Vision

Episode 25, 26 April 2020

So much of the way we interact with the world and how the world interacts with us is based on vision, so when a stroke affects your sight it can have a very big impact on your life. In this special episode put together with Vision Australia, we talk about how a stroke can affect your eyes and your ability to see, and what your options are if you have vision problems after a stroke.

We talk to stroke survivor and Australia’s first blind fashion designer Nikki Hind, orthoptist Nabill Jacob from Vision Australia, and Katherine Yong from StrokeLine.

 

Podcast transcript

Announcer: Welcome to the EnableMe podcast series, where we bring together stroke survivors, health professionals and researchers, providing you with practical advice to enable you on your journey to reclaim your life after stroke. The advice given in this podcast is general in nature, and you should discuss your own personal needs and circumstances with your healthcare professionals. You can join the conversation at enableme.org.au. This series is presented by Australia's Stroke Foundation, working to prevent, treat, and beat stroke.

Chris: [00:33] One of the many ways that a stroke can affect your brain is its impact on your sense of sight, and because so much of the way we interact with the world and how the world interacts with us is based on vision, it can have a very big impact on your life. In this episode, we're going to talk about how a stroke can affect your eyes and your ability to see, and what your options are if you have vision problems after a stroke.

We've put this podcast together with Vision Australia, so I want to thank them for all their help and expertise. Also, I should say that we are recording this during the COVID-19 pandemic, so none of the guests are here today, we're all connecting remotely. Joining me on the line is stroke survivor and Australia's first blind fashion designer, Nikki Hind. Hello, Nikki.

Nikki: [01:25] Hello, how are you?

Chris: [01:26] I'm great. We also have orthoptist Nabill Jacob, who is also Client Relationship Manager with Vision Australia. Hello, Nabill.

Nabill: [01:34] Hello, how are you?

Chris: [01:35] I am good, thank you. Finally, from the Stroke Foundation's StrokeLine, we have physiotherapist Katherine Yong. Hi, Kath.

Kath: [01:42] Hi. Hello. Hi, Chris.

Chris: [01:43] So I'll get to each of you in turn, but Nikki, I wanted to start with you, and the question that I always ask stroke survivors on this podcast. Could you briefly tell us the story of how you had your stroke?

Nikki: [01:53] When I was showing my children this question a little earlier, they said, just tell them the answer is, "No, I can't." I can't briefly tell you anything, apparently I'm hopeless at briefly telling any story, but I will do my best.

I have something that is called ineffective tissue plasminogen activator, which sounds like a Doctor Who episode. It's the inability of your blood to dissolve its own clots. And I had my stroke when I was pregnant, so... It seems very unusual. Neither myself or anybody else can identify exactly when I had the stroke that left me legally blind, which may sound quite bizarre. But I was pregnant, and I was told that I lost the baby. So my body was going through the process of a miscarriage, and there's all sorts of things that go along with that, physical things. And my vision was definitely blurred along with that.

And also, I've been legally blind in one eye, in my left eye, since I was a child. So I was already used to my vision not being great. And I certainly did notice that I couldn't see properly. And I did tell the doctors, but there was so much going on around that, with trying to save the baby, and wondering what was going on with the pregnancy, that I honestly couldn't pinpoint the exact time, which I know sounds quite bizarre.

Chris: [03:25] But it did have an effect on your vision, is that correct?

Nikki: [03:28] Yes. It killed a part of my brain that's about the size of a 50 cent piece, that processes what comes in through my eyes. Yeah. So it's damage to the brain tissue, it's not damage to my eyes as such. So I lost the ability to process 50% of the field of vision in both eyes. As I said, I was already legally blind in my left eye anyway, so now I can see out of the inside half of my right eye.

Chris: [03:58] Okay, so you can see the left side, but from your right eye, is that correct?

Nikki: [04:04] What can I see? It's quite bizarre. I had 20/20 vision in what I call my good eye, my right eye, and the half of that eye that I can still process vision with is still very close to 20/20 vision. So yes, I have close to 20/20 vision in half of one of my eyes, the right eye. So, so far is what I can actually see, how that plays out, I have no peripheral vision, and I can't judge depth, and speed, and distance, and those things.

For those of you old enough to have seen Wayne's World, there's a scene in that where he's talking to the girlfriend and he puts his hand over one eye and then the other, and he's saying, "Camera one, camera two." It's a bit like that, that things are not where I think they are. I see them off centre. And also you need two eyes to focus, so several times a second I'm constantly flicking away from and flicking back to whatever I'm trying to focus on. So it's almost like holding dry sand in your hand, trying to keep a hold of what I'm looking at.

Chris: [05:08] Now, Nabill, I do want to ask you some questions about how this works in terms of the eyes and the brain. But first I did say you are an orthoptist. Can you explain, what is an orthoptist?

Nabill: [05:18] So the orthoptist is part of the eye health care team. Probably lesser known, because you don't actually see an orthoptist straight in. You're usually either referred to one, if they're in private practice, or more often than not you'll see an orthoptist working alongside an eye surgeon. So in a hospital eye department or a private ophthalmic clinic, but many do work in places like Vision Australia, and become low-vision experts, research and other areas.

Chris: [05:47] Okay. So it is different to an optometrist?

Nabill: [05:49] It definitely is. So, optometry is primary care. So you go in, you can get a full eye examination, but all the professions generally overlap like a Venn diagram. So the optometrist's expertise is optical issues generally, and they're trained to pick up eye disease and refer on, and treat, even, now these days, to an extent. The ophthalmologist is the doctor who does surgery and is the medical expert, and the orthoptist's basic skill is in the eye movement disorders, so what we call ocular motility. But we all overlap in terms of the things that we can do.

Chris: [06:23] I'm sure we're going to get onto some of those eye movement disorders eventually. But first of all, I'm wondering about the, what Nikki's described, where she has lost half of her field of vision in her eye. Can you explain how that works, and how a stroke can cause that kind of issue?

Nabill: [06:37] So you have two pathways that lead from each eye, that go right to the back of the head, part of the brain. And that's where the part that does the visual processing is. So if you have a stroke, from a bleed or a clot, along that pathway, so from the front of the head to the back of the head where the visual part of the brain sits, you can have a visual field defect and that can be very dependent on where you had that stroke episode. So what it does, it actually kills away some of the fibres that transmit that part of the visual field, so that you're no longer able to use that part.

Chris: [07:18] I believe it can be not just simply half the field of vision, but you can also lose one quarter of it as well, in some cases. Is that one of the possibilities?

Nabill: [07:27] That's correct. And once again, that's also determined by where the stroke takes place. And that's called a quadrantanopia, as opposed to a hemianopia, or hemianopsia, if you're in America, and that's where half of the visual field is gone. So it can be half, a quarter, it can be the left and right side in each eye, it can be the right side in both eyes, or the left side, that you don't see well.

Chris: [07:53] Okay. And are there treatments that can help people recover from this?

