Travel

Episode 19, 8 March 2019 

People often say it’s the journey that matters, not the destination. But although both can be a challenge when you’ve had a stroke, travel is still an important goal for many stroke survivors.

In this podcast, we talk about issues like knowing when it’s safe to fly, finding accessible destinations and transport, making sure you have assistance if you need it, and getting travel insurance.

Our guests are rehabilitation physician Associate Professor Steven Faux; stroke survivor and frequent traveller Kevin English; and occupational therapist Simone Russell from StrokeLine.

This podcast is supported by AllClear Travel Insurance. For more information on specialist travel insurance after a stroke, see strokefoundation.org.au/travel.

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 health care 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: [00:44] Welcome to the first episode of the EnableMe podcast series for 2019. This special episode about travelling after stroke is supported by AllClear Travel Insurance.

People often say it's the journey that matters, not the destination. But when you've had a stroke, both the journey and the destination can be a challenge. Even so, travelling is still a fulfilling and important goal for many stroke survivors.

In this podcast, we're going to talk about how to navigate travelling after stroke. We'll speak to rehabilitation physician Steven Faux, and to occupational therapist Simone Russell.

But first we have with us stroke survivor Kevin English. Kevin is an electrical engineer who had a hemorrhagic stroke nine years ago while he was working in Singapore. He is now a passionate advocate for rapid stroke treatment and he is a Stroke Safe ambassador and member of the Stroke Foundation's Consumer Council. Welcome to the podcast, Kevin.

Kevin: [01:35] Thank you. I was actually living in Singapore for about three years and working on large telecommunication projects right around Asia. And I just happened this day to be working from home, which was quite unusual, and suffered an extraordinary headache. And my wife found me in bed and wondered what the heck was going on, and eventually rang our doctor. And she said to take me to hospital, so they got an ambulance and took me to hospital. And they said I had a subarachnoid haemorrhage, which is a haemorrhage, an aneurysm, in my brain that had burst.

And they operated the next day, which put me into ICU for about two or three weeks in Singapore. And then after about four weeks I got a plane back to Melbourne, which was quite an interesting experience, because I had to go first class with a doctor and a nurse. And fortunately my employer over in Singapore agreed to pay for the cost of that, otherwise it would have been quite substantial. And so I got back to Melbourne. I had two weeks in Epworth Hospital, then about another five months in Caulfield Rehab Hospital.

So during that time I basically learnt to walk, because I was initially completely paralysed down my left side. But fortunately by the time I left rehab, I could walk and I could drive a car, I could go up and down stairs. So it was the basic things I needed to do get on with my life. So since then, it brought my career to an end. I haven't worked since then but, as Chris said, I've been heavily involved in the Stroke Foundation since then and various other activities. So my time is still pretty busy. Just not getting paid for anything I do.

Chris: [03:02] Fair enough. Now, I still want to ask you about the travel you did there, when you were coming back from Singapore, back to Australia. Because that must have been quite frightening to be travelling so soon after your stroke. Was there a lot of worry that it would be dangerous? Or was the fact that you had that medical support, did that make it okay?

Kevin: Well, the medical support certainly helped. I think it was overkill, but just before I travelled they did actually do some more scans and decided I had some more blood on my brain. So they actually postponed it for a couple of days until they could retest that, but it turned out to be nothing. But to come back first class, I was a bit peeved. It's the only time I went first class. I wasn't allowed to drink any alcohol. So I got on the plane and basically it was a fairly comfortable trip back. And then I was put on in a wheelchair and then taken off in a wheelchair, and put straight into an ambulance and taken to Epworth Hospital. So it was a quite straightforward process. It was probably more traumatic for my wife than it was for me.

Chris: [03:56] Okay. Well, I'm hoping you've had a few more travel experiences since then, a bit more pleasant even if they're not in first class.

Kevin: Yes.

Chris: When did you next travel?

Kevin: I travelled, the next time was about 12 months later. Which was quite interesting because I booked it when I basically couldn't walk. So some good friends of ours decided they'd do a boat trip from Budapest to Amsterdam. And so they said, "Well, you think you've recovered enough. Look, we'll book it. If you can't walk you can sit on the boat and admire the things going past, and we'll see how we go."
But fortunately by the time I went on that trip, about 12 months later, I could walk and I could do most of the trips off the boat. And certainly I had a very great time. And we decided at that stage that so many things can change where you can't travel, we wanted to take advantage of that and so basically we've done at least one major trip every year since. So I've done a lot of travel in the last nine years.

Chris: [04:45] Okay. What are some of the highlights of that subsequent travel?

Kevin: Last year we went to Africa. That was a real highlight. We really enjoyed going to South Africa and Kenya. South America was great. We enjoyed Canada. Going to the Galapagos Islands and that area we thought was really good when we went to South America. And we've done a lot of travel around Europe. And when we were living in Singapore, we did a lot of travel around Asia as well. So we actually managed to fit a fair bit of travel into the last decade or so.

Chris: [05:16] Well, what do you find are some of the biggest challenges with travelling after a stroke?

Kevin: Well, we've planned a lot of travels. I think one of the first things is deciding whether you're going to book it yourself or whether you're going to go on an organised tour. And there's certainly advantages either way. I mean, a lot of people find that booking it themselves, it gives them a much more flexible itinerary. But it means you do have to carry your own luggage and things like that, and organise your own transfers, from fly-ins back to hotels and things like that. Whereas if you go with an organised tour, there are a lot of advantages if after a stroke. It's a little less flexibility but usually a well organised tour has a lot of interesting things included in it.

And usually your luggage, you can deposit your luggage and they take care of all your luggage. Pick it up from the hotel and put it into the bus and give it back to you at the end of the day. And all the transfers and things like that from planes to hotels, they're all organised. So that takes a lot of the hassle out of that. And I think also I found particularly useful, there's a tour director on most of these trips and so you can ask them about what things they think you're capable of doing or not.

So we found in most cases that initially they'd said, "Oh, I think there's a lot of things you can't do." But usually after a few days of seeing what I can do, they decide I can tackle most of it. So most of the trips, I take their advice if they say something's not appropriate. But I've probably done at least 80% of each of the trips we've done.

Chris: [06:37] Okay, brilliant. Now, one of the things that people sometimes ask about is getting travel insurance and how it can be difficult when you have a condition like stroke. And it can also, yeah, it can be, even though it's important to have. How do you go about getting travel insurance?

Kevin: Certainly I think people say if you can't afford travel insurance you can't afford overseas travel. I'd certainly agree with that. But if you have some sort of a medical problem overseas and you haven't got insurance, it can be just absolutely exorbitant. So I think travel insurance is essential. Initially when I got travel insurance, they wouldn't cover me for stroke. And initially they charged quite a lot of extra money to get the travel insurance. Now, a few years down the track, they don't charge any more, but I'm still not covered for a stroke.

But in my case I have scans every couple of years, so the chances of having the same thing happen again are very remote. So that's really not too much of an issue. But yeah, certainly it's very important to have travel insurance. I think it's very important to look around and find out the appropriate travel insurance, because a lot of travel insurance companies won't cover you for preexisting ailments. So you need to discuss that in detail and make sure you really are covered for what you need. Because you need adequate medical insurance that can bring you back to Australia if you need it and cover your costs over there. So there's quite a lot involved in it.

Chris: Okay, and have you had to use it?

Kevin: No, fortunately we haven't had to use it. We've always taken it. It's cost us a fortune over the years, but it's just one of those essential costs.

