Fear of a second stroke

Episode 2, 22 April 2016

For anyone who’s had a stroke, one of the biggest fears is whether it will happen again. We speak to general practitioner and author Dr Bill Williams, stroke survivor Nikki Mennel and occupational therapist Simone Russell about how not to let that anxiety hold you back. And with Australia’s Biggest Blood Pressure Check underway, we discuss what you can do to reduce your risk.

Dr Bill Williams is a general practitioner and author of the book Bleed: Surviving cerebral catastrophe, a tale of the mind, love and modern medicine. It tells the literally life-and-death story of what happened when his wife Gisela had a brain haemorrhage while the two of them were camping in outback Australia.

Nikki Mennel had her stroke at the age of 39, which turned her life upside-down, but ultimately in a good way. She has since started her own business, and she shares her inspiring story as one of the Stroke Foundation’s StrokeSafe Ambassadors.

Simone Russell is an occupational therapist and one of the health professionals who answers questions on the National Stroke Foundation’s StrokeLine, 1800 STROKE (1800 787 563) and at enableme.org.au.

Podcast transcript

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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.

You can join the conversation at enableme.org.au.

This series is presented by Australia’s National Stroke Foundation and sponsored by Allergan.

Chris: Stroke is hard to predict, but there are some known risk factors like high blood pressure. This April, the Stroke Foundation together with Priceline Pharmacy is running Australia’s biggest blood pressure check. We’ve found that on average 25% of people who get checked find out they have high blood pressure and get a referral to do something about it and to reduce their risk of stroke.

But as important as this is, it’s even more crucial for those who’ve already survived a stroke. While it’s good to be aware of the risks, living with that anxiety can be a problem itself.

The fear of another stroke can become crippling and it can hold you back from recovering your normal life. What can you do to both reduce your risk and to cope with those fears?

Joining us once again we have occupational therapist Simone Russell, who frequently has to answer these questions on the Stroke Foundation’s StrokeLine, and who has some excellent advice on acknowledging and managing your emotions. Hello Simone.

Simone: Hello Chris.

Chris: Later on, we’ll also be speaking to general practitioner Dr Bill Williams, and now as well as giving us the medical perspective on reducing your risk, Bill knows first hand the effect that stroke can have on a person and their loved ones. His book, called Bleed, tells the literally life-and-death story of what happened when his wife had a brain haemorrhage when the two of them were camping in outback Australia.

But first, we have stroke survivor Nikki Mennel. She had a stroke at the age of 39, which turned her life upside down, but ultimately in a good way. She has since started her own business and shares her inspiring story as one of the Stroke Foundation’s StrokeSafe Ambassadors. Thank you for joining us, Nikki.

Nikki: Thanks Chris.

Chris: Now, I guess the best place to start is with your stroke story. Could you tell us about it?

Nikki: Yeah, certainly. In 2011, I was really stressed, I had a job that I didn’t really like and I wasn’t really looking after myself well. I woke up one morning and my hands weren’t working properly. I thought I must have just been tired. I went down to talk to my husband and then this jumble of words just came out of my mouth. And systematically, my body just literally shut down. I wasn’t able to speak. I couldn’t move and I couldn’t stand anymore.

From there, I spent five days in hospital and I realised I’d had the two strokes, one at home and one in the hospital. The funny thing was they couldn’t tell me what had happened and that in itself was really difficult moving forward, because what do you change if you don’t know what to do?

Chris: Right. So how did you do that? How did those worries and that uncertainty affect you?

Nikki: The fear I suppose of having another stroke was really a big concern. I used to have a lot of dreams about it and wake up feeling like I’d had another one. I was constantly concerned about leaving the house and if I had another one, would someone help me? Would it be more debilitating than the one that I just had? I’d often be doing my own little Mexican wave and putting my hand in the air to make sure my arms were okay and checking my face in the mirror.

Chris: Oh, so testing the FAST.