Nabill: [07:57] Generally, if a hemianopia or a quadrantanopia are going to repair, it usually shows in about three to six months post-stroke. There's nothing much that can really be done for that. So if it's going to repair, it's going to repair spontaneously. Otherwise, it's pretty much going to stay permanent.

Chris: [08:17] Okay. So that then becomes a matter of adapting and compensating for the loss of vision?

Nabill: [08:23] That's correct, that's correct. And as was mentioned, you can still generally see fairly clearly. So if you're looking at a face, or telling the time, or reading. So when you do have that peripheral field loss, generally it tends to spare the vision that you use for reading and recognising faces. So that's probably a little bit of a silver lining. And so you've only just lost that side vision. Not that that's anything that's insignificant.

Chris: [08:50] Nikki, what other things have you had to do to adjust to losing half your field of vision?

Nikki: [08:55] Yeah, and of course it's only half out of one eye, too, because the other one just really doesn't work at all. And the silver lining there, that Nabill was speaking about, as soon as I realised I'd be able to see the detail in my children's faces, I was so relieved. It's like everything else was easier to cope with, the fear subsided. It's deceivingly exhausting to have to keep refocusing, refocusing, refocusing, and pulling information in. One thing I certainly noticed, and that fascinates me, I just find it fascinating, is the way the brain compensates. Because, as I say, I have no peripheral vision and I have no ability to judge depth and distance, but I kind of do, so long as I'm in a relatively familiar situation.

And as I said, I had this stroke when I was pregnant, so I was an adult. I already had internalised, I guess, what the world means visually to me. So my brain sees much more than my eyes do, but certainly it's exhausting. Certainly I don't drive, you do not want me on the road, obviously, and I'm just much slower. As Nabill said, I can read, very lucky, I can read, but it's really hard, and I can only do a certain amount of reading each day, much, much less and much more slowly than I used to. Yes, so that was one of the things that was very difficult to get used to. It's exhausting. Yeah. Exhausting and slow.

Chris: [10:51] Kath, I'd like to get your perspective on this, too. First, as I mentioned, you work on StrokeLine. How is StrokeLine going while everyone's locked in due to coronavirus?

Kath: [11:01] Yeah, so we do get some different kind of calls. So in terms of coronavirus, I guess people are asking a few more questions about how, with their mental health at home. Yeah. As well as, if stroke is actually, if they could call a hospital if they're having a stroke. So things like that can actually be something that's playing on people's minds at the moment.

Chris: [11:29] Yeah. But StrokeLine is up and running, and able to answer these questions...

Kath: [11:30] StrokeLine is up and running. Yes. Yes, for sure. StrokeLine is up and running as usual. Yeah.

Chris: [11:36] But I guess it's an interesting point that you said that, if people are having a stroke they should still be going to hospital as normal, and not avoiding it due to...

Kath: [11:43] Yes, definitely. Yes. So still using the FAST principle, looking at face, speech and then time, so calling triple zero, getting to a hospital as quickly as possible. Yeah, that's still all the same things as before. It's really important to keep bringing that message forth to our stroke community and people who are experiencing stroke. Yeah.

Chris: [12:05] Excellent. Now we are here to talk about vision, though. What are some of the impacts that you've heard about vision loss on people's lives over StrokeLine?

Kath: [12:13] Yeah, so visual loss, it can have a big impact on people's everyday lives. And this can include things like, I guess people talk about that fatigue, and that exhaustion, around even simple things like finding objects, preparing a meal, getting dressed, and even things like getting a scare when others come into view out of nowhere and suddenly are right, really close to them. This can actually make someone feel very insecure, so someone may walk past or not be spotted in someone's vision. And it's not that someone's being rude, it's just that they haven't really seen the other person come and approach them. So that's something that is actually quite a big thing for someone with vision loss.

Vision can have a big impact on mobility and walking. So in the early days someone might be learning how to walk again, and visual issues on top of learning how to walk can add another layer of difficulty. So people rely on vision for balance. They may bump into things, fall or injure yourself. They may have trouble navigating the community in places such as crowds, shopping centres, unpredictable, unfamiliar environments.

It can affect someone's ability to drive again, this relates to how people socialise, get to work, access the community, and vision can also impact on work and job prospects, as some people describe not having an interview as a job requires a current driver's licence, which they may not have, limiting their job prospects.

And of course, this all plays into things like relationships and roles in relationships, there's a lot. So with decreased vision you may have to rely on others a little more, in driving, guiding through the community and daily activities, and as well as that, things like decreasing independence, loss of confidence, decrease in mood, anxiety, grief and loss, and identity as a whole, in a world that seems quite different to them.

Chris: [14:10] Nikki, does this sound in line with some of your experience as well?

Nikki: [14:13] Wow. Listening to all of that, Kath, yeah, it's very validating for me to hear, and possibly very good for me to hear. I can absolutely relate to all of those things, and you make it sound like it can be quite challenging, and it is, and I tend to be very independent and an optimist. But there are things that have been really difficult and my marriage broke down afterwards, and that relying on people, as you say, I think that's really hard to understand, unless you're in a position where you have to, especially when you're a younger person.

And of course the extension of that is, as a mum, and someone who's quite a nurturer, and who views herself as very capable, the loss of the ability to have others depend on me, to go and pick my parents up from the airport, to go and help when a friend needs you, the inability to do those things as well as relying...

But certainly, I used to work in public relations, doing event management. Absolutely loved it. There was a lot of driving in that, and a lot of computer work. I was not able to go back to work doing the things I used to do, and I would not initially tell people I was legally blind, and I would do well with my applications, I'd do well in initial phone interviews, and then I'd often get down to the last three people and they'd be starting to talk about details, and I would say, "I don't have a licence. I'm legally blind." And it would be the response of, "Oh, you sound really great but we don't have, we're not set up to support someone with vision impairment."
And I would get, it was really disheartening. I think I was quite naive to bit to begin with, thinking, "Yeah, I can do this. I'll just, whatever I can't get done in a day I'll do at home." And, but people were, and I will say this is about, this is 15 years ago, so people were even more reluctant. I think people are a little, possibly a bit better, but it's still incredibly difficult to get work, when you're legally blind, in something that feels meaningful and challenging and creative to you.

Chris: [16:44] Now, Kath, driving does seem to be one of the big issues there that comes up, and we do have a whole podcast on driving. So I would encourage anyone listening to check that out, if that is a topic that concerns them. But briefly could you just talk about, what are the options for people if they find that their driving is affected by vision problems after a stroke?

Kath: [17:05] Yeah, so we do often get calls about vision and driving on StrokeLine. Medical clearance is needed to return to driving after a stroke. So a neurologist can give the overall all clear, if it's safe to drive after a stroke. They may need to do a vision assessment, and if there is a vision issue, then the road authorities want eyesight or visual fields tested. So an ophthalmologist or optometrist may need to assess, and their assessment goes into the report for driving. The report that they do will go to the neurologist, and then it's important to inform the road authorities. So there's a lot of steps, but you can refer to the national Austroads Fitness to Drive guidelines as well.

