enableme Podcast episode 7 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. 	
		
	You can join the conversation at enableme.org.au.

This series is presented by Australia's national Stroke Foundation and sponsored by Allergan.
	
Chris:
[00:00:30]	Sex. We all think about it, but many of us find it difficult to discuss, which means it's a part of life that is often neglected in stroke rehabilitation.

But while it is a big part of relationships, it's also not the only thing. There are many ways that stroke can challenge the dynamics between partners. In this episode, we're going to break the silence on these important aspects of a fulfilling post stroke life.

We'll we speaking to clinical nurse consultant and researcher Sandra Lever about rehabilitation and sexuality after stroke, and speech pathologist Lisa Mangwiro from StrokeLine with practical advice on re-establishing and maintaining intimacy.
	
[00:01:00]	First though, we have stroke survivor Jayson Killick on the line. Jayson had his stroke at the age of 35 while he was driving his taxi. Now, his recovery since then has been helped in no small part by his close relationship with his wife, Maryanne. They are so close that they even work together, which is a remarkable achievement for any couple.
	
	Jayson, thank you for joining us.
	
Jayson:	Thank you Chris.
	
Chris:	Jayson, could you please tell us your stroke story?
	
Jayson:
[00:01:30]

[00:02:00]	I had my stroke in March 2010 at the age of 35. I was working as a taxi driver at the time, and I started having a little bit of a headache. I had some kind of strange sensation on the right hand side, and I just put it down to being tired. The headache progressed and then I just thought I'd better go home and have a rest. It might be just overwork, overworking myself.

I started having some blurred vision and that's the last thing I remembered. The next thing I remember is waking up in Warrnambool Hospital in the IC unit with Maryanne right next to me. I didn't know why it happened or ... Yeah, I just thought to myself, "Why am I here? What's happened?" When they told me what had happened it was a complete shock to the system and to both of us.
	
Chris:	Particularly with thinking about how stroke affects relationships, how did it affect things between you and Maryanne?
	
Jayson:

[00:02:30]	It did stretch us quite a fair bit. Because I was the main one working and paying the rent, paying the bills, it was stretching us. Because I got frustrated, because I was so used to helping the family, helping the children with their schooling and going through school and everything, to go to someone that had to be cared for.

Yeah, it stretched both of us, because I tried to deny the help from Maryanne and she would get angry, I would get angry, and then it stretched us and stretched us. But we got through it all and now we're working together and we're still together.
	
Chris:

[00:03:00]	Okay, sounds like you must have been able to get through a fair bit of communication, I guess, out of these difficulties that you had initially. What about anything regarding sexual issues? Did you have trouble talking about that at all?
	
Jayson:

[00:03:30]	I've got to admit that when I first got home, it was the last thing on my mind. All that I cared about was recovering, hopefully getting back to the way I was pre stroke. That's all I cared about, but as time went on, we started talking about the issue. As it was completely new territory for us, it was nothing that we was expecting to end up talking about, we sort of spoke about the issue and we even utilised information from the Stroke Foundation and from using Google as well, and trying to find out how it affects people and that sort of thing.

We spoke about it and we decided that we would just concentrate on my recovery before we go ahead with touching on that information.
	
Chris:
[00:04:00]	You said you looked for information online, were you able to find much stuff? Or did you have to talk to, say, your stroke team about it?
	
Jayson:

[00:04:30]	We did find some information online. Even on the Stroke Foundation website, we looked at that information, but we also utilised the stroke team. We asked the questions that it was hard for us to ... Because it's such a personal topic and the stroke team was complete strangers to us at first, it was like, "Oh, can we trust them with such personal information?"

Then as we got to know the stroke team, we were more open and bringing up about, will it affect me having an erection? Will it affect me from feeling any intimacy? Is it going to affect us in any way sexually? They gave us the information and we just read through it all. As time went on, we started talking about it and then it went on from there.
	
Chris:	As we've said, you have remained very close and it's now six years I think, is that correct? Since your stroke?
	
Jayson:	Six years, yeah.
	
[00:05:00]
Chris:	
Yeah. Then in terms on your relationship, are things very different to how they were before the stroke?
	
Jayson:

[00:05:30]	If we're looking at it from pre-stroke to post-stroke, things were very different in the early days. It took probably a good 12 months, 12 to 18 months, before we decided to try and have sex or even...