Chris: [08:05] So what advice then, additional advice, would you have for other stroke survivors who are looking at travelling after a stroke?

Kevin: Oh, I think there's a lot of things. Things like passport. I mean, any travel overseas you need to make sure your passport has at least six months on it. So you need to check that fairly early on. I'd suggest going to see your doctor at least six weeks before you travel. It's very important to get injections for wherever you're going to, so discuss exactly where you're going. You can go to a medical expert in overseas travel injections. But also get properly checked out and get their advice of what they think you're capable of doing and not capable of doing.

Another thing, I think, is money. You need to take at least one or two credit cards and possibly cash cards through Qantas or somebody like that, where you can load up in other currencies and that can cover your costs. And take some foreign currency with you because, particularly when you first arrive, you may need some foreign currency before you can get to a bank or somewhere like that to get any more money.

I think another important thing is, this is a very good website, smartraveller.gov.au. And you can go on that site and it's got a lot of information about travelling under all sorts of circumstances, including travelling with disabilities. You can also register exactly where you're going. I think that's quite valuable, where you can say, now, this is where I'm going to be each day of your trip. So if something happens and they need to contact you in a hurry, they know where to start if you're overseas. And they also issue warnings, so if you're going to a country like, for example, China they might have warnings about places that they don't recommend you go to. Well, then they'll put those advices out and you can pick those up anywhere in the world and get up-to-date information on what's safe and what's not.

So another one is I think important is advise your bank of your travel plans. Because we've had that experience of going to Malaysia and trying to use our credit card, and finding it was blocked because we made another purchase a little bit before. So if you advise your bank where you're going, where you're travelling to, they'll be a bit more lenient in terms of blocking your credit card if you put a transaction on it.

I think also check out the hotels that you're going to go to. I mean, a lot of hotels around Europe and places like that don't have lifts, so using stairs. Often the bathrooms are not what we're used to in Australia. They often say they've got disabled bathrooms, but often their idea of a disabled bathroom is not particularly suitable for a disabled person. So ask about that at the places you're going to and make sure it suits your particular needs. Particularly if you're going to places like China, their idea of toilets is quite different to our idea of toilets.

Another one I had a few interesting experiences on was getting in and out of swimming pools. Getting in was easy enough. Getting out was the issue. So a couple of times I got in and had to get help from somebody there to help get me out of the pool. And the other places like Galapagos Islands, places like that, so a couple of times I got into a little boat and it was quite an issue to try and get me out of it. So I think over the years I've learnt to make sure, wherever I go, I know how I'm going to get back out of that situation again. And just be mindful that there's some things that you probably can't do as well as you used to be able to do. But overall, with a bit of forethought, you can do most things that you thought you could do.

Chris: Well, thank you very much, Kevin. There's some excellent advice there. And, look, we hope you also keep up the good work of speaking up for other stroke survivors as well.

Kevin: Yeah, I certainly will.

Chris: Thank you. That was stroke survivor Kevin English.

Announcer: [11:42] If you're a family member or friend of someone that has had a stroke, you know that it's just the start of a long journey to reclaim their life. As one of Australia's biggest killers and the leading cause of adult disability, we still have a long way to go until we can say we have beaten it. At the Stroke Foundation, we draw our inspiration from the determination and persistence of stroke survivors, and that's why we work every day to prevent, treat and beat stroke.

There are many ways you can join us to fight stroke, including volunteering your time, telling your story for us to share with the media, speaking up and approaching your local member of parliament with our advocacy team, getting your workplace or community group behind an event like National Stroke Week or Stride4Stroke. Running a fundraiser, donating or leaving a lasting gift in your will, or just by sharing the FAST message with the people around you, so all Australians will know how to recognise a stroke and act fast. Join the Fight Stroke team. Find out more at strokefoundation.org.au.

Chris: [12:41] Next on the line we have associate professor Steven Faux. Steven is the director of the Sacred Heart Rehabilitation and Saint Vincent's Pain Service, Darlinghurst, and he's Associate Professor in Clinical Medicine at the University of New South Wales. Thanks for joining us, Steven.

Steven: Thanks, Chris.

Chris: Now, you're a rehabilitation physician, I believe. For those who aren't familiar with the term, could you please tell us what a rehabilitation physician does?

Steven: Well, a rehabilitation physician is the medical leader of a team of allied health therapists, doctors and nurses, who focus on improving your ability to return to work and normal functioning after a stroke. It's not just a stroke, it can be all sorts of disabilities, but for those who've had a stroke the rehab physician helps coordinate the dietitian and to make sure that you eat properly. They coordinate the physiotherapist to make sure you train and exercise well to try and regain your walking.

The occupational therapist makes sure that you return to work, or return to looking after yourself. The psychologist to manage your mood, the social worker to get your finances into check. Essentially, it's like being the coach of a team with the stroke person being an elite athlete and everyone working to get them to peak performance.

Chris: [14:06] Now, when we're talking about peak performance, I imagine one of the things that people want to perform at is getting back to their normal life, which includes things like travel. How often do people have travel as one of their goals for their rehabilitation?

Steven: Well, in my experience it's fairly common, because stroke occurs at all ages, but for many people it occurs at a time when they're planning to take long holidays or they've been saving up to go overseas or something like that, or to travel around Australia. And so people are very focused on returning to that dream, particularly when that's one of the things they're worried that they may not be able to achieve again. So it's not uncommon that people ask me about, will I be able to travel to Victoria next for a wedding or whatever.

Chris: [15:01] Okay. Now that, I guess, cuts to one of the big questions that we wanted to ask, which is the guidelines or when can people actually travel after a stroke? For starters, I suppose, flying. Is there any sort of rule of thumb about when people can fly after a stroke?

Steven: Yeah, well, it's interesting you say that. There's no evidence for it. There's always been a rule of thumb that says six weeks, but there's no proof that that's the right time or not. There is, however, a bit of an issue for anyone who's had brain surgery as a way of managing their stroke. If you've had brain surgery, then air has been allowed to go inside your skull. And if that's the case, you can't fly until a CT scan of your brain shows that the air has dissipated. And that happens to be around about six weeks. And that's important because of the pressure differences in the flight cabin. That doesn't stop people who've had brain surgery from travelling by road or sea or train, but it does prevent air travel.

One of the main issues I have with people travelling after a stroke are, so long as they're able to get themselves on and off the flight and to and from the toilet on the flight, and they're not going to have trouble boarding or getting off the flight carrying their luggage, etc., there shouldn't be too many problems with travelling after a stroke.

Chris: [16:34] Okay, so that functional ability, is that the kind of thing that people need to consider before travelling?

Steven: Yeah, I think so. I mean, quite often you've got to think about how you're going to get your luggage to the airport and who's going to carry it and how you're going to get it off the carousel. The airlines will often help you, but that doesn't apply to rail or car travel. And then, of course, the other thing is airports have got very long distances for people to have to walk, both in Australia and overseas. And so you have to be mindful of whether you're able to walk for sometimes up to seven or eight minutes. Happily, with enough warning, airlines and airports will provide transport to people who've suffered strokes so that their walking is kept to a minimum.

Chris: [17:32] Okay, now in terms of issues with flying, one thing that a lot of people might be concerned about is deep vein thrombosis, or DVT. Is that something that's a particular issue for stroke survivors, and is there something that people can do about that?

Steven: Well, for some stroke survivors there's not as much of an issue because they're already on a blood thinner, or so they should be. And for many people who've had atrial fibrillation after their stroke, they're on anticoagulants, like the novel anticoagulants or warfarin. So for those people it shouldn't be a problem. For people who've had a brain haemorrhage where you don't usually go onto a blood thinner, you do have to pay a bit of attention to moving your feet around to try and prevent clots.