There are some minimum requirements regarding visual field loss and double vision. For example, you may need a certain number of degrees to pass your visual fields testing. And if you are cleared by an ophthalmologist or optometrist, but have reduced sight, you may need an OT, occupational therapy, driving assessment.

Yeah, so a lot of people talk about other ways of accessing the community. It can be a very highly emotional time for someone. They may ask for help from family or friends, or use public transport in major cities. Volunteer transport may be an option. There's things like taxi subsidies, traveller's aides to transit in between stations, and if you're not able to return to driving, then I think there are some rehabilitative services that can help you to regain your confidence and independence, accessing the local community and public transit.

Announcer: [18:39] People call StrokeLine for many different reasons during their recovery. Some call from their hospital bed, others might call years down the track. The stroke journey can be a roller-coaster, and no matter what stage you are in, we are here to help make that ride a little smoother. StrokeLine is staffed by a team of qualified health professionals, who have the latest evidence-based information. A big part of what the StrokeLine team does is help to break the problem down, providing information on different treatment options, resources and services, and working out the best option for you. So whether you are setting new goals to get back to driving, or work, or trying to find an approach to communication that works for you, or perhaps a carer finding it a bit tough, StrokeLine is there for you. Call 1800 STROKE. That's 1800 787 653.

Chris: [19:27] Now Nabill, I wanted to ask you about some of the other issues that people can have, aside from just loss of visual field. Can you explain what those kinds of things are, and how they can affect someone's ability to see?

Nabill: [19:35] Depending on where you have the stroke, if you have the stroke along the pathways that lead from the eyes to the brain, there are certain problems, and if you have the stroke in the actual part of the brain that does the processing, there can be different problems to there. So, if you have the stroke in the part, that's what we call the visual pathway, things like blurry vision, double vision, field loss, as we've talked about, hemianopia. You can have dry eyes, you can have sensitivity to light.

The other things that can happen is, we talked about a hemianopia, but there's also another phenomenon called neglect, where patients tend to have a total disregard for the right or left side, sometimes they can't see it, sometimes they can see it, but still not recognise it, which is a really difficult thing to get your head around. And we do find that quite often there's also depth perception problems. So, as we just heard, trying to judge depth and distance is very difficult. So if you've lost vision in one eye but you've still got the other eye, if you think of a pair of stereo speakers, it's like going from mono to stereo. If you've only got one speaker, so sight's sort of similar, so you can't judge that depth. But fortunately the brain does learn to adapt, in three to six months after a stroke, how to start using other cues to judge depth.

So you can get things down to not being able to recognise people and things, and even visual hallucinations are not uncommon post-stroke.

Chris: [21:07] You said the brain adapts. Are there ways that, as you, someone like you as an orthoptist or other professionals, can help people to learn to adapt, or to learn techniques to compensate?

Nabill: [21:19] Certainly. There are lots and lots of ways we can help people adapt to that, whether it's using glasses, prisms, and prisms are like optical lenses, that are shaped like a triangle, that can help stop double vision, or being able to recognise part of the visual field. We can use patching, for example, if there's double vision. There are magnifiers. We can offer scanning therapy, or even with the use of computer programs that help you with scanning therapy, and it's not just the orthoptist there that can do all of those things, the OT comes in very, very importantly at this stage also.

So for example, at Vision Australia we employ OTs, orthoptists, orientation and mobility specialists, they're all essentially low vision experts. So all of the problems that you've heard about today, whether it's employment, double vision, visual field loss, confidence, Vision Australia has a suite of 12 services that pretty much deals with all of those areas to help get somebody back on track.

So when it's a visual field or another visual problem that you're suffering from stroke, please rest assured that Vision Australia is there, and we are pretty expert at dealing and helping people get their lives back on track from any aspect. So, and our offices are still open during the COVID situation.

Chris: [22:46] Great. What are some of the other services that Vision Australia can offer?

Nabill: [22:51] Okay, so library services, so you can download an app on your phone or have a wi-fi enabled device, and have hundreds of thousands of books, periodicals, newspapers, what have you, to be enjoyed. We do education and employment support, so if you can no longer work in the area that you were working in prior to your stroke, we can help retrain you. We can help you find a job. We can make sure that the employer is well-suited to take you on for that job, so that there is pretty much no excuse. If you can do that job, we can get subsidies from the government to help you set up to do that job, and we'll follow up with you and make sure that you're happy in that job.

So we sort of work as a training organisation, recruitment consultancy for people who have blindness or vision impairment. We have aids and equipment that people can trial, so we've got the very latest technology. We can help you use the adaptive programs on your computer, your iPhone, your tablet. We have social support groups, where you can come in, or join via telephone, or the internet, with groups of people who have suffered similar situations and really understand where you're coming from. So you get that emotional support, and you're around people that actually understand what it is that you can no longer do because of your vision. We can help you, we can get funding to access all of these services, so whether it's the NDIS or My Aged Care, where we can do all that paperwork for you from that perspective.

Chris: [24:16] Okay, great. Now, one of the themes that came up there, which I think we've touched on a couple of times before, is this idea of finding work after a stroke, and after getting vision problems, and some of the challenges there and having to change careers. And this is where, I think it's a good time to talk to Nikki about it, because you have really changed direction since your stroke, haven't you, Nikki?

Nikki: [24:39] I have indeed, yes, yes.

Chris: [24:41] Could you tell us about how you've done what you've done?

Nikki: [24:45] Yeah, sure. As I said earlier, I worked in public relations, doing event management, and I realised relatively quickly I was not going to be able to work the way I used to be able to work. And when I was a teenager, I used to, fashion design was the happy little place I'd go to in my head, my little, happy, escape place. But I thought fashion design was a ridiculously unpractical thing to do, so I pursued things that were more practical, and set up a relatively practical life. But yeah, when I lost my vision, and there was quite a domino effect of things that fell apart around me, and my little world turned upside down, and I was feeling really quite crushed, and my confidence was very low, and I was a single mum with these two beautiful little boys.

And I thought, "There's no way I want to be a crushed, unconfident mum. That's not who I am. My children deserve the very best of me." So I instinctively reached for that aspirational thing, that dream, something to kind of pull me back up into, and to connect me to the things that that made me feel creative, and light, and joyous, and confident.

So yes, I went, I challenged myself to create my first collection, in 2015. I created it for the Prix de marie claire Awards, which are online awards, you get everything, you create your designs and photograph them and put them in what's called an electronic look-book, and you send that in on a USB, and I did all that. I decided in January I was going to do it, and upon receipt of it, the public relations manager at Marie Claire called me to say, "Thank you very much for your entry, but the fashion component of the Prix de marie claire Awards is only on every second year, and this isn't one of them."
But she didn't bin it. She did not bin my collection. She actually sent it through to the fashion editor, and she sent it through to the chief editor, because of the story that was attached to it. So that got me thinking, "Maybe I could actually turn this in into work, and how would that feel meaningful to me?" And that was when Blind Grit was born, the label that I currently have, Blind Grit, which is built entirely of and around people who live with disabilities.

