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Support groups (Finding purpose after stroke)

This podcast was created and is hosted by Letisha Living, a young survivor of stroke. This podcast series is part of Stroke Foundation’s Young Stroke Project.

Special episode - Finding purpose after stroke

7 February 2024 (Duration: 0:27:11)

Host: Letisha Living

Letisha Living is a young survivor of stroke and creator of this 3-part podcast special “Finding purpose after stroke.” In each episode, Letisha explores a different topic that has supported the mental wellbeing of people impacted by stroke. The topics she discusses are volunteering, support groups and creativity.

In this episode, Letisha talks to four survivors of stroke about their different experiences of joining or starting their own support groups. They also talk about the benefits of support groups and how this has positively impacted their mental wellbeing.

Support groups mentioned in this podcast:

Find more support groups on EnableMe

Connect with Letisha’s Stroke Survivors Empowerment Group

Transcript

Letisha: Welcome to the Stroke Empowerment Podcast, a welcoming space for survivors of stroke and their support network.

The aim of this podcast is to share our lived experiences that offer words of connection, hope and encouragement to those on the post stroke journey.

The content within is general in nature and does not replace medical advice. Discuss your situation and needs with your healthcare professionals.

This podcast was brought to you by Australia's Stroke Foundation and is funded by the Australian Department of Social Services. This podcast series is hosted by Letisha Living, a survivor of stroke and the lead author of Finding Yourself After Stroke.

This is the second episode of a series of three on finding purpose after Stroke.

This episode is Finding Purpose through Stroke Support Groups. If you haven't listened to the other episodes on finding purpose through volunteering and creativity, I highly recommend you go and have a listen.

Today, Letisha is joined by Amy Jennings, Brenda Booth, Gregg Oughton and Sarah.

Amy was left with aphasia after her stroke and used her experiences to help others by being a president of an aphasia support group and as a member on the Stroke Foundation's Consumer Council.

Brenda is a stroke survivor who enjoys life. In 2019, she received the Medal of the Order of Australia for her contributions to stroke policy, development and research.

In 2021, Brenda was recognised for her achievements by the World Stroke Organisation and World Stroke Academy Women in Stroke Initiative. Brenda is the co-president of WAGS, a stroke support group for working age stroke survivors.

Gregg is a husband, father and fitness enthusiast. Gregg felt isolated in his experience as a survivor and founded Kings Park Warriors, a support group for people living with acquired brain injury and their support network.

It is wonderful to have you all on today. Each of you all have different ways in which you have used your experiences to offer a space of support for other people who are impacted by stroke.

For everyone that's listening, we are also joined by Sarah Cullen. But you won't be hearing from her because I'm going to be speaking on behalf of Sarah today. Sarah was 14 and a half when she first suffered the first of two strokes. The second one occurred two years later on the same day. The first one was a ruptured AVM. And the second one was subsequent to ... and this is going to test my ability to read out ... a stereotactic radiotherapy. So she had no warning signs before the first one, and the second onset was gradual. After both of her strokes, she had to learn to walk and talk again.

We all have one thing in common and that’s that our strokes happened suddenly, unexpectedly, and at a young age. It can leave us all feeling isolated and disconnected. So I want to pass over to these wonderful, amazing humans who have done some incredible things in the stroke support world.

Let's start with Gregg. What inspired you to create a stroke support group?

Gregg: After my own stroke in December 2017, I participated in a course at the State Head Injury Unit in Perth. I usually can't say that. But that's great. A good start.

I contacted the members of the course, after the course finished, to catch up for a coffee to continue with the connection we had formed. I could say this needed to continue and here we are five and a half years later.

Letisha: In five and a half years, how has that changed for you personally in your role? So you initially just started connecting with a couple of people, and how did that grow?

Gregg: We started obviously in Kings Park in Perth, the big park, if you're familiar with Perth, right next to the city. And because it was a central location. That went on for probably a couple of years with only about four or 5 to 10 people.

And then the State Head Injury Unit actually started referring people to us and bringing them along with one of their staff members, which was amazing.