Now, for those who've got a hemiparesis or an inability to move an ankle on one side, there is a slight increased risk of getting a clot in the leg while flying. Now, in the first few weeks of the stroke when there's a lot of inability to move the limb, it's probably more of a risk than it is later on as the patient responds to rehabilitation and they're able to move their legs around.

For those who aren't on any blood thinners because they've had a haemorrhage into the brain, they might need to wait until it's safe for them to use anti-platelet agents. And when they're able to use anti-platelet agents it's probably wise to take an aspirin before flying just to ensure the risk of the clot in the leg is less. Ideally, people should move their legs around and move around the plane if they can. Or the train or, of course, on a boat. And that mitigates against or prevents the clots from forming.

Chris: [19:45] Now, I guess from what you said there about, particularly people who've had a bleed may not be able to take blood thinners, is it the kind of thing that for anyone who's had a stroke they should speak to their doctor before they commence a large trip?

Steven: Yeah, I think it's something that you should be discussing with the rehab physician or the general practitioner or the neurologist. Particularly if you've had a bleed into the brain. But more so the other issue is if the stroke has affected your ability to move one side of your body, then you really need to think about keeping active during the flight or on the train. And definitely speaking to your GP or neurologist or rehab physician.

Chris: [20:33] Okay. Now, we did put a call out for questions for this podcast from our stroke survivor community. Now, there's one from Bronwyn that is rather specific but touched on some good points, so I'm going to read most of it out pretty much straight. She says that we all know the first four hours after a stroke are critical. She's going on a cruise, so what she wants to know is would her GP prescribe a clot-buster for her to carry in an emergency, or do cruise lines like Royal Caribbean carry such drugs in case of an emergency? Or is there anything she can do, including taking additional blood thinners, to prevent a stroke?

Steven: Well, that is a great question. That is a great question because one of the things it implies is if you're at sea and you have another stroke, would you have access to emergency treatment? The emergency treatment of the clot-busting drugs are intravenous, so they're not oral. Although we do in some cases use a whole aspirin, and that would definitely be available on a boat, and shouldn't be taken unless you've spoken to the doctor. And most boats, particularly those large cruise liners, will have a medical clinic.

Unfortunately, the ability to use clot-busting drugs is not something that should be available to the individual, but rather through the medical clinic. And in the modern age, the medical clinic might be able to have access to telehealth, to neurologists in one of the closer countries to wherever they are travelling. But the problem is most clinics in large ships won't have a brain scanner, and you'll need to have a brain scan before any decision about a clot-busting drug can be given. So great idea, but the technicalities make it sort of not possible. Having said that, if you do have a recurrent stroke, seeing the doctor and getting the doctor to make calls and tele-calls to neurologists or emergency physicians is probably a very good idea in the early phases, in the first few hours of a stroke.

Chris: [22:49] All right, fantastic. Now, do you have any other advice that you might give for stroke survivors or their carers about travelling after a stroke?

Steven: Yeah. The first thing is, I'd encourage it. I'd say, look, if you've had a stroke it's pretty devastating and you fear that you're going to lose all your dreams and hopes. So if you've had a dream to travel, don't give up on it. You may not travel exactly the same way as you had dreamed, but you can travel. And rehabilitation physicians are particularly good at helping people travel. And there are a lot of resources out there for helping people with mild or moderate disabilities travel.

So my advice is absolutely do not give up on your dream of travelling with a disability. And following a stroke, if you had always dreamed that you were going to travel, I would be doing it. So it is a legitimate thing to discuss with the rehab physician or the GP, and if you go onto any website and look at disability and travelling you'll find a myriad of places that will tell you hotels with really good facilities, if you need bigger bathrooms. They'll tell you airlines that are particularly good at getting you on and off planes with attendants. And I'd say travel, if that's your passion, get back to it. As a rehab physician, nothing pleases me more than to have patients come back and say, I eventually did take that trip.

Chris: Thank you, Steve. That's a very positive message.

Steven: Thank you very much. And thanks for inviting me on on your podcast, Chris.

Chris: Our pleasure. That was associate professor Steven Faux.

Announcer: [24:31] Setting goals is crucial to stroke recovery. Goals can be as simple as walking to the letterbox to check the mail, or bigger goals like getting back to work. EnableMe has a unique tool where you and your carer or family can plan what you want to achieve, track how you are progressing and celebrate your successes. You can also connect with other people who set goals similar to yours, and challenge or inspire each other. You can even set up a blog to write down how you are feeling and share your own story. And don't forget, our professionals from StrokeLine can help with personalised and confidential advice to help you grow stronger after stroke. Visit enableme.org.au.

Chris: [25:11] Now, our final guest is one of our regular StrokeLine representatives, occupational therapist Simone Russell. Thanks for coming in, Simone.

Simone: My pleasure, Chris.

Chris: Now, I imagine that on StrokeLine you've heard a lot about stroke survivors wanting to travel. What are the main concerns that you hear?

Simone: We do get enquiries around travel and they vary, really. Sometimes we get people calling us when they've had a stroke overseas while travelling. So I think Kevin touched on his experience personally, and that's a common one that we do get. You know, how do I get home? What sorts of things do I need to consider? It's usually from a loved one or a carer that might be with their loved one who's had the stroke.

And so those are the first calls we get quite a lot of. And then we also get calls around more longer term, people wanting to get back to travel. And even in the short term phase, someone might've had a stroke that had a holiday booked and they want to perhaps talk through whether that's possible, whether it's best to put that travel off or postpone it for a period of time. So it definitely does come up. Sometimes people call us as well to find out about whether they can fly. That's a really common enquiry that we get, and I think Doctor Faux has touched on that quite nicely around some of the considerations for flying.

Other things too that can come up is that fear of having another stroke. And so if someone does decide they want to go travelling, what to consider if there's that fear or anxiety there about having another stroke, or another medical emergency while away. We get lots of enquiries around travel insurance as well. What do I do, where do I start? How do I go about getting adequate cover? Also enquiries even around local travel, so things like, I've returned to driving but someone might have significant fatigue and so they might call us to talk about fatigue as an issue for driving longer distances and wanting to troubleshoot that. And accommodation enquiries as well are quite common, and equipment enquiries. So what sorts of accommodation can I explore in terms of travel either in Australia or overseas, and also equipment, and where they might be able to access that to enable travel.

Chris: [27:07] Okay, I'm probably going to get you to follow up most of those, because you went through quite a few issues there. Now, I guess, as you said, we've spoken to Steven Faux at least about flying after a stroke. When we're talking about things like having a stroke overseas or medical emergencies this is, I suppose, where the travel insurance nicely mixes into that because having travel insurance is a kind of protection there. But it is also a challenge. How do you get travel insurance after you've had a stroke?

Simone: Yeah, it's a really good question. I think Kevin's touched on this one as well. I think usually inquiring with a range of different insurers is a good starting point. Finding out what, I guess, the best options might be for your particular needs. So where you'd want to travel, what you need to be covered? I think Kevin really touched on, if you can't afford the travel insurance then can you actually afford to be travelling? I think it's really an essential part of travel.

I think, too, coming online to EnableMe is a great place as well to start. So there's lots of conversations around other stroke survivors, different experience of finding travel insurance that's appropriate. But in some cases the preexisting condition might not be covered, and so it's checking in, is it covered, is it not covered? There might be differences in premiums, depending on what cover you get. But I always say it's similar to, I guess, anyone that's wanting to travel. Phoning around, getting different quotes and really making sure that you feel well-informed and you know exactly what you're covered for, and what's not going to be covered if there are any exclusions.