So everything except the manufacturing, all the fabulous, fun, aspirational, creative jobs, the modelling, photography, hairdressing, makeup, social media, graphic design, obviously the clothes designing itself, all those wonderful, fun things that sit behind the creation of a fashion brand, and will be done by people who live with disability.

Chris: [27:46] Fantastic. Why have you chosen that approach?

Nikki: [27:49] I created that first collection, I guess with the intent to heal from things that had been traumatic, including losing my vision, and everything that came from that. I thought, I guess I wanted to bring as many people along for the journey as possible. People who would find it difficult to have the privilege of aspiration in their work. I think it's something we take for granted, growing up as able-bodied people. And I think the fact that I spent the first half of my life as an able-bodied person, someone who did not have a disability, I grew up with that privilege, and probably didn't take full advantage of it. It's amusing that I'm pursuing my dream as a person who lives with disability. I think it's very important to think much more broadly than just entry-level positions for people who live with disability, to connect people, to give people the opportunity to connect with their dreams and their aspirations, I think, is incredibly powerful in releasing people's potential.

Chris: [29:14] Absolutely. Well, from that, Kath, let's take a step back from that, then. In terms of the support that StrokeLine can offer to people with vision problems. Can you tell us a bit about that?

Kath: [29:29] Yeah. So StrokeLine can help give advice and put you in contact with the right people at the right time to get the best outcome for your situation. We can help to identify what you have tried, what is working, what is not working, and point you in the direction of the right services. I guess with StrokeLine, it's important to know that anybody can call, including stroke survivors, carers, family and friends, and health professionals. We can provide education and give basic tips, basic emotional support, and talk about how a stroke can really impact you. We've talked to a lot of stroke survivors and loved ones, so we have a good understanding of what many people go through. It may help to understand that, yes it's okay to feel this way, or I'm not alone in what I'm going through, or hear great stories that, like what Nikki has said about getting back to the workplace, and things can happen like that.

Chris: [30:25] Nikki, can I just ask you, do you have any other advice that you would give people with vision problems after a stroke?

Nikki: [30:32] Yes. Go easy on yourself. It's a huge adjustment. It's a really huge adjustment. And your brain will help you. Yeah. I am just fascinated by the way that my brain fills things in for me. And, I guess, focus. Yeah. Be kind to yourself and focus on what you love, what comes easy to you. Because just because it comes easy to you does not mean that it's easy, and there will absolutely be all sorts of awesome things you can do, and just go easy on yourself. Take your time, your brain will fill in all sorts of awesome things, and look at what you love. Look at what comes easy, and build on that.

Chris: [31:29] Fantastic. And, Nabill, what would your final words be for people with vision problems?

Nabill: [31:36] My very strong final words would be that there is an organisation that can help you if your stroke is affecting your vision, and there is no stone we will leave unturned to help you achieve your goals and aspirations. And that's exactly what Vision Australia is designed to do. So it doesn't matter where you are in Australia, how old you are, if you've lost vision because of a stroke, please come and see us. You don't need to have a referral from your doctor, although many doctors will refer to us, and rest assured that we will try everything we can, and we have lots of services in place, aids, equipment. We can come to you, you don't have to come to us, to our clinics, and help you source the funding that you're entitled to, to receive those services and equipment.

Chris: [32:25] That's fantastic. And I'm sure that when people call StrokeLine, they can be referred to Vision Australia as well, if necessary.

Nabill: [32:32] Definitely.

Chris: [32:33] Well, thank you very much, Nikki and thanks, Nabill. Kath, I thought I'd just get you to finish up now. What are your top tips for people with vision problems after a stroke?

Kath: [32:42] Yeah, sure. So I guess vision loss can be a quite an invisible or hidden disability. I guess, disclose to people, if you feel comfortable, with what you're experiencing and how they can help you out. It might be just asking someone to approach you from a certain side. If there are things that you find helpful, then share these, if you like, with family and friends. Like Nabill said, there's so many practical tips that you can implement to make life easier. So don't be afraid to get help, especially through StrokeLine, or through Vision Australia as well. If you don't get help, you may not know that these things are available, and there's lots of aids, as Nabill has touched on.

And similar to what Nikki said, so to be kind to yourself is really important. I think life can be hard, and it is okay to let yourself feel frustrated, or angry, or sad at times, but there might be a point where things can shift a little bit, and instead of being behind the wheel and concentrating on traffic, the new focus might become, it might turn into talking whilst you're walking with your kids, and hearing how they see the world. So I've had lots of stories about people adapting, to become an even better photographer for example, with the need for attention to detail, and others like Nikki, thriving in the work that they do and in their careers. So I guess, yeah, call StrokeLine, call Vision Australia. We can direct, check and give you tips, and have a look at our EnableMe website and our resources on vision as well.

Chris: [34:22] Fantastic. Thank you, Kath. Now remember, if you do want to speak to a health professional like Kath about this, or any other topic, you can call StrokeLine on 1800 787 653, that is 1800 S-T-R-O-K-E, or you can ask a question through EnableMe and get a response from health professionals and other stroke survivors. Nabill, I should have asked you, how can people get in touch with Vision Australia?

Nabill: [34:45] All right. As I mentioned, we are national, so we have 30 offices across the country, and there's a national number of 1300 847 466, or they can access lots of resources on our online site, visionaustralia.org.

Chris: [35:05] Fantastic. Thank you. Oh, and Nikki, I should ask while we're going around. How can people find more about Blind Grit?

Nikki: [35:12] If you just Google "Blind Grit", I think we should come up, but the website is www.blindgrit.com so, and please follow us on Instagram, because my incredible social media manager, Debbie Larsen, is also vision-impaired and it absolutely makes her day, her week, her month, when she gets new people following her, so please follow her on Instagram. You'll make her so happy.

Chris: [35:41] Now if you are listening and you like what you've heard today, please give us a good rating and review on your podcast app, as that helps bump us up in the search ratings so that other people can find our podcast. So thanks once again to Vision Australia for their help with this podcast, and thanks to our guests, Nikki Hind, Nabill Jacob, and Katherine Yong.

Announcer: [35:59] That's all for today's EnableMe podcast. You can find out more on this topic and continue the conversation or listen to other podcasts in the series at enableme.org.au. It's free to sign up, and you can talk with thousands of other stroke survivors, carers, and supporters. You can also suggest a topic or provide feedback on this podcast.

EnableMe has qualified health professionals from StrokeLine who can answer your questions and give evidence-based advice. The advice given here is general in nature, and you should discuss your own personal needs and circumstances with your healthcare professionals.

The music in this podcast is "Signs" by stroke survivor Antonio Iannella and his band The Lion Tamers. It's recorded at Antonio's studio, which you can find out more about at facebook.com/studiofour99. This EnableMe podcast series is produced by the Stroke Foundation in Australia, working to prevent, treat and beat stroke. See strokefoundation.org.au.