We just took it one step at a time. We just went through touching each other, kissing, cuddling, touching, then one thing just led to another until we felt ready to try to see what would happen and see if it's going to affect our relationship. But no, it hasn't affected our relationship in any way or form.
	
Chris:	I guess, having been through so much together, that must be something, that shared experience will itself bring you closer to a certain extent?
	
Jayson:

[00:06:00]	Yeah. I think having a stroke has brought us a lot closer together than what it was pre-stroke. I've gotten to appreciate Maryanne a lot more and Maryanne's appreciated me a lot more, through the care that she gave me and I've given back over time when she hasn't been so good. It really brought us a lot closer.
	
Chris:	Fantastic. Based on your experience, I guess, if you have any advice that you would want to give other stroke survivors or their partners?
	
Jayson:

[00:06:30]

[00:07:00]	The only advice I can give them is utilise the Stroke Foundation website, especially enableme. enableme has thousands of different types of information they can look for, especially regarding sex and relationships. Go to enableme, you'll find information from other stroke survivors like myself, that talk about their experience.

Make sure you talk to your stroke team. Ask them questions if you're not sure. They're there to help you. It might be hard at first to trust them, but trust them, and they will give you all the information you need.

Talk to each other. Open communication is the most important thing. Talk, talk, talk.

Just when things feel right, that's when you start ... Don't try and jump head first into having sex, just maybe a cuddle, a kiss and just let one thing lead to another until you feel comfortable.
	
Chris:	That's fantastic. Well, thank you very much for speaking to us and sharing your story with us Jayson.
	
Jayson:	Thank you very much for your time Chris.
	
Chris:	Cheers.
	
Announcer:	enableme is Australia's online stroke community.
	
	It's a place where stroke survivors, their carers and supporters, can find information, share their experiences and inspire each other with their recovery.
	
 [00:07:30]	Signing up is free and takes just a minute. It allows you to post questions and comments, set and track your own recovery goals, and connect with people who understand exactly what you're going through.
	
	It's filled with evidence based resources, videos and stories. It's everything you need to grow stronger after stroke.
	
	Sign up now in seconds at enableme.org.au.
	
Chris:

[00:08:00]	Our next guest is Sandra Lever. Sandra is a clinical nurse consultant at the Graythwaite Rehabilitation Centre at Ryde Hospital in Sydney. She lectures on sex and acquired disability, and she has recently published research on the impact of stroke on female sexuality.
	
	Thank you for joining us Sandra.
	
Sandra:	Thank you very much Chris, it's lovely to be here.
	
Chris:	Now, from your experience, what are the biggest issues regarding sexuality after stroke?
	
Sandra:

[00:08:30]	That's a complex question to answer Chris. There are many things that may impact on a stroke survivor's sexuality. Each of these are big for the person affected. Generally speaking, the big issues are related to the bodily changes that occur following a stroke and the impact that these have on the stroke survivor's sense of self, and how they can participate in intimate activities.

[00:09:00]	Difficulty walking for example, may affect the type of shoes that a stroke survivor can wear, which may affect how they can present themselves to their partners or potential partners, as well as their feelings of attractiveness.

Another example of this is having a hemiplegic arm, which may affect the way stroke survivors can participate in intimate activities. For example, hugging. When you hug with a hemiplegic arm, it is different. For a male stroke survivor who would like to be in the missionary position for sexual activity—that is when they're on top of their partner—this can be difficult, because he feels he does not have adequate strength to take enough weight through his hemiplegic arm to maintain that position during sexual activity. Using a different position, such as having their partner on top, may address that issue.

[00:09:30]	Low mood is also a common issue, as is fatigue. That can impact on the person's libido. A willingness to be intimate in the relationship and planning intimate activities can be very important to managing this. Then there's the fear of rejection, which is also very real following a stroke. It's very important to talk to someone about these things.
	
Chris:	One of the main questions that we get asked, the biggest concern it seems to be regarding this topic, is does having sex carry an increased risk of having another stroke?
	
Sandra:

[00:10:00]	Yes Chris, I was going to say that this is a big concern for stroke survivors. Having sex itself increases the person's heart rate and their blood pressure, but this is not a problem if the stroke survivor is medically stable. Participating in any activity is part of secondary stroke prevention and sex can be one way of being active. In a sense, we actually should be encouraging people to be sexually active as part of secondary stroke prevention.