Chris: Yeah. And I guess, as you said, you can go onto EnableMe and you can see other people's stories. But your situation might be different and you can't take their costs or requirements.

Simone: Absolutely. It really is a case-by-case. Everyone's stroke is different, everyone's medical history is different as well. And so insurers may want to know more information that's really specific to your particular medical history and stroke.

Chris: [28:58] Okay. Now, next on the list, accessible accommodation. How do you go about finding accessible accommodation?

Simone: Yeah. Well, I'm going to go back to Kevin's comment around, do you decide to self-book or do you go through a travel agent or even a travel agent that may specialise in tours or even disability travel? I think if you're going to self-book, there's a lot of options now online. So going to pretty much any kind of accommodation search function will show you can actually select disability access, and then that gives a lot of options to see what might be available. Particularly if you're looking at a weekend getaway in Australia perhaps, it's very, very easy to see who has accessible accommodation. And then making phone calls to find out exactly what that involves.

I think Kevin touched on, sometimes overseas there, someone's idea of accessible bathrooms, for example, might be very different to what we have here in Australia. So taking that in mind and I think going through a travel agent can be one option to kind of know that they've had experience with that particular hotel or accommodation before. That can be really helpful. You can see often now a lot of photos online, so that can give you a bit more of a kind of idea about what to expect in terms of standards of disability access.

again, using the community. So lots of stroke survivors have experience with travel, finding out if they've got any recommendations. But yeah, generally now there's lots of options online to just see what's out there and to have a look at photos yourself. But definitely, again, having an open conversation if it's a travel agent you're going through or a tour guide company. You know, really finding out what the level of accommodation's going to be like and is that suitable for you? And is any other equipment needed, if that's required to make it safe and enjoyable?

Chris: [30:45] Okay. Now, speaking of equipment, so if you, for instance, do need special aids or support, such as wheelchairs or even a carer to look after you while you're travelling, is that the kind of thing that you can look at hiring at the destination?

Simone: Yeah. Look, you can. I mean, I guess if you're looking at travel in Australia that's much easier to organise equipment ahead of time. If you're doing a self-booked holiday, planning it and it's overseas and you're needing equipment at every different place you're going to, that might be a little bit more challenging to coordinate and to rely on.

So I think again weighing up what it is you need specifically. Even working in rehabilitation, it might be that actually with a little bit of work on, say, transfers for example, that getting on and off a low toilet, it's not as big an issue as it might be originally and you might not need equipment for it, for example, a few months down the track. So you can really look at rehab goals as well, tailoring towards working towards some of those things.

But I think getting a really clear picture about what equipment needs you have. If it's something you can take with you, like a stick, for example, what that might be. If it's a wheelchair, is that something that comes with you from the start to the end of the journey? And what may be better to hire or to arrange at the destination or at the accommodation site. But, yeah, it's not impossible. I think really being aware of what you need and then finding out what the best option is, what's going to be easiest to manage.

Chris: [32:08] So I guess then to sum up, would you be able to give us your top tips for people travelling after stroke?

Simone: I think the first one would be planning ahead. So really doing your research and preparing well. There's a lot of checklists out there that you can use. But the other thing is to think about what you would consider even before a stroke if you were to go on a trip or a holiday. So thinking about all the sorts of things like weather, clothing, equipment as we've touched on, any medication that you might need, making sure that you have enough of a supply of medication as well, that you're not going to run out mid-trip.

The environment, so looking at the accommodation and looking at transportation. So whether that's trains, whether that's planes, whether that's cars, or any other transport you might be using. If it's getting off boats, buses, all of that sort of thing. And really mapping out an itinerary. I think Kevin also touched on using Smartraveller to document where you're going. Even that sort of old, I guess, tip of having an itinerary and leaving it with a loved one so they know where you're at and what you're doing as well.

And it might sound a little bit negative, but thinking about what could go wrong I think can help some people, particularly if there's any fear or anxiety about travelling. So really making sure that you know what the emergency number is in a foreign country, for example, so if there was a medical emergency you know you feel comfortable to get medical help. Knowing perhaps where the nearest hospitals are if you're in major cities, or how you might get help if you are in more rural areas. And even things like knowing basic language for asking for help, those kinds of things can help as well if you're feeling nervous or if there's anticipation around travelling.

Other things like start small. I think we've talked a lot about overseas travel today, but thinking about building up slowly if you're not confident or if perhaps you've not been a confident traveller. So things like, it might be just getting to, say, a family wedding, for example, which might be in Australia. That might be your first step. Or it might be going for a day trip somewhere or going away for a weekend, and then building up to longer trips or even overseas trips. That can be a really good way to just start to get some confidence and experience travelling again after stroke, and problem-solving some of the things that might happen as you go.

Considering all alternatives and being open is a really important point. So I think Doctor Faux touched on this and it's really about, you may not be able to go on that six week overseas trip to start with, but being open to other alternatives. It might be things like a cruise, which you might not have considered before. But it's an easier option to still be able to get out and enjoy travel. Or it might be a tour-operated holiday. Other things we've talked about, the insurance obviously is a really important one which we've covered. Speaking to your doctor we've covered as well. Really making sure that you have a conversation with them and that can be the rehabilitation physician, the GP or the neurologist.

Really asking any questions, writing down your list of questions so that you feel prepared. Speaking to the rehab team I've touched on as well. So if travel's a goal, make it known and start to actively work towards different steps in your goal. And it might be also recruiting family and friends as well, and making sure you've got support. Sometimes carers are needed to facilitate travel, so talking about that with the team. You know, is it possible to have a paid carer go on a trip with you?

Other options and advice I would have is to call us on StrokeLine. Each case is different and we can sort of tailor the advice specifically to you. So give us a call. We can troubleshoot any questions, problem-solve. And EnableMe I've suggested already before, but get online, start some conversations. There's already some fantastic conversations on travel in EnableMe. And people like Kevin are such a wealth of experience and knowledge, and it's really important to communicate with each other and share these tips. I think it's really inspiring to see stroke survivors like Kevin getting out there and travelling, and really showing people what's possible.

So, yeah, I think I'm just going to end by, I guess, echoing Doctor Faux's comments around if this was a goal, if this is a goal, don't think that just because you've had a stroke that you can't travel. You know, keep working on it and go for it.

Chris: [36:08] Great. Thank you very much, Simone. That was occupational therapist Simone Russell. And as Simone said, if you want to speak to a health professional, you can call StrokeLine on 1800 787 653. That's 1800 STROKE. Or you can ask a question through EnableMe and get a response from health professionals and other stroke survivors.

That is all we have time for today. If you like what you've heard, please give us a good rating and review on iTunes or whatever service you're using, as that helps lift us up in the search rankings so other people can find our podcast. Thanks again to our guests, Kevin English, Associate Professor Stephen Faux and Simone Russell.

And thank you to AllClear Travel Insurance for supporting this podcast. If you need specialist travel insurance after a stroke, you can visit our website, strokefoundation.org.au/travel to obtain a quote. Or call 02 9333 3922 and use reference number AST when you speak with an AllClear Travel Insurance representative. With any policy purchased, AllClear will make a contribution of up to 20% of your premium, excluding GST and stamp duty, to the Stroke Foundation to help us continue to support stroke survivors in the community.

Announcer: [37:19] 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 health care 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.