And as that went on, a lady from Rockingham in our western coastal suburbs contacted me to do, through the State Head Injury Unit, to start one in Rockingham.

So that was our second one and they have 8, 9, 10 members every week, turn up. A great bunch of people. And then it grew to the last few years we just tried to cover Perth.

So we got one in the northern suburbs of Mullaloo, one in Guildford on the eastern suburbs, and we started one in Mandurah and Fremantle the last couple of months.

I think that's it. But we also started a family and carers support group. That's been going really good. And our youth group for 18 to 30 year olds.

And they're all different dynamics. They went tenpin bowling a couple of weeks ago, which was pretty good. They loved it.

Letisha: It's amazing to see that connections, support and the continued growth for Kings Park Warriors. Amy, can you tell us a little bit about what inspired you to create a stroke support group and in particular for people with aphasia?

Amy: I rocked up one time going to Maitland Aphasia Group, that was a game changer for me. There were young people, there were old people, but it didn't matter, they got me.

There's no support in the ACT and because I lived in Yass, it was just a small community, like 6000 people. I had, sort of, in my mind, if I have to move, I want to support others.

And with Michelle Starkey, we started up a support group.

Letisha: That's amazing. And it's good that you can find all these different connections to help you along your way, which in turn helps other people as well.

Amy: Yeah, because I'm very driven. I know that I'm just going to wait my time in Yass and then I'll move through like from the mid-north coast area. I'll go back and I'll start up a support group. So yeah.

Letisha: That’s great. That's amazing. So Brenda, do you want to tell us a little bit about the WAGS and how you came about becoming a co-president of this group and who you support?

Brenda: I got involved with the early days of WAGS being formed. So what actually happened on the Central Coast here, there was a couple of stroke support groups on the coast.

Mainly the people attending were older people. And so the health professionals

realised that there was enough young stroke survivors on the coast that young stroke survivors needs are different, you know, potentially. And their support needs are different. And so they kind of got their heads together with a local neurologist.

And out of that came the formation of WAGs. WAGS is Working Age Group for Stroke.

My stroke was in 2001 and WAGS started in 2002. So there was initially nothing around for me. But then shortly thereafter, WAGS quickly came into being.

And even from the very beginning it was really quite well attended. The early meetings even had around 20 or more. We're very lucky in that we started seeking, because of our ability to seek funding, because of our affiliation to the Stroke Recovery Association.

We started seeking funding through the club's grant scheme and we were lucky, we got it.

So with that money we're able to ... a lot of people in the group have gone from working to the disability pension.

I'm still working part time, but I'm pretty much the only person in the group who’s still possibly working. And so a lot of our members are on the disability pension. And so we use that money to help subsidise activities that we do.

And the way our group worked for quite a long time, I was co-president with another stroke survivor, but COVID sort of made a lot of changes in our lives.

As it was want to do. And so I'm actually now the president of WAGS. So I don't have a co-president with me anymore.

Letisha: Yeah, and you say something that's really important there too. You know, through the pandemic and also people's different circumstances if they're still working or whatever, that at times maybe an in-person isn't the best.

However, I’m just going to shift to Sarah for a second because she had created an online space, so she's different from you guys talking about your in-person stroke support groups.

Sarah had created the Young Stroke Group in New South Wales and that was originally for a very young population of stroke survivors.

As we mentioned earlier, Sarah was 14 and a half when she had her first stroke. And as you were saying Brenda, the needs of older people versus younger people are so much different.

So it was great, Sarah, that you could create a space for people that you could identify with or also be that leader for other people coming after you and offer them an online space for connection.

As we were just chatting about during how things had changed during the pandemic, things also changed for Sarah's online space. Where they didn't just become a local support group, they became a national and international group as well.

And I certainly agree with sometimes feeling disconnected in person. And that's how I did meet Sarah initially, even though she's in New South Wales and I'm in Queensland, I needed a younger support group for me.

So there are lots of options there.

But let's go a little bit more into what you guys do in terms of the benefits of being in a stroke support group.

