Surviving, treating, fighting stroke

WEBVTT
00:00:06.480 --> 00:00:15.599
Hello and welcome to a special edition of a Grey Matter podcast, Living Your Best Life After Stroke, to commemorate World Stroke Day.
00:00:15.599 --> 00:00:17.679
I'm your host, Rebecca Archer.
00:00:17.679 --> 00:00:30.079
Today we're bringing together three remarkable women whose experiences span every part of the stroke journey, from lived experience to frontline rehabilitation and to cutting-edge neuroscience.
00:00:30.079 --> 00:00:52.000
But that moment sparked not only a long and emotional road to recovery, it transformed her into a passionate advocate for stroke awareness and survivor-led leadership.
00:00:52.000 --> 00:01:13.280
Next, we'll be joined by Tanil Rowland, a dedicated stroke rehabilitation specialist who works closely with younger survivors, navigating the complex balance of recovery, family, and career.
00:01:13.280 --> 00:01:26.159
Tanil will share insights into how clinicians tailor therapy for younger patients, the role of technology in recovery, and the strategies that help people stay motivated and to regain independence.
00:01:26.159 --> 00:01:28.480
And finally, we'll be hearing from Dr.
00:01:28.480 --> 00:01:36.400
Matilda Balby, a neuroscientist whose groundbreaking research is uncovering how the brain repairs itself after stroke.
00:01:36.400 --> 00:01:50.400
Her work focuses on the powerful role of inhibitory neurons and gamma frequency stimulation, and how understanding these mechanisms could one day lead to new treatments that boost recovery and protect brain cells.
00:01:50.400 --> 00:02:08.719
Together, Letitia, Tanil, and Matilda paint a very personal picture of what it means to survive, support, and study stroke, showing us that recovery is not just a medical process, but a deeply human one, driven by courage, compassion, and discovery.
00:02:08.719 --> 00:02:10.560
Let's begin with Letitia.
00:02:10.560 --> 00:02:11.840
Welcome to the podcast.
00:02:11.840 --> 00:02:13.199
Thanks for having me.
00:02:13.199 --> 00:02:20.479
First off, Letitia, can you take us back to the moment when you first realized that something was seriously wrong?
00:02:20.479 --> 00:02:21.919
What was going through your mind?
00:02:22.400 --> 00:02:28.240
Well, it was a typical Thursday at work, except for on this particular day, I had a headache.
00:02:28.240 --> 00:02:32.639
So I left early, picked up my kids from daycare and school, and then went home.
00:02:32.639 --> 00:02:41.360
But then later that evening, my headache was so bad, and I just found that I wasn't really coping with my usual evening tasks of being a mum.
00:02:41.360 --> 00:02:43.599
And so I called the home doctor's service out.
00:02:43.599 --> 00:02:45.120
So they came and visited me.
00:02:45.120 --> 00:02:49.759
They thought that I was having a migraine and they gave me an injection of pain relief.
00:02:49.759 --> 00:02:57.280
So I went and laid down next to my son, who was four years old at the time, fell asleep until I was woken at about 1 a.m.
00:02:57.280 --> 00:03:00.639
by this headache, which had really returned by a vengeance.
00:03:00.639 --> 00:03:05.759
So when I opened my eyes, I had pins and needles all down the right side of my body.
00:03:05.759 --> 00:03:08.319
And I thought that there was something wrong with my vision.
00:03:08.319 --> 00:03:10.000
So I just need to say too.
00:03:10.000 --> 00:03:15.439
So I I was a migraine sufferer and I would get auras with my migraines.
00:03:15.439 --> 00:03:22.319
But this, because it was dark, I wasn't sure if it was a typical migraine aura or or what it was.
00:03:22.319 --> 00:03:26.719
So I thought, you know what, I'll just stay here and it'll pass like the other ones do.
00:03:27.360 --> 00:03:35.840
Given your age and experience, did you have any kind of suspicion or notion whatsoever that it could be a stroke?
00:03:36.319 --> 00:03:37.360
No, not at all.
00:03:37.360 --> 00:03:39.840
I thought it was a migraine.
00:03:39.840 --> 00:03:44.159
And then I thought, well, if this is a migraine, what were all those other ones that I was having?
00:03:44.159 --> 00:03:46.000
Because this one, this is the real one.
00:03:46.000 --> 00:03:53.199
And also I should probably mention, too, that I worked in aged care for 17 years and I had seen people have strokes in front of me.
00:03:53.199 --> 00:03:57.680
But I wasn't presenting with those typical fast signs.
00:03:57.680 --> 00:04:01.439
And not for one second did I even think that young people could have strokes.
00:04:01.439 --> 00:04:02.960
What happened next?
00:04:02.960 --> 00:04:05.520
Ah so what happened next?
00:04:05.520 --> 00:04:14.400
I I thought I was having a migraine, but when the sun rose and it hadn't passed, I got somebody to take me to the medical centre.
00:04:14.400 --> 00:04:17.120
There, they again thought that I was having a migraine.