Nikki: Testing the FAST, absolutely because at least I knew then if something was wrong, I can at least try and call someone while I was still able to. It was just in that constant underlying fear. The more I focused on it, the more it grew.

Chris: What happened? Did you eventually overcome those fears or did you learn to cope with them?

Nikki: I did and what I realised was that it wasn’t really helpful emotionally to be focusing on it and really all I’ve done is replace one stress with another stress. The stress of having a job that I didn’t enjoy was now the stress of having another stroke. I was really just spending time worrying about something that may never happen. And when I focused on the fear, I realised that it wasn’t helpful so what I do is just acknowledge it and then I’d change my state. I’d either go for a walk or get lost doing a bit of art and painting, or eat something healthy. I did something that was going to focus on looking after my health and something that was going to be good for me going forward rather than focusing on something that was really a waste of my time.

Chris: Okay. I understand that you’ve really, as you said, focused on your health as opposed to specific concerns because as you said, you didn’t know what caused your stroke. Could you tell us what changes you made then? Changes that helped your anxiety, but also did things like positive to reduce your chance of a second stroke.

Nikki: Certainly. I spent time focusing on making sure I was eating properly. I started to look for foods that were going to help with brain repair and causing new connections, how to clean my blood and look after that, so lots of greens and fresh fruit, fresh vegetables. So a lot of food and also exercise. I had a real love/hate relationship with exercise and I really started to enjoy taking a walk around the park. I could actually use my body again and really, really appreciate having that rather than exercise being something I had to do. Even things like just catching up with friends or watching a funny movie and things like that, so those sort of things I did that would really feed my well-being and look after myself emotionally rather than focusing on something that may never happen and was just getting bigger and bigger. It wasn’t helpful to focus and stress about another stroke, so I did things that were going to be good for me.

Chris: Okay, so it was doing stuff that’s good for you, that makes you feel better about yourself. That’s two things, like it reduces the fear but then ultimately makes you healthy as well.

Nikki: Yeah, exactly. I think whatever you focus on is going to get bigger so if I focused on getting well and looking after my well-being, that became my main concern and that became a fun thing to do, rather than focusing on something that was not going to be helpful for me or going to be very upsetting for me as well. There was no gain in that for me.

Chris: How do you feel you’re going now?

Nikki: I feel great now. I’m four and a half years on. I don’t have any fear about having another stroke anymore because I’ve really looked at everything in my life and changed all the things to reduce my stroke risk, but also to enjoy life more and have more fun. We certainly laugh a lot more at home and focus on things that are silly and make life good I suppose, rather than worrying about work and stress and all those things. We changed, for my husband and I both, our focus in life. For that point of view, it’s actually been a really good thing that we look at life differently now because of that incident, that it’s had some silver linings.

Chris: Okay. What advice then would you have for other stroke survivors?

Nikki: If it’s about a secondary stroke or another stroke, my thought would be acknowledge what’s happening but then change what you’re doing. Don’t continue to focus on it. Shift your focus to something else. Find something that you like to do and focus on that, whether it be gardening or bird watching or whatever floats your boat. I would really shift to that straight away. It’s one thing to know what’s happening, it’s another thing to continue to indulge in it I suppose. My thought is, find something that you like to do, do something that’s going to be good for your well-being in that moment.

Chris: That sounds very good. Thank you again for talking to us, Nikki. I hope you continue to do all the things that you love.

Nikki: Thank you so much.

Announcer: 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. 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: We’re talking about the fear of having another stroke and what you can do to reduce your risk. Joining us now, we have Bill Williams, a general practitioner and author of the book Bleed: Surviving cerebral catastrophe, a tale of the mind, love, and modern medicine. Thanks for joining us, Bill.

Bill: Thanks for having me, Chris.

Chris: I’ve read your book. It is a real heart-racing tale, perhaps not the best thing to keep my own blood pressure low I suppose. For those who haven’t read it, could you briefly describe what happened to you and your wife, Gisela?