Vision

Episode 25, 26 April 2020

So much of the way we interact with the world and how the world interacts with us is based on vision, so when a stroke affects your sight it can have a very big impact on your life. In this special episode put together with Vision Australia, we talk about how a stroke can affect your eyes and your ability to see, and what your options are if you have vision problems after a stroke.

We talk to stroke survivor and Australia’s first blind fashion designer Nikki Hind, orthoptist Nabill Jacob from Vision Australia, and Katherine Yong from StrokeLine.

 

Podcast transcript

Announcer: Welcome to the EnableMe podcast series, where we bring together stroke survivors, health professionals and researchers, providing you with practical advice to enable you on your journey to reclaim your life after stroke. The advice given in this podcast is general in nature, and you should discuss your own personal needs and circumstances with your healthcare professionals. You can join the conversation at enableme.org.au. This series is presented by Australia's Stroke Foundation, working to prevent, treat, and beat stroke.

Chris: [00:33] One of the many ways that a stroke can affect your brain is its impact on your sense of sight, and because so much of the way we interact with the world and how the world interacts with us is based on vision, it can have a very big impact on your life. In this episode, we're going to talk about how a stroke can affect your eyes and your ability to see, and what your options are if you have vision problems after a stroke.

We've put this podcast together with Vision Australia, so I want to thank them for all their help and expertise. Also, I should say that we are recording this during the COVID-19 pandemic, so none of the guests are here today, we're all connecting remotely. Joining me on the line is stroke survivor and Australia's first blind fashion designer, Nikki Hind. Hello, Nikki.

Nikki: [01:25] Hello, how are you?

Chris: [01:26] I'm great. We also have orthoptist Nabill Jacob, who is also Client Relationship Manager with Vision Australia. Hello, Nabill.

Nabill: [01:34] Hello, how are you?

Chris: [01:35] I am good, thank you. Finally, from the Stroke Foundation's StrokeLine, we have physiotherapist Katherine Yong. Hi, Kath.

Kath: [01:42] Hi. Hello. Hi, Chris.

Chris: [01:43] So I'll get to each of you in turn, but Nikki, I wanted to start with you, and the question that I always ask stroke survivors on this podcast. Could you briefly tell us the story of how you had your stroke?

Nikki: [01:53] When I was showing my children this question a little earlier, they said, just tell them the answer is, "No, I can't." I can't briefly tell you anything, apparently I'm hopeless at briefly telling any story, but I will do my best.

I have something that is called ineffective tissue plasminogen activator, which sounds like a Doctor Who episode. It's the inability of your blood to dissolve its own clots. And I had my stroke when I was pregnant, so... It seems very unusual. Neither myself or anybody else can identify exactly when I had the stroke that left me legally blind, which may sound quite bizarre. But I was pregnant, and I was told that I lost the baby. So my body was going through the process of a miscarriage, and there's all sorts of things that go along with that, physical things. And my vision was definitely blurred along with that.

And also, I've been legally blind in one eye, in my left eye, since I was a child. So I was already used to my vision not being great. And I certainly did notice that I couldn't see properly. And I did tell the doctors, but there was so much going on around that, with trying to save the baby, and wondering what was going on with the pregnancy, that I honestly couldn't pinpoint the exact time, which I know sounds quite bizarre.

Chris: [03:25] But it did have an effect on your vision, is that correct?

Nikki: [03:28] Yes. It killed a part of my brain that's about the size of a 50 cent piece, that processes what comes in through my eyes. Yeah. So it's damage to the brain tissue, it's not damage to my eyes as such. So I lost the ability to process 50% of the field of vision in both eyes. As I said, I was already legally blind in my left eye anyway, so now I can see out of the inside half of my right eye.

Chris: [03:58] Okay, so you can see the left side, but from your right eye, is that correct?

Nikki: [04:04] What can I see? It's quite bizarre. I had 20/20 vision in what I call my good eye, my right eye, and the half of that eye that I can still process vision with is still very close to 20/20 vision. So yes, I have close to 20/20 vision in half of one of my eyes, the right eye. So, so far is what I can actually see, how that plays out, I have no peripheral vision, and I can't judge depth, and speed, and distance, and those things.

For those of you old enough to have seen Wayne's World, there's a scene in that where he's talking to the girlfriend and he puts his hand over one eye and then the other, and he's saying, "Camera one, camera two." It's a bit like that, that things are not where I think they are. I see them off centre. And also you need two eyes to focus, so several times a second I'm constantly flicking away from and flicking back to whatever I'm trying to focus on. So it's almost like holding dry sand in your hand, trying to keep a hold of what I'm looking at.

Chris: [05:08] Now, Nabill, I do want to ask you some questions about how this works in terms of the eyes and the brain. But first I did say you are an orthoptist. Can you explain, what is an orthoptist?

Nabill: [05:18] So the orthoptist is part of the eye health care team. Probably lesser known, because you don't actually see an orthoptist straight in. You're usually either referred to one, if they're in private practice, or more often than not you'll see an orthoptist working alongside an eye surgeon. So in a hospital eye department or a private ophthalmic clinic, but many do work in places like Vision Australia, and become low-vision experts, research and other areas.

Chris: [05:47] Okay. So it is different to an optometrist?

Nabill: [05:49] It definitely is. So, optometry is primary care. So you go in, you can get a full eye examination, but all the professions generally overlap like a Venn diagram. So the optometrist's expertise is optical issues generally, and they're trained to pick up eye disease and refer on, and treat, even, now these days, to an extent. The ophthalmologist is the doctor who does surgery and is the medical expert, and the orthoptist's basic skill is in the eye movement disorders, so what we call ocular motility. But we all overlap in terms of the things that we can do.

Chris: [06:23] I'm sure we're going to get onto some of those eye movement disorders eventually. But first of all, I'm wondering about the, what Nikki's described, where she has lost half of her field of vision in her eye. Can you explain how that works, and how a stroke can cause that kind of issue?

Nabill: [06:37] So you have two pathways that lead from each eye, that go right to the back of the head, part of the brain. And that's where the part that does the visual processing is. So if you have a stroke, from a bleed or a clot, along that pathway, so from the front of the head to the back of the head where the visual part of the brain sits, you can have a visual field defect and that can be very dependent on where you had that stroke episode. So what it does, it actually kills away some of the fibres that transmit that part of the visual field, so that you're no longer able to use that part.

Chris: [07:18] I believe it can be not just simply half the field of vision, but you can also lose one quarter of it as well, in some cases. Is that one of the possibilities?

Nabill: [07:27] That's correct. And once again, that's also determined by where the stroke takes place. And that's called a quadrantanopia, as opposed to a hemianopia, or hemianopsia, if you're in America, and that's where half of the visual field is gone. So it can be half, a quarter, it can be the left and right side in each eye, it can be the right side in both eyes, or the left side, that you don't see well.

Chris: [07:53] Okay. And are there treatments that can help people recover from this?