Travel

Episode 19, 8 March 2019 

People often say it’s the journey that matters, not the destination. But although both can be a challenge when you’ve had a stroke, travel is still an important goal for many stroke survivors.

In this podcast, we talk about issues like knowing when it’s safe to fly, finding accessible destinations and transport, making sure you have assistance if you need it, and getting travel insurance.

Our guests are rehabilitation physician Associate Professor Steven Faux; stroke survivor and frequent traveller Kevin English; and occupational therapist Simone Russell from StrokeLine.

This podcast is supported by AllClear Travel Insurance. For more information on specialist travel insurance after a stroke, see strokefoundation.org.au/travel.

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 health care 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: [00:44] Welcome to the first episode of the EnableMe podcast series for 2019. This special episode about travelling after stroke is supported by AllClear Travel Insurance.

People often say it's the journey that matters, not the destination. But when you've had a stroke, both the journey and the destination can be a challenge. Even so, travelling is still a fulfilling and important goal for many stroke survivors.

In this podcast, we're going to talk about how to navigate travelling after stroke. We'll speak to rehabilitation physician Steven Faux, and to occupational therapist Simone Russell.

But first we have with us stroke survivor Kevin English. Kevin is an electrical engineer who had a hemorrhagic stroke nine years ago while he was working in Singapore. He is now a passionate advocate for rapid stroke treatment and he is a Stroke Safe ambassador and member of the Stroke Foundation's Consumer Council. Welcome to the podcast, Kevin.

Kevin: [01:35] Thank you. I was actually living in Singapore for about three years and working on large telecommunication projects right around Asia. And I just happened this day to be working from home, which was quite unusual, and suffered an extraordinary headache. And my wife found me in bed and wondered what the heck was going on, and eventually rang our doctor. And she said to take me to hospital, so they got an ambulance and took me to hospital. And they said I had a subarachnoid haemorrhage, which is a haemorrhage, an aneurysm, in my brain that had burst.

And they operated the next day, which put me into ICU for about two or three weeks in Singapore. And then after about four weeks I got a plane back to Melbourne, which was quite an interesting experience, because I had to go first class with a doctor and a nurse. And fortunately my employer over in Singapore agreed to pay for the cost of that, otherwise it would have been quite substantial. And so I got back to Melbourne. I had two weeks in Epworth Hospital, then about another five months in Caulfield Rehab Hospital.

So during that time I basically learnt to walk, because I was initially completely paralysed down my left side. But fortunately by the time I left rehab, I could walk and I could drive a car, I could go up and down stairs. So it was the basic things I needed to do get on with my life. So since then, it brought my career to an end. I haven't worked since then but, as Chris said, I've been heavily involved in the Stroke Foundation since then and various other activities. So my time is still pretty busy. Just not getting paid for anything I do.

Chris: [03:02] Fair enough. Now, I still want to ask you about the travel you did there, when you were coming back from Singapore, back to Australia. Because that must have been quite frightening to be travelling so soon after your stroke. Was there a lot of worry that it would be dangerous? Or was the fact that you had that medical support, did that make it okay?

Kevin: Well, the medical support certainly helped. I think it was overkill, but just before I travelled they did actually do some more scans and decided I had some more blood on my brain. So they actually postponed it for a couple of days until they could retest that, but it turned out to be nothing. But to come back first class, I was a bit peeved. It's the only time I went first class. I wasn't allowed to drink any alcohol. So I got on the plane and basically it was a fairly comfortable trip back. And then I was put on in a wheelchair and then taken off in a wheelchair, and put straight into an ambulance and taken to Epworth Hospital. So it was a quite straightforward process. It was probably more traumatic for my wife than it was for me.

Chris: [03:56] Okay. Well, I'm hoping you've had a few more travel experiences since then, a bit more pleasant even if they're not in first class.

Kevin: Yes.

Chris: When did you next travel?

Kevin: I travelled, the next time was about 12 months later. Which was quite interesting because I booked it when I basically couldn't walk. So some good friends of ours decided they'd do a boat trip from Budapest to Amsterdam. And so they said, "Well, you think you've recovered enough. Look, we'll book it. If you can't walk you can sit on the boat and admire the things going past, and we'll see how we go."
But fortunately by the time I went on that trip, about 12 months later, I could walk and I could do most of the trips off the boat. And certainly I had a very great time. And we decided at that stage that so many things can change where you can't travel, we wanted to take advantage of that and so basically we've done at least one major trip every year since. So I've done a lot of travel in the last nine years.

Chris: [04:45] Okay. What are some of the highlights of that subsequent travel?

Kevin: Last year we went to Africa. That was a real highlight. We really enjoyed going to South Africa and Kenya. South America was great. We enjoyed Canada. Going to the Galapagos Islands and that area we thought was really good when we went to South America. And we've done a lot of travel around Europe. And when we were living in Singapore, we did a lot of travel around Asia as well. So we actually managed to fit a fair bit of travel into the last decade or so.

Chris: [05:16] Well, what do you find are some of the biggest challenges with travelling after a stroke?

Kevin: Well, we've planned a lot of travels. I think one of the first things is deciding whether you're going to book it yourself or whether you're going to go on an organised tour. And there's certainly advantages either way. I mean, a lot of people find that booking it themselves, it gives them a much more flexible itinerary. But it means you do have to carry your own luggage and things like that, and organise your own transfers, from fly-ins back to hotels and things like that. Whereas if you go with an organised tour, there are a lot of advantages if after a stroke. It's a little less flexibility but usually a well organised tour has a lot of interesting things included in it.

And usually your luggage, you can deposit your luggage and they take care of all your luggage. Pick it up from the hotel and put it into the bus and give it back to you at the end of the day. And all the transfers and things like that from planes to hotels, they're all organised. So that takes a lot of the hassle out of that. And I think also I found particularly useful, there's a tour director on most of these trips and so you can ask them about what things they think you're capable of doing or not.

So we found in most cases that initially they'd said, "Oh, I think there's a lot of things you can't do." But usually after a few days of seeing what I can do, they decide I can tackle most of it. So most of the trips, I take their advice if they say something's not appropriate. But I've probably done at least 80% of each of the trips we've done.

Chris: [06:37] Okay, brilliant. Now, one of the things that people sometimes ask about is getting travel insurance and how it can be difficult when you have a condition like stroke. And it can also, yeah, it can be, even though it's important to have. How do you go about getting travel insurance?

Kevin: Certainly I think people say if you can't afford travel insurance you can't afford overseas travel. I'd certainly agree with that. But if you have some sort of a medical problem overseas and you haven't got insurance, it can be just absolutely exorbitant. So I think travel insurance is essential. Initially when I got travel insurance, they wouldn't cover me for stroke. And initially they charged quite a lot of extra money to get the travel insurance. Now, a few years down the track, they don't charge any more, but I'm still not covered for a stroke.

But in my case I have scans every couple of years, so the chances of having the same thing happen again are very remote. So that's really not too much of an issue. But yeah, certainly it's very important to have travel insurance. I think it's very important to look around and find out the appropriate travel insurance, because a lot of travel insurance companies won't cover you for preexisting ailments. So you need to discuss that in detail and make sure you really are covered for what you need. Because you need adequate medical insurance that can bring you back to Australia if you need it and cover your costs over there. So there's quite a lot involved in it.

Chris: Okay, and have you had to use it?

Kevin: No, fortunately we haven't had to use it. We've always taken it. It's cost us a fortune over the years, but it's just one of those essential costs.