00:04:17.120 --> 00:04:20.240
So I was given some more pain relief and told to rest.
00:04:20.240 --> 00:04:23.920
So Monday morning, nothing had changed.
00:04:23.920 --> 00:04:29.839
This is now day four, pins and needles, vomiting, sick, off balance.
00:04:29.839 --> 00:04:33.680
And again, at no time did I ever think I was having a stroke.
00:04:33.680 --> 00:04:40.800
So I went to another medical center for another opinion, and third doctor, fourth day says, you've got to go straight to emergency.
00:04:40.800 --> 00:04:43.279
So at this point I'm thinking, okay, what's wrong?
00:04:43.279 --> 00:04:45.199
Have I got a brain tumor?
00:04:45.199 --> 00:04:46.399
Um I dying?
00:04:46.399 --> 00:04:47.519
Is there something going on?
00:04:47.519 --> 00:04:50.800
But again, not even suspecting that it was a stroke.
00:04:51.600 --> 00:04:54.879
When you went into emergency, what happened then?
00:04:55.360 --> 00:04:58.879
I went into emergency, they took me straight in.
00:04:58.879 --> 00:05:02.240
Uh so they probably thought there was something wrong by the time I got there.
00:05:02.240 --> 00:05:11.920
I went straight in, I had a CT scan, and then that they came and spoke to me and said, We think you've had a stroke, but we need to transfer you to another hospital with a stroke board.
00:05:12.240 --> 00:05:15.199
And once you went to that hospital, what did they say?
00:05:15.199 --> 00:05:15.920
What did they think?
00:05:16.399 --> 00:05:20.000
So it was then the next day the neurologist came and spoke to me.
00:05:20.000 --> 00:05:22.560
So I had an MRI at the next hospital.
00:05:22.560 --> 00:05:25.519
The neurologist came and spoke to me and did confirm.
00:05:25.519 --> 00:05:27.519
So it was uh quite a big stroke.
00:05:27.519 --> 00:05:40.079
Multiple blood clots had escaped through a hole in my heart, which is known as a PFO, and went to my left occipital lobe, my brainstem, and bilaterally right side cerebellum.
00:05:40.480 --> 00:05:41.680
What was your reaction?
00:05:41.680 --> 00:05:43.040
How did you respond?
00:05:43.600 --> 00:05:47.680
It was just so shocking, actually, because I was like, well, it can't be a stroke.
00:05:47.680 --> 00:05:48.639
It's got to be something else.
00:05:48.639 --> 00:05:49.439
Like I'm young.
00:05:49.439 --> 00:05:51.199
This doesn't happen.
00:05:51.199 --> 00:06:00.959
And even though they told me, you know, it happened because, you know, there's a PFO and you know, the blood can clot and escape through that, it still took a lot for that to sink in.
00:06:01.439 --> 00:06:03.600
And emotionally, what was going on?
00:06:03.600 --> 00:06:10.959
So you hear that diagnosis, you're a young mother, you're a professional, suddenly life is really turned upside down.
00:06:10.959 --> 00:06:12.240
How did that hit you?
00:06:12.560 --> 00:06:14.480
Yeah, so the shock was real.
00:06:14.480 --> 00:06:17.120
I started thinking, am I going to die?
00:06:17.120 --> 00:06:18.959
Um, am I going to have another stroke?
00:06:18.959 --> 00:06:20.959
Am I going to see my kids again?
00:06:20.959 --> 00:06:22.560
What's going to happen to me now?
00:06:22.560 --> 00:06:24.879
How am I going to look after my kids?
00:06:24.879 --> 00:06:26.959
So it was really, really lonely.
00:06:26.959 --> 00:06:36.079
Like it took me a long time to accept that I've had a stroke, but mostly I felt a lot of shame around it because I was so independent.
00:06:36.079 --> 00:06:42.720
And then all of a sudden I've got all of these, you know, physical, emotional, and mental and social challenges.
00:06:42.720 --> 00:06:43.120
Yeah.
00:06:43.120 --> 00:06:45.600
So it was a pretty hard time emotionally for a little while.
00:06:46.000 --> 00:06:46.800
I can imagine.
00:06:46.800 --> 00:06:49.920
Did you have enough support around you at the time?
00:06:49.920 --> 00:06:52.319
How did how did your friends and family react?
00:06:52.319 --> 00:06:54.879
I imagine there would have been a fair bit of disbelief.
00:06:55.360 --> 00:06:56.000
There was.
00:06:56.000 --> 00:06:58.480
I didn't really have a support system.
00:06:58.480 --> 00:07:06.160
So it was, I think it was also hard for those around me to also accept it because we didn't know anyone that was young and had a stroke.
00:07:06.160 --> 00:07:13.199
So there was no one to relate to, or, you know, I don't like to use the word compare, but there was no one to talk to about it.
00:07:13.199 --> 00:07:15.759
And I don't think they really understood it either.
00:07:16.240 --> 00:07:23.680
Let's move forward to how you began to rebuild your identity after your stroke.