Bill: Briefly, Gisela my wife and I were on our way to visit an Aboriginal community about 500 kilometres west down the spring five years ago, April 2011. We went to sleep one night in the bed of the Finke River and she woke up the next morning with a sudden onset of a terrible, terrible headache, what we call in the business a thunderclap headache and started vomiting. I recognised that they were the presenting features of a burst blood vessel in her brain. I realised that she needed a neurosurgical operation and that the nearest neurosurgeon was about 1500 kilometres away. I quickly got her into the back of the vehicle and raced back into Alice Springs and into the emergency department there. They put her in a CT scanning machine which confirmed the diagnosis and the next thing we were on an emergency flight out of Alice to Adelaide to that neurosurgical operating theatre that she needed to be in. It was an amazing scenario. I think it was about 6 o’clock in the morning when it all started and we were in the ED in Adelaide twelve hours later.

Chris: Bill, this is just obviously a very brief description. There’s a lot there going on in the book of what you and your family went through, especially also to get her through to recovery I think as well.

Bill: Yeah. I can sort of package it into two sentences or into a whole book, but basically even just that initial recognition thing, what was going on, why she had such a terrible headache, did she bump her head in the middle of the night or is this the first time she’d ever had a migraine, it was something like that. I’d seen enough of it over the years and I just had a horrible suspicion that something really bad was happening and that we needed more help than we were going to get in the Finke riverbed.

Chris: This was a haemorrhage. Can you just explain briefly the difference between a haemorrhage and a clot or an ischaemic stroke?

Bill: Sure. The brain tissue is supplied by blood vessels like all the tissue in the body and we have this fantastic array of blood vessels in our brain. Sometimes they develop a little defect on them, almost like a bubble on one of the blood vessels. When the pressure gets too high inside that bubble it can burst and that’s what’s called an aneurysm, a burst aneurysm and that causes a haemorrhagic stroke, so a stroke that’s caused by bleeding. The other type of stroke, which is actually more common, is called an ischaemic stroke and that means that there’s a blockage in the blood supply.

It usually means that a little piece of blood clot has flicked off somewhere else in the circulation and got stuck inside the brain blood vessel, or sometimes it’s a little clot that’s forming slowly in situ, in the actual brain blood vessel, but whichever way it happens, it means that the blood can’t get up those little tiny arteries and into the brain tissue which means that there’s no oxygen and little micronutrients that your brain tissue needs. Essentially, a patch of brain tissue becomes starved of oxygen and micronutrients and if it’s not corrected fairly quickly, that brain tissue can stop working and kind of die, and it depends which part of your brain is being affected, what kind of a stroke you have and how serious the consequences can be.

Chris: Are there similar risk factors of both these types of strokes, or are they completely different?

Bill: The two that come to mind immediately would be high blood pressure, and that can certainly be involved in both the blockage type of stroke, ischaemic stroke, and the burst vessel type of stroke, haemorrhagic stroke. And the other one I think would be smoking. Anything that injures blood vessels can be a predisposing factor for both types of stroke. And then all the other kinds of lifestyle things, like high cholesterol or being overweight, that sort of thing can also be contributing factors as well.

Chris: Do you have many patients who then will come to you after having had a stroke and are concerned about what they do next?

Bill: Yes. Stroke is pretty common. I think it’s about one in six people in their lifetime in Australia will have a stroke. I’ve got quite a few patients who have had strokes. It’s a pretty broad range of people. Some of them are quite young and some of them are very old and some of them have major disabilities and some of them have recovered completely. It’s a very broad range of presentations of people. Of course, they’re all concerned about the future and partly about what can they do to prevent having trouble like that in the future.

Chris: What sort of things do you tell them?

Bill: Well, stop smoking. Usually, they’ve already worked that one out by the time they come to me. There aren’t very many people who keep smoking.

Chris: Okay, that’s good to hear.