So Amy we’ll go back to you first. Can you chat about the benefits that you found from being in an aphasia specific support group?

Amy: It's more just the specific niche of the aphasia world. It's more just, most people who've had a stroke.

It's part of the course but that they're more concerned about aphasia getting the message across.

It's more just the connections between other people. That's just amazing.

Letisha: Yeah, I totally agree with that, the connection it really improves people's mental and emotional wellbeing.

Gregg, can you tell us about the benefits of the Kings Park Warriors and how that's really benefited the members that are in have been since the beginning and ones that are continuing to the new ones that are coming in?

Gregg: Firstly, we get each other like probably most support groups and you can see that sort of switch go on with people almost within a few minutes of realising that we get ya.

I don't ever get sick of that.

Our knowledge is relevant to our members and each other. We really listen and see the person, not the injury.

Letisha: Seeing the person as a whole, beyond the disability, or the deficits, just connecting with them for who they are is just so valuable.

Brenda, can you chat about the benefits of being a part of your support group and how that impacts your members?

Brenda: Yeah and I totally agree with Gregg about the fact that it's about we totally get each other. Our journeys may be different. Our strokes may be different. But we totally get it.

If I was having a bad day and I'm at work or in community, I kind of feel like I have to almost explain it. But when I'm in a stroke group, I don't have to explain it you know. So they just get it.

The benefits are having a community that you can connect with. And it doesn't matter that I've got alphabet soup coming out, I call it word spaghetti.

And so, you know, it doesn't matter if I've got word spaghetti going on. And that's even when I'm trying to chair a meeting. But one of the things that we did early on in WAGS, we, within WAGS, actually saw even our individual needs were different.

So we created, and this is the beauty of having that bit of funding money I talked about.

But you don’t have to have funding money to do this, of course.

But we created a mens stroke survivor group called ScallyWAGS, which I'm saying is quite aptly named. So that was our first group we created.

And then not that long afterwards we created a ladies stroke survivor group called WOW, Women of WAGS. We are WOW.

And the carers of WAGS had their own, but they did not want to be called the acronym of Carer of WAGS. Which is ... I won’t even say it here.

So we all have ... apart from the monthly meeting. We all have a once a month lunch together. So ScallyWAGS has a lunch. The WOW ladies stroke survivors have a lunch and the carers have a lunch.

So apart from connecting as a group and being social, we get to connect with each other in ... And so, you know, so the carers, if they feel like just need to let their hair down and have a bit of a debrief they can. And vice versa for the lady stroke survivors and mens stroke survivors.

I can't tell you how much WAGS has changed my life. The friendships that I've got there are lifelong solid friendships. Yeah.

Amy: And especially even after the COVID, it just stopped the whole nation. So when we had online groups like dips and nibbles, gardening, movie night etc. and that's a great opportunity to just have a chat really.

It’s more just ...

Brenda: talking.

Amy: Yeah, talking.

Brenda: Having a drink and talking.

Amy: Exactly.

Brenda: What Amy's talking about is the Stroke Recovery Association of New South Wales, in COVID, created a whole range of online support groups.

And even after COVID finished, the online support groups are still going. For people who can't get to a stroke support group. You know, they've been an absolute bonus.

Letisha: When you connect in these stroke support groups, you’re just seen, you're valued, you’re connected through that shared lived experience.

If you're having a fatigue day, you don't need to explain it. Other people get it.

If you’re lost for words, you don't need to explain it. People just get it.

I just want to add from Sarah too, she has said sometimes you can't find people in the real non-stroke world who can relate to your struggles. Being online allows people with communication deficits to participate as equals because they're not under the pump to communicate in real time.

And she also says that you don't feel like you're the only person on this earth that this happens to. Which we totally agree with you, Sarah.

So let's move back to Brenda. You’ve shared openly about how this has benefited you. Have you had any feedback from other members about how being a part of your stroke support groups has benefited them as well?

Brenda: Oh, yeah, absolutely. Often things that happen after a stroke is, you know, sort of, problems with mental health and depression and what have you.