00:07:23.680 --> 00:07:25.519
How did you get back to your sense of self? And how long did that take?
00:07:25.600 --> 00:07:28.639
It took me a little while.
00:07:28.639 --> 00:07:39.519
There was an identity disruption because I wasn't able to return to my place of work, and my career was something that was really important to me and something that I identified strongly with.
00:07:39.519 --> 00:07:43.360
So losing my job meant also losing money.
00:07:43.360 --> 00:07:50.800
And then being a parent and having no income just added another layer of challenges to parenting post-stroke.
00:07:50.800 --> 00:07:54.319
I didn't mention that I was pregnant at the time of my stroke, too.
00:07:54.319 --> 00:07:59.759
So while I was adjusting to my post-stroke life, I was also growing and raising a new baby.
00:07:59.759 --> 00:08:05.120
So the identity thing also comes around that who am I as a parent now?
00:08:05.120 --> 00:08:10.800
And really grieving the loss of who I was and what the picture of parenting looked like for me.
00:08:10.800 --> 00:08:12.720
So it did take me a couple of years.
00:08:12.720 --> 00:08:19.279
I was kind of in this depressive, negative feedback thought bubble, which just isn't healthy.
00:08:19.279 --> 00:08:21.519
And I realized, you know, I don't want to be here.
00:08:21.519 --> 00:08:22.720
This isn't who I am.
00:08:22.720 --> 00:08:25.519
I need to start experiencing joy again.
00:08:25.519 --> 00:08:28.639
So the big thing for me was working on my mindset.
00:08:28.639 --> 00:08:42.320
Instead of focusing on what I lost and what I didn't have, I learned to lean into gratitude and think about what I can do, what I do have, and you know, just be really appreciative of those things.
00:08:42.799 --> 00:08:50.399
What sort of impact did becoming a parent again when you had that child that you were pregnant with after the stroke, during recovery?
00:08:50.399 --> 00:08:53.440
How did that sort of impact on your journey to healing?
00:08:53.840 --> 00:08:56.799
It was the biggest influencer for me.
00:08:56.799 --> 00:08:58.799
Kids don't stop for stroke.
00:08:58.799 --> 00:09:00.960
So I had to keep moving forward.
00:09:00.960 --> 00:09:06.320
And as a parent, I am very mindful that our children look at everything that we do.
00:09:06.320 --> 00:09:13.519
They absorb our thoughts, you know, we help create their personality, their mindsets, and the way in which they perceive the world.
00:09:13.519 --> 00:09:20.720
So I wanted my kids to know that you can bounce back and still achieve your goals, be the person you want to be, and you can still have an amazing life.
00:09:20.720 --> 00:09:32.559
And I really do thank my kids and my role as their parent because they are what gave me the internal drive to keep moving forward and just be a better person and be the best person that I can be each day.
00:09:32.879 --> 00:09:36.639
I want to talk about the sort of community experience that you had.
00:09:36.639 --> 00:09:38.720
You mentioned that you didn't have a support network.
00:09:38.720 --> 00:09:45.120
There was no one really to talk to who had gone through something that you had gone through at your age in particular.
00:09:45.120 --> 00:09:56.480
Did you find that there were sort of any prejudices or were there sort of positive things that that happened within the community for you at that time that surprised you perhaps?
00:09:56.799 --> 00:10:02.159
I do notice some prejudices, but I think as we're getting along with time, there's more awareness.
00:10:02.159 --> 00:10:08.399
And so there has been a bit of a shift in that from you had a stroke to, oh, uh, what caused that?
00:10:08.399 --> 00:10:10.399
Which I I think is is great.
00:10:10.399 --> 00:10:20.559
But the biggest impact for me was the stroke survivor community itself, because before my stroke and for the first few years afterwards, I didn't know anybody who had had a stroke at a young age.
00:10:20.559 --> 00:10:35.440
So I found the lived experience support groups where I could talk about fatigue, identity loss, get tips and life hacks and ideas from other people who are going through a same or a similar thing really made a huge difference for me.
00:10:35.840 --> 00:10:37.919
And how did you find that community?
00:10:38.320 --> 00:10:48.080
These ones were on Facebook and then the Stroke Foundation have an enable me website where there's plenty of support groups there for in person if you want to catch up in person.
00:10:48.480 --> 00:10:49.279
And were they...
00:10:49.519 --> 00:10:55.840
were you able to find younger people specifically through that, or was it something that that they directed you to?
00:10:55.840 --> 00:10:59.360
Like, well, okay, this is a support group specifically for younger people?
00:10:59.759 --> 00:11:02.879
I was surprised actually at how many young people there are.
00:11:02.879 --> 00:11:06.879
And pretty much everybody that I connect with is in that working age group.
00:11:07.200 --> 00:11:13.279
Were these people sort of scattered throughout the country, or was it something that where you could go and speak to someone and have a cup of tea?
00:11:13.679 --> 00:11:14.080
Both.
00:11:14.080 --> 00:11:19.919
So there is local support groups where you can go and catch up and have a kapo and a chat.
