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Facing a Migrainous Stroke: Helen van Hooft’s Story of Resilience and Recovery
Manage episode 455812466 series 2807478
What Is a Migrainous Stroke? Recognizing and Managing This Rare Condition
Migrainous stroke, also known as migraine-induced stroke or migraine infarction, is a rare and serious complication of migraines, particularly migraines with aura. While most migraines do not lead to a stroke, understanding the risks, symptoms, and treatment options is crucial for stroke survivors and caregivers.
What Is a Migrainous Stroke?
A migrainous stroke occurs when a migraine, typically one with aura, triggers an ischemic stroke—a disruption of blood flow to the brain. This condition is uncommon but can have lasting effects if not treated promptly. Migrainous strokes are more likely to occur in younger individuals under 45 years old and are often linked to specific risk factors, including hormonal influences and genetic predispositions.
Who Is at Risk?
While migrainous strokes are rare, certain factors can increase the risk, including:
- Migraines with aura: These migraines involve visual or sensory disturbances before the headache phase.
- Female gender and age under 45: Women are more prone to migraines with aura, particularly during hormone fluctuations.
- Smoking and oral contraceptive use: These can increase stroke risk in women with migraines.
- Underlying health conditions: Conditions like hypertension or a patent foramen ovale (PFO) can elevate risk.
Symptoms of a Migrainous Stroke
The symptoms of a migrainous stroke can overlap with those of a severe migraine or an ischemic stroke, making it important to seek medical attention if symptoms persist or worsen. Key signs include:
- Sudden and severe headache, often unlike typical migraines.
- Neurological deficits: Weakness or numbness, typically on one side of the body.
- Vision disturbances: Loss of vision, blind spots, or trouble seeing on one side.
- Difficulty speaking: Slurred speech or trouble understanding language.
- Loss of coordination: Trouble walking or maintaining balance.
Note: Unlike migraine aura symptoms, which are temporary, stroke symptoms persist and can result in long-term deficits.
How Is It Diagnosed?
Diagnosing a migrainous stroke involves thorough medical evaluation, including:
- Neuroimaging: MRI or CT scans to detect brain ischemia or infarction.
- Medical history: Details about migraine patterns and aura symptoms.
- Exclusion of other causes: Ruling out conditions like blood clots or other types of stroke.
Treatment Options
The treatment for a migrainous stroke includes managing the immediate stroke symptoms and addressing underlying migraine triggers. Common approaches include:
- Acute Stroke Treatment:
- Thrombolytic therapy: Used in ischemic strokes to dissolve clots if identified early.
- Oxygen therapy or medications to manage pain and stabilize neurological symptoms.
- Preventive Care for Migraines:
- Medication: Beta-blockers, anticonvulsants, or CGRP inhibitors to reduce migraine frequency and severity.
- Lifestyle adjustments: Managing stress, maintaining hydration, and avoiding known migraine triggers (e.g., specific foods or environmental factors).
- Stroke Recovery and Rehabilitation:
- Physical therapy: To regain strength and coordination.
- Occupational therapy: To adapt to challenges in daily life.
- Speech therapy: If language or swallowing difficulties occur.
Actionable Steps for Stroke Survivors and Caregivers
- Recognize early warning signs: Any persistent neurological symptoms during or after a migraine should be treated as a potential emergency.
- Act fast: If stroke symptoms are present, call emergency services immediately. Timely intervention can prevent long-term damage.
- Seek specialized care: Work with neurologists and stroke specialists to create a personalized treatment plan.
- Monitor migraine patterns: Keep a headache diary to identify triggers and warning signs of complications.
- Adopt preventive strategies: Regular exercise, stress management, and a healthy diet can help reduce the risk of stroke.
Living with a Migrainous Stroke
Survivors of migrainous stroke often face challenges like visual impairments, sensitivity to light or noise, and fatigue. Support from caregivers and a strong rehabilitation plan can make a significant difference in recovery. Remember, every stroke journey is unique, and progress takes time.
Migrainous strokes remind us of the importance of acting quickly and staying vigilant when it comes to migraine symptoms. Whether you’re a stroke survivor or a caregiver, understanding this condition empowers you to make informed decisions and take steps toward a healthier future.
If you’ve experienced migraines with aura or suspect a migrainous stroke, consult a healthcare provider immediately. Early detection and treatment are key to better outcomes.
Living with a Migrainous Stroke: Helen van Hooft’s Inspiring Journey
Discover Helen van Hooft’s story of resilience after a migrainous stroke, offering hope and inspiration to stroke survivors everywhere.
Highlights:
00:00 Helen’s Initial Migrainous Stroke Symptoms and Hospital Visit
07:16 Emergency Room and Initial Diagnosis
14:20 Migrainous Stroke Diagnosis and Hospital Admission
26:30 Impact of Stroke on Daily Life
35:07 Adapting to New Normal
59:45 Adapting to Life Post-Stroke
1:23:57 Reflections on Resilience and Spiritual Growth
Transcript:
Helen’s Initial Migrainous Stroke Symptoms and Hospital Visit
Bill Gasiamis 0:00
Hello everyone, welcome to another episode of the Recovery After Stroke podcast. If you’re looking for a guide to navigating life after stroke, check out my book ‘The unexpected way that a stroke became the best thing that happened. It’s filled with practical strategies, inspiring stories and insights that can help you on your recovery journey, you can find it on Amazon or at recoveryafterstroke.com/book. Today, we’re diving into an incredible and deeply inspiring story with Helen Van Hooft, my grayness stroke survivor and spiritualist.
Bill Gasiamis 0:38
Helen’s journey through a rare and challenging condition has shaped her perspective on life, resilience and the importance of living authentically. Helen’s experience as a spiritualist adds a unique layer to her story, offering insights into how connection, introspection and self discovery have played a role in her recovery. Whether you’re a stroke survivor, caregiver or someone seeking inspiration, this episode is sure to resonate deeply. So let’s jump in and hear from Helen Van Hooft. Helen Van Hooft, welcome to the podcast.
Helen Van Hooft 1:16
Thank you for having me, it’s nice to meet you.
Bill Gasiamis 1:18
Nice to meet you too. Tell me a little bit about what happened to you.
Helen Van Hooft 1:24
Well, it was a bit of a lead up on the 29th of April, I started to to have a massive migraine, I was working, and in the middle, well, coming to the end of what I was doing, and I had a massive pain go at the back of my head, and I sort of came downstairs because it was pandemic, and I came downstairs, my husband took a look at me, and something wasn’t right. It was say in inverted commas, usual for me to have a migraine at a certain time of the month and I had that, but it didn’t really go away.
Helen Van Hooft 2:25
And I tried to power through, I guess, and I said to him it’s sort of ramped up. So it was my, again, usual pattern of behavior to have a shower and take himself to bed and then he wouldn’t normally see me for, I would say, about 12 hours, I’d sleep it off. This time within, I’d say, I don’t know, an hour or so, I came back down, I was agitated, I was pacing, I was in a lot of pain. And he looked at me, he said ‘Something’s not right. I said ‘No, I know something’s not right, pain. And I was sort of clenching my hands.
Helen Van Hooft 3:20
I was pacing my feet, my toes were curling, and he just took a look at me, I just couldn’t settle. So he phoned, sort of the Dutch equivalent of like, their help lines or medical helpline, and they were talking, can’t really remember too much, describe my symptoms and asked what the pain was. Now, I’ve had four children so I can tolerate pain, and I was in it was ramping up, and it was going quickly, and I said ‘It’s about eight. She was like ‘That’s not good. So she was like ‘She vomited. And he was like ‘No. And right on cue.
Helen Van Hooft 4:24
I was sick, so she was like ‘Get to the hospital now I don’t like her symptoms.Just by sheer thought, I said ‘I think we’d better take a bucket with us. And lucky enough that getting me in the car, he had to help me into the car, get me into the car, just the movement of that car as we had to go up a slipway onto the main road. Well, you can imagine what happened in that car, and we were very thankful that I had bought the bucket and we arrived, he just sort of my husband. My children have always teased him that he’s a bit of a granddad driver.
Helen Van Hooft 5:22
And that day, I think he wasn’t. And we arrived, and I was very dramatic as I arrived in the accident and emergency department, because I collapsed as soon as I arrived in the accident and emergency. I can’t remember too much, but they sort of obviously bundled me up, because, as I said, it was pandemic, they sort of bundled me up. And what I can recollect was a nurse was trying to put a mask on me, and I got very agitated, because I have a very sensitive sense of smell, and I can clearly recall the sense the smell of vomit.
Helen Van Hooft 6:15
And so I was ripping this mask off, and I can remember, I don’t know whether it was a doctor or nurse, just saying in Dutch ‘Just leave it, because that was getting on my nerves. By the time I came back round, I had all manner of examinations, including CT scans and I think, I don’t know if it was MRI anyway, I can’t remember, but there was no tumors or bleeds or anything into my brain, so I had completely gone. And I’d had a near death experience, and all sorts of stuff had happened, but it was still not clear what was happening, other than when I’d come back round.
Emergency Room and Initial Migrainous Stroke Diagnosis
Helen Van Hooft 7:16
It was saying ‘Can you describe the level of your pain? And I said ‘Well, put it this way, if I had a knife, I would be driving it into my head right now, and she’d be like ‘Ah, okay. And the panic in the room it was still not clear at this point what was going on, no stroke of being diagnosed or whatever. And they kept me in overnight, and by the afternoon, then that the next day, everything was quiet, there was nothing going on. I was completely calm, clear, and they said ‘We can’t do anything. Nothing is showing nothing, it was like nothing at all. It happened.
Helen Van Hooft 8:08
So the only thing that they could do was send me home. It was completely bizarre. So off I go home, though I was scared, my husband was scared because it was lit so frightening, and they sent me home with painkillers. You know, instructions, obviously clear instructions, if this happens again, this is what you do. You don’t mess around, because this is completely unknown, you know, they’d kept me on oxygen to preserve my brain. You know, they were very, very cautious, the level of care was unbelievable, and they were just completely flummoxed.
Helen Van Hooft 9:01
And within 20 minutes of being home, happened again. Didn’t know, and my husband straight on the phone. So they and obviously he was scared, and all they could do say, you know, give her the tablets, knock her out and see what happens. So that’s what we did, and I’m out for the count.
Bill Gasiamis 9:34
And that’s just to get the pain managed and to get you through that part.
Helen Van Hooft 9:40
Yeah, and to because there’s nothing, at this point, they don’t understand what is happening, they’re questioning whether it’s these hideous if anybody listening has them, what they call cluster migraines, where they come.
Bill Gasiamis 10:03
Let’s take a quick break here, before we continue with Helen’s powerful journey and her reflections on resilience and spiritual growth. I want to remind you about resources that can help you in your own recovery journey. Firstly, my book ‘The unexpected way that a stroke became the best thing that happened. Is packed with insights, practical strategies and inspiring stories on post stroke growth.
Bill Gasiamis 10:29
It’s available on Amazon and at recoveryafterstroke.com/book. Second, if you’re looking for a more guided support, check out the courses available at recoveryafterstroke.com/learn. These narrated video lessons are created by a stroke survivor for stroke survivors, designed to help you take actionable steps in your recovery. Now, let’s get back to the interview.
Helen Van Hooft 10:55
And they come with such a ferocity that it is this, you just feel like your head is going to explode and you I’m not a dramatic woman. Yes, I have some dramatic flair, of course, but I’m not somebody that’s going to scream and be hysterical or anything like this, but this pain in my head, my goodness me. It was just I could have, literally, like I say, stabbed my head, I could have just thrown myself off a cliff, it was just unbelievably unbearable. I couldn’t and they could see how my hands, my feet, I my legs. I was just agitated all the time, I just couldn’t do anything.
Helen Van Hooft 11:55
And I would hold on to my husband, and I would just squeeze so they were and what they do with cluster migraines is they put you on oxygen. And what they have learned in the medical profession that to give you oxygen once you’re having a cluster migraine is that the cluster migraine responds to oxygen after about 20 minutes, it wasn’t responding. So what they could then counter, what they could realize that it wasn’t cluster migraines, but to keep me on oxygen was to preserve my brain, because they had no real knowledge of what was happening.
Helen Van Hooft 12:50
So this pattern started to repeat for 10 days and what then, because of, I guess, pain and whatever, I started to collapse. So paramedics then would be called to my house because I would collapse, and obviously that’s not good. The paramedics came gave me fentanyl to relieve me of pain. And because then I would respond, the pain would go and I would come out and be sort of compos mentis, and they were like ‘We don’t know this is and it’s this pattern.
Helen Van Hooft 13:42
In the end, I got I like, I just could feel within my body, and my husband was like ‘This is not good. And I could have this sense within m, I just felt like I was on this steam train heading towards something not good, and I just felt like nobody was they were listening, but not. Do you know what I mean?
Bill Gasiamis 14:15
Yeah, they were hearing you, but they weren’t getting the message.
Migrainous Stroke Diagnosis and Hospital Admission
Helen Van Hooft 14:20
They were, yeah, hearing me, but not really listening, it’s like, something’s going to happen. Because this isn’t right, it’s not responding but and it’s not going away, and I can’t live my life in bed, you know?