Chris: [08:05] So what advice then, additional advice, would you have for other stroke survivors who are looking at travelling after a stroke?

Kevin: Oh, I think there's a lot of things. Things like passport. I mean, any travel overseas you need to make sure your passport has at least six months on it. So you need to check that fairly early on. I'd suggest going to see your doctor at least six weeks before you travel. It's very important to get injections for wherever you're going to, so discuss exactly where you're going. You can go to a medical expert in overseas travel injections. But also get properly checked out and get their advice of what they think you're capable of doing and not capable of doing.

Another thing, I think, is money. You need to take at least one or two credit cards and possibly cash cards through Qantas or somebody like that, where you can load up in other currencies and that can cover your costs. And take some foreign currency with you because, particularly when you first arrive, you may need some foreign currency before you can get to a bank or somewhere like that to get any more money.

I think another important thing is, this is a very good website, smartraveller.gov.au. And you can go on that site and it's got a lot of information about travelling under all sorts of circumstances, including travelling with disabilities. You can also register exactly where you're going. I think that's quite valuable, where you can say, now, this is where I'm going to be each day of your trip. So if something happens and they need to contact you in a hurry, they know where to start if you're overseas. And they also issue warnings, so if you're going to a country like, for example, China they might have warnings about places that they don't recommend you go to. Well, then they'll put those advices out and you can pick those up anywhere in the world and get up-to-date information on what's safe and what's not.

So another one is I think important is advise your bank of your travel plans. Because we've had that experience of going to Malaysia and trying to use our credit card, and finding it was blocked because we made another purchase a little bit before. So if you advise your bank where you're going, where you're travelling to, they'll be a bit more lenient in terms of blocking your credit card if you put a transaction on it.

I think also check out the hotels that you're going to go to. I mean, a lot of hotels around Europe and places like that don't have lifts, so using stairs. Often the bathrooms are not what we're used to in Australia. They often say they've got disabled bathrooms, but often their idea of a disabled bathroom is not particularly suitable for a disabled person. So ask about that at the places you're going to and make sure it suits your particular needs. Particularly if you're going to places like China, their idea of toilets is quite different to our idea of toilets.

Another one I had a few interesting experiences on was getting in and out of swimming pools. Getting in was easy enough. Getting out was the issue. So a couple of times I got in and had to get help from somebody there to help get me out of the pool. And the other places like Galapagos Islands, places like that, so a couple of times I got into a little boat and it was quite an issue to try and get me out of it. So I think over the years I've learnt to make sure, wherever I go, I know how I'm going to get back out of that situation again. And just be mindful that there's some things that you probably can't do as well as you used to be able to do. But overall, with a bit of forethought, you can do most things that you thought you could do.

Chris: Well, thank you very much, Kevin. There's some excellent advice there. And, look, we hope you also keep up the good work of speaking up for other stroke survivors as well.

Kevin: Yeah, I certainly will.

Chris: Thank you. That was stroke survivor Kevin English.

Announcer: [11:42] If you're a family member or friend of someone that has had a stroke, you know that it's just the start of a long journey to reclaim their life. As one of Australia's biggest killers and the leading cause of adult disability, we still have a long way to go until we can say we have beaten it. At the Stroke Foundation, we draw our inspiration from the determination and persistence of stroke survivors, and that's why we work every day to prevent, treat and beat stroke.

There are many ways you can join us to fight stroke, including volunteering your time, telling your story for us to share with the media, speaking up and approaching your local member of parliament with our advocacy team, getting your workplace or community group behind an event like National Stroke Week or Stride4Stroke. Running a fundraiser, donating or leaving a lasting gift in your will, or just by sharing the FAST message with the people around you, so all Australians will know how to recognise a stroke and act fast. Join the Fight Stroke team. Find out more at strokefoundation.org.au.

Chris: [12:41] Next on the line we have associate professor Steven Faux. Steven is the director of the Sacred Heart Rehabilitation and Saint Vincent's Pain Service, Darlinghurst, and he's Associate Professor in Clinical Medicine at the University of New South Wales. Thanks for joining us, Steven.

Steven: Thanks, Chris.

Chris: Now, you're a rehabilitation physician, I believe. For those who aren't familiar with the term, could you please tell us what a rehabilitation physician does?

Steven: Well, a rehabilitation physician is the medical leader of a team of allied health therapists, doctors and nurses, who focus on improving your ability to return to work and normal functioning after a stroke. It's not just a stroke, it can be all sorts of disabilities, but for those who've had a stroke the rehab physician helps coordinate the dietitian and to make sure that you eat properly. They coordinate the physiotherapist to make sure you train and exercise well to try and regain your walking.

The occupational therapist makes sure that you return to work, or return to looking after yourself. The psychologist to manage your mood, the social worker to get your finances into check. Essentially, it's like being the coach of a team with the stroke person being an elite athlete and everyone working to get them to peak performance.

Chris: [14:06] Now, when we're talking about peak performance, I imagine one of the things that people want to perform at is getting back to their normal life, which includes things like travel. How often do people have travel as one of their goals for their rehabilitation?

Steven: Well, in my experience it's fairly common, because stroke occurs at all ages, but for many people it occurs at a time when they're planning to take long holidays or they've been saving up to go overseas or something like that, or to travel around Australia. And so people are very focused on returning to that dream, particularly when that's one of the things they're worried that they may not be able to achieve again. So it's not uncommon that people ask me about, will I be able to travel to Victoria next for a wedding or whatever.

Chris: [15:01] Okay. Now that, I guess, cuts to one of the big questions that we wanted to ask, which is the guidelines or when can people actually travel after a stroke? For starters, I suppose, flying. Is there any sort of rule of thumb about when people can fly after a stroke?

Steven: Yeah, well, it's interesting you say that. There's no evidence for it. There's always been a rule of thumb that says six weeks, but there's no proof that that's the right time or not. There is, however, a bit of an issue for anyone who's had brain surgery as a way of managing their stroke. If you've had brain surgery, then air has been allowed to go inside your skull. And if that's the case, you can't fly until a CT scan of your brain shows that the air has dissipated. And that happens to be around about six weeks. And that's important because of the pressure differences in the flight cabin. That doesn't stop people who've had brain surgery from travelling by road or sea or train, but it does prevent air travel.

One of the main issues I have with people travelling after a stroke are, so long as they're able to get themselves on and off the flight and to and from the toilet on the flight, and they're not going to have trouble boarding or getting off the flight carrying their luggage, etc., there shouldn't be too many problems with travelling after a stroke.

Chris: [16:34] Okay, so that functional ability, is that the kind of thing that people need to consider before travelling?

Steven: Yeah, I think so. I mean, quite often you've got to think about how you're going to get your luggage to the airport and who's going to carry it and how you're going to get it off the carousel. The airlines will often help you, but that doesn't apply to rail or car travel. And then, of course, the other thing is airports have got very long distances for people to have to walk, both in Australia and overseas. And so you have to be mindful of whether you're able to walk for sometimes up to seven or eight minutes. Happily, with enough warning, airlines and airports will provide transport to people who've suffered strokes so that their walking is kept to a minimum.

Chris: [17:32] Okay, now in terms of issues with flying, one thing that a lot of people might be concerned about is deep vein thrombosis, or DVT. Is that something that's a particular issue for stroke survivors, and is there something that people can do about that?

Steven: Well, for some stroke survivors there's not as much of an issue because they're already on a blood thinner, or so they should be. And for many people who've had atrial fibrillation after their stroke, they're on anticoagulants, like the novel anticoagulants or warfarin. So for those people it shouldn't be a problem. For people who've had a brain haemorrhage where you don't usually go onto a blood thinner, you do have to pay a bit of attention to moving your feet around to try and prevent clots.