00:11:19.919 --> 00:11:29.759
Or we can host online, you know, I do an online community call where we just catch up and sometimes we talk about different topics, or we just have an open discussion.
00:11:29.759 --> 00:11:31.600
And it's in international as well.
00:11:32.000 --> 00:11:37.600
What do you know now that you perhaps wish you had have known before your stroke?
00:11:38.080 --> 00:11:40.720
I wish I had known that young people have strokes too.
00:11:40.720 --> 00:11:47.200
But what I do know now is that anyone from babies in utero right through to the elderly can have a stroke.
00:11:47.200 --> 00:11:50.000
And that happens for all different reasons.
00:11:50.000 --> 00:11:57.120
But what I wish I had have known that really makes sense to me now is that it's the little things in life that really matter the most.
00:11:57.120 --> 00:12:02.559
So be appreciative of every moment because you just don't know what's around the corner.
00:12:02.559 --> 00:12:10.720
But if I could give some advice to people, it would be, you know, sometimes we go through life thinking that something's just never going to happen to us.
00:12:10.720 --> 00:12:14.000
Like no one ever wakes up and thinks, oh, I'm gonna have a stroke today.
00:12:14.000 --> 00:12:16.320
So no one's out there preparing for that.
00:12:16.320 --> 00:12:26.480
So what I would suggest is maybe think of this, maybe, you know, not that you want it to, but have a look at your superannuation, have a look at your mortgage insurance, your car insurance.
00:12:26.480 --> 00:12:28.080
What do your policies cover?
00:12:28.080 --> 00:12:34.159
Make some time to go and protect yourself financially for yourself and your family should something ever happen.
00:12:34.559 --> 00:12:37.360
It's really obvious that you're very passionate about this.
00:12:37.360 --> 00:12:48.000
What has this experience led you to do in terms of speaking out and creating a place where people can come and share their experiences and feel not so alone?
00:12:48.399 --> 00:12:52.320
Well, I have I'm the lead author of two compilation books.
00:12:52.320 --> 00:12:59.519
One's called Finding Yourself After Stroke, and the other one will be published soon called Finding Yourself After a Loved One Stroke.
00:12:59.519 --> 00:13:04.799
So that also shares how it doesn't just impact the stroke survivor, but also people around them.
00:13:04.799 --> 00:13:10.000
I've connected with the Stroke Foundation, you know, the Queensland Brain Injury Collaborative.
00:13:10.000 --> 00:13:17.120
I do a lot of work in the research space, and I'm quite a big advocate at Gold Coast Health as well, where I had my stroke.
00:13:17.519 --> 00:13:24.480
What message would you give to other young stroke survivors who perhaps are just beginning their recovery journey?
00:13:24.799 --> 00:13:39.200
My advice would be don't look at where you are now and think that this is your final destination because it's not, and things are always constantly changing, whether that's six months, twelve months, even decades, things can change.
00:13:39.200 --> 00:13:41.919
Also, you're not alone in your experiences.
00:13:41.919 --> 00:13:46.399
There are so many people out there who are thinking and feeling the same way you are.
00:13:46.399 --> 00:13:53.200
And probably my last piece of advice would be to just not put pressure on yourself to become that person you were prior to your stroke.
00:13:53.200 --> 00:13:59.519
You know, just appreciate all of the small things and the small wins because over time these are going to add up to be the biggest things.
00:13:59.919 --> 00:14:03.279
Thank you so much, Letitia, for being so candid about your experience.
00:14:03.279 --> 00:14:05.759
We're going to hear from Tanil now.
00:14:05.759 --> 00:14:17.759
And Tanil, first off, based on your experience, what would you say the biggest challenges are for young stroke survivors in the acute recovery phase compared to perhaps older patients?
00:14:18.240 --> 00:14:24.399
As Letitia pointed out, the first response of most young stroke survivors is shock.
00:14:24.399 --> 00:14:30.080
It's often the survivor will have a perception that stroke is an older person disease.
00:14:30.080 --> 00:14:35.360
This is particularly exaggerated when they're also athletes, and that happens.
00:14:35.360 --> 00:14:43.759
The young stroke survivors and their loved ones often require a lot of reassurance that there are many reasons why people experience stroke.
00:14:43.759 --> 00:14:53.600
There's also a degree of distress related to being in a ward environment, and that exposes the survivor to patients that are medically unstable.
00:14:53.600 --> 00:14:59.279
There's also high levels of disability that's secondary to stroke, and this can be very confronting.
00:14:59.279 --> 00:15:08.960
Often their life roles require them to be primary carers of dependents, which means they are trying to coordinate family life logistics and care for children.
00:15:08.960 --> 00:15:10.480
They're often working.
00:15:10.480 --> 00:15:17.840
This means they're sometimes in a hospital bed trying to delegate work tasks, reply to emails, or respond to work calls.
00:15:17.840 --> 00:15:24.240
They often hold a driving licence or they might be required to commercially operate vehicles or machinery.