It's one of those monsters that, you know, lurks in the background there. And we've over the years had a number of people who have actually said that for them, joining WAGS, but I think it would be for any stroke group. That joining WAGS was pretty much their lifesaver because without having that, and I'm not saying they didn't have family, but they may not have been able to connect openly and honestly with their family about what was going on for them.

They felt like they could be open and honest about what was going on in their life. And the other thing that developed in the group was people forming their own networks of friends.

We don't all live in each other's pocket, for goodness sake. But there are people who now, you know, they go out to lunch together, they get together for dinner, they go to shows in Sydney. So there's all these formed friendships and networks.

And when there's a member who's unwell or sick or in hospital, we kind of look out for each other. Connectedness is not the word I'm looking for, but it's the best word I can come up with.

Letisha: Yeah, and I love that word.

Brenda: I'm going to use that word.

Letisha: What you've just said, Brenda, you're definitely not alone in that. And I have heard that from so many people. The formed friendships, the connections, the mental health, especially, Greg, I know you've also had that feedback from some of the members in your group about how Kings Park Warriors has just been so beneficial to them.

Would you like to share any feedback that you've received from any of the members of your support group?

Greg: Similar to Brenda, there was one particular person who has continually tells me how we saved his life literally because his depression was so bad he didn't want to continue.

And our group has really kept him going. And the guy is such a, he's a driving force in the group. He's not very good at verbalising. He can write an amazing email like a novel, but he's just an amazing part.

And generally the members have said to us many times about how they've been able to find their place in the world and then be good at that, whatever it is.

If it's looking after the house, in the garden and discover gardening and growing veggies and those sort of things, you know, we encourage them to be good at whatever they can do.

Letisha: That's really given you purpose too Greg. While you can help other people find their purpose after stroke, it's really given you a sense of purpose too. I'm going to try not to cry, but, when you look at where you came from and to where you are now and the plans of where you're going in the future, that's just incredible that you could offer that space and give yourself that purpose as well.

Greg: I had to really learn to listen. I was always, not a bad listener, but I think the big part of the group growing and having the culture that it does is because I really listened and people realised that I really listened.

Because when they came back the next week or a few weeks later, I could relay to someone else that's going through the same thing that this person has gone through exactly what you're going through.

Sit next to them and, you know, and those bonds have been amazing. Still going today and catching up outside the groups.

Letisha: I think we will use Brenda's word of connectedness there again.

Greg: Yep.

Letisha: I'm just going to say from Sarah, she has written in our chat that what the massive benefits are in an online community, especially with people with communication challenges, is that they can type.

And Greg was just saying this too, they can type really, really well. Sometimes when you can't have the conversation that you want to have.

So Amy, what kind of feedback have you found in particular in the aphasia support groups?

Amy: They get it. The connectedness of it.

It's like a hug when you feel down. Giving a hug, but with no words.

That's all you need to do.

Letisha: I love that.

Why would you recommend support groups to other stroke survivors and family members?

Because we know that it's not just stroke survivors that also need support, but sometimes the carers and the support network, spouses etc. need support as well.

Amy: Yeah, I think, Sarah’s in the chat box, she was saying family are great and I love my family, but I need more than ... my stroke survivors because they get me.

You need to debrief to get all of those tense moments.

Greg: Support group members are most likely the kindness and empathetic people you will know, which is pretty much what you guys have been saying as well.

And because of that connectiveness, the bonds are amazing. You just can't explain it. Every time I come home from a group, I just speak to Julia, my wife, and go, just the words that come out of peoples mouths that you wouldn't probably have from a workmate or even a family member sometimes, because of the only other people that would really understand.

I mean, one of the reasons that I called it Kings Park Warriors was soldiers in battle, putting their lives on the line every day would get what we're talking about.

Because you're going into battle together to be the best person you can still be now.

And it's pretty amazing.

Letisha: You're right. It is pretty amazing. And Sarah says support groups are like finding your tribe.

You can talk to people who've been going through what you've been going through, and they might have hints and tips that could help, which I love. And that is just so true.