[00:10:30]	Unfortunately we cannot say that you will definitely not have another stroke during sex, but we also cannot guarantee that you will not have another stroke doing anything else either. The risk of another stroke can be reduced however, by knowing your stroke risk factors and controlling these through factors such as regular exercise and maintaining a healthy diet. It is also good to know though, that there isn't any evidence out there to support that sex can cause another stroke.
	
Chris:	Okay, that does sound like good news. You said that it is itself a useful activity. What about, I suppose, sexuality being a part of normal life. Is that an important part of recovery do you think?
	
Sandra:
[00:11:00]

[00:11:30]	It is. Look, it's a very important part. For some stroke survivors, it can be very important. For others it's not as important. Nevertheless, sexuality is broader than the act of sex itself and it's an integral part of being human.

For some stroke survivors, addressing sexuality issues in the early part of their recovery, may be very important for them, and they may not be able to focus on other areas of recovery until this has been addressed. It is very individualised as to when sexuality should be raised and when it should be addressed, but for all people it is a part of their recovery and it is important to ask questions if there are concerns.
	
Chris:	Now, that's a very good point of it being so individual, because thinking about relationships in general, there is a lot more to it than just sex as well. What other ways do you think that relationships are impacted by stroke?
	
Sandra:
[00:12:00]

[00:12:30]	Other ways that stroke can impact on a relationship can be because there's things like role changes and because of the role changes, that can be a stressor for both the stroke survivor and their partner. Because of that stressor, that can impact on their relationship.

Aphasia following a stroke, that can cause loneliness within the relationship. Also some of the medications that stroke survivors are on, so some of their blood pressure medications or their mood medications, that can also affect intimate relationships. It's important to talk to your doctor if you do notice that any of these changes have occurred.
	
	It does sound like it's all a bit of doom and gloom when you're talking about all these changes in relation to sexuality and intimate relationships, but many stroke survivors do adjust to the changes. They do this through open communication, problem solving and focusing on the opportunities. There are many stroke survivors who report that the relationship has strengthened following the stroke, and that they value their partners more.	
[00:13:00]
Chris:	
What about then, I suppose I'm thinking more early on in the stages of recovery, if they're in a hospital or a rehab centre. Is there any way that they can ... those places can accommodate intimacy, or what can people do about getting intimacy in those sort of situations?
	
Sandra:
[00:13:30]

[00:14:00]	Yeah. Being in a hospital or a rehab centre is quite difficult for getting privacy, especially when you're sharing rooms. One of the main things that can be done within a relationship is to try and ... In those early days, is to try and hold on to that connection that is there in the relationship. If you are in an intimate relationship at the time of the stroke, there's things that can be done to prevent that distancing that can happen in the relationship, because there is so much going on within that early period in hospitalisation. They can get this distancing within the relationship, and that can be difficult to get a reconnection later on in the journey.

[00:14:30]	Some of the things that can be done are doing things like cuddling and kissing and holding hands, if that was some of the things that you did in your relationship before you had the stroke. Privacy to do those things can be difficult, so if that is an issue, don't hesitate to ask for some privacy if that is a concern. There are things that can be done and that may be if you're in single rooms, like closing the door and asking people to knock. It may be just if the curtains are closed and you're wanting to have some private time where you're just cuddling and holding hands and that, but people are walking in and out, is just asking whether they can respect ... Have some respect for your privacy during those times when the curtains are closed and not just to walk straight in. They are some things that can be done.
	
[00:15:00]	Open communication is vital in all relationships, so talking to each other about your feelings in those early days and throughout the whole journey, is very, very important. Doing that in an open, positive manner is really important. If you do have questions while you're in hospital or in the rehab centre, it's important to ask those questions, so don't hesitate or don't be afraid to ask a healthcare professional if you do have questions.	
[00:15:30]
Chris:	
Okay. Thinking about questions, I guess one particular practical issue that might come to mind, is what if someone's dealing with an issue like incontinence? I can imagine that would be something that would make it, seem to be a bit of an obstacle to any intimacy like that. What can you recommend?
	
Sandra:

[00:16:00]	Yeah. Incontinence can affect the stroke survivor's feelings about themselves in a negative way, but there are many options for managing urinary and bowel incontinence. It's important to explore all the options that are available and to find the one that best suits you. Again, it's important to talk to a healthcare professional about the options that are available.