Bill: Yeah, it’s a corrective. It’s a little bit like heart attack. There aren’t that many people who keep smoking. Some people do, but it’s a shock to the system, most people will stop smoking. In terms of correctable things, blood pressure, so we can help people with their blood pressure. Sometimes that’s sort of addressing so-called lifestyle factors like activity and diet and weight and things like that, or it might also be taking medication to keep your blood pressure in the healthy range.

A lot of the people I see, especially in the older age group who’ve had a stroke, have an irregular type of heart rhythm called atrial fibrillation and that means that the hearts been beating in a funny way and little bits of clot have formed inside the heart and then flicked off into the brain circulation. Those people will usually be taking some kind of medication to keep their blood a little bit thin to prevent blood from clotting again. Maintaining their medication in that way and making sure that they’re safe and healthy on those medications, that’s a pretty common thing. It’s just things like making sure that their cholesterol is well-controlled, making sure that their blood sugar is in the normal range or as close to normal as you can get it if you’ve got diabetes.

I think really it’s very, very important for people to try and adopt the basic healthy lifestyle things that we talk about with everybody in terms of diet and exercise. I think exercise is very important. Perhaps also for people who’ve had a pretty big shock to the system to have a stroke and potentially end up with a disability, trying to have a positive attitude and working on enjoying life and trying to do things that you actually enjoy doing, and finding things that you can do now that maybe you couldn’t do before, or learning to live with whatever disability that you may have acquired and also maintaining the positive attitude.

It’s quite extraordinary the progress I see people make, because I work in general practice, so some of my patients have been seeing me for decades. I see people from five years down the track, they’ve had a stroke and they’re still gaining. They’re still getting stuff back that they thought they would never get back, in terms of memory, or being able to drive a car, or something like that. You might be feeling pretty glum about things even 18 months after a stroke, don’t feel too glum. If you keep at it, you may well find that there’s all sorts of stuff you’re going to be doing in years to come that you thought you’d never be able to do again.

Chris: I guess that’s why it’s important not to let things like the worries about another stroke, or to get control of those and not let them hold you back, because it is doing those normal activities that’s going to help you recover better.

Bill: Yeah, absolutely. It’s true that people who have had one stroke have a higher risk of having another stroke, but that’s partly about managing those risk factors I was talking about. I was talking about blood pressure, talking about not smoking, getting out and being physically active, those sorts of things. That definitely will enhance your life, as well as reduce the chances that you’re going to have some other event like that.

Chris: So I guess the message is then to speak to your doctor and do what they tell you to do in terms of taking your medication and improving your lifestyle, like you say.

Bill: I’m of the partnership view about it. It’s not so much that they should do what I tell them. We work through this together. People come and see me, they already know a lot about it often, because they’ve had other people talking to them about it. It’s helping people find their way on what is in some ways a new pathway for them and being as optimistic as possible about it, and using the knowledge we have about not smoking, about having good blood pressure, about watching your blood sugar. But also getting out and about, getting active, physically active and eating healthy tucker, those sorts of things are very important.

Chris: Fantastic. Well, that is a great positive note I think to finish on. Your book, it is called Bleed. I understand it can be found at your website, which is billwilliamsbleed.com.

Bill: That’s right. If people just go to the website, they can buy it online, they can buy it as an e-book or order a hard copy, or all good bookstores should have copies and they should be able to order it in without any great difficulty.

Chris: Fantastic. Thank you for speaking to us again. That was Dr Bill Williams with some advice about preventing a second stroke.

Bill: Thank you.

Announcer: When you or someone you love has a stroke, you are instantly bombarded with a whole lot of medical terms and it’s pretty hard to take them all in. It’s like learning a whole new language. To help you, we’ve created Strokeasaurus, a glossary of stroke terms. It’s an A-to-Z guide of the language used around stroke, from atrial fibrillation to Webster pack. It explains key terms in simple language. You can access it on your computer, smartphone or tablet at enableme.org.au.