00:15:24.240 --> 00:15:30.720
Stroke involves some degree of driving restriction, sometimes temporarily and other times more permanently.
00:15:30.720 --> 00:15:35.440
And learning about this restriction can lead to a whole range of emotional response.
00:15:35.440 --> 00:15:43.360
Most stroke survivors also have financial responsibility and or a mortgage, which can also cause anxiety.
00:15:43.360 --> 00:15:53.360
And all of these life circumstances and their current predicament can cause distress about how they'll resume those life roles for those that are dependent on them.
00:15:53.840 --> 00:16:03.279
So, given everything that you've just listed there, from your side of things, how do you prioritize rehabilitation goals for those younger patients specifically?
00:16:03.600 --> 00:16:12.399
So rehabilitation goal prioritization always starts with what's meaningful goals for the survivor and understanding those life roles is important.
00:16:12.399 --> 00:16:21.279
Often stroke survivors will experience more than one type of difficulty from stroke, example, unable to walk or difficulty communicating.
00:16:21.279 --> 00:16:26.159
These stroke difficulties can also improve across along different timelines.
00:16:26.159 --> 00:16:35.519
So the acute stroke team will help the survivor to understand this and support them to set realistic short, medium, and long-term goals.
00:16:35.519 --> 00:16:40.159
Stroke recovery usually involves a high degree of post-stroke fatigue.
00:16:40.159 --> 00:16:49.279
Therefore, therapists will monitor this carefully and provide education on how to gradually incorporate usual or modified tasks into their day.
00:16:49.279 --> 00:16:57.759
Typically, survivors are encouraged to return to usual independence with daily tasks before trying to return to work and leisure activities.
00:16:57.759 --> 00:17:03.519
But parenting responsibilities are so tricky because there isn't time off from that.
00:17:03.519 --> 00:17:16.960
Understanding the physical, emotional, thinking and communication demands, and depending on the age and the needs of those children is important for trying to gradually resume the full scope of that role.
00:17:17.279 --> 00:17:25.759
Are you able to speak to the kind of strategies that you use to support motivation and engagement in young stroke survivors during their recovery?
00:17:26.160 --> 00:17:30.880
Generally, stroke survivors in an acute phase are highly motivated to recover.
00:17:30.880 --> 00:17:38.079
An acute stroke teams sometimes have to temper that enthusiasm to support their longer-term success.
00:17:38.079 --> 00:17:47.359
This can be because in the acute phase they're developing an understanding of the implications of stroke, particularly the effects of fatigue on recovery.
00:17:47.359 --> 00:18:02.640
Acute stroke can also be a time when survivors may not be fully aware of the extent of their deficits, particularly in the domains of cognition and communication, and they may have difficulty understanding the concerns or advice from the treating team.
00:18:02.640 --> 00:18:13.440
Other times it's very apparent to the survivor, and I suspect that was the case with Letitia, and then they have this rapid period of adjustment to circumstance, and that can be very distressing.
00:18:13.440 --> 00:18:25.920
Mood screening is an important part of stroke recovery, and a specialized multidisciplinary team is well positioned to assess and manage this, both acutely, but it's actually more important later in recovery.
00:18:26.319 --> 00:18:32.799
Tanil, what interventions or therapies are the most effective in the first few weeks after a stroke?
00:18:32.799 --> 00:18:35.119
What do you find really works for patients?
00:18:35.519 --> 00:18:40.079
The first few weeks after stroke is a very accelerated period of brain recovery.
00:18:40.079 --> 00:18:44.319
Therefore, frequency and intensity of rehabilitation is critical.
00:18:44.319 --> 00:18:58.240
The Stroke Foundation has published really comprehensive evidence-based clinical guidelines to help clinicians select the most appropriate treatment modalities depending on the combination of stroke deficits.
00:18:58.240 --> 00:19:11.200
Really, the next challenge is matching the survivor with an environment that is most conducive to their recovery and with clinicians that can also review their progress and also upgrade the demands of their treatment.
00:19:11.200 --> 00:19:23.680
Sometimes this is necessary to occur in an inpatient setting to access that specialised care, but other times it can involve attending outpatient appointments or visits by community therapists.
00:19:23.680 --> 00:19:30.000
It also depends on whether there's specialised equipment or technology part of that rehabilitation process.
00:19:30.000 --> 00:19:36.319
And whilst intensity and frequency are critical, it also needs to be structured for the effects of fatigue.
00:19:36.319 --> 00:19:45.039
Specialised rehab teams are good at creating optimal recovery conditions for stroke survivors, but those conditions are often dynamic.
00:19:45.039 --> 00:19:49.519
So it's not just in the acute phase that things are changing rapidly.
00:19:49.519 --> 00:19:55.119
Whilst the first few weeks are important, stroke recovery extends well beyond this time.
00:19:55.119 --> 00:19:59.440
So connection with the right care at the right time is just as important.
00:19:59.759 --> 00:20:01.839
We keep hearing that word fatigue.
00:20:01.839 --> 00:20:09.759
I feel like it would be a missed opportunity to not ask you, Letitia, what did that look like for you and what what does it look like now?
00:20:09.759 --> 00:20:13.440
And what would it take for you to get absolutely exhausted?
00:20:13.440 --> 00:20:19.119
And I can only imagine adding a newborn to that situation and a four-year-old.
00:20:19.119 --> 00:20:20.000
My goodness.
00:20:20.319 --> 00:20:26.079
Yeah, so I didn't know what neurofatigue or post-stroke fatigue was for a little while.
00:20:26.079 --> 00:20:30.160
So when I did discover that word, I was like, that's me.
00:20:30.160 --> 00:20:32.160
And it really made so much sense.
00:20:32.160 --> 00:20:35.519
In the first couple of years, I was very tired.
00:20:35.519 --> 00:20:38.400
Like, I mean, I would just want to lie down all the time.
00:20:38.400 --> 00:20:42.400
And it's just a overwhelming feeling.
00:20:42.400 --> 00:20:48.160
Like you, your brain saying, Oh, I need to do this or I have to do this, and your body is just not allowing.
00:20:48.160 --> 00:20:51.279
You know, how I know that the fatigue is coming on now.
00:20:51.279 --> 00:20:54.000
So I know my body, I know my signs now.
00:20:54.000 --> 00:20:59.680
So I'll know if I'm feeling a bit agitated or if I've I'm feeling sensory overwhelmed.
00:20:59.680 --> 00:21:01.440
That's a big one for me too.
00:21:01.440 --> 00:21:06.400
And just knowing, just don't push through it, listen to what you need and get that rest.
00:21:06.799 --> 00:21:08.160
Thank you for sharing that.
00:21:08.160 --> 00:21:15.359
Daniel, I imagine that cognitive emotional challenges are part of the territory here.
00:21:15.359 --> 00:21:21.359
How do you approach those sorts of challenges and the fatigue that we've just heard Letitia speak of?
00:21:21.359 --> 00:21:24.799
Things like perhaps memory problems or anxiety?
00:21:25.440 --> 00:21:29.359
So cognitive challenges in the acute phase are very common.
00:21:29.359 --> 00:21:33.039
They're often complicated by communication change.
00:21:33.039 --> 00:21:38.559
We take a strength-based approach or try to focus on the things that survivors can do.
00:21:38.559 --> 00:21:40.240
I think that's a good strategy.
00:21:40.240 --> 00:21:47.279
Reassurance that just because it's difficult to do something now doesn't mean it's always going to be that way.
00:21:47.279 --> 00:21:55.839
Setting achievable tasks that are meaningful can also be helpful, for example, just attempting to read for 10 minutes or watch the news.
00:21:55.839 --> 00:22:02.240
Emerging insight can be one of the most challenging parts of acute care due to the potential safety risks.
00:22:02.240 --> 00:22:16.319
So this can include survivors pulling attachments for nutritional hydration due to not understanding they can't safely eat or drink something, or trying to walk without full understanding of those strength deficits.
00:22:16.319 --> 00:22:33.359
It's not uncommon to have to counsel survivors that the acute phase of recovery is not the appropriate time to revise a will, or to liaise with a real estate agent about finalising a house contract, or to start ripping out the bathroom and putting in a level access shower.
00:22:33.359 --> 00:22:40.160
So it takes a whole team approach to recognise these risks and manage them and also lots of reinforcement of this advice.
00:22:40.160 --> 00:22:48.559
Engaging families in education and intervention is helpful for reinforcing therapist advice outside of those reviews.
00:22:48.559 --> 00:22:54.960
Memory strategies like recording information or questions for the treating team can also be helpful.
00:22:54.960 --> 00:23:08.400
Providing written sources of information so long as that patient can understand it or read it is also useful so the survivor can review it at a later time, and that can help them prompt other questions for the team.
00:23:08.400 --> 00:23:14.000
Fatigue needs to be carefully managed in the acute phase, as it does in all stages of recovery.
00:23:14.000 --> 00:23:18.400
Sometimes this is apparent to survivors in hospital, other times it's not.
00:23:18.400 --> 00:23:23.920
It is compounded by a busy clinical environment where restful sleep is difficult.
00:23:23.920 --> 00:23:31.119
Often well-meaning friends and family will visit and communicate via text, which is excellent for emotional support.
00:23:31.119 --> 00:23:33.519
However, it can also be quite overwhelming.
00:23:33.519 --> 00:23:40.079
The team need to provide some educational gentle restrictions to facilitate that recovery.
00:23:40.079 --> 00:23:48.720
With regards to fatigue, I think it's important to rationalise the amount of assessment the survivor is subjected to, particularly on those first few days.
00:23:48.720 --> 00:23:53.200
Balancing some assessment with meaningful intervention also helps.
00:23:53.200 --> 00:24:03.519
Being mindful about providing education that matches the cognitive and communication ability at the stage of recovery is also an important consideration.
00:24:03.519 --> 00:24:17.359
Working within a team that understands the effects of post-stroke fatigue is really critical, as fatigue can have significant effects on the survivor's ability to swallow, mobilise and communicate their needs safely.
00:24:17.359 --> 00:24:26.000
It's also important for survivors discharging home to be aware that fatigue effects will potentially increase as their activity demands increase.
00:24:26.000 --> 00:24:34.960
It's important to plan for this and to ensure the recovery timeline has flexibility to absorb activity pacing and rests.
00:24:34.960 --> 00:24:40.160
Connection with a rehab team that is familiar with post-stroke fatigue is important.
00:24:40.160 --> 00:24:43.680
Emotional challenges are common in stroke recovery.
00:24:43.680 --> 00:24:59.599
Members of the acute stroke team are familiar with recognising small changes in neurological recovery, and I think they do a good job at helping survivors draw their attention to that and also encouraging them to be able to observe those little changes as well.
00:24:59.599 --> 00:25:10.079
It's also important to explain that recovery is rarely linear, so not to be discouraged if some days things don't improve as easily or at the same rate as others.
00:25:10.079 --> 00:25:15.920
And prescribing therapy tasks that survivors can practice outside of therapy sessions is often empowering.
00:25:16.559 --> 00:25:26.960
So, how do you collaborate with families and caregivers to make sure that continuity of care and that there are realistic expectations from everyone concerned?
00:25:27.279 --> 00:25:31.680
So, family and caregivers can be really important in the stroke survivor's recovery.
00:25:31.680 --> 00:25:38.880
In addition to providing the survivor with emotional support, they often become the logistics manager for the survivor.
00:25:38.880 --> 00:25:44.720
For example, they coordinate when and for how long family and friends can visit for.
00:25:44.720 --> 00:25:54.799
They can also be helpful for delegating family responsibilities, liaising with workplaces, and managing some of the communication demands for the survivor.
00:25:54.799 --> 00:26:05.359
Family and caregivers are also really helpful for reminding survivors of therapists' recommendations or encouraging self-practice of tasks outside of sessions.
00:26:05.359 --> 00:26:14.319
Sometimes stroke survivors will physically recover faster, enough to be able to manage at home, however, not well enough to return to their full life roles.
00:26:14.319 --> 00:26:23.440
Clinicians will link these young survivors with rehabilitation services so they're able to support their recovery needs beyond the hospital environment.
00:26:23.440 --> 00:26:29.599
Family and caregivers are an important part of supporting the survivor at home while they continue to recover.
00:26:30.240 --> 00:26:38.799
So, from your perspective, what long-term strategies help stroke survivors to regain independence and to reintegrate into their daily lives?
00:26:39.119 --> 00:26:50.799
I think early identification of rehabilitation needs and connection with rehab teams to support recovery over the long term is important for acute stroke teams to get right.
00:26:50.799 --> 00:26:55.119
The brain is complex and recovery is also complex.
00:26:55.119 --> 00:27:03.039
Specialised rehab teams are familiar with the obvious, but probably more importantly the less obvious challenges of stroke recovery.
00:27:03.039 --> 00:27:10.000
They can offer remediation and or compensation strategies depending on the deficit and the stage of the recovery.
00:27:10.000 --> 00:27:13.519
Recognition of return to work goals are paramount.
00:27:13.519 --> 00:27:19.680
I believe our rehabilitation systems have opportunity to better meet these challenges for stroke survivors.
00:27:19.680 --> 00:27:36.240
But ultimately, stroke survivors developing self-management skills is critical, and rehabilitation teams can assist this process by direct instruction or through connection with high-quality resources such as the Enable Me platform on the Stroke Foundation website.
00:27:36.640 --> 00:27:37.920
Tanil, thank you so much.
00:27:38.240 --> 00:27:39.039
Thanks, Rebecca.
00:27:39.440 --> 00:27:40.880
Now to you, Matilde.
00:27:40.880 --> 00:27:46.160
How do inhibitory neurons help the brain to recover after a stroke?
00:27:46.480 --> 00:27:53.920
Yeah, so inhibitory neurons, which are little cells in the brain, they act like the brain's break.
00:27:53.920 --> 00:27:59.119
After a stroke, uh brain circuits can become much more chaotic.
00:27:59.119 --> 00:28:01.359
They are overexcitable.
00:28:01.359 --> 00:28:06.799
And inhibitory neurons act like the brain's fine-tuning system.
00:28:06.799 --> 00:28:18.480
They quiet down this overactivity, uh helping basically to restore the balance and allowing healthy communications across brain cells networks.
00:28:18.480 --> 00:28:26.640
And this helps because it creates the right environment for the brain to rewire and to basically recover.
00:28:26.960 --> 00:28:31.519
And why are these more important than I guess other types of neurons for recovery?
00:28:31.839 --> 00:28:46.799
I would say that they are as important as other neurons, but there is something very special about inhibitory neurons, and that is that they keep brain activity in check and they help to coordinate communication between regions.
00:28:46.799 --> 00:28:54.480
And when inhibitory neurons aren't working properly, the brain's messages become noisy and uncoordinated.
00:28:54.480 --> 00:29:00.720
And that makes it very hard for the brain to rebuild lost connections.
00:29:00.720 --> 00:29:05.359
So they don't just silence the brain, but they help to organize it.
00:29:05.680 --> 00:29:13.200
What can you tell me about gamma frequency stimulation and how does it protect brain cells after someone's had a stroke?
00:29:13.519 --> 00:29:20.240
So gamma stimulation delivers gentle pulses at around 40 times per second.
00:29:20.240 --> 00:29:25.440
And that's a rhythm that naturally occurs in a healthy brain.
00:29:25.440 --> 00:29:34.799
And this frequency helps brain cells to communicate more efficiently, basically, and that can improve blood flow and can also reduce inflammation.
00:29:34.799 --> 00:29:41.039
So, together, all these effects help protect neurons and support the repair that happens after stroke.
00:29:41.440 --> 00:29:47.039
Can methods like gamma frequency stimulation be used together with physical or occupational therapy?
00:29:47.279 --> 00:29:51.440
Absolutely, and that's where things get really exciting.
00:29:51.440 --> 00:29:59.920
So, brain stimulation can prime neuronal networks, and that makes them more responsive, or could make them more responsive to rehabilitation.
00:29:59.920 --> 00:30:12.000
So when patients do physical or occupational therapy afterwards, their brains may be better prepared to relearn and strengthen new pathways.
00:30:12.400 --> 00:30:19.279
Why is it important to help both the area that was damaged by the stroke and other parts of the brain that are connected to it?
00:30:19.839 --> 00:30:22.319
Because the brain works as a network.
00:30:22.319 --> 00:30:30.160
When one area is damaged, others that are connected to this area also struggle after a stroke.
00:30:30.160 --> 00:30:45.920
So by supporting both the region that is affected and all the connected regions, we give the brain a better chance to reorganize, to redistribute functions and to compensate for what was lost.
00:30:46.240 --> 00:30:53.279
How exactly does the brain's built-in kind of backup systems and balance help people to recover?
00:30:53.279 --> 00:30:56.640
And can these systems actually be improved?
00:30:56.960 --> 00:31:01.440
The brain has an incredible ability to rewire.
00:31:01.440 --> 00:31:08.079
It can shift functions to undamaged regions and strengthen existing pathways basically.
00:31:08.079 --> 00:31:19.359
And with the stimulation or target training or even lifestyle interventions, we can enhance this natural plasticity to basically support better recovery.
00:31:19.359 --> 00:31:23.279
How do you know if the brain is recovering after a stroke?
00:31:23.279 --> 00:31:24.799
What do you use to measure that?
00:31:24.799 --> 00:31:37.200
We are able to track changes in brain activity, changes in blood flow, and we can also track changes in connectivity using imaging, using electrophysiology.
00:31:37.200 --> 00:31:44.640
And we can additionally also measure behavior, for example, improvements in movement or memory.
00:31:44.640 --> 00:31:53.839
And this allows us to see how well the brain's functional recovery translates into real-world ability.
00:31:54.160 --> 00:32:00.400
And so what can you tell us about how your research could lead to new treatments for stroke patients in the future?
00:32:00.799 --> 00:32:08.640
Our work helps identifying which brain rhythms and cell types are key for recovery.
00:32:08.640 --> 00:32:24.160
The knowledge could lead to precise non-invasive stimulation therapies that are tailored to each person's brain, improving rehabilitation outcomes and reducing long-term disability, which is one of the main goals of our research.
00:32:24.160 --> 00:32:29.200
So, what are the next steps in your research to help people recover better after they've had a stroke?
00:32:29.200 --> 00:32:33.039
Right now we are testing how to personalize a stimulation.
00:32:33.039 --> 00:32:43.839
And by personalizing, I mean adjusting timing, frequency, and the location of the stimulation and how it can be combined with rehabilitation.
00:32:43.839 --> 00:32:52.880
And the goal is to move from lab-based experiments toward clinical applications that can directly benefit patients.
00:32:53.200 --> 00:32:57.519
Letisha, Tanil, and Matilda, thank you so much for being here today.
00:32:57.519 --> 00:33:06.960
It's been a pleasure to get to the chance to speak with all of you and thank you for being so candid with your lived experiences and sharing your knowledge and wisdom.
00:33:07.279 --> 00:33:08.400
Thanks for having us today.
00:33:08.559 --> 00:33:09.359
Thanks, Rebecca.
00:33:09.440 --> 00:33:10.559
Thanks a lot for having me here.
00:33:10.559 --> 00:33:11.359
It was a pleasure.
00:33:11.759 --> 00:33:19.839
If you'd like to learn more or support the work that's done at the Queensland Brain Institute, head to qbi.uq.edu.au.
00:33:19.839 --> 00:33:23.119
I'm Rebecca Archer, and that's all for this episode.
00:33:23.119 --> 00:33:24.720
Thanks for listening.