Nabill: [07:57] Generally, if a hemianopia or a quadrantanopia are going to repair, it usually shows in about three to six months post-stroke. There's nothing much that can really be done for that. So if it's going to repair, it's going to repair spontaneously. Otherwise, it's pretty much going to stay permanent.

Chris: [08:17] Okay. So that then becomes a matter of adapting and compensating for the loss of vision?

Nabill: [08:23] That's correct, that's correct. And as was mentioned, you can still generally see fairly clearly. So if you're looking at a face, or telling the time, or reading. So when you do have that peripheral field loss, generally it tends to spare the vision that you use for reading and recognising faces. So that's probably a little bit of a silver lining. And so you've only just lost that side vision. Not that that's anything that's insignificant.

Chris: [08:50] Nikki, what other things have you had to do to adjust to losing half your field of vision?

Nikki: [08:55] Yeah, and of course it's only half out of one eye, too, because the other one just really doesn't work at all. And the silver lining there, that Nabill was speaking about, as soon as I realised I'd be able to see the detail in my children's faces, I was so relieved. It's like everything else was easier to cope with, the fear subsided. It's deceivingly exhausting to have to keep refocusing, refocusing, refocusing, and pulling information in. One thing I certainly noticed, and that fascinates me, I just find it fascinating, is the way the brain compensates. Because, as I say, I have no peripheral vision and I have no ability to judge depth and distance, but I kind of do, so long as I'm in a relatively familiar situation.

And as I said, I had this stroke when I was pregnant, so I was an adult. I already had internalised, I guess, what the world means visually to me. So my brain sees much more than my eyes do, but certainly it's exhausting. Certainly I don't drive, you do not want me on the road, obviously, and I'm just much slower. As Nabill said, I can read, very lucky, I can read, but it's really hard, and I can only do a certain amount of reading each day, much, much less and much more slowly than I used to. Yes, so that was one of the things that was very difficult to get used to. It's exhausting. Yeah. Exhausting and slow.

Chris: [10:51] Kath, I'd like to get your perspective on this, too. First, as I mentioned, you work on StrokeLine. How is StrokeLine going while everyone's locked in due to coronavirus?

Kath: [11:01] Yeah, so we do get some different kind of calls. So in terms of coronavirus, I guess people are asking a few more questions about how, with their mental health at home. Yeah. As well as, if stroke is actually, if they could call a hospital if they're having a stroke. So things like that can actually be something that's playing on people's minds at the moment.

Chris: [11:29] Yeah. But StrokeLine is up and running, and able to answer these questions...

Kath: [11:30] StrokeLine is up and running. Yes. Yes, for sure. StrokeLine is up and running as usual. Yeah.

Chris: [11:36] But I guess it's an interesting point that you said that, if people are having a stroke they should still be going to hospital as normal, and not avoiding it due to...

Kath: [11:43] Yes, definitely. Yes. So still using the FAST principle, looking at face, speech and then time, so calling triple zero, getting to a hospital as quickly as possible. Yeah, that's still all the same things as before. It's really important to keep bringing that message forth to our stroke community and people who are experiencing stroke. Yeah.

Chris: [12:05] Excellent. Now we are here to talk about vision, though. What are some of the impacts that you've heard about vision loss on people's lives over StrokeLine?

Kath: [12:13] Yeah, so visual loss, it can have a big impact on people's everyday lives. And this can include things like, I guess people talk about that fatigue, and that exhaustion, around even simple things like finding objects, preparing a meal, getting dressed, and even things like getting a scare when others come into view out of nowhere and suddenly are right, really close to them. This can actually make someone feel very insecure, so someone may walk past or not be spotted in someone's vision. And it's not that someone's being rude, it's just that they haven't really seen the other person come and approach them. So that's something that is actually quite a big thing for someone with vision loss.

Vision can have a big impact on mobility and walking. So in the early days someone might be learning how to walk again, and visual issues on top of learning how to walk can add another layer of difficulty. So people rely on vision for balance. They may bump into things, fall or injure yourself. They may have trouble navigating the community in places such as crowds, shopping centres, unpredictable, unfamiliar environments.

It can affect someone's ability to drive again, this relates to how people socialise, get to work, access the community, and vision can also impact on work and job prospects, as some people describe not having an interview as a job requires a current driver's licence, which they may not have, limiting their job prospects.

And of course, this all plays into things like relationships and roles in relationships, there's a lot. So with decreased vision you may have to rely on others a little more, in driving, guiding through the community and daily activities, and as well as that, things like decreasing independence, loss of confidence, decrease in mood, anxiety, grief and loss, and identity as a whole, in a world that seems quite different to them.

Chris: [14:10] Nikki, does this sound in line with some of your experience as well?

Nikki: [14:13] Wow. Listening to all of that, Kath, yeah, it's very validating for me to hear, and possibly very good for me to hear. I can absolutely relate to all of those things, and you make it sound like it can be quite challenging, and it is, and I tend to be very independent and an optimist. But there are things that have been really difficult and my marriage broke down afterwards, and that relying on people, as you say, I think that's really hard to understand, unless you're in a position where you have to, especially when you're a younger person.

And of course the extension of that is, as a mum, and someone who's quite a nurturer, and who views herself as very capable, the loss of the ability to have others depend on me, to go and pick my parents up from the airport, to go and help when a friend needs you, the inability to do those things as well as relying...

But certainly, I used to work in public relations, doing event management. Absolutely loved it. There was a lot of driving in that, and a lot of computer work. I was not able to go back to work doing the things I used to do, and I would not initially tell people I was legally blind, and I would do well with my applications, I'd do well in initial phone interviews, and then I'd often get down to the last three people and they'd be starting to talk about details, and I would say, "I don't have a licence. I'm legally blind." And it would be the response of, "Oh, you sound really great but we don't have, we're not set up to support someone with vision impairment."
And I would get, it was really disheartening. I think I was quite naive to bit to begin with, thinking, "Yeah, I can do this. I'll just, whatever I can't get done in a day I'll do at home." And, but people were, and I will say this is about, this is 15 years ago, so people were even more reluctant. I think people are a little, possibly a bit better, but it's still incredibly difficult to get work, when you're legally blind, in something that feels meaningful and challenging and creative to you.

Chris: [16:44] Now, Kath, driving does seem to be one of the big issues there that comes up, and we do have a whole podcast on driving. So I would encourage anyone listening to check that out, if that is a topic that concerns them. But briefly could you just talk about, what are the options for people if they find that their driving is affected by vision problems after a stroke?

Kath: [17:05] Yeah, so we do often get calls about vision and driving on StrokeLine. Medical clearance is needed to return to driving after a stroke. So a neurologist can give the overall all clear, if it's safe to drive after a stroke. They may need to do a vision assessment, and if there is a vision issue, then the road authorities want eyesight or visual fields tested. So an ophthalmologist or optometrist may need to assess, and their assessment goes into the report for driving. The report that they do will go to the neurologist, and then it's important to inform the road authorities. So there's a lot of steps, but you can refer to the national Austroads Fitness to Drive guidelines as well.