Chris: We’ve heard some amazing stories about the effect of stroke and what you can do to prevent having another stroke, but how do you make sure that these fears of this other stroke don’t hold you back? To help us, we have Simone Russell with us. She’s an occupational therapist who you can speak to on the Stroke Foundation’s StrokeLine. Simone, thanks again for joining us.

Simone: My pleasure, Chris.

Chris: Now, what can people do to cope with their fears of another stroke?

Simone: There are a number of things that people can do to cope with the fear and anxiety that can come after having a stroke. The first thing I usually suggest is to speak to a professional, and that might be a GP, it might be a psychologist, it may be a member of the rehab team. It could also be StrokeLine, so giving us a call to talk about some of the anxieties and fears that may be coming up. It’s also useful though to talk to family members, and also stroke support groups can be a great resource as well to actually talk to other stroke survivors about how they have gone on their journey, particularly with this issue of that fear of having another stroke.

Chris: Okay and I guess something like EnableMe website, with enableme.org.au…

Simone: Absolutely.

Chris: …that people can connect with other stroke survivors.

Simone: Absolutely, and have a conversation and see what they found helpful as well. Some of the other things, so working with a health professional, particularly a psychologist, they can look at more of the, I guess, cognitive behavioural techniques around managing anxiety and fears. So de-catastrophying the situation. I think Bill also mentioned knowing what the cause of the stroke was, knowing what the risk factors were and making sure that they’ve been addressed to minimise the risk. Knowing that you’re doing all that you can to minimise your risk of having a second stroke.

Other things like trying mindfulness can be really effective as well. When we have a fear or anxiety and worries, usually that’s based in something in the future, which means we’re not in the present moment when we’re thinking about the future or too far ahead. So really looking at that concept of mindfulness, really being aware of the thoughts and not analysing or judging the thoughts so much, so learning to come and sit with those thoughts, without really attaching to them as such. You can also learn mindfulness with a qualified clinical psychologist, and there’s other professionals as well that can talk you through that process of mindfulness.

Chris: Okay. When you said de-catastrophying it, is that the same thing of not amplifying the emotions too much, is that what you mean by that?

Simone: Yeah. De-catastrophying is really around what’s the worst case scenario, so really minimising I guess the drama around, “What if I could have another stroke?” Noticing that there are many risks to life and if we know that our risk factors are being minimised, we’re taking our medication, we’re seeing the right health professionals and doctors for our stroke and our risk factors are getting regularly reviewed, etc., then we know that we’re doing the best we can. Usually people tend to have a history of perhaps catastrophying situations or events. If there is a history of anxiety prior to the stroke, this may be something that they may have been seeking help for already, but certainly a psychologist could look at addressing these sorts of things.

The other thing I guess I also talk about is being really prepared. If you have had a stroke, making sure that you do educate those around you. So family members, friends, if you’ve got work colleagues, providing some education and information about knowing the risks or signs of stroke, so that if you were to have another stroke that they are really on the ball and able to pick up the signs of stroke. It might be a FAST poster that outlines the signs of stroke.

Chris: So, FAST? Can you just ...

Simone: The F being the face. Is there any sort of asymmetry or drooping of the face on one side? The A stands for arms. Can you lift both of the arms equally or is there a weakness or a numbness on one side of the body? S is speech. Is the speech clear? Are you having any difficulties getting your words out? Are you having any difficulties understanding in conversation? The T is time. Obviously, we want you to call 000 straight away if you are having any signs of stroke or if you suspect someone with you is having any signs of stroke and that’s what the T stands for. The FAST posters go through those signs of stroke and it can be a really great reminder for everyone around you that that’s what to look out for further strokes.

Chris: Those are just I guess the most common ones though.

Simone: That’s exactly right.

Chris: As you’ve heard with the haemorrhages, it can be different things like a thunderclap headache and that kind of stuff.