If there's a catheter in situ for example, females can wear lingerie which may help them to feel a little bit more sexy. There are also binders that can be worn around the abdomen to hide the catheter if there's a suprapubic catheter in situ. That's where the catheter goes in through the abdomen to the bladder, instead of into the urethra between the person's legs.

[00:16:30]

[00:17:00]	The person with a catheter may also be able to learn how to remove the catheter for sexual activity and then reinsert it, or they may be able to learn how to do what we call in out catheters on a regular basis, so they don't even have to have a catheter attached to them.

If you don't have a catheter, going to the toilet before sexual activity, especially for females, can prevent an episode of incontinence occurring during intimate activities.

It's also important to talk to your partner about how you both feel about this, if an episode of incontinence does happen. What you would both do if that should happen, so that can assist with allaying anxieties if you should have an episode of incontinence during intimate activities. Instead of the episode happening and then having this reaction to it, you've got some strategies up your sleeve to be able to manage the situation if it should occur.
	
[00:17:30]	Then bowel incontinence is a concern. There are things like rectal plugs out there, so it's a little plug that you can put in to stop any bowel accidents happening during intimate activities. If you're on a good bowel regime, this should prevent this from occurring.

There are a lot of things that can be done for incontinence that can help, things being a little bit more positive and help you feeling a bit more positive about yourself in those situations.
	
Chris:
[00:18:00]	Now, I guess we've been talking a lot here about sexuality and its effect on relationships, but of course, stroke can affect single people as well. Is sexuality an important issue for people regardless of their relationship status, and are there things that they need to consider?
	
Sandra:

[00:18:30]	Definitely so, definitely so. Sexuality is important for all of us, as I said earlier. It's an integral part of being human, so it is very, very important for all of us, whether you're single or not. As I said, these changes don't only affect people that are in a relationship, but they also affect people who are not in a relationship as well. The changes caused by the stroke itself affects the person's sense of self and how they can present themself and how they evaluate themself and all of these things are very, very important, whether a person is in a relationship or not.	
[00:19:00]
Chris:	
What kind of advice do you have for people then, regarding ... Other advice you have regarding sexuality and relationships, for people who are going through rehab in this way?
	
Sandra:

[00:19:30]	It's important to seek information and help when needed, so I'd certainly advise don't be afraid to ask questions. Sometimes there may be a negative response to the questions, because health professionals themselves or other people that you ask those questions of, they may not be comfortable about talking about sexuality. Don't let this stop you. Sexuality is important and it shouldn't become a loss associated with stroke.

[00:20:00]

[00:20:30]	The other advice that I think is really important is to also be willing and open to different ways of being intimate and giving and receiving pleasure, and trying not to focus just on the act of itself. That may be about changing your expectations around what should happen, and being open to the other options that are available.

It may be things like being intimate with each other. It might be just lying beside each other, enjoying the pleasure of feeling each other beside yourself. That may with your clothes on or it may be just lying there naked instead of going all the way and having sex. Just having skin-on-skin contact can be a very pleasurable feeling, so there's lots of other ways to be intimate that is outside just having sex itself.
	
	It's also really important to remember that communication in a positive way, is important and very, very important whether you've had a stroke or not, in all intimate relationships. I think that advice is really important.
	
Chris:

[00:21:00]	Fantastic. Okay, look, I think we'll let you go. We can hear your buzzer in the hospital going off there in the background Sandra, so I think we probably better let you go and deal with some emergencies that are no doubt coming up. Thank you very much for speaking to us.
	
Sandra:	Thank you very much Chris for having me here today.
	
Chris:	That was clinical nurse consultant Sandra Lever.
	
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're progressing and celebrate your successes.
	
[00:21:30]	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're 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:	Finally today, we have Lisa Mangwiro, a speech pathologist and one of the voices that you can hear on the Stroke Foundation's StrokeLine. Thank you for joining us Lisa.
	
Lisa:	Thank you Chris.
	
[00:22:00]
Chris:	
Now, we've discussed how sex after stroke isn't talked about as much as it should be. Do you get many questions about it on StrokeLine?
	
Lisa:

[00:22:30]	We do receive a few calls on StrokeLine about sex, but I still think it's an area that stroke survivors and partners don't feel very comfortable talking about. Perhaps they're referring to our fact sheet on sex and relationships after stroke as an additional resource. Another thing to note is that sex is sometimes on the bottom of people's priority list when they do return home. They focus on other aspects of their stroke recovery. Whilst for others, sex is one of the first things they return to, so it does vary from couple to couple.
	