There are some minimum requirements regarding visual field loss and double vision. For example, you may need a certain number of degrees to pass your visual fields testing. And if you are cleared by an ophthalmologist or optometrist, but have reduced sight, you may need an OT, occupational therapy, driving assessment.

Yeah, so a lot of people talk about other ways of accessing the community. It can be a very highly emotional time for someone. They may ask for help from family or friends, or use public transport in major cities. Volunteer transport may be an option. There's things like taxi subsidies, traveller's aides to transit in between stations, and if you're not able to return to driving, then I think there are some rehabilitative services that can help you to regain your confidence and independence, accessing the local community and public transit.

Announcer: [18:39] People call StrokeLine for many different reasons during their recovery. Some call from their hospital bed, others might call years down the track. The stroke journey can be a roller-coaster, and no matter what stage you are in, we are here to help make that ride a little smoother. StrokeLine is staffed by a team of qualified health professionals, who have the latest evidence-based information. A big part of what the StrokeLine team does is help to break the problem down, providing information on different treatment options, resources and services, and working out the best option for you. So whether you are setting new goals to get back to driving, or work, or trying to find an approach to communication that works for you, or perhaps a carer finding it a bit tough, StrokeLine is there for you. Call 1800 STROKE. That's 1800 787 653.

Chris: [19:27] Now Nabill, I wanted to ask you about some of the other issues that people can have, aside from just loss of visual field. Can you explain what those kinds of things are, and how they can affect someone's ability to see?

Nabill: [19:35] Depending on where you have the stroke, if you have the stroke along the pathways that lead from the eyes to the brain, there are certain problems, and if you have the stroke in the actual part of the brain that does the processing, there can be different problems to there. So, if you have the stroke in the part, that's what we call the visual pathway, things like blurry vision, double vision, field loss, as we've talked about, hemianopia. You can have dry eyes, you can have sensitivity to light.

The other things that can happen is, we talked about a hemianopia, but there's also another phenomenon called neglect, where patients tend to have a total disregard for the right or left side, sometimes they can't see it, sometimes they can see it, but still not recognise it, which is a really difficult thing to get your head around. And we do find that quite often there's also depth perception problems. So, as we just heard, trying to judge depth and distance is very difficult. So if you've lost vision in one eye but you've still got the other eye, if you think of a pair of stereo speakers, it's like going from mono to stereo. If you've only got one speaker, so sight's sort of similar, so you can't judge that depth. But fortunately the brain does learn to adapt, in three to six months after a stroke, how to start using other cues to judge depth.

So you can get things down to not being able to recognise people and things, and even visual hallucinations are not uncommon post-stroke.

Chris: [21:07] You said the brain adapts. Are there ways that, as you, someone like you as an orthoptist or other professionals, can help people to learn to adapt, or to learn techniques to compensate?

Nabill: [21:19] Certainly. There are lots and lots of ways we can help people adapt to that, whether it's using glasses, prisms, and prisms are like optical lenses, that are shaped like a triangle, that can help stop double vision, or being able to recognise part of the visual field. We can use patching, for example, if there's double vision. There are magnifiers. We can offer scanning therapy, or even with the use of computer programs that help you with scanning therapy, and it's not just the orthoptist there that can do all of those things, the OT comes in very, very importantly at this stage also.

So for example, at Vision Australia we employ OTs, orthoptists, orientation and mobility specialists, they're all essentially low vision experts. So all of the problems that you've heard about today, whether it's employment, double vision, visual field loss, confidence, Vision Australia has a suite of 12 services that pretty much deals with all of those areas to help get somebody back on track.

So when it's a visual field or another visual problem that you're suffering from stroke, please rest assured that Vision Australia is there, and we are pretty expert at dealing and helping people get their lives back on track from any aspect. So, and our offices are still open during the COVID situation.

Chris: [22:46] Great. What are some of the other services that Vision Australia can offer?

Nabill: [22:51] Okay, so library services, so you can download an app on your phone or have a wi-fi enabled device, and have hundreds of thousands of books, periodicals, newspapers, what have you, to be enjoyed. We do education and employment support, so if you can no longer work in the area that you were working in prior to your stroke, we can help retrain you. We can help you find a job. We can make sure that the employer is well-suited to take you on for that job, so that there is pretty much no excuse. If you can do that job, we can get subsidies from the government to help you set up to do that job, and we'll follow up with you and make sure that you're happy in that job.

So we sort of work as a training organisation, recruitment consultancy for people who have blindness or vision impairment. We have aids and equipment that people can trial, so we've got the very latest technology. We can help you use the adaptive programs on your computer, your iPhone, your tablet. We have social support groups, where you can come in, or join via telephone, or the internet, with groups of people who have suffered similar situations and really understand where you're coming from. So you get that emotional support, and you're around people that actually understand what it is that you can no longer do because of your vision. We can help you, we can get funding to access all of these services, so whether it's the NDIS or My Aged Care, where we can do all that paperwork for you from that perspective.

Chris: [24:16] Okay, great. Now, one of the themes that came up there, which I think we've touched on a couple of times before, is this idea of finding work after a stroke, and after getting vision problems, and some of the challenges there and having to change careers. And this is where, I think it's a good time to talk to Nikki about it, because you have really changed direction since your stroke, haven't you, Nikki?

Nikki: [24:39] I have indeed, yes, yes.

Chris: [24:41] Could you tell us about how you've done what you've done?

Nikki: [24:45] Yeah, sure. As I said earlier, I worked in public relations, doing event management, and I realised relatively quickly I was not going to be able to work the way I used to be able to work. And when I was a teenager, I used to, fashion design was the happy little place I'd go to in my head, my little, happy, escape place. But I thought fashion design was a ridiculously unpractical thing to do, so I pursued things that were more practical, and set up a relatively practical life. But yeah, when I lost my vision, and there was quite a domino effect of things that fell apart around me, and my little world turned upside down, and I was feeling really quite crushed, and my confidence was very low, and I was a single mum with these two beautiful little boys.

And I thought, "There's no way I want to be a crushed, unconfident mum. That's not who I am. My children deserve the very best of me." So I instinctively reached for that aspirational thing, that dream, something to kind of pull me back up into, and to connect me to the things that that made me feel creative, and light, and joyous, and confident.

So yes, I went, I challenged myself to create my first collection, in 2015. I created it for the Prix de marie claire Awards, which are online awards, you get everything, you create your designs and photograph them and put them in what's called an electronic look-book, and you send that in on a USB, and I did all that. I decided in January I was going to do it, and upon receipt of it, the public relations manager at Marie Claire called me to say, "Thank you very much for your entry, but the fashion component of the Prix de marie claire Awards is only on every second year, and this isn't one of them."
But she didn't bin it. She did not bin my collection. She actually sent it through to the fashion editor, and she sent it through to the chief editor, because of the story that was attached to it. So that got me thinking, "Maybe I could actually turn this in into work, and how would that feel meaningful to me?" And that was when Blind Grit was born, the label that I currently have, Blind Grit, which is built entirely of and around people who live with disabilities.