Now, for those who've got a hemiparesis or an inability to move an ankle on one side, there is a slight increased risk of getting a clot in the leg while flying. Now, in the first few weeks of the stroke when there's a lot of inability to move the limb, it's probably more of a risk than it is later on as the patient responds to rehabilitation and they're able to move their legs around.

For those who aren't on any blood thinners because they've had a haemorrhage into the brain, they might need to wait until it's safe for them to use anti-platelet agents. And when they're able to use anti-platelet agents it's probably wise to take an aspirin before flying just to ensure the risk of the clot in the leg is less. Ideally, people should move their legs around and move around the plane if they can. Or the train or, of course, on a boat. And that mitigates against or prevents the clots from forming.

Chris: [19:45] Now, I guess from what you said there about, particularly people who've had a bleed may not be able to take blood thinners, is it the kind of thing that for anyone who's had a stroke they should speak to their doctor before they commence a large trip?

Steven: Yeah, I think it's something that you should be discussing with the rehab physician or the general practitioner or the neurologist. Particularly if you've had a bleed into the brain. But more so the other issue is if the stroke has affected your ability to move one side of your body, then you really need to think about keeping active during the flight or on the train. And definitely speaking to your GP or neurologist or rehab physician.

Chris: [20:33] Okay. Now, we did put a call out for questions for this podcast from our stroke survivor community. Now, there's one from Bronwyn that is rather specific but touched on some good points, so I'm going to read most of it out pretty much straight. She says that we all know the first four hours after a stroke are critical. She's going on a cruise, so what she wants to know is would her GP prescribe a clot-buster for her to carry in an emergency, or do cruise lines like Royal Caribbean carry such drugs in case of an emergency? Or is there anything she can do, including taking additional blood thinners, to prevent a stroke?

Steven: Well, that is a great question. That is a great question because one of the things it implies is if you're at sea and you have another stroke, would you have access to emergency treatment? The emergency treatment of the clot-busting drugs are intravenous, so they're not oral. Although we do in some cases use a whole aspirin, and that would definitely be available on a boat, and shouldn't be taken unless you've spoken to the doctor. And most boats, particularly those large cruise liners, will have a medical clinic.

Unfortunately, the ability to use clot-busting drugs is not something that should be available to the individual, but rather through the medical clinic. And in the modern age, the medical clinic might be able to have access to telehealth, to neurologists in one of the closer countries to wherever they are travelling. But the problem is most clinics in large ships won't have a brain scanner, and you'll need to have a brain scan before any decision about a clot-busting drug can be given. So great idea, but the technicalities make it sort of not possible. Having said that, if you do have a recurrent stroke, seeing the doctor and getting the doctor to make calls and tele-calls to neurologists or emergency physicians is probably a very good idea in the early phases, in the first few hours of a stroke.

Chris: [22:49] All right, fantastic. Now, do you have any other advice that you might give for stroke survivors or their carers about travelling after a stroke?

Steven: Yeah. The first thing is, I'd encourage it. I'd say, look, if you've had a stroke it's pretty devastating and you fear that you're going to lose all your dreams and hopes. So if you've had a dream to travel, don't give up on it. You may not travel exactly the same way as you had dreamed, but you can travel. And rehabilitation physicians are particularly good at helping people travel. And there are a lot of resources out there for helping people with mild or moderate disabilities travel.

So my advice is absolutely do not give up on your dream of travelling with a disability. And following a stroke, if you had always dreamed that you were going to travel, I would be doing it. So it is a legitimate thing to discuss with the rehab physician or the GP, and if you go onto any website and look at disability and travelling you'll find a myriad of places that will tell you hotels with really good facilities, if you need bigger bathrooms. They'll tell you airlines that are particularly good at getting you on and off planes with attendants. And I'd say travel, if that's your passion, get back to it. As a rehab physician, nothing pleases me more than to have patients come back and say, I eventually did take that trip.

Chris: Thank you, Steve. That's a very positive message.

Steven: Thank you very much. And thanks for inviting me on on your podcast, Chris.

Chris: Our pleasure. That was associate professor Steven Faux.

Announcer: [24:31] Setting goals is crucial to stroke recovery. Goals can be as simple as walking to the letterbox to check the mail, or bigger goals like getting back to work. EnableMe has a unique tool where you and your carer or family can plan what you want to achieve, track how you are progressing and celebrate your successes. You can also connect with other people who set goals similar to yours, and challenge or inspire each other. You can even set up a blog to write down how you are feeling and share your own story. And don't forget, our professionals from StrokeLine can help with personalised and confidential advice to help you grow stronger after stroke. Visit enableme.org.au.

Chris: [25:11] Now, our final guest is one of our regular StrokeLine representatives, occupational therapist Simone Russell. Thanks for coming in, Simone.

Simone: My pleasure, Chris.

Chris: Now, I imagine that on StrokeLine you've heard a lot about stroke survivors wanting to travel. What are the main concerns that you hear?

Simone: We do get enquiries around travel and they vary, really. Sometimes we get people calling us when they've had a stroke overseas while travelling. So I think Kevin touched on his experience personally, and that's a common one that we do get. You know, how do I get home? What sorts of things do I need to consider? It's usually from a loved one or a carer that might be with their loved one who's had the stroke.

And so those are the first calls we get quite a lot of. And then we also get calls around more longer term, people wanting to get back to travel. And even in the short term phase, someone might've had a stroke that had a holiday booked and they want to perhaps talk through whether that's possible, whether it's best to put that travel off or postpone it for a period of time. So it definitely does come up. Sometimes people call us as well to find out about whether they can fly. That's a really common enquiry that we get, and I think Doctor Faux has touched on that quite nicely around some of the considerations for flying.

Other things too that can come up is that fear of having another stroke. And so if someone does decide they want to go travelling, what to consider if there's that fear or anxiety there about having another stroke, or another medical emergency while away. We get lots of enquiries around travel insurance as well. What do I do, where do I start? How do I go about getting adequate cover? Also enquiries even around local travel, so things like, I've returned to driving but someone might have significant fatigue and so they might call us to talk about fatigue as an issue for driving longer distances and wanting to troubleshoot that. And accommodation enquiries as well are quite common, and equipment enquiries. So what sorts of accommodation can I explore in terms of travel either in Australia or overseas, and also equipment, and where they might be able to access that to enable travel.

Chris: [27:07] Okay, I'm probably going to get you to follow up most of those, because you went through quite a few issues there. Now, I guess, as you said, we've spoken to Steven Faux at least about flying after a stroke. When we're talking about things like having a stroke overseas or medical emergencies this is, I suppose, where the travel insurance nicely mixes into that because having travel insurance is a kind of protection there. But it is also a challenge. How do you get travel insurance after you've had a stroke?

Simone: Yeah, it's a really good question. I think Kevin's touched on this one as well. I think usually inquiring with a range of different insurers is a good starting point. Finding out what, I guess, the best options might be for your particular needs. So where you'd want to travel, what you need to be covered? I think Kevin really touched on, if you can't afford the travel insurance then can you actually afford to be travelling? I think it's really an essential part of travel.

I think, too, coming online to EnableMe is a great place as well to start. So there's lots of conversations around other stroke survivors, different experience of finding travel insurance that's appropriate. But in some cases the preexisting condition might not be covered, and so it's checking in, is it covered, is it not covered? There might be differences in premiums, depending on what cover you get. But I always say it's similar to, I guess, anyone that's wanting to travel. Phoning around, getting different quotes and really making sure that you feel well-informed and you know exactly what you're covered for, and what's not going to be covered if there are any exclusions.