That is shared experiences that only somebody else who's going through it can get.

And Brenda, why would you recommend support groups to other survivors and their family members?

Brenda: Stroke doesn't discriminate. It affects everybody. I think when you first had your stroke, and often for a long time, you’re kind of grieving for what you've lost.

You know, either what you could do before and now may or may not be able to do anymore.

And so the benefit of connecting and me recommending a stroke group to somebody is they then can feel comfortable and not have to explain either their disability or ability to communicate or their physical disability.

And again going to what Greg said, we're, you know, a tribe together, we just we get it.

And I don't think there's any stronger support than people who get it.

I thank God for the fact that I've been part of a stroke group for all these years.

I would highly recommend anybody out there either get involved in one that's out there or if there's not one out there, think about doing what Greg did and create one.

What Amy did and create one.

Letisha: And I echo that. I'm sure we all agree that's exactly that.

If there isn't one near you, you know, start your own.

And you mentioned too Amy, while you love and have your family support, sometimes you just need that just that connection with the stroke survivors.

For me personally, I didn't have the friendships or family support. So for me it was reaching out into stroke support groups, which helped me.

I just felt very alone. For a long time I thought I was the only stroke survivor.

I couldn't relate to anyone, I had nobody stories to, I don't want to say the word compare, but I didn't have anyone to compare to.

And it wasn't until I did discover that there were these support groups out there and they get me.

They're going through the same thing. I'm not the only person.

Sarah says that the support groups contain people who will understand the adjustments that you might need, which is just incredible and valuable.

But before we wrap up, is there anything that anybody else would like to add about the benefits of joining or starting a stroke support group?

Amy: I think when, like, my group in Port Macquarie, it's more hints and tricks and hacks.

Greg: If anyone was thinking about starting one from scratch like I did, I probably wouldn't do it much different.

And because you're still recovering yourself from your stroke, you've got to just let it happen organically because otherwise if you try and do the way we're doing it now with the committee, working on the ... growing the groups and the organisation, you'll crash and burn every 5 minutes.

So you really got to just let it happen organically. Turn up.

I used to say that I was just the person that turned up every week. And that's what you need to do and make it happen organically. Let it happen.

Letisha: Yeah. Such valuable advice there.

Brenda: I wanted to say that the feedback that we have had from people is from being in the stroke group, they've got information that they've never got from any other source.

So, being like talking about footwear, or, you know ... but it does actually provide a really important avenue to provide information that people, when they're searching for, they may have tried to find it but hit brick walls.

And so in the stroke group, when we've had speakers or just even ordinary chit chat.

One of members came recently and showed the Yellow Sunflower Disability Lanyard. And other people went "Oh, I didn't know about that”.

So it provides an opportunity for that helpful information. But, you know, the other thing, I reckon at the end of the day, it's a place where, and I'm going to get emotional now.

It's a place where you can laugh or cry and you know that they've got your back.

Greg: Absolutely.

Letisha: Yeah, absolutely. Now I'm going to try not to cry because we're all so, even though we're talking about support groups, we're doing that here together.

Just by having this conversation, we're supporting each other and we get what each other is saying.

Sarah said starting a group allowed her to give some positive value.

So guys, thank you so much for coming on today.

Sarah, Greg, Amy and Brenda, it's been an absolute pleasure speaking with you all today.

Thank you for your time and sharing your experiences on stroke support groups and how this helped you to find purpose and connection after stroke.

So as you can see, there is so much benefit and community connection and we've used that word connectedness so many times, and I hope that you take that with you after listening to this.

There are a number of different stroke support groups out there. Some are more suited towards younger people. Some are for working age stroke survivors, some are aphasia specific, and there are spaces for family members and support crew as well.

If you're looking for a support group in your local area or a timezone, check out the Stroke Foundation's Enableme website, Australia's largest online community support group that provides support to survivors in the months and years after stroke.

We hope that you have found value in listening to this podcast and we recommend that you listen to the other two podcasts in this finding purpose after stroke series, which are on volunteering and finding purpose through creativity.