Simone: That’s exactly right. Some of the less common I guess signs of stroke can be severe headache, often with vomiting, you may get dizziness as well or nausea, changes in vision, so sudden visual changes. You may also get poor balance or unexplained falls and difficulty swallowing. They can be some of the other less common signs of stroke, but for the most part, 80 to 90% of people will have at least one of those FAST signs.

The other thing I’ll also ... If someone is elderly and they’re afraid of their risk of stroke, they may be living alone, things like personal alarms, having a family member check in with them on a regular basis. It depends situation by situation. When people call StrokeLine, we can really come up with a plan tailored to them specifically to look at, number one, why did they have the stroke, are they aware of all of the risk factors, are they on top of all of the risk factors, are they getting regular reviews? Are they seeking support, whether that’s through a psychologist or through a counsellor, have they tried other practices like mindfulness to minimise the fear of having another stroke again, and really are they prepared, are they well-educated.

I think Bill touched on it, it was fantastic, but really filling your life with things that you enjoy, so having gratitude for the things that are going well in your life as well, because our brains are fit to that negative bias of fear, what happens if it happens again. It is a traumatic event. I talk a lot with callers on StrokeLine about practising acceptance and being kind to yourself in this journey and making sure you do get support to I guess talk through the traumatic event. It is a traumatic event. As we’ve heard some of the stories today, it certainly does take time to recover and heal from those events. And the ongoing journey of stroke as well, if there are physical or cognitive difficulties, it can be a long process.

Chris: It’s perfectly normal to be traumatised.

Simone: Absolutely. I think it’s really, really common and I think that’s one of the first things I do say. First of all, it’s really normal that you’re having this experience and you’re having these fears, and then we go and dig a little bit deeper.

Chris: Okay, fantastic. If you want to speak to Simone and find out more, or to one of the other health professionals on StrokeLine, you can give her a call. That is 1800 STROKE is the number. That’s 1800 787 653, but the 1800 STROKE is perhaps easier to remember if you’ve got a phone with letters on it. Thank you again, Simone, and to our other guests, Dr Bill Williams and Nikki Mennel.

Just a reminder that this April, you are able to go into a Priceline Pharmacy, or selected Westfield Shopping Centres, for Australia’s Biggest Blood Pressure Check. It only takes five to ten minutes and you could learn something that saves your life. It runs until 4th of May 2016. If you go to the Stroke Foundation website, which is strokefoundation.com.au, you can find a list of locations so you can know where you can go.

Next month, we have another big topic that’s experienced by many stroke survivors, which is fatigue. We’ll talk about knowing your limits and the emerging evidence-based techniques to manage it.

Announcer: At Allergan, we know every stroke is different and so is every recovery. After stroke, many people have muscle weakness and loss of movement, but you might also be experiencing tight muscles or stiffness in your arms, fingers or legs. It’s called spasticity. You might have muscle spasms or uncontrollable jerky movements in your arms or legs, changes in your posture or unusual limb positions, and it can cause pain.

It can be treated though. Physiotherapy or occupational therapy can help you adapt and improve your movement. There are other possibilities too, such as injections with botulinum toxin type A, electrical stimulation of the muscles, electromyograph or EMG biofeedback, and muscle-relaxing medication. What is important is to start your rehabilitation as soon as possible after a stroke and to discuss your goals and progress with your rehabilitation team at every stage. Allergan is proud to bring you this EnableMe podcast.

Announcer: 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 our website enableme.org.au.

It’s free to sign up and you can talk with thousands of other stroke survivors, carers and supporters. We also have 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 professional. If you would like to suggest a topic or provide feedback, contact us via the website enableme.org.au.

Announcer: The music in this podcast is “Signs” by stroke survivor Antonio Iannella and his band The Lion Tamers. It was recorded at Antonio’s studio which you can found out more about at http://www.studiofour99.org.au.

This EnableMe podcast series is produced by the National Stroke Foundation in Australia with the support of Allergan.