Chris: Yeah. And I guess, as you said, you can go onto EnableMe and you can see other people's stories. But your situation might be different and you can't take their costs or requirements.

Simone: Absolutely. It really is a case-by-case. Everyone's stroke is different, everyone's medical history is different as well. And so insurers may want to know more information that's really specific to your particular medical history and stroke.

Chris: [28:58] Okay. Now, next on the list, accessible accommodation. How do you go about finding accessible accommodation?

Simone: Yeah. Well, I'm going to go back to Kevin's comment around, do you decide to self-book or do you go through a travel agent or even a travel agent that may specialise in tours or even disability travel? I think if you're going to self-book, there's a lot of options now online. So going to pretty much any kind of accommodation search function will show you can actually select disability access, and then that gives a lot of options to see what might be available. Particularly if you're looking at a weekend getaway in Australia perhaps, it's very, very easy to see who has accessible accommodation. And then making phone calls to find out exactly what that involves.

I think Kevin touched on, sometimes overseas there, someone's idea of accessible bathrooms, for example, might be very different to what we have here in Australia. So taking that in mind and I think going through a travel agent can be one option to kind of know that they've had experience with that particular hotel or accommodation before. That can be really helpful. You can see often now a lot of photos online, so that can give you a bit more of a kind of idea about what to expect in terms of standards of disability access.

again, using the community. So lots of stroke survivors have experience with travel, finding out if they've got any recommendations. But yeah, generally now there's lots of options online to just see what's out there and to have a look at photos yourself. But definitely, again, having an open conversation if it's a travel agent you're going through or a tour guide company. You know, really finding out what the level of accommodation's going to be like and is that suitable for you? And is any other equipment needed, if that's required to make it safe and enjoyable?

Chris: [30:45] Okay. Now, speaking of equipment, so if you, for instance, do need special aids or support, such as wheelchairs or even a carer to look after you while you're travelling, is that the kind of thing that you can look at hiring at the destination?

Simone: Yeah. Look, you can. I mean, I guess if you're looking at travel in Australia that's much easier to organise equipment ahead of time. If you're doing a self-booked holiday, planning it and it's overseas and you're needing equipment at every different place you're going to, that might be a little bit more challenging to coordinate and to rely on.

So I think again weighing up what it is you need specifically. Even working in rehabilitation, it might be that actually with a little bit of work on, say, transfers for example, that getting on and off a low toilet, it's not as big an issue as it might be originally and you might not need equipment for it, for example, a few months down the track. So you can really look at rehab goals as well, tailoring towards working towards some of those things.

But I think getting a really clear picture about what equipment needs you have. If it's something you can take with you, like a stick, for example, what that might be. If it's a wheelchair, is that something that comes with you from the start to the end of the journey? And what may be better to hire or to arrange at the destination or at the accommodation site. But, yeah, it's not impossible. I think really being aware of what you need and then finding out what the best option is, what's going to be easiest to manage.

Chris: [32:08] So I guess then to sum up, would you be able to give us your top tips for people travelling after stroke?

Simone: I think the first one would be planning ahead. So really doing your research and preparing well. There's a lot of checklists out there that you can use. But the other thing is to think about what you would consider even before a stroke if you were to go on a trip or a holiday. So thinking about all the sorts of things like weather, clothing, equipment as we've touched on, any medication that you might need, making sure that you have enough of a supply of medication as well, that you're not going to run out mid-trip.

The environment, so looking at the accommodation and looking at transportation. So whether that's trains, whether that's planes, whether that's cars, or any other transport you might be using. If it's getting off boats, buses, all of that sort of thing. And really mapping out an itinerary. I think Kevin also touched on using Smartraveller to document where you're going. Even that sort of old, I guess, tip of having an itinerary and leaving it with a loved one so they know where you're at and what you're doing as well.

And it might sound a little bit negative, but thinking about what could go wrong I think can help some people, particularly if there's any fear or anxiety about travelling. So really making sure that you know what the emergency number is in a foreign country, for example, so if there was a medical emergency you know you feel comfortable to get medical help. Knowing perhaps where the nearest hospitals are if you're in major cities, or how you might get help if you are in more rural areas. And even things like knowing basic language for asking for help, those kinds of things can help as well if you're feeling nervous or if there's anticipation around travelling.

Other things like start small. I think we've talked a lot about overseas travel today, but thinking about building up slowly if you're not confident or if perhaps you've not been a confident traveller. So things like, it might be just getting to, say, a family wedding, for example, which might be in Australia. That might be your first step. Or it might be going for a day trip somewhere or going away for a weekend, and then building up to longer trips or even overseas trips. That can be a really good way to just start to get some confidence and experience travelling again after stroke, and problem-solving some of the things that might happen as you go.

Considering all alternatives and being open is a really important point. So I think Doctor Faux touched on this and it's really about, you may not be able to go on that six week overseas trip to start with, but being open to other alternatives. It might be things like a cruise, which you might not have considered before. But it's an easier option to still be able to get out and enjoy travel. Or it might be a tour-operated holiday. Other things we've talked about, the insurance obviously is a really important one which we've covered. Speaking to your doctor we've covered as well. Really making sure that you have a conversation with them and that can be the rehabilitation physician, the GP or the neurologist.

Really asking any questions, writing down your list of questions so that you feel prepared. Speaking to the rehab team I've touched on as well. So if travel's a goal, make it known and start to actively work towards different steps in your goal. And it might be also recruiting family and friends as well, and making sure you've got support. Sometimes carers are needed to facilitate travel, so talking about that with the team. You know, is it possible to have a paid carer go on a trip with you?

Other options and advice I would have is to call us on StrokeLine. Each case is different and we can sort of tailor the advice specifically to you. So give us a call. We can troubleshoot any questions, problem-solve. And EnableMe I've suggested already before, but get online, start some conversations. There's already some fantastic conversations on travel in EnableMe. And people like Kevin are such a wealth of experience and knowledge, and it's really important to communicate with each other and share these tips. I think it's really inspiring to see stroke survivors like Kevin getting out there and travelling, and really showing people what's possible.

So, yeah, I think I'm just going to end by, I guess, echoing Doctor Faux's comments around if this was a goal, if this is a goal, don't think that just because you've had a stroke that you can't travel. You know, keep working on it and go for it.

Chris: [36:08] Great. Thank you very much, Simone. That was occupational therapist Simone Russell. And as Simone said, if you want to speak to a health professional, you can call StrokeLine on 1800 787 653. That's 1800 STROKE. Or you can ask a question through EnableMe and get a response from health professionals and other stroke survivors.

That is all we have time for today. If you like what you've heard, please give us a good rating and review on iTunes or whatever service you're using, as that helps lift us up in the search rankings so other people can find our podcast. Thanks again to our guests, Kevin English, Associate Professor Stephen Faux and Simone Russell.

And thank you to AllClear Travel Insurance for supporting this podcast. If you need specialist travel insurance after a stroke, you can visit our website, strokefoundation.org.au/travel to obtain a quote. Or call 02 9333 3922 and use reference number AST when you speak with an AllClear Travel Insurance representative. With any policy purchased, AllClear will make a contribution of up to 20% of your premium, excluding GST and stamp duty, to the Stroke Foundation to help us continue to support stroke survivors in the community.

Announcer: [37:19] 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 health care 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.