So everything except the manufacturing, all the fabulous, fun, aspirational, creative jobs, the modelling, photography, hairdressing, makeup, social media, graphic design, obviously the clothes designing itself, all those wonderful, fun things that sit behind the creation of a fashion brand, and will be done by people who live with disability.

Chris: [27:46] Fantastic. Why have you chosen that approach?

Nikki: [27:49] I created that first collection, I guess with the intent to heal from things that had been traumatic, including losing my vision, and everything that came from that. I thought, I guess I wanted to bring as many people along for the journey as possible. People who would find it difficult to have the privilege of aspiration in their work. I think it's something we take for granted, growing up as able-bodied people. And I think the fact that I spent the first half of my life as an able-bodied person, someone who did not have a disability, I grew up with that privilege, and probably didn't take full advantage of it. It's amusing that I'm pursuing my dream as a person who lives with disability. I think it's very important to think much more broadly than just entry-level positions for people who live with disability, to connect people, to give people the opportunity to connect with their dreams and their aspirations, I think, is incredibly powerful in releasing people's potential.

Chris: [29:14] Absolutely. Well, from that, Kath, let's take a step back from that, then. In terms of the support that StrokeLine can offer to people with vision problems. Can you tell us a bit about that?

Kath: [29:29] Yeah. So StrokeLine can help give advice and put you in contact with the right people at the right time to get the best outcome for your situation. We can help to identify what you have tried, what is working, what is not working, and point you in the direction of the right services. I guess with StrokeLine, it's important to know that anybody can call, including stroke survivors, carers, family and friends, and health professionals. We can provide education and give basic tips, basic emotional support, and talk about how a stroke can really impact you. We've talked to a lot of stroke survivors and loved ones, so we have a good understanding of what many people go through. It may help to understand that, yes it's okay to feel this way, or I'm not alone in what I'm going through, or hear great stories that, like what Nikki has said about getting back to the workplace, and things can happen like that.

Chris: [30:25] Nikki, can I just ask you, do you have any other advice that you would give people with vision problems after a stroke?

Nikki: [30:32] Yes. Go easy on yourself. It's a huge adjustment. It's a really huge adjustment. And your brain will help you. Yeah. I am just fascinated by the way that my brain fills things in for me. And, I guess, focus. Yeah. Be kind to yourself and focus on what you love, what comes easy to you. Because just because it comes easy to you does not mean that it's easy, and there will absolutely be all sorts of awesome things you can do, and just go easy on yourself. Take your time, your brain will fill in all sorts of awesome things, and look at what you love. Look at what comes easy, and build on that.

Chris: [31:29] Fantastic. And, Nabill, what would your final words be for people with vision problems?

Nabill: [31:36] My very strong final words would be that there is an organisation that can help you if your stroke is affecting your vision, and there is no stone we will leave unturned to help you achieve your goals and aspirations. And that's exactly what Vision Australia is designed to do. So it doesn't matter where you are in Australia, how old you are, if you've lost vision because of a stroke, please come and see us. You don't need to have a referral from your doctor, although many doctors will refer to us, and rest assured that we will try everything we can, and we have lots of services in place, aids, equipment. We can come to you, you don't have to come to us, to our clinics, and help you source the funding that you're entitled to, to receive those services and equipment.

Chris: [32:25] That's fantastic. And I'm sure that when people call StrokeLine, they can be referred to Vision Australia as well, if necessary.

Nabill: [32:32] Definitely.

Chris: [32:33] Well, thank you very much, Nikki and thanks, Nabill. Kath, I thought I'd just get you to finish up now. What are your top tips for people with vision problems after a stroke?

Kath: [32:42] Yeah, sure. So I guess vision loss can be a quite an invisible or hidden disability. I guess, disclose to people, if you feel comfortable, with what you're experiencing and how they can help you out. It might be just asking someone to approach you from a certain side. If there are things that you find helpful, then share these, if you like, with family and friends. Like Nabill said, there's so many practical tips that you can implement to make life easier. So don't be afraid to get help, especially through StrokeLine, or through Vision Australia as well. If you don't get help, you may not know that these things are available, and there's lots of aids, as Nabill has touched on.

And similar to what Nikki said, so to be kind to yourself is really important. I think life can be hard, and it is okay to let yourself feel frustrated, or angry, or sad at times, but there might be a point where things can shift a little bit, and instead of being behind the wheel and concentrating on traffic, the new focus might become, it might turn into talking whilst you're walking with your kids, and hearing how they see the world. So I've had lots of stories about people adapting, to become an even better photographer for example, with the need for attention to detail, and others like Nikki, thriving in the work that they do and in their careers. So I guess, yeah, call StrokeLine, call Vision Australia. We can direct, check and give you tips, and have a look at our EnableMe website and our resources on vision as well.

Chris: [34:22] Fantastic. Thank you, Kath. Now remember, if you do want to speak to a health professional like Kath about this, or any other topic, you can call StrokeLine on 1800 787 653, that is 1800 S-T-R-O-K-E, or you can ask a question through EnableMe and get a response from health professionals and other stroke survivors. Nabill, I should have asked you, how can people get in touch with Vision Australia?

Nabill: [34:45] All right. As I mentioned, we are national, so we have 30 offices across the country, and there's a national number of 1300 847 466, or they can access lots of resources on our online site, visionaustralia.org.

Chris: [35:05] Fantastic. Thank you. Oh, and Nikki, I should ask while we're going around. How can people find more about Blind Grit?

Nikki: [35:12] If you just Google "Blind Grit", I think we should come up, but the website is www.blindgrit.com so, and please follow us on Instagram, because my incredible social media manager, Debbie Larsen, is also vision-impaired and it absolutely makes her day, her week, her month, when she gets new people following her, so please follow her on Instagram. You'll make her so happy.

Chris: [35:41] Now if you are listening and you like what you've heard today, please give us a good rating and review on your podcast app, as that helps bump us up in the search ratings so that other people can find our podcast. So thanks once again to Vision Australia for their help with this podcast, and thanks to our guests, Nikki Hind, Nabill Jacob, and Katherine Yong.

Announcer: [35:59] That's all for today's EnableMe podcast. You can find out more on this topic and continue the conversation or listen to other podcasts in the series at enableme.org.au. It's free to sign up, and you can talk with thousands of other stroke survivors, carers, and supporters. You can also suggest a topic or provide feedback on this podcast.

EnableMe has qualified health professionals from StrokeLine who can answer your questions and give evidence-based advice. The advice given here is general in nature, and you should discuss your own personal needs and circumstances with your healthcare professionals.

The music in this podcast is "Signs" by stroke survivor Antonio Iannella and his band The Lion Tamers. It's recorded at Antonio's studio, which you can find out more about at facebook.com/studiofour99. This EnableMe podcast series is produced by the Stroke Foundation in Australia, working to prevent, treat and beat stroke. See strokefoundation.org.au.