	The number one question we do get asked on StrokeLine is, "Will I have another stroke during sex?" Like Sandra mentioned, studies haven't shown that sex can trigger a stroke, however if you are concerned or have other unstable medical conditions, you can talk to your doctor or your health professionals to confirm this and they can provide you with advice specific to your situation.
	
Chris:
[00:23:00]	Okay. Of course it's not just stroke survivors, but also you get carers calling StrokeLine. Are there any particular concerns that they may have about sex or relationships in general?
	
Lisa:

[00:23:30]	Definitely. We sometimes do receive calls from carers who have noticed a change in their partner's behaviour after a stroke, which does influence their sex life and intimacy. This can happen if the stroke survivor's thinking and behaviour has been affected by the stroke, which can be quite distressing for the partner as well. In these cases, we would suggest trying to have open discussion with your partner about it directly, but it's also important to note that every couple will have a different level at which they feel comfortable discussing sex. If you aren't used to communicating about your sex life, this can be a challenge, so we would suggest being as open and honest as you can about your needs and concerns as well, as well as listening to your partner's perspective too. Sometimes the bedroom isn't the best place to have that discussion.

You may also need to tackle the issues step-by-step, rather than trying to solve it all at once, so they're just some things to consider as well.
	
Chris:

[00:24:00]	Okay, now this is ... That does sound like good recommendations for any relationship really. Communication is key as they say. Speaking of communication, given that you're a speech pathologist, we want to get benefit of your expertise. Are there any issues that are particular to people with aphasia or other communication difficulties?
	
Lisa:

[00:24:30]	Most certainly. For those with aphasia or other communication difficulties, expressing desire and intimacy can be very challenging. Some tips that I would suggest would be finding non-verbal activities that you and your partner would find enjoyable. So this might be listening to music, painting or even dancing if you like. Having these shared moments can create the closeness that sets the scene for sexual intimacy.

You can also use non-verbal cues such as smiling, touching, kissing and gestures as well, to express your desire to be close with your partner. Lastly, you can always speak to your speech pathologist if you'd like specific strategies to help you communicate with your partner better.
	
Chris:	I guess just summing up all of this, what would be your top tips for stroke survivors or their carers, in re-establishing or maintaining intimacy in their relationships?
	
[00:25:00]
Lisa:	
My top tip would be firstly, don't be afraid to ask. Sex and intimacy is a normal part of life and if you have a question, talk to your health professionals, talk to your GP and ask the question.

Like Jayson mentioned, the more discussion we have about it, the more comfortable stroke survivors, partners and health professionals will be. Picking someone in your therapy team you feel comfortable with is also a good starting point. It's sometimes also about giving your health professional permission to openly discuss the topic, because we're human as well and we might need your help too.
	
[00:25:30]	Another tip or point to note would be that having a stroke can result in changes to your physical abilities. It can also result in spasticity and even pain, and so you might need to find new positions and ways of doing things to bring you and your partner pleasure. Have a chat to your health professional to work out what's best for you.
	
Chris:	Okay, that's like an occupational therapist can help with those kind of things?
	
Lisa:

[00:26:00]	Sure, they can. We also know that fatigue is common after stroke, and if this is the case for you, try to have sex when you're well rested. Taking a more passive role in the beginning might also be needed as you adjust to the fatigue too.
	
	Sandra also mentioned that low mood after stroke can impact intimacy. This might mean managing your mood first by speaking with your GP or a psychologist.
	
Chris:	Okay, well thank you very much Lisa, that's great advice. Now, if you want to find out more from Lisa or our other health professionals, you can call StrokeLine on 1800 787 653, that's 1800 S-T-R-O-K-E, which might be easier to remember.
	
[00:26:30]	That is all we have time for today. Now, if you do like what you've heard, please help us out by giving us a good rating and review on iTunes or whatever other podcast app you're using.
	
	Thank you once again to our guests, Jayson Killick, Sandra Lever and Lisa Mangwiro.
	
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.

[00:27:00]	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.

[00:27:30]
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 find out more about at www.studiofour99.org.au. 
	
Announcer 2:	This enableme podcast series in produced by the national Stroke Foundation in Australia with the support of Allergan.
	
[00:28:00]
Announcer 5:	
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.

[00:28:30]	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.