Bill Gasiamis 14:42
And in the end, it was diagnosed. This is, hopefully you can help here, this is the weird part is diagnosed as a migraine, migraines stroke, which when I look at on Google, it says, migraine stroke, also known as a migraines infarction or migraine induced stroke, and it is an uncommon complication of migraine, identified by ischemic stroke on neuroimaging that corresponds to prolonged aura symptoms in a patient with migraine. So in the end, they have identified it, they have given you that particular diagnosis. How long did it take for them to get there?
Helen Van Hooft 15:34
Well, as I said, this pattern continued for 10 days, and it was horrendous. I know, I remember one day my eldest son came home to just to see me and gave me a hug. And in that hug, it instantly happened like it just, it would come on like a sledge hammer hitting my head, and it’s just so traumatic. Anyway, we booked this an appointment at the doctor again, and it was a young doctor. She was ‘Yeah, and she sat and she listened to the story and and she said, I can see you know, you’re upset, you’re traumatized. And I said ‘Yes, because this shouldn’t be happening.
Helen Van Hooft 16:36
This there’s something not right, and she said ‘Okay, I’m going to send you for an MRI, I’m going to see what it and I’m going to do that today. And she phoned a colleague of hers at the hospital, and she said ‘And you’re, you’re going to leave here and you’re going to go. And she did, so off we check back to the hospital, and I walk in fine, but obviously husband and I are quite anxious, because we know that this thing can happen at any time, and so they take wheel me down for an MRI.
Helen Van Hooft 17:23
I go in fine and as they wheel me out, I’m sat with my head and my hands, and I’m rocking so the the noise of the MRI has triggered one of these episodes. So it’s all hands on deck with the like the accident and emergency team, and they’re like ‘What, what on earth we do with the the oxygen? And so they can see it in full effect. They can see how immediate it happens, and they’re like ‘Okay, what? What do we do? You know, they’d sort of giving me sort of pain, and this, that and the other.
Helen Van Hooft 18:15
So they take, they admit me to the ward, and I think that’s on the Friday, so I’m on the ward, and then on the Saturday, because it’s almost like, each time what I forgot to tell you Bill, each time they are calling, like stroke, because there’s like stroke, like symptoms, how I’m doing it, because of, they’re going through that stroke check, you know, with the yeah and the fingers, how many fingers and, and I can remember, I’m getting a bit agitated with with it, because it’s constant what they’re doing.
Helen Van Hooft 18:59
I realize it’s precaution and, and it’s care and, and I’m every time they’re like, mm, because there’s symptoms that I’m showing that they’re not too happy with. And then it goes, and then it’s back again, then it goes, and so they’re and then on a Saturday, there’s a young there’s two nurses that come in the room, and it’s a young chap that’s in his nurse’s training. And I don’t know what time it is, and I’m going through the process again, and I know that they’ve woken me up, so I’m not really I’ve obviously slept a long time, and and he’s at the end of my bed.
Helen Van Hooft 19:55
And like, clearly, something’s not quite right, and he they’re doing the stroke check, and they’re like, am I? And he’s going, he’s asking me a question, and I can remember, they said ‘How many fingers am I holding up? I’m like, what fingers is that? What I’m at? What fingers? He said ‘Helen, are you telling me you can’t see my fingers and that I can’t even see you? I can hear you. He’s like and I called it, and I’d had a stroke, wow, and I had a right occipital, in fact. So all of the occipital, right occipital is completely wrong.
Bill Gasiamis 21:02
And the MRI confirmed it.
Helen Van Hooft 21:07
So that was on the Saturday, on the Tuesday, because it was a national holiday on the Monday, so or the consultant and everything was away on the Tuesday, they will to me down and take me in three MRI.
Bill Gasiamis 21:26
Alright, so an ischemic stroke, apparently, according to me and my knowledge, perhaps I’m wrong, is where there’s a clot of some sort, some kind of a blockage in the blood vessel.
Helen Van Hooft 21:44
No clot, but that it was a block.
Bill Gasiamis 21:48
Blocked from something, or has it retracted and instead of being round, it’s flat or something?
Helen Van Hooft 21:57
Don’t know? I can’t answer that question, because I think my neurologist when she when she told me on the because I’m still under the care of my neurologist, because I have a chronic condition called status munosis, so that’s a permanent, untreatable migraine as a consequence of all of that she’s she just it’s all to do With all of the pressure that was there that caused the blood to go into the right occipital of my brain.
Bill Gasiamis 22:53
Okay, so sounds like some kind of a just like a lack of blood flow, more than anything, caused and by the by the immense sort of pressure caused by this migraine has impacted negatively the ability for blood to flow to the right occipital lobe, and that caused A headache. Did it cause other symptoms to your body, like any type of deficits that you felt physically, the stroke?
Helen Van Hooft 23:30
Yeah, I have left sided weakness I have in my left eye, so my eye itself is healthy, so I’ve been I’ve had lots of tests and investigations with the like the Dutch equivalent of the Royal Society for the blind. So my eyes, in particular, my left eye is completely healthy. So it’s the brain obviously, we know once blood gets to the brain, that’s it, it’s dead.
Bill Gasiamis 24:18
The eye is healthy. A lot of strokes of eyes actually might not be aware that when they have deficits in the eye, it’s not the eye, it’s the neuronal connections to the eye are not there because there’s damage there, and therefore it’s a cause of, well, say, somebody has blindness because of a stroke. It’s it’s a different kind of blindness, because it’s not the eye that’s the problem. It’s computer.
Helen Van Hooft 24:45
The brain is the computer, so it’s bit, so all of that occipital it is completely gone in my brain. My eyes rely completely on the left side to work. I have a visual impairment, so on my left, I can’t see, so to the left, it’s like there’s a line in my vision. So when I’m home, obviously I’m in a familiar surrounding, so my memory feels in that blank so I can effectively see I know what I’m doing, but should things change then I’m a bit scuppered, and there’s an example of that, like last night.
Helen Van Hooft 25:57
There was a pair of shoes because they were left on the mat where they shouldn’t be, and because they were unfamiliar, I didn’t see them, so I tripped over them, because they shouldn’t be there. So I didn’t see them, so I tripped over them. So when I’m out and about, I’m more vulnerable because I’m in an unfamiliar place, so I’m having to see and move.
Impact of Migrainous Stroke on Daily Life
Bill Gasiamis 26:36
Much more head than normally.
Helen Van Hooft 26:40
Yeah, so in my home, I’m okay. Now this stroke has left me very light sensitive, very movement sensitive and very noise sensitive, because it’s a migraineous stroke. So anybody that has migraines know how sensitive we become, so I have to live with that all of the time. Like you say, a left sided weakness as well, I used to be very, not very, but I could get very aphasic when I’m tired and lose my words fatigue, that’s a, I think, a general thing when you’re stroke.
Helen Van Hooft 27:38
And with that fatigue, you can sort of get emotional and irritable and things like that. That’s less so, which I’m fortunate about, but I can get tired.
Bill Gasiamis 27:53
Again, according to the internet, the occipital lobe sits at the back of the head and are responsible for visual perception, including color, form and motion. Have you had any visual perception issues, color issues, form and motion issues, motion.
Helen Van Hooft 28:16
If especially motion. I’m so grateful about not losing my color perception, because color is a big thing for me, I’ve told you about vision, but motion. I’m really, really motion sensitive. So if there’s a lot of movement around me, my only way of coping with that is closing my eyes. So there’s a loss of independence, because driving was a big thing for me, and obviously I can’t do that anymore, because over here in the Netherlands, also we have cyclists, there’s that’s a big part of their culture, and along the side of the roads there’s lots of waterways, and to help manage the water in this country.
Helen Van Hooft 29:28
There’s also a lot of trees. So the the trickery of the light, the sun coming through the light the trees, and in the summer, with all their leaves and things in the wind, when that blows and plays with the light on the cars is things like that I’ve learned how the the light refracts. My brain can’t cope with that, so I have to close my eyes. Now, if you’re driving a car.
Bill Gasiamis 30:07
It’s not a good idea to close your eyes.
Helen Van Hooft 30:09
Yes, no. And also with when it’s raining and you’ve got the windscreen wipers going, so you’ve got the rain coming, windscreen wipers and the lights of the oncoming cars. My brain can’t cope with that either, and the only way I can cope with that is to close your eyes. So I’m a bit lethal if you put me behind a wheel of a car. So it’s all although one of my goals, because I’m good at I like to set goals for me to achieve was to get myself back driving again, and I started.
Helen Van Hooft 30:52
And then all of a sudden I was like ‘Oh, hang on, oh, it was only in doing it did I realize, hang on a minute, I can’t, no, this isn’t good, this isn’t good. So I sort of very I had to sit down and reflect. Actually, no, this isn’t for me, because if I hurt somebody, because I want to be driving. No, I can’t live with that. I’m not doing it.
Bill Gasiamis 31:28
How were you employed beforehand? What kind of work did you do?
Helen Van Hooft 31:32
I’m self employed. So I’m a medium and a coach and a tutor of that.
Bill Gasiamis 31:52
And we were you a self employed medium and coach, etc, who had a practice somewhere that you went to do that work.
Helen Van Hooft 32:01
Well, this was in the pandemic, and because I’m expat as well, so I was working primarily online and building myself back up again. So, yeah, I’m having to do that all over again.
Bill Gasiamis 32:22
I know how you feel, I’ve been there, done that, and still doing that. Had the seven years or so to get back to work. And then that was 2019 and I don’t think I was at work for more than about six to nine months, you know, self employed as well. And then we were in the biggest lockdown on the planet in Melbourne, here in Australia, for nearly 18 months out of 24 and then then the economy goes into nosedive for many, many reasons.
Bill Gasiamis 32:59
And in Victoria, where I live, more so because the economic situation to keep people locked up for such a long time had a greater impact than some other states, and we still haven’t got out of that mess, and people are struggling, you know, to employ people, to provide them services, because the funding is not so good. So it’s been a a real battle for from about 20,000 to 20,000 from 2012 to 2024 to stay afloat, to cover outgoings, to achieve, you know, financial independence, to have people employed.
Bill Gasiamis 33:48
It’s been a massive thing, and it kind of is a little it’s been okay because there’s no overheads. I don’t have an office, I don’t have a factory and a whole bunch of things and massive loans that are out on the business or anything like that. So you kind of scale down, and then you scale up, but at the same time, when you’re scaling down, you’re not earning money. So it’s really tough, right? But it feels like there’s no other choice, like, what do you do? You have to keep finding a way forward.
Bill Gasiamis 34:27
I’m lucky. My wife works so she’s been able to cover the outgoings. But I’ll tell you what it does take a I’m not sure if it’s not emotional, it’s a psychological hit on you, because I’m doing and I’m not doing this much, right, but you know, I have been at my worst times kind of feeling like ‘Oh my god, like men are traditionally the breadwinner and you’re not bringing any money and you’re relying on your wife, and there’s a couple of a little bit of that negative self-talk. A very short amount of time, but still really surprised that it’s there.
Adapting to New Normal
Bill Gasiamis 35:06
And it’s like ‘Wow, you’ve never dealt with anything like this before, have you mate? So you’ve got to work a way through and deal with it. And your wife’s not saying any of that stuff. She’s not saying ‘Why don’t you pull your finger out and give us some more income. She doesn’t do that, but I still have that thing that goes on in my head that many males might relate to, and I suppose other people who are not males, women might relate to it as well. So that’s been one of the biggest battles, and I see it as a setback.
Bill Gasiamis 35:42
When I’ve spoken to people about it, you know, family and friends who thank God, are healthy and well, and they’ve been going well, and they’re achieving their financial goals, amongst other things. You know, it has come up a couple of times where I’ve sort of said, like, this has been such a massive financial setback, it’s crazy. How do you deal with that? How do you kind of get your wrap your head around that part of it?
Helen Van Hooft 36:13
It is hard because you have your own voice in your head, but you also have the medical profession with what they know medically saying you can’t do that, you shouldn’t be doing that, because I’m also studying within what I do. And I remember, as I affectionately called her my brain nurse, and I told her what I wanted to achieve within my mediumship, if you like, and the study there that, and she was like, well, that’s a lot. And then when within that people, because you’ve had a brain injury, they don’t understand it.
Helen Van Hooft 37:20
Because they’ve got no perception of it, and they’re like ‘Oh, are you sure? Oh, are you I don’t. And one person in particular, you know, you can’t do that, she’s not this, she’s not. And you and I, and I think, and the effects, like on my husband, who had a burnout, as it’s called over here, not just because of me. It was a whole catalyst of of stuff that that sort of, I think I was the cherry on the cake. I think you have to take it one day at a time, and the thing that I’ve learned is thoughts are not things.
Helen Van Hooft 38:24
And if you start going down that rabbit hole of your thoughts that I’ve learned to think, get off that you can change your thoughts. You don’t have to keep thinking that thought. And I did it the other day, and a friend of mine, because I started on that track, and a friend of mine sent me a voice clip, and she said ‘I think we need to change our thoughts about that. And I thought ‘Oh, you’re so right. I did it to myself, I did it. She was so right, and her manner in which she said it was like almost quite school teacher-ish, I think we need to change our thoughts about that.
Helen Van Hooft 39:23
I thought, yeah, you’re so right, we do. And I think, Bill, it is our thoughts in our own self perception, and we get so colored, if you can’t, when we were talking about color, but about what we should be doing. We should have achieved that. We should we must do that, I’m a man, so I must have achieved this, and I should be earning that, and yeah, but you’re a man that is.
Helen Van Hooft 39:59
Had a stroke, most important, you know, and so your your life has been shaped and and affected, and all of it, so you’re doing the best that you can, given the circumstances, and you know all credit to you by getting up again and living each day the best way that you can and your best, my best, our Best, is going to be different every single day, and that’s all we can do, is live our best every day.
Bill Gasiamis 40:47
Yeah, you know that guy that says that stuff to me and puts those thoughts in my head, he doesn’t even consider the fact that I’ve had a stroke. That’s how bizarre it is. It’s like ‘Are you like, the same person? Are we different people? Who is it that is saying those things? It’s so weird that person doesn’t even consider the person who had a stroke at all like, you know, I, that version of me treats myself worse than the the people who don’t know I’ve had a stroke, and you know, you don’t look like you’ve had a stroke, therefore you need to respond appropriately.
Bill Gasiamis 41:27
That’s the same treatment that I do to myself when I’m in that headspace. It’s so weird, and it’s like, how do you a do that to yourself? And then also be the same, be living in the same body and still have the ability to take that tone like it’s terrible, but it’s so weird. I try to observe myself going down that path so that I can stop that voice. But it’s such a strong voice.
Helen Van Hooft 41:59
It is, and I think you know people you don’t look like you’ve had a stroke. Okay, tell me what a person that’s had a stroke should look like. Because I remember I told somebody to get out of my house. I think it was probably come that two years ago, because they were supposed to come to our house to assess they came to assess me in order to give us some help and support, because I needed it. I needed my husband works full time. We have three children, well, adult child and two children living here.
Helen Van Hooft 43:04
My adult child is now moved out subsequently, but at the time, you know, working full time, and I would have appreciated some help with the chores and whatnot, you know, and not driving and so we wanted to investigate if that was possible. And so in this person comes, and I could just tell, because of obviously, how I made sensitivity, and this that, and the other, I can get, you know, a bit of a sense of people. And she looked at me, because I’m walking, I can use all of my limbs because I worked hard on my physio and and I have that sort of strength.
Helen Van Hooft 43:59
I’m grateful to to that, and she sort of looks at me, and obviously my face isn’t drooped or anything like that, and I can talk and Mama, and she was asking me these questions, and she she was so judgmental. She said ‘Well, you don’t look like you’ve had a stroke. I said ‘Well, what should I look like? You look too well. I said ‘I have had a stroke, but you’re young? Yes, I was 48 when I had a stroke. Oh, I’ve never heard of this drug, I’ve told you it’s very about lower.
Helen Van Hooft 44:50
And in the end, I said ‘Well, you can leave what I said, you have come here. You are so judgmental, I said ‘You can leave. Well, you’re too well, you don’t need any help. I said ‘I do. I’ve asked for help. I can’t do this, I can’t manage my home, my husband works, you don’t look like somebody, get out you. I said ‘You have no medical training, you are not you don’t know my medical history. You’ve looked at me, you’ve judged me, I don’t need to explain myself to.
Bill Gasiamis 45:42
Yeah, part of it can be excused when that person comes in like that. I mean, it’s complete ignorance, and usually it’s from lack of experience that ignorance. And then there’s other factors, lack of training and all that kind of stuff, and then there’s like, perhaps her job was it an assessment to not supply the help, or was it assessment to supply the help? Like ‘why were they assessing you?
Helen Van Hooft 46:08
Yeah, we had to ask to see if I could perhaps have, like a taxi, because obviously I can’t drive to help me get to a supermarket in the local area, and for a cleaner to come in to help me clean my house. You know, some domestic help I just to maintain some standard within my home, and because she looked at me, and because I can use my arm and my leg, and she said ‘Yeah, I was not somebody that presents classically as a stroke.
Bill Gasiamis 47:15
Yeah, it’s a big problem.
Helen Van Hooft 47:18
And because she’d never heard of the stroke. My brain nurse was sat with me and I was like ‘But if I hadn’t have had a stroke, would she be sat with me? And basically she just didn’t, she didn’t, like certain aspects of it, and the fact that I was able to sort of advocate for myself.
Bill Gasiamis 47:54
Your career would have people not getting you misunderstanding you anyway, normally wouldn’t, they like the general run of the mill, person who doesn’t hire the services of a medium, or who’s not kind of into that world? Would Is it similar the misunderstanding that people have with you, and am I like imagining that misunderstanding is accurate, like, because I kind of sort of see that world that you kind of, you know, like work in as a little bit misunderstood kind of space from the general public. Have I caught something there that’s accurate, or am I just imagining it?
Helen Van Hooft 48:42
I think so. I think if you know if that’s not the circle or the thing people say that they’re into, then I think people have this stereotypical view that mediums can be a bit wild and wacky and a bit out there, and for me, it’s a way of life. I’m a spiritualist, it is my religion, and for me, being a spiritualist is not so much about talking to the dead and communicating to those that have died, It is about living well and helping others to live well and appreciate that we are all. We are all worthy of a good life, and that we are all connected to one another, and that.
Helen Van Hooft 50:00
Should all treat each other, and this beautiful earth that we live on, well, that, to me, is spiritualism and religion, And spiritualism, the fact that, you know, I get a sense of people. I’ve always had that sensitivity about me, and when I started to develop that ability, it strengthened me, it enabled me to understand myself more, and yeah, it brought aspects of myself to the fore that just settled me into myself, and I’m grateful for that and that enabled me, then to understand others and give me a greater empathy for them.
Helen Van Hooft 51:10
And that I’m grateful for the fact that I have an ability that means I can help others or connect to others that are deceased. Just means that I would never force that onto anybody, unless I am they have given me permission to unless I am working on a platform, or they have come to me in a professional manner. I do not advocate or agree with these programs that you see out there where people are accosting people?
Bill Gasiamis 52:05
No, I it’s not where I was going, what I was going, what, where I think you nailed it. You said that you’re comfortable within yourself. You’ve been able to sort of fall into that space as you’ve got to know yourself and understand yourself and your the way that you experience things and people around you, etc, and that seems to be also helping you dealing with this version of misunderstanding that’s happening because you don’t look like you’ve had a stroke, etc.
Bill Gasiamis 52:36
Are those skills transferable in that you know yourself, you know who you are.
Helen Van Hooft 52:41
Yeah.
Bill Gasiamis 52:42
You’re making assumptions, you’re making judgments about me. And what does a stroke survivor look like to you? Like, what’s, what does that even mean? And you have kind of, I suppose you have more of a insight as to how to handle people with kind of screwy faces.
Helen Van Hooft 53:06
Yeah, and I just think that says more about them than it does me. And there’s a book that I read many years ago, and it was a friend of mine that introduced it to me or suggested it to me, and it’s called ‘The Four Agreements by Don McGraw Riez. And I read it, don’t know how many years ago, about 15 years ago, and it was a life changer, and these four agreements were something that I adopted.
Helen Van Hooft 53:45
But it was something that I adopted then, and one of them is ‘Do not assume. So, you know, if you assume anything about anybody then there comes a period at some point that you have to then do the work to unassume everything that you’ve assumed about them, and that takes a lot of effort.
Bill Gasiamis 54:16
Tell me about that. Why does that point come? Why do you have to get to that point where you eventually you have to unas stream everything.
Helen Van Hooft 54:23
Because, it’s easier, instead of assuming something ask. So instead of my, you know, like the other day, my husband said something like ‘Oh, yeah, well, I bet, they did this. I said ‘You don’t know that. He went ‘Well, I bet. I said ‘You don’t know that. That’s what they’re thinking. Well, I said ‘You don’t though, do you? He went ‘No. I said ‘So, when you go to work tomorrow and you ask them, and you’re wrong, how are you going to feel?
Helen Van Hooft 55:09
All of it’s stupid, I said, So, all of this assumption and getting fired up that they’ve done X, Y, Z, and all of this feeling, ill feeling potentially, you’re going to have to unwind that. So instead of just leaving it right now and not feeling anything, you’ve got a whole load of more work to do tomorrow after you’ve asked them. So instead of just leaving it empty, that’s what I mean by assumption. So, in this book, where it says ‘Do not assume, ask questions, speak to people in the first place. So if you don’t know, don’t assume that you know.
Helen Van Hooft 56:00
Don’t jump to an assumption about anybody or a situation, don’t overthink stuff, don’t because when you actually begin to know the truth, you have to then pick everything that you felt or think that you know, or there’s so much other work that you have to do because you have formulated your own thoughts or own conclusion which could be actually wrong, and you could have saved yourself all of that work in the first place by asking a question.
Bill Gasiamis 56:40
Yeah, and the energy and the all of it high blood pressure and the elevated heart rate and all of that stuff, and the anger and the concern, whatever, it’s a profound statement. You know that we don’t realize we’re doing it a lot of the time. People just go down their path, and that’s the thing about people who we come across, who don’t know what stroke looks like, or are ignorant to stroke.
Bill Gasiamis 57:13
They come across, they make an assumption, they get shocked, they don’t know how to respond, and often it just had happens where it’s a little bit uncomfortable, etc, especially if you’re somebody like me, who, when somebody makes an assumption about the way I look or am or whatever, they hear it in a nice way, they get told, and then when they get told, the back pedaling might begin, and those types of stuff, I try not to bring them to that stage, but I don’t shy away from saying to somebody.
Bill Gasiamis 57:51
Well, I don’t know how might you have felt if you had three brain surgeries. You had one brain surgery, three strokes, you couldn’t walk. You had to learn how to walk again every day your left side hurts. But that’s the real thing with me. It’s like my pain is ongoing, and it’s every day, and my deficits on my left side, and that’s the biggest challenge, is like, I go to work and I’m wiped out by sometimes 10 o’clock, and then I’ve gotta still get through that day, and I’ve gotta bring the guys along with me for the ride.
Bill Gasiamis 58:27
And I don’t need them to be seeing me and thinking this guy’s not doing enough, you know. So there’s a little bit of, a lot of explanation to people, put people at ease that, you know, I am pulling my way. I am doing my bit in my own way, the way that I can do. And it’s just, it’s me getting comfortable with just being able to, if I have the opportunity to set the scene, so that once I’ve set the scene, the expectations of the other person are managed, and then once they’re managed.
Bill Gasiamis 58:27
Then it’s an easier conversation on a regular basis, rather than assumptions being made by that other person just through ignorance. It’s the situations where people, where I don’t have that opportunity to let do the groundwork and set the expectations, where people often kind of get caught out by somebody that looks like me saying ‘Hey, no, I’m not well today, you know, and I can’t do what you’re asking. And then trying to get them over the line.
Adapting to Life Post-Migrainous Stroke
Helen Van Hooft 59:45
Why do you I have a question, why do you feel that you are responsible for getting them over the line?
Bill Gasiamis 59:57
So you might not be right or wrong. I don’t know what the answer is to whether it’s right or wrong. However I feel that way, because it seems like it allows me to do less work later, and the way I feel later gets the the negative, the negative side of how I feel later in that assumption like game is decreased, and I feel like I’ve made it easier for the person who’s ignorant a little bit as well later, so that they don’t feel a little bit like not attacked, but like they don’t feel like I’m judging them or something like that. Do you know what I mean? So, I just try and diffuse it.
Bill Gasiamis 1:00:49
I suppose that whole thing that might happen later, you are not responsible for how I know, I know I’m not. It’s just the process that I go through. It’s just sort of, it’s got a lot to do with my upbringing, and it’s got a lot to do with the way I go about my work, and the expectation that when I go to work and I have to deliver an outcome that I need to get paid for it, part of it is setting the expectation how I’m going to deliver that outcome, because people’s idea of how you deliver.
Bill Gasiamis 1:01:23
Especially in my field, like with property maintenance and repairs and painting and all that kind of stuff. There’s a lot of shows now on TV that show in half an hour and a half an hour episode, the guys paint their entire house and bang, and there you go, and anyone can do it, and somebody who’s never picked up a brush before for and they get, you know, the highest rank, and they win a prize, and all that kind of stuff there’s that has impacted our business, because we have to re educate people on how things are done.
Bill Gasiamis 1:01:58
And I’ve gotta do that with my deficits as well doing it before, I could push harder, and I could go through barriers, and we could do extra hours, and we could work Saturdays and Sundays. They’re all off limits now, so there’s strict rules as to how I work, and if I don’t lay those ground rules out. That also includes my stroke sometimes, then I annoy the client, and then that impacts the way that we get paid, the smoothness of the job, etc. So part of that has kind of infiltrated my personal life, because that’s what I do most of the day. And I’ve been doing for 20 years.
Bill Gasiamis 1:02:45
So I come home like the dumb things also that I do because of my work is I’ve come home and I see imperfections in the wall or in the door, in the door and all these weird place and I go to people’s houses and I notice them as well. I don’t say it, but that work has infiltrated my personal life. As much as I try to distance myself from it, I end up going back to that work every day.
Bill Gasiamis 1:03:18
So, you know, it’s a bit of a task, and I’m not perfect as well, like I’m a podcast and I’m presenting the recovery after stroke podcast, but I’m a human and I struggle with the same things other people struggle with. I try and talk about it as much as relevant to each episode. But you know, I’m far from the the standard.
Helen Van Hooft 1:03:43
But we we’re all human, so we’re all in imperfect. That’s what we’re here for. That’s the the experience, the human experience.
Bill Gasiamis 1:03:58
I kind of don’t mind it. It’s I want to make sure that I’m clear that I don’t mind it, but I’m intrigued by and when it happens, I try to observe myself in certain situations that are weird, uncomfortable, difficult, and it’s like that guy before, I like to observe that guy treating my myself in that way, and pretending that you’ve had setbacks and you haven’t achieved your goals, and forgetting that you didn’t have that you’ve had a stroke or two. And you know, I try and play that role as well, like I don’t just I do my best not to sit in the space where it’s impacting me negatively.
Bill Gasiamis 1:04:44
I’m a problem solver by nature, so I love to. I’d love to notice where things can be improved, and always seek improvement for my own benefit, so that your life is easier and I’m more resilient. I’m, you know, going after resilience and adaptiveness, and I’m also trying to become more respondent, and also sometimes unrespondent, you know, when necessary.
Helen Van Hooft 1:05:18
Sure, that’s really important, you know.
Bill Gasiamis 1:05:22
And as a hot blooded Greek background, younger brother of an older brother, not responding is such a tool that I need to learn and master.
Helen Van Hooft 1:05:39
Just because you’re even fighting to a fight doesn’t mean that you have to go.
Bill Gasiamis 1:05:45
That’s right, yeah, I’ve never shied away from any kind of confrontation. I’ve spoken about it with my wife recently, you know, I don’t mind confrontation. She dislikes confrontation. So we kind of, you know, that’s where we get stuck, unstuck sometimes.
Helen Van Hooft 1:06:03
And to one of those doesn’t like confrontation, doesn’t do well with it.
Bill Gasiamis 1:06:14
I just don’t take it personally. I don’t take confrontation personally, whereas my wife and other people I come across might, and I’m sometimes not even being confrontational. I might just be like, very playful, passionate, talkative, loud, whatever. And I get the ‘Why are you yelling? Oh my god, I’m not yelling. I haven’t even started yelling yet. I’m just talking, you know, my hands are going everywhere, and it’s a sight.
Helen Van Hooft 1:06:50
It’s that Greek blood in you.
Bill Gasiamis 1:06:53
Man is and, you know, in my home where I grew up, my dad and my brother, and on my dad’s side of the family, they’re all loud and big and tall and huge and they and that’s just normal. You go into that house and when everyone was around you, just it was loud, the decibels were through the roof.
Helen Van Hooft 1:07:18
Now that would have been no good for my glass head at all.
Bill Gasiamis 1:07:22
Yeah and it’s not good for me now, but I thought I understand, you know, the version of conversation that looks crazy to an outsider who is gentle, non confrontational, listens more than talks. I get it. So, I have my identity is full of my work guy and I, and my identity has expanded since the strokes and all that stuff and evolved. But there’s definitely a lot of that guy that trying to please other people for money, guy that infiltrates my daily interactions sometimes.
Helen Van Hooft 1:08:18
I think it’s tricky when because stroke changes everything and you have to adapt, and not for me personally, allow for it to be everything, that it’s part of of you, but not everything. And for me, it’s like when I had children and ‘Oh, you’re so and so’s mum? No, I’m Helen. It’s, I love being a mum. I have four children, wow, two adults now. And, but it’s not the be all in it, and the end all, there’s so many aspects to all of us as humans. And I think when we grab it one thing to shape our whole identity, we miss out on it, on everything else.
Bill Gasiamis 1:09:36
And it’s so hard later when you’re challenged by stroke, and your identity gets knocked about, and then you’re doing the whole I can’t be a mum anymore, or I can’t pick up the kids from school, and I can’t do that. And it’s like ‘Oh my gosh, that’s one of the things that didn’t catch me off guard, which was great. My identity was is kind of broad enough and flexible enough so that I was still able to be a dad without picking them up from school.
Bill Gasiamis 1:10:06
I was still able to be a dad without taking them fishing and all that kind of stuff. I missed out on fishing, and they would have been lovely to go but I didn’t stop being a dad. I just changed the way I was being a dad.
Helen Van Hooft 1:10:22
Eating it out, finding, cultivating a new pathway for yourself within the challenges that you face. I think that’s really important Bill, you’re absolutely right.
Bill Gasiamis 1:10:36
And then there’s, in my book, there’s a chapter where I talked about the I compared it to the being an empty nester. My boys have both moved out now, and it happened probably, you know, 10 years after the first incident, and they were old enough to move out, so we were kind of getting in each other’s space, where we were living. So it was good, but I missed them.
Bill Gasiamis 1:11:08
I had, like, separation anxiety and all that kind of stuff. But there’s also that empty desk, which is the person who has a job, and they all their friends or their connections, or the people they associate with are all related to their work, and then they either have to retire, or for health reasons, have to stop working or they lose their job. And their identity cops are real, a real knock, and then it’s like, who, if I’m not the guy that goes to work and doesn’t deal in all that space.
Bill Gasiamis 1:11:49
And I haven’t had a hobby, and I haven’t had a gym, or I haven’t had this, I haven’t had like, then who am I? What do I do? How do I interact with the world, and what am I going to talk to everyone else about that doesn’t work in that space or live in that space?
Helen Van Hooft 1:12:05
Yeah, I talked about it last night, I was working on, I have a spiritual community, and we were online last night. I talked about that in our philosophy about going little, sometimes there’s a need to go small and and then going small sometimes you can find aspects of yourself that you didn’t know that was there, and when you go small, because I think society nowadays is demanding us to be big all the time, go large or go home, you know. And but I believe that sometimes when life, or you allow yourself, you have the courage to fall and go small.
Helen Van Hooft 1:13:10
That there’s such a beauty in that, because you allow yourself, like I said, to find aspects of yourself that you didn’t know that was there, because I’ve always been very fiercely independent from a very young age, and obviously the stroke taught me other things about allowing other people to do things for me, not only medical stuff, but my husband had to be my carer for a long time. Every aspect of my well, not every but you know how helping me shower, helping me dress, you know, I had to feed me because I couldn’t even cut my food.
Helen Van Hooft 1:14:04
I remember the first meal after the the stroke, I could see that it was food. I knew it was food, but I couldn’t feed myself, but didn’t even know how to cut my food, you know, I didn’t know what a knife and fork was for. The memory came back when I saw him do it, but I didn’t have the dexterity or the physical strength to do it, you know, I couldn’t brush my teeth. I couldn’t so people had to do it for me. So in doing, allow having to have people do that for me, talk me at things about myself, humbleness, humility.
Helen Van Hooft 1:15:00
But then having my life so little and only being able to do a small amount of things, because you just don’t have that brain energy. You can’t, you know, and if, when people are talking around you, you can’t, you literally can’t compute, and it hurts your brain in the end, people were like ‘Okay to go outside, because you’re like, cool way. So, you know, you learn stuff about yourself constantly.
Helen Van Hooft 1:15:46
The other thing even before that, you know, were you talking about in your own life? You know, being an expat, when I moved from England to the Netherlands, my life became small and little, because my friend group, my work group, my dad did it, all of that. So my life became small. Then you know, so it in you learn things about adaptability, resilience and but in doing things like that, when life becomes small and little, and allow in allowing things like that for other people to show themselves, they grow, and you see them in different ways.
Helen Van Hooft 1:16:47
And I think there’s beauty in that you see yourself in a different way, but you see others in a different way, and you all grow in different ways in that moment, and I think that’s there’s beauty in that.
Bill Gasiamis 1:17:08
Yeah, indeed, what’s the hardest thing about stroke?
Helen Van Hooft 1:17:16
For me, the loss of the independence, to drive, because that was the big thing, and it still is, because it’s limited me, I believe, of being able to get up and do things, and I see how that’s impacted on my husband, because we don’t have a support of a friend net, a big friend network or family, it is just us. So that is, I think, the hardest thing, not being that independent, being able to get in the car go do my grocery shopping.
Helen Van Hooft 1:18:17
Because I loathe the online shopping you know, where they substitute stuff? I don’t want that. I want to be able to choose, and just to be able to take for granted, to be able to go into a noisy place and not be so and not be affected by the noise, the lights and people and people, because everything has to be considered.
Bill Gasiamis 1:18:58
Yeah, that is now. That can be a hard one for sure, I went through that as well, the inability to attend sports events and concerts and all that kind of stuff, and being asked to and not being able to say yes, because I didn’t want to be in those environments for two or three hours at a time, and then probably not going to be fun if I’m there for the other people. So it’s better to just, it was better to stay home.
Helen Van Hooft 1:19:31
Yeah, not, you know, to go sort of to a marquee and, you know, if there’s a disco and this, that and the other that. I can’t contemplate to do that, and even to a restaurant or whatever, that’s a big consideration. What’s that going to be like? What’s the music level going to be like? How many people could be there? A likelihood is, you know, probably about an hour tops. That’s with my special ear loops, my special glasses.
Bill Gasiamis 1:20:13
You know, one of the things I do want to go to a restaurant now is I look up to see if they’ve got acoustic tiles, if they’ve what, if they have a good acoustic setup. That’s another weird thing that I do is I go and check out restaurants and see and if we go one time and they haven’t got a good cruise set up, and the noise is bouncing everywhere, and it drives me bonkers, then I never go back to that restaurant again. We won’t go back.
Bill Gasiamis 1:20:39
So it happens so often, and it’s strange how people don’t take that into consideration just for a nicer atmosphere for their guests. That’s all not even for people who might have noise sensitivity issues, just a regular kind of nice environment for a restaurant, I feel like they need to take more consideration of the acoustics anyway.
Helen Van Hooft 1:21:09
Yeah, I think you know that is there’s always I think in life now, there’s always sort of a trade off. I’m very part of me feels a bit like a an imposter in the in the stroke community, if you like, because I’m very aware that I’m walking, I’m moving. I like to say ‘Yeah, I’m very vain in my face it’s fine, and this and this, and that. But if you put me in a loud environment and whatever I can’t be, I won’t last long, you know. So I know that I’ve had a stroke in this setting. Life is very different, but I am, you know, I can like you. You’ve said, life is very different.
Helen Van Hooft 1:22:16
You have to manage your day, you can do this. You have to be very considered, I’m aware that I can work a full day in my work. I can do a long shift, like yesterday, I worked a long day. I worked a long day on Tuesday, I can do it in my line of work. And I love my work, and I’m very fortunate that I can do it, It’s not been affected. So there are, six of one, half a dozen of the other. And may there’s hope with my neurologist that as I come the other side of the menopause, that may be status megrinosis, goes that I will no longer have this horrible constant migraine every day.
Helen Van Hooft 1:22:21
There’s hope for that we don’t know. So it might get better, but like I said to her ‘If it doesn’t, it doesn’t, I don’t whatever. I’m here, I’m alive, I’m living, I’m doing stuff, I’m whatever. And she’s like ‘Well, don’t you want that?
Bill Gasiamis 1:23:48
You’ll take the win.
Helen Van Hooft 1:23:49
Yeah, I’ll take the win.
Bill Gasiamis 1:23:52
Yeah, what has stroke taught you?
Reflections on Resilience and Spiritual Growth
Helen Van Hooft 1:23:57
So much. I was, I’m always, I’d like to think a positive person. I have my down days. I have, I’m like, we’ve said humor, but I don’t unpack, don’t stay there. I’ve stroke has taught me just how resilient I am. The fact stroke has taught me just how common it is, how you shouldn’t look at somebody and say ‘Oh, they not had a stroke, because they don’t present with the droopy face, with the lint, with the did the because that’s not true.
Helen Van Hooft 1:25:00
That we should all be good to one another, because life changes in an instant. So with people that you love, just tell them exactly how you feel all of the time, and don’t think, don’t assume that you’ve got tomorrow, because that’s not necessarily a given.
Bill Gasiamis 1:25:41
That is very true. What do you want to tell other people who are listening, who are on a similar journey?
Helen Van Hooft 1:25:55
Live well, live life according to what feels good and authentic to you. Don’t allow others to tell you what is right and proper for you. Live according to what feels authentic to you, because people mean well, and they think that they are telling you or that is true for you, but ultimately, you are the one that is the barometer of what feels the best for you. And if you are unsure of what that is, then take a moment, because there’s a Hellenism that I always have, that is, if you are unsure of what it is that you want to do, then do nothing.
Helen Van Hooft 1:27:09
Just pause, breathe, sit with it, and then allow for that, just that silence within you to guide you, because that will eventually tell you where it is that you want to go, because nobody should have autonomy over you. You are the one that knows best.
Bill Gasiamis 1:27:38
And on that note, thank you so much for joining us on the podcast.
Helen Van Hooft 1:27:41
It’s been a pleasure. I’m so pleased to finally met you, Bill. Keep up the good work and be kind to yourself.
Bill Gasiamis 1:27:51
Well, that is a wrap of this incredible episode with Helen Van Hooft, her journey through my grain of stroke and her insights as a spiritualist, remind us of the power of resilience, adaptability and the importance of living authentically, even in the face of profound challenges. Before we go, I want to thank you all for being a part of Recovery After Stroke Community, your comments, support and feedback mean the world to me, and they help us connect with more stroke survivors and caregivers worldwide.
Bill Gasiamis 1:28:27
If this episode resonated with you, please consider leaving a five-star review on Spotify. We are at about 47 at the moment, I’d love to get it to above 50. Also consider leaving a review on iTunes, if that’s where you listen to your podcasts, or hit the like and subscribe button on YouTube. Your support helps others find the podcast and join our grand community for more resources, remember to visit recoveryafterstroke.com. Thank you for tuning in, and I’ll see you in the next episode.
Intro 1:29:01
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The post Facing a Migrainous Stroke: Helen van Hooft’s Story of Resilience and Recovery appeared first on Recovery After Stroke.
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What Is a Migrainous Stroke? Recognizing and Managing This Rare Condition
Migrainous stroke, also known as migraine-induced stroke or migraine infarction, is a rare and serious complication of migraines, particularly migraines with aura. While most migraines do not lead to a stroke, understanding the risks, symptoms, and treatment options is crucial for stroke survivors and caregivers.
What Is a Migrainous Stroke?
A migrainous stroke occurs when a migraine, typically one with aura, triggers an ischemic stroke—a disruption of blood flow to the brain. This condition is uncommon but can have lasting effects if not treated promptly. Migrainous strokes are more likely to occur in younger individuals under 45 years old and are often linked to specific risk factors, including hormonal influences and genetic predispositions.
Who Is at Risk?
While migrainous strokes are rare, certain factors can increase the risk, including:
- Migraines with aura: These migraines involve visual or sensory disturbances before the headache phase.
- Female gender and age under 45: Women are more prone to migraines with aura, particularly during hormone fluctuations.
- Smoking and oral contraceptive use: These can increase stroke risk in women with migraines.
- Underlying health conditions: Conditions like hypertension or a patent foramen ovale (PFO) can elevate risk.
Symptoms of a Migrainous Stroke
The symptoms of a migrainous stroke can overlap with those of a severe migraine or an ischemic stroke, making it important to seek medical attention if symptoms persist or worsen. Key signs include:
- Sudden and severe headache, often unlike typical migraines.
- Neurological deficits: Weakness or numbness, typically on one side of the body.
- Vision disturbances: Loss of vision, blind spots, or trouble seeing on one side.
- Difficulty speaking: Slurred speech or trouble understanding language.
- Loss of coordination: Trouble walking or maintaining balance.
Note: Unlike migraine aura symptoms, which are temporary, stroke symptoms persist and can result in long-term deficits.
How Is It Diagnosed?
Diagnosing a migrainous stroke involves thorough medical evaluation, including:
- Neuroimaging: MRI or CT scans to detect brain ischemia or infarction.
- Medical history: Details about migraine patterns and aura symptoms.
- Exclusion of other causes: Ruling out conditions like blood clots or other types of stroke.
Treatment Options
The treatment for a migrainous stroke includes managing the immediate stroke symptoms and addressing underlying migraine triggers. Common approaches include:
- Acute Stroke Treatment:
- Thrombolytic therapy: Used in ischemic strokes to dissolve clots if identified early.
- Oxygen therapy or medications to manage pain and stabilize neurological symptoms.
- Preventive Care for Migraines:
- Medication: Beta-blockers, anticonvulsants, or CGRP inhibitors to reduce migraine frequency and severity.
- Lifestyle adjustments: Managing stress, maintaining hydration, and avoiding known migraine triggers (e.g., specific foods or environmental factors).
- Stroke Recovery and Rehabilitation:
- Physical therapy: To regain strength and coordination.
- Occupational therapy: To adapt to challenges in daily life.
- Speech therapy: If language or swallowing difficulties occur.
Actionable Steps for Stroke Survivors and Caregivers
- Recognize early warning signs: Any persistent neurological symptoms during or after a migraine should be treated as a potential emergency.
- Act fast: If stroke symptoms are present, call emergency services immediately. Timely intervention can prevent long-term damage.
- Seek specialized care: Work with neurologists and stroke specialists to create a personalized treatment plan.
- Monitor migraine patterns: Keep a headache diary to identify triggers and warning signs of complications.
- Adopt preventive strategies: Regular exercise, stress management, and a healthy diet can help reduce the risk of stroke.
Living with a Migrainous Stroke
Survivors of migrainous stroke often face challenges like visual impairments, sensitivity to light or noise, and fatigue. Support from caregivers and a strong rehabilitation plan can make a significant difference in recovery. Remember, every stroke journey is unique, and progress takes time.
Migrainous strokes remind us of the importance of acting quickly and staying vigilant when it comes to migraine symptoms. Whether you’re a stroke survivor or a caregiver, understanding this condition empowers you to make informed decisions and take steps toward a healthier future.
If you’ve experienced migraines with aura or suspect a migrainous stroke, consult a healthcare provider immediately. Early detection and treatment are key to better outcomes.
Living with a Migrainous Stroke: Helen van Hooft’s Inspiring Journey
Discover Helen van Hooft’s story of resilience after a migrainous stroke, offering hope and inspiration to stroke survivors everywhere.
Highlights:
00:00 Helen’s Initial Migrainous Stroke Symptoms and Hospital Visit
07:16 Emergency Room and Initial Diagnosis
14:20 Migrainous Stroke Diagnosis and Hospital Admission
26:30 Impact of Stroke on Daily Life
35:07 Adapting to New Normal
59:45 Adapting to Life Post-Stroke
1:23:57 Reflections on Resilience and Spiritual Growth
Transcript:
Helen’s Initial Migrainous Stroke Symptoms and Hospital Visit
Bill Gasiamis 0:00
Hello everyone, welcome to another episode of the Recovery After Stroke podcast. If you’re looking for a guide to navigating life after stroke, check out my book ‘The unexpected way that a stroke became the best thing that happened. It’s filled with practical strategies, inspiring stories and insights that can help you on your recovery journey, you can find it on Amazon or at recoveryafterstroke.com/book. Today, we’re diving into an incredible and deeply inspiring story with Helen Van Hooft, my grayness stroke survivor and spiritualist.
Bill Gasiamis 0:38
Helen’s journey through a rare and challenging condition has shaped her perspective on life, resilience and the importance of living authentically. Helen’s experience as a spiritualist adds a unique layer to her story, offering insights into how connection, introspection and self discovery have played a role in her recovery. Whether you’re a stroke survivor, caregiver or someone seeking inspiration, this episode is sure to resonate deeply. So let’s jump in and hear from Helen Van Hooft. Helen Van Hooft, welcome to the podcast.
Helen Van Hooft 1:16
Thank you for having me, it’s nice to meet you.
Bill Gasiamis 1:18
Nice to meet you too. Tell me a little bit about what happened to you.
Helen Van Hooft 1:24
Well, it was a bit of a lead up on the 29th of April, I started to to have a massive migraine, I was working, and in the middle, well, coming to the end of what I was doing, and I had a massive pain go at the back of my head, and I sort of came downstairs because it was pandemic, and I came downstairs, my husband took a look at me, and something wasn’t right. It was say in inverted commas, usual for me to have a migraine at a certain time of the month and I had that, but it didn’t really go away.
Helen Van Hooft 2:25
And I tried to power through, I guess, and I said to him it’s sort of ramped up. So it was my, again, usual pattern of behavior to have a shower and take himself to bed and then he wouldn’t normally see me for, I would say, about 12 hours, I’d sleep it off. This time within, I’d say, I don’t know, an hour or so, I came back down, I was agitated, I was pacing, I was in a lot of pain. And he looked at me, he said ‘Something’s not right. I said ‘No, I know something’s not right, pain. And I was sort of clenching my hands.
Helen Van Hooft 3:20
I was pacing my feet, my toes were curling, and he just took a look at me, I just couldn’t settle. So he phoned, sort of the Dutch equivalent of like, their help lines or medical helpline, and they were talking, can’t really remember too much, describe my symptoms and asked what the pain was. Now, I’ve had four children so I can tolerate pain, and I was in it was ramping up, and it was going quickly, and I said ‘It’s about eight. She was like ‘That’s not good. So she was like ‘She vomited. And he was like ‘No. And right on cue.
Helen Van Hooft 4:24
I was sick, so she was like ‘Get to the hospital now I don’t like her symptoms.Just by sheer thought, I said ‘I think we’d better take a bucket with us. And lucky enough that getting me in the car, he had to help me into the car, get me into the car, just the movement of that car as we had to go up a slipway onto the main road. Well, you can imagine what happened in that car, and we were very thankful that I had bought the bucket and we arrived, he just sort of my husband. My children have always teased him that he’s a bit of a granddad driver.
Helen Van Hooft 5:22
And that day, I think he wasn’t. And we arrived, and I was very dramatic as I arrived in the accident and emergency department, because I collapsed as soon as I arrived in the accident and emergency. I can’t remember too much, but they sort of obviously bundled me up, because, as I said, it was pandemic, they sort of bundled me up. And what I can recollect was a nurse was trying to put a mask on me, and I got very agitated, because I have a very sensitive sense of smell, and I can clearly recall the sense the smell of vomit.
Helen Van Hooft 6:15
And so I was ripping this mask off, and I can remember, I don’t know whether it was a doctor or nurse, just saying in Dutch ‘Just leave it, because that was getting on my nerves. By the time I came back round, I had all manner of examinations, including CT scans and I think, I don’t know if it was MRI anyway, I can’t remember, but there was no tumors or bleeds or anything into my brain, so I had completely gone. And I’d had a near death experience, and all sorts of stuff had happened, but it was still not clear what was happening, other than when I’d come back round.
Emergency Room and Initial Migrainous Stroke Diagnosis
Helen Van Hooft 7:16
It was saying ‘Can you describe the level of your pain? And I said ‘Well, put it this way, if I had a knife, I would be driving it into my head right now, and she’d be like ‘Ah, okay. And the panic in the room it was still not clear at this point what was going on, no stroke of being diagnosed or whatever. And they kept me in overnight, and by the afternoon, then that the next day, everything was quiet, there was nothing going on. I was completely calm, clear, and they said ‘We can’t do anything. Nothing is showing nothing, it was like nothing at all. It happened.
Helen Van Hooft 8:08
So the only thing that they could do was send me home. It was completely bizarre. So off I go home, though I was scared, my husband was scared because it was lit so frightening, and they sent me home with painkillers. You know, instructions, obviously clear instructions, if this happens again, this is what you do. You don’t mess around, because this is completely unknown, you know, they’d kept me on oxygen to preserve my brain. You know, they were very, very cautious, the level of care was unbelievable, and they were just completely flummoxed.
Helen Van Hooft 9:01
And within 20 minutes of being home, happened again. Didn’t know, and my husband straight on the phone. So they and obviously he was scared, and all they could do say, you know, give her the tablets, knock her out and see what happens. So that’s what we did, and I’m out for the count.
Bill Gasiamis 9:34
And that’s just to get the pain managed and to get you through that part.
Helen Van Hooft 9:40
Yeah, and to because there’s nothing, at this point, they don’t understand what is happening, they’re questioning whether it’s these hideous if anybody listening has them, what they call cluster migraines, where they come.
Bill Gasiamis 10:03
Let’s take a quick break here, before we continue with Helen’s powerful journey and her reflections on resilience and spiritual growth. I want to remind you about resources that can help you in your own recovery journey. Firstly, my book ‘The unexpected way that a stroke became the best thing that happened. Is packed with insights, practical strategies and inspiring stories on post stroke growth.
Bill Gasiamis 10:29
It’s available on Amazon and at recoveryafterstroke.com/book. Second, if you’re looking for a more guided support, check out the courses available at recoveryafterstroke.com/learn. These narrated video lessons are created by a stroke survivor for stroke survivors, designed to help you take actionable steps in your recovery. Now, let’s get back to the interview.
Helen Van Hooft 10:55
And they come with such a ferocity that it is this, you just feel like your head is going to explode and you I’m not a dramatic woman. Yes, I have some dramatic flair, of course, but I’m not somebody that’s going to scream and be hysterical or anything like this, but this pain in my head, my goodness me. It was just I could have, literally, like I say, stabbed my head, I could have just thrown myself off a cliff, it was just unbelievably unbearable. I couldn’t and they could see how my hands, my feet, I my legs. I was just agitated all the time, I just couldn’t do anything.
Helen Van Hooft 11:55
And I would hold on to my husband, and I would just squeeze so they were and what they do with cluster migraines is they put you on oxygen. And what they have learned in the medical profession that to give you oxygen once you’re having a cluster migraine is that the cluster migraine responds to oxygen after about 20 minutes, it wasn’t responding. So what they could then counter, what they could realize that it wasn’t cluster migraines, but to keep me on oxygen was to preserve my brain, because they had no real knowledge of what was happening.
Helen Van Hooft 12:50
So this pattern started to repeat for 10 days and what then, because of, I guess, pain and whatever, I started to collapse. So paramedics then would be called to my house because I would collapse, and obviously that’s not good. The paramedics came gave me fentanyl to relieve me of pain. And because then I would respond, the pain would go and I would come out and be sort of compos mentis, and they were like ‘We don’t know this is and it’s this pattern.
Helen Van Hooft 13:42
In the end, I got I like, I just could feel within my body, and my husband was like ‘This is not good. And I could have this sense within m, I just felt like I was on this steam train heading towards something not good, and I just felt like nobody was they were listening, but not. Do you know what I mean?
Bill Gasiamis 14:15
Yeah, they were hearing you, but they weren’t getting the message.
Migrainous Stroke Diagnosis and Hospital Admission
Helen Van Hooft 14:20
They were, yeah, hearing me, but not really listening, it’s like, something’s going to happen. Because this isn’t right, it’s not responding but and it’s not going away, and I can’t live my life in bed, you know?
Bill Gasiamis 14:42
And in the end, it was diagnosed. This is, hopefully you can help here, this is the weird part is diagnosed as a migraine, migraines stroke, which when I look at on Google, it says, migraine stroke, also known as a migraines infarction or migraine induced stroke, and it is an uncommon complication of migraine, identified by ischemic stroke on neuroimaging that corresponds to prolonged aura symptoms in a patient with migraine. So in the end, they have identified it, they have given you that particular diagnosis. How long did it take for them to get there?
Helen Van Hooft 15:34
Well, as I said, this pattern continued for 10 days, and it was horrendous. I know, I remember one day my eldest son came home to just to see me and gave me a hug. And in that hug, it instantly happened like it just, it would come on like a sledge hammer hitting my head, and it’s just so traumatic. Anyway, we booked this an appointment at the doctor again, and it was a young doctor. She was ‘Yeah, and she sat and she listened to the story and and she said, I can see you know, you’re upset, you’re traumatized. And I said ‘Yes, because this shouldn’t be happening.
Helen Van Hooft 16:36
This there’s something not right, and she said ‘Okay, I’m going to send you for an MRI, I’m going to see what it and I’m going to do that today. And she phoned a colleague of hers at the hospital, and she said ‘And you’re, you’re going to leave here and you’re going to go. And she did, so off we check back to the hospital, and I walk in fine, but obviously husband and I are quite anxious, because we know that this thing can happen at any time, and so they take wheel me down for an MRI.
Helen Van Hooft 17:23
I go in fine and as they wheel me out, I’m sat with my head and my hands, and I’m rocking so the the noise of the MRI has triggered one of these episodes. So it’s all hands on deck with the like the accident and emergency team, and they’re like ‘What, what on earth we do with the the oxygen? And so they can see it in full effect. They can see how immediate it happens, and they’re like ‘Okay, what? What do we do? You know, they’d sort of giving me sort of pain, and this, that and the other.
Helen Van Hooft 18:15
So they take, they admit me to the ward, and I think that’s on the Friday, so I’m on the ward, and then on the Saturday, because it’s almost like, each time what I forgot to tell you Bill, each time they are calling, like stroke, because there’s like stroke, like symptoms, how I’m doing it, because of, they’re going through that stroke check, you know, with the yeah and the fingers, how many fingers and, and I can remember, I’m getting a bit agitated with with it, because it’s constant what they’re doing.
Helen Van Hooft 18:59
I realize it’s precaution and, and it’s care and, and I’m every time they’re like, mm, because there’s symptoms that I’m showing that they’re not too happy with. And then it goes, and then it’s back again, then it goes, and so they’re and then on a Saturday, there’s a young there’s two nurses that come in the room, and it’s a young chap that’s in his nurse’s training. And I don’t know what time it is, and I’m going through the process again, and I know that they’ve woken me up, so I’m not really I’ve obviously slept a long time, and and he’s at the end of my bed.
Helen Van Hooft 19:55
And like, clearly, something’s not quite right, and he they’re doing the stroke check, and they’re like, am I? And he’s going, he’s asking me a question, and I can remember, they said ‘How many fingers am I holding up? I’m like, what fingers is that? What I’m at? What fingers? He said ‘Helen, are you telling me you can’t see my fingers and that I can’t even see you? I can hear you. He’s like and I called it, and I’d had a stroke, wow, and I had a right occipital, in fact. So all of the occipital, right occipital is completely wrong.
Bill Gasiamis 21:02
And the MRI confirmed it.
Helen Van Hooft 21:07
So that was on the Saturday, on the Tuesday, because it was a national holiday on the Monday, so or the consultant and everything was away on the Tuesday, they will to me down and take me in three MRI.
Bill Gasiamis 21:26
Alright, so an ischemic stroke, apparently, according to me and my knowledge, perhaps I’m wrong, is where there’s a clot of some sort, some kind of a blockage in the blood vessel.
Helen Van Hooft 21:44
No clot, but that it was a block.
Bill Gasiamis 21:48
Blocked from something, or has it retracted and instead of being round, it’s flat or something?
Helen Van Hooft 21:57
Don’t know? I can’t answer that question, because I think my neurologist when she when she told me on the because I’m still under the care of my neurologist, because I have a chronic condition called status munosis, so that’s a permanent, untreatable migraine as a consequence of all of that she’s she just it’s all to do With all of the pressure that was there that caused the blood to go into the right occipital of my brain.
Bill Gasiamis 22:53
Okay, so sounds like some kind of a just like a lack of blood flow, more than anything, caused and by the by the immense sort of pressure caused by this migraine has impacted negatively the ability for blood to flow to the right occipital lobe, and that caused A headache. Did it cause other symptoms to your body, like any type of deficits that you felt physically, the stroke?
Helen Van Hooft 23:30
Yeah, I have left sided weakness I have in my left eye, so my eye itself is healthy, so I’ve been I’ve had lots of tests and investigations with the like the Dutch equivalent of the Royal Society for the blind. So my eyes, in particular, my left eye is completely healthy. So it’s the brain obviously, we know once blood gets to the brain, that’s it, it’s dead.
Bill Gasiamis 24:18
The eye is healthy. A lot of strokes of eyes actually might not be aware that when they have deficits in the eye, it’s not the eye, it’s the neuronal connections to the eye are not there because there’s damage there, and therefore it’s a cause of, well, say, somebody has blindness because of a stroke. It’s it’s a different kind of blindness, because it’s not the eye that’s the problem. It’s computer.
Helen Van Hooft 24:45
The brain is the computer, so it’s bit, so all of that occipital it is completely gone in my brain. My eyes rely completely on the left side to work. I have a visual impairment, so on my left, I can’t see, so to the left, it’s like there’s a line in my vision. So when I’m home, obviously I’m in a familiar surrounding, so my memory feels in that blank so I can effectively see I know what I’m doing, but should things change then I’m a bit scuppered, and there’s an example of that, like last night.
Helen Van Hooft 25:57
There was a pair of shoes because they were left on the mat where they shouldn’t be, and because they were unfamiliar, I didn’t see them, so I tripped over them, because they shouldn’t be there. So I didn’t see them, so I tripped over them. So when I’m out and about, I’m more vulnerable because I’m in an unfamiliar place, so I’m having to see and move.
Impact of Migrainous Stroke on Daily Life
Bill Gasiamis 26:36
Much more head than normally.
Helen Van Hooft 26:40
Yeah, so in my home, I’m okay. Now this stroke has left me very light sensitive, very movement sensitive and very noise sensitive, because it’s a migraineous stroke. So anybody that has migraines know how sensitive we become, so I have to live with that all of the time. Like you say, a left sided weakness as well, I used to be very, not very, but I could get very aphasic when I’m tired and lose my words fatigue, that’s a, I think, a general thing when you’re stroke.
Helen Van Hooft 27:38
And with that fatigue, you can sort of get emotional and irritable and things like that. That’s less so, which I’m fortunate about, but I can get tired.
Bill Gasiamis 27:53
Again, according to the internet, the occipital lobe sits at the back of the head and are responsible for visual perception, including color, form and motion. Have you had any visual perception issues, color issues, form and motion issues, motion.
Helen Van Hooft 28:16
If especially motion. I’m so grateful about not losing my color perception, because color is a big thing for me, I’ve told you about vision, but motion. I’m really, really motion sensitive. So if there’s a lot of movement around me, my only way of coping with that is closing my eyes. So there’s a loss of independence, because driving was a big thing for me, and obviously I can’t do that anymore, because over here in the Netherlands, also we have cyclists, there’s that’s a big part of their culture, and along the side of the roads there’s lots of waterways, and to help manage the water in this country.
Helen Van Hooft 29:28
There’s also a lot of trees. So the the trickery of the light, the sun coming through the light the trees, and in the summer, with all their leaves and things in the wind, when that blows and plays with the light on the cars is things like that I’ve learned how the the light refracts. My brain can’t cope with that, so I have to close my eyes. Now, if you’re driving a car.
Bill Gasiamis 30:07
It’s not a good idea to close your eyes.
Helen Van Hooft 30:09
Yes, no. And also with when it’s raining and you’ve got the windscreen wipers going, so you’ve got the rain coming, windscreen wipers and the lights of the oncoming cars. My brain can’t cope with that either, and the only way I can cope with that is to close your eyes. So I’m a bit lethal if you put me behind a wheel of a car. So it’s all although one of my goals, because I’m good at I like to set goals for me to achieve was to get myself back driving again, and I started.
Helen Van Hooft 30:52
And then all of a sudden I was like ‘Oh, hang on, oh, it was only in doing it did I realize, hang on a minute, I can’t, no, this isn’t good, this isn’t good. So I sort of very I had to sit down and reflect. Actually, no, this isn’t for me, because if I hurt somebody, because I want to be driving. No, I can’t live with that. I’m not doing it.
Bill Gasiamis 31:28
How were you employed beforehand? What kind of work did you do?
Helen Van Hooft 31:32
I’m self employed. So I’m a medium and a coach and a tutor of that.
Bill Gasiamis 31:52
And we were you a self employed medium and coach, etc, who had a practice somewhere that you went to do that work.
Helen Van Hooft 32:01
Well, this was in the pandemic, and because I’m expat as well, so I was working primarily online and building myself back up again. So, yeah, I’m having to do that all over again.
Bill Gasiamis 32:22
I know how you feel, I’ve been there, done that, and still doing that. Had the seven years or so to get back to work. And then that was 2019 and I don’t think I was at work for more than about six to nine months, you know, self employed as well. And then we were in the biggest lockdown on the planet in Melbourne, here in Australia, for nearly 18 months out of 24 and then then the economy goes into nosedive for many, many reasons.
Bill Gasiamis 32:59
And in Victoria, where I live, more so because the economic situation to keep people locked up for such a long time had a greater impact than some other states, and we still haven’t got out of that mess, and people are struggling, you know, to employ people, to provide them services, because the funding is not so good. So it’s been a a real battle for from about 20,000 to 20,000 from 2012 to 2024 to stay afloat, to cover outgoings, to achieve, you know, financial independence, to have people employed.
Bill Gasiamis 33:48
It’s been a massive thing, and it kind of is a little it’s been okay because there’s no overheads. I don’t have an office, I don’t have a factory and a whole bunch of things and massive loans that are out on the business or anything like that. So you kind of scale down, and then you scale up, but at the same time, when you’re scaling down, you’re not earning money. So it’s really tough, right? But it feels like there’s no other choice, like, what do you do? You have to keep finding a way forward.
Bill Gasiamis 34:27
I’m lucky. My wife works so she’s been able to cover the outgoings. But I’ll tell you what it does take a I’m not sure if it’s not emotional, it’s a psychological hit on you, because I’m doing and I’m not doing this much, right, but you know, I have been at my worst times kind of feeling like ‘Oh my god, like men are traditionally the breadwinner and you’re not bringing any money and you’re relying on your wife, and there’s a couple of a little bit of that negative self-talk. A very short amount of time, but still really surprised that it’s there.
Adapting to New Normal
Bill Gasiamis 35:06
And it’s like ‘Wow, you’ve never dealt with anything like this before, have you mate? So you’ve got to work a way through and deal with it. And your wife’s not saying any of that stuff. She’s not saying ‘Why don’t you pull your finger out and give us some more income. She doesn’t do that, but I still have that thing that goes on in my head that many males might relate to, and I suppose other people who are not males, women might relate to it as well. So that’s been one of the biggest battles, and I see it as a setback.
Bill Gasiamis 35:42
When I’ve spoken to people about it, you know, family and friends who thank God, are healthy and well, and they’ve been going well, and they’re achieving their financial goals, amongst other things. You know, it has come up a couple of times where I’ve sort of said, like, this has been such a massive financial setback, it’s crazy. How do you deal with that? How do you kind of get your wrap your head around that part of it?
Helen Van Hooft 36:13
It is hard because you have your own voice in your head, but you also have the medical profession with what they know medically saying you can’t do that, you shouldn’t be doing that, because I’m also studying within what I do. And I remember, as I affectionately called her my brain nurse, and I told her what I wanted to achieve within my mediumship, if you like, and the study there that, and she was like, well, that’s a lot. And then when within that people, because you’ve had a brain injury, they don’t understand it.
Helen Van Hooft 37:20
Because they’ve got no perception of it, and they’re like ‘Oh, are you sure? Oh, are you I don’t. And one person in particular, you know, you can’t do that, she’s not this, she’s not. And you and I, and I think, and the effects, like on my husband, who had a burnout, as it’s called over here, not just because of me. It was a whole catalyst of of stuff that that sort of, I think I was the cherry on the cake. I think you have to take it one day at a time, and the thing that I’ve learned is thoughts are not things.
Helen Van Hooft 38:24
And if you start going down that rabbit hole of your thoughts that I’ve learned to think, get off that you can change your thoughts. You don’t have to keep thinking that thought. And I did it the other day, and a friend of mine, because I started on that track, and a friend of mine sent me a voice clip, and she said ‘I think we need to change our thoughts about that. And I thought ‘Oh, you’re so right. I did it to myself, I did it. She was so right, and her manner in which she said it was like almost quite school teacher-ish, I think we need to change our thoughts about that.
Helen Van Hooft 39:23
I thought, yeah, you’re so right, we do. And I think, Bill, it is our thoughts in our own self perception, and we get so colored, if you can’t, when we were talking about color, but about what we should be doing. We should have achieved that. We should we must do that, I’m a man, so I must have achieved this, and I should be earning that, and yeah, but you’re a man that is.
Helen Van Hooft 39:59
Had a stroke, most important, you know, and so your your life has been shaped and and affected, and all of it, so you’re doing the best that you can, given the circumstances, and you know all credit to you by getting up again and living each day the best way that you can and your best, my best, our Best, is going to be different every single day, and that’s all we can do, is live our best every day.
Bill Gasiamis 40:47
Yeah, you know that guy that says that stuff to me and puts those thoughts in my head, he doesn’t even consider the fact that I’ve had a stroke. That’s how bizarre it is. It’s like ‘Are you like, the same person? Are we different people? Who is it that is saying those things? It’s so weird that person doesn’t even consider the person who had a stroke at all like, you know, I, that version of me treats myself worse than the the people who don’t know I’ve had a stroke, and you know, you don’t look like you’ve had a stroke, therefore you need to respond appropriately.
Bill Gasiamis 41:27
That’s the same treatment that I do to myself when I’m in that headspace. It’s so weird, and it’s like, how do you a do that to yourself? And then also be the same, be living in the same body and still have the ability to take that tone like it’s terrible, but it’s so weird. I try to observe myself going down that path so that I can stop that voice. But it’s such a strong voice.
Helen Van Hooft 41:59
It is, and I think you know people you don’t look like you’ve had a stroke. Okay, tell me what a person that’s had a stroke should look like. Because I remember I told somebody to get out of my house. I think it was probably come that two years ago, because they were supposed to come to our house to assess they came to assess me in order to give us some help and support, because I needed it. I needed my husband works full time. We have three children, well, adult child and two children living here.
Helen Van Hooft 43:04
My adult child is now moved out subsequently, but at the time, you know, working full time, and I would have appreciated some help with the chores and whatnot, you know, and not driving and so we wanted to investigate if that was possible. And so in this person comes, and I could just tell, because of obviously, how I made sensitivity, and this that, and the other, I can get, you know, a bit of a sense of people. And she looked at me, because I’m walking, I can use all of my limbs because I worked hard on my physio and and I have that sort of strength.
Helen Van Hooft 43:59
I’m grateful to to that, and she sort of looks at me, and obviously my face isn’t drooped or anything like that, and I can talk and Mama, and she was asking me these questions, and she she was so judgmental. She said ‘Well, you don’t look like you’ve had a stroke. I said ‘Well, what should I look like? You look too well. I said ‘I have had a stroke, but you’re young? Yes, I was 48 when I had a stroke. Oh, I’ve never heard of this drug, I’ve told you it’s very about lower.
Helen Van Hooft 44:50
And in the end, I said ‘Well, you can leave what I said, you have come here. You are so judgmental, I said ‘You can leave. Well, you’re too well, you don’t need any help. I said ‘I do. I’ve asked for help. I can’t do this, I can’t manage my home, my husband works, you don’t look like somebody, get out you. I said ‘You have no medical training, you are not you don’t know my medical history. You’ve looked at me, you’ve judged me, I don’t need to explain myself to.
Bill Gasiamis 45:42
Yeah, part of it can be excused when that person comes in like that. I mean, it’s complete ignorance, and usually it’s from lack of experience that ignorance. And then there’s other factors, lack of training and all that kind of stuff, and then there’s like, perhaps her job was it an assessment to not supply the help, or was it assessment to supply the help? Like ‘why were they assessing you?
Helen Van Hooft 46:08
Yeah, we had to ask to see if I could perhaps have, like a taxi, because obviously I can’t drive to help me get to a supermarket in the local area, and for a cleaner to come in to help me clean my house. You know, some domestic help I just to maintain some standard within my home, and because she looked at me, and because I can use my arm and my leg, and she said ‘Yeah, I was not somebody that presents classically as a stroke.
Bill Gasiamis 47:15
Yeah, it’s a big problem.
Helen Van Hooft 47:18
And because she’d never heard of the stroke. My brain nurse was sat with me and I was like ‘But if I hadn’t have had a stroke, would she be sat with me? And basically she just didn’t, she didn’t, like certain aspects of it, and the fact that I was able to sort of advocate for myself.
Bill Gasiamis 47:54
Your career would have people not getting you misunderstanding you anyway, normally wouldn’t, they like the general run of the mill, person who doesn’t hire the services of a medium, or who’s not kind of into that world? Would Is it similar the misunderstanding that people have with you, and am I like imagining that misunderstanding is accurate, like, because I kind of sort of see that world that you kind of, you know, like work in as a little bit misunderstood kind of space from the general public. Have I caught something there that’s accurate, or am I just imagining it?
Helen Van Hooft 48:42
I think so. I think if you know if that’s not the circle or the thing people say that they’re into, then I think people have this stereotypical view that mediums can be a bit wild and wacky and a bit out there, and for me, it’s a way of life. I’m a spiritualist, it is my religion, and for me, being a spiritualist is not so much about talking to the dead and communicating to those that have died, It is about living well and helping others to live well and appreciate that we are all. We are all worthy of a good life, and that we are all connected to one another, and that.
Helen Van Hooft 50:00
Should all treat each other, and this beautiful earth that we live on, well, that, to me, is spiritualism and religion, And spiritualism, the fact that, you know, I get a sense of people. I’ve always had that sensitivity about me, and when I started to develop that ability, it strengthened me, it enabled me to understand myself more, and yeah, it brought aspects of myself to the fore that just settled me into myself, and I’m grateful for that and that enabled me, then to understand others and give me a greater empathy for them.
Helen Van Hooft 51:10
And that I’m grateful for the fact that I have an ability that means I can help others or connect to others that are deceased. Just means that I would never force that onto anybody, unless I am they have given me permission to unless I am working on a platform, or they have come to me in a professional manner. I do not advocate or agree with these programs that you see out there where people are accosting people?
Bill Gasiamis 52:05
No, I it’s not where I was going, what I was going, what, where I think you nailed it. You said that you’re comfortable within yourself. You’ve been able to sort of fall into that space as you’ve got to know yourself and understand yourself and your the way that you experience things and people around you, etc, and that seems to be also helping you dealing with this version of misunderstanding that’s happening because you don’t look like you’ve had a stroke, etc.
Bill Gasiamis 52:36
Are those skills transferable in that you know yourself, you know who you are.
Helen Van Hooft 52:41
Yeah.
Bill Gasiamis 52:42
You’re making assumptions, you’re making judgments about me. And what does a stroke survivor look like to you? Like, what’s, what does that even mean? And you have kind of, I suppose you have more of a insight as to how to handle people with kind of screwy faces.
Helen Van Hooft 53:06
Yeah, and I just think that says more about them than it does me. And there’s a book that I read many years ago, and it was a friend of mine that introduced it to me or suggested it to me, and it’s called ‘The Four Agreements by Don McGraw Riez. And I read it, don’t know how many years ago, about 15 years ago, and it was a life changer, and these four agreements were something that I adopted.
Helen Van Hooft 53:45
But it was something that I adopted then, and one of them is ‘Do not assume. So, you know, if you assume anything about anybody then there comes a period at some point that you have to then do the work to unassume everything that you’ve assumed about them, and that takes a lot of effort.
Bill Gasiamis 54:16
Tell me about that. Why does that point come? Why do you have to get to that point where you eventually you have to unas stream everything.
Helen Van Hooft 54:23
Because, it’s easier, instead of assuming something ask. So instead of my, you know, like the other day, my husband said something like ‘Oh, yeah, well, I bet, they did this. I said ‘You don’t know that. He went ‘Well, I bet. I said ‘You don’t know that. That’s what they’re thinking. Well, I said ‘You don’t though, do you? He went ‘No. I said ‘So, when you go to work tomorrow and you ask them, and you’re wrong, how are you going to feel?
Helen Van Hooft 55:09
All of it’s stupid, I said, So, all of this assumption and getting fired up that they’ve done X, Y, Z, and all of this feeling, ill feeling potentially, you’re going to have to unwind that. So instead of just leaving it right now and not feeling anything, you’ve got a whole load of more work to do tomorrow after you’ve asked them. So instead of just leaving it empty, that’s what I mean by assumption. So, in this book, where it says ‘Do not assume, ask questions, speak to people in the first place. So if you don’t know, don’t assume that you know.
Helen Van Hooft 56:00
Don’t jump to an assumption about anybody or a situation, don’t overthink stuff, don’t because when you actually begin to know the truth, you have to then pick everything that you felt or think that you know, or there’s so much other work that you have to do because you have formulated your own thoughts or own conclusion which could be actually wrong, and you could have saved yourself all of that work in the first place by asking a question.
Bill Gasiamis 56:40
Yeah, and the energy and the all of it high blood pressure and the elevated heart rate and all of that stuff, and the anger and the concern, whatever, it’s a profound statement. You know that we don’t realize we’re doing it a lot of the time. People just go down their path, and that’s the thing about people who we come across, who don’t know what stroke looks like, or are ignorant to stroke.
Bill Gasiamis 57:13
They come across, they make an assumption, they get shocked, they don’t know how to respond, and often it just had happens where it’s a little bit uncomfortable, etc, especially if you’re somebody like me, who, when somebody makes an assumption about the way I look or am or whatever, they hear it in a nice way, they get told, and then when they get told, the back pedaling might begin, and those types of stuff, I try not to bring them to that stage, but I don’t shy away from saying to somebody.
Bill Gasiamis 57:51
Well, I don’t know how might you have felt if you had three brain surgeries. You had one brain surgery, three strokes, you couldn’t walk. You had to learn how to walk again every day your left side hurts. But that’s the real thing with me. It’s like my pain is ongoing, and it’s every day, and my deficits on my left side, and that’s the biggest challenge, is like, I go to work and I’m wiped out by sometimes 10 o’clock, and then I’ve gotta still get through that day, and I’ve gotta bring the guys along with me for the ride.
Bill Gasiamis 58:27
And I don’t need them to be seeing me and thinking this guy’s not doing enough, you know. So there’s a little bit of, a lot of explanation to people, put people at ease that, you know, I am pulling my way. I am doing my bit in my own way, the way that I can do. And it’s just, it’s me getting comfortable with just being able to, if I have the opportunity to set the scene, so that once I’ve set the scene, the expectations of the other person are managed, and then once they’re managed.
Bill Gasiamis 58:27
Then it’s an easier conversation on a regular basis, rather than assumptions being made by that other person just through ignorance. It’s the situations where people, where I don’t have that opportunity to let do the groundwork and set the expectations, where people often kind of get caught out by somebody that looks like me saying ‘Hey, no, I’m not well today, you know, and I can’t do what you’re asking. And then trying to get them over the line.
Adapting to Life Post-Migrainous Stroke
Helen Van Hooft 59:45
Why do you I have a question, why do you feel that you are responsible for getting them over the line?
Bill Gasiamis 59:57
So you might not be right or wrong. I don’t know what the answer is to whether it’s right or wrong. However I feel that way, because it seems like it allows me to do less work later, and the way I feel later gets the the negative, the negative side of how I feel later in that assumption like game is decreased, and I feel like I’ve made it easier for the person who’s ignorant a little bit as well later, so that they don’t feel a little bit like not attacked, but like they don’t feel like I’m judging them or something like that. Do you know what I mean? So, I just try and diffuse it.
Bill Gasiamis 1:00:49
I suppose that whole thing that might happen later, you are not responsible for how I know, I know I’m not. It’s just the process that I go through. It’s just sort of, it’s got a lot to do with my upbringing, and it’s got a lot to do with the way I go about my work, and the expectation that when I go to work and I have to deliver an outcome that I need to get paid for it, part of it is setting the expectation how I’m going to deliver that outcome, because people’s idea of how you deliver.
Bill Gasiamis 1:01:23
Especially in my field, like with property maintenance and repairs and painting and all that kind of stuff. There’s a lot of shows now on TV that show in half an hour and a half an hour episode, the guys paint their entire house and bang, and there you go, and anyone can do it, and somebody who’s never picked up a brush before for and they get, you know, the highest rank, and they win a prize, and all that kind of stuff there’s that has impacted our business, because we have to re educate people on how things are done.
Bill Gasiamis 1:01:58
And I’ve gotta do that with my deficits as well doing it before, I could push harder, and I could go through barriers, and we could do extra hours, and we could work Saturdays and Sundays. They’re all off limits now, so there’s strict rules as to how I work, and if I don’t lay those ground rules out. That also includes my stroke sometimes, then I annoy the client, and then that impacts the way that we get paid, the smoothness of the job, etc. So part of that has kind of infiltrated my personal life, because that’s what I do most of the day. And I’ve been doing for 20 years.
Bill Gasiamis 1:02:45
So I come home like the dumb things also that I do because of my work is I’ve come home and I see imperfections in the wall or in the door, in the door and all these weird place and I go to people’s houses and I notice them as well. I don’t say it, but that work has infiltrated my personal life. As much as I try to distance myself from it, I end up going back to that work every day.
Bill Gasiamis 1:03:18
So, you know, it’s a bit of a task, and I’m not perfect as well, like I’m a podcast and I’m presenting the recovery after stroke podcast, but I’m a human and I struggle with the same things other people struggle with. I try and talk about it as much as relevant to each episode. But you know, I’m far from the the standard.
Helen Van Hooft 1:03:43
But we we’re all human, so we’re all in imperfect. That’s what we’re here for. That’s the the experience, the human experience.
Bill Gasiamis 1:03:58
I kind of don’t mind it. It’s I want to make sure that I’m clear that I don’t mind it, but I’m intrigued by and when it happens, I try to observe myself in certain situations that are weird, uncomfortable, difficult, and it’s like that guy before, I like to observe that guy treating my myself in that way, and pretending that you’ve had setbacks and you haven’t achieved your goals, and forgetting that you didn’t have that you’ve had a stroke or two. And you know, I try and play that role as well, like I don’t just I do my best not to sit in the space where it’s impacting me negatively.
Bill Gasiamis 1:04:44
I’m a problem solver by nature, so I love to. I’d love to notice where things can be improved, and always seek improvement for my own benefit, so that your life is easier and I’m more resilient. I’m, you know, going after resilience and adaptiveness, and I’m also trying to become more respondent, and also sometimes unrespondent, you know, when necessary.
Helen Van Hooft 1:05:18
Sure, that’s really important, you know.
Bill Gasiamis 1:05:22
And as a hot blooded Greek background, younger brother of an older brother, not responding is such a tool that I need to learn and master.
Helen Van Hooft 1:05:39
Just because you’re even fighting to a fight doesn’t mean that you have to go.
Bill Gasiamis 1:05:45
That’s right, yeah, I’ve never shied away from any kind of confrontation. I’ve spoken about it with my wife recently, you know, I don’t mind confrontation. She dislikes confrontation. So we kind of, you know, that’s where we get stuck, unstuck sometimes.
Helen Van Hooft 1:06:03
And to one of those doesn’t like confrontation, doesn’t do well with it.
Bill Gasiamis 1:06:14
I just don’t take it personally. I don’t take confrontation personally, whereas my wife and other people I come across might, and I’m sometimes not even being confrontational. I might just be like, very playful, passionate, talkative, loud, whatever. And I get the ‘Why are you yelling? Oh my god, I’m not yelling. I haven’t even started yelling yet. I’m just talking, you know, my hands are going everywhere, and it’s a sight.
Helen Van Hooft 1:06:50
It’s that Greek blood in you.
Bill Gasiamis 1:06:53
Man is and, you know, in my home where I grew up, my dad and my brother, and on my dad’s side of the family, they’re all loud and big and tall and huge and they and that’s just normal. You go into that house and when everyone was around you, just it was loud, the decibels were through the roof.
Helen Van Hooft 1:07:18
Now that would have been no good for my glass head at all.
Bill Gasiamis 1:07:22
Yeah and it’s not good for me now, but I thought I understand, you know, the version of conversation that looks crazy to an outsider who is gentle, non confrontational, listens more than talks. I get it. So, I have my identity is full of my work guy and I, and my identity has expanded since the strokes and all that stuff and evolved. But there’s definitely a lot of that guy that trying to please other people for money, guy that infiltrates my daily interactions sometimes.
Helen Van Hooft 1:08:18
I think it’s tricky when because stroke changes everything and you have to adapt, and not for me personally, allow for it to be everything, that it’s part of of you, but not everything. And for me, it’s like when I had children and ‘Oh, you’re so and so’s mum? No, I’m Helen. It’s, I love being a mum. I have four children, wow, two adults now. And, but it’s not the be all in it, and the end all, there’s so many aspects to all of us as humans. And I think when we grab it one thing to shape our whole identity, we miss out on it, on everything else.
Bill Gasiamis 1:09:36
And it’s so hard later when you’re challenged by stroke, and your identity gets knocked about, and then you’re doing the whole I can’t be a mum anymore, or I can’t pick up the kids from school, and I can’t do that. And it’s like ‘Oh my gosh, that’s one of the things that didn’t catch me off guard, which was great. My identity was is kind of broad enough and flexible enough so that I was still able to be a dad without picking them up from school.
Bill Gasiamis 1:10:06
I was still able to be a dad without taking them fishing and all that kind of stuff. I missed out on fishing, and they would have been lovely to go but I didn’t stop being a dad. I just changed the way I was being a dad.
Helen Van Hooft 1:10:22
Eating it out, finding, cultivating a new pathway for yourself within the challenges that you face. I think that’s really important Bill, you’re absolutely right.
Bill Gasiamis 1:10:36
And then there’s, in my book, there’s a chapter where I talked about the I compared it to the being an empty nester. My boys have both moved out now, and it happened probably, you know, 10 years after the first incident, and they were old enough to move out, so we were kind of getting in each other’s space, where we were living. So it was good, but I missed them.
Bill Gasiamis 1:11:08
I had, like, separation anxiety and all that kind of stuff. But there’s also that empty desk, which is the person who has a job, and they all their friends or their connections, or the people they associate with are all related to their work, and then they either have to retire, or for health reasons, have to stop working or they lose their job. And their identity cops are real, a real knock, and then it’s like, who, if I’m not the guy that goes to work and doesn’t deal in all that space.
Bill Gasiamis 1:11:49
And I haven’t had a hobby, and I haven’t had a gym, or I haven’t had this, I haven’t had like, then who am I? What do I do? How do I interact with the world, and what am I going to talk to everyone else about that doesn’t work in that space or live in that space?
Helen Van Hooft 1:12:05
Yeah, I talked about it last night, I was working on, I have a spiritual community, and we were online last night. I talked about that in our philosophy about going little, sometimes there’s a need to go small and and then going small sometimes you can find aspects of yourself that you didn’t know that was there, and when you go small, because I think society nowadays is demanding us to be big all the time, go large or go home, you know. And but I believe that sometimes when life, or you allow yourself, you have the courage to fall and go small.
Helen Van Hooft 1:13:10
That there’s such a beauty in that, because you allow yourself, like I said, to find aspects of yourself that you didn’t know that was there, because I’ve always been very fiercely independent from a very young age, and obviously the stroke taught me other things about allowing other people to do things for me, not only medical stuff, but my husband had to be my carer for a long time. Every aspect of my well, not every but you know how helping me shower, helping me dress, you know, I had to feed me because I couldn’t even cut my food.
Helen Van Hooft 1:14:04
I remember the first meal after the the stroke, I could see that it was food. I knew it was food, but I couldn’t feed myself, but didn’t even know how to cut my food, you know, I didn’t know what a knife and fork was for. The memory came back when I saw him do it, but I didn’t have the dexterity or the physical strength to do it, you know, I couldn’t brush my teeth. I couldn’t so people had to do it for me. So in doing, allow having to have people do that for me, talk me at things about myself, humbleness, humility.
Helen Van Hooft 1:15:00
But then having my life so little and only being able to do a small amount of things, because you just don’t have that brain energy. You can’t, you know, and if, when people are talking around you, you can’t, you literally can’t compute, and it hurts your brain in the end, people were like ‘Okay to go outside, because you’re like, cool way. So, you know, you learn stuff about yourself constantly.
Helen Van Hooft 1:15:46
The other thing even before that, you know, were you talking about in your own life? You know, being an expat, when I moved from England to the Netherlands, my life became small and little, because my friend group, my work group, my dad did it, all of that. So my life became small. Then you know, so it in you learn things about adaptability, resilience and but in doing things like that, when life becomes small and little, and allow in allowing things like that for other people to show themselves, they grow, and you see them in different ways.
Helen Van Hooft 1:16:47
And I think there’s beauty in that you see yourself in a different way, but you see others in a different way, and you all grow in different ways in that moment, and I think that’s there’s beauty in that.
Bill Gasiamis 1:17:08
Yeah, indeed, what’s the hardest thing about stroke?
Helen Van Hooft 1:17:16
For me, the loss of the independence, to drive, because that was the big thing, and it still is, because it’s limited me, I believe, of being able to get up and do things, and I see how that’s impacted on my husband, because we don’t have a support of a friend net, a big friend network or family, it is just us. So that is, I think, the hardest thing, not being that independent, being able to get in the car go do my grocery shopping.
Helen Van Hooft 1:18:17
Because I loathe the online shopping you know, where they substitute stuff? I don’t want that. I want to be able to choose, and just to be able to take for granted, to be able to go into a noisy place and not be so and not be affected by the noise, the lights and people and people, because everything has to be considered.
Bill Gasiamis 1:18:58
Yeah, that is now. That can be a hard one for sure, I went through that as well, the inability to attend sports events and concerts and all that kind of stuff, and being asked to and not being able to say yes, because I didn’t want to be in those environments for two or three hours at a time, and then probably not going to be fun if I’m there for the other people. So it’s better to just, it was better to stay home.
Helen Van Hooft 1:19:31
Yeah, not, you know, to go sort of to a marquee and, you know, if there’s a disco and this, that and the other that. I can’t contemplate to do that, and even to a restaurant or whatever, that’s a big consideration. What’s that going to be like? What’s the music level going to be like? How many people could be there? A likelihood is, you know, probably about an hour tops. That’s with my special ear loops, my special glasses.
Bill Gasiamis 1:20:13
You know, one of the things I do want to go to a restaurant now is I look up to see if they’ve got acoustic tiles, if they’ve what, if they have a good acoustic setup. That’s another weird thing that I do is I go and check out restaurants and see and if we go one time and they haven’t got a good cruise set up, and the noise is bouncing everywhere, and it drives me bonkers, then I never go back to that restaurant again. We won’t go back.
Bill Gasiamis 1:20:39
So it happens so often, and it’s strange how people don’t take that into consideration just for a nicer atmosphere for their guests. That’s all not even for people who might have noise sensitivity issues, just a regular kind of nice environment for a restaurant, I feel like they need to take more consideration of the acoustics anyway.
Helen Van Hooft 1:21:09
Yeah, I think you know that is there’s always I think in life now, there’s always sort of a trade off. I’m very part of me feels a bit like a an imposter in the in the stroke community, if you like, because I’m very aware that I’m walking, I’m moving. I like to say ‘Yeah, I’m very vain in my face it’s fine, and this and this, and that. But if you put me in a loud environment and whatever I can’t be, I won’t last long, you know. So I know that I’ve had a stroke in this setting. Life is very different, but I am, you know, I can like you. You’ve said, life is very different.
Helen Van Hooft 1:22:16
You have to manage your day, you can do this. You have to be very considered, I’m aware that I can work a full day in my work. I can do a long shift, like yesterday, I worked a long day. I worked a long day on Tuesday, I can do it in my line of work. And I love my work, and I’m very fortunate that I can do it, It’s not been affected. So there are, six of one, half a dozen of the other. And may there’s hope with my neurologist that as I come the other side of the menopause, that may be status megrinosis, goes that I will no longer have this horrible constant migraine every day.
Helen Van Hooft 1:22:21
There’s hope for that we don’t know. So it might get better, but like I said to her ‘If it doesn’t, it doesn’t, I don’t whatever. I’m here, I’m alive, I’m living, I’m doing stuff, I’m whatever. And she’s like ‘Well, don’t you want that?
Bill Gasiamis 1:23:48
You’ll take the win.
Helen Van Hooft 1:23:49
Yeah, I’ll take the win.
Bill Gasiamis 1:23:52
Yeah, what has stroke taught you?
Reflections on Resilience and Spiritual Growth
Helen Van Hooft 1:23:57
So much. I was, I’m always, I’d like to think a positive person. I have my down days. I have, I’m like, we’ve said humor, but I don’t unpack, don’t stay there. I’ve stroke has taught me just how resilient I am. The fact stroke has taught me just how