunflower.com. Find out more about us or listen to this recording again by checking out our insights page at hdsunflower .com. You can also find us on Facebook, Instagram, Twitter, YouTube, and LinkedIn. Please help, have patience, and show kindness to others. And join us again soon, making the invisible visible with the Hidden Disabilities Sunflower.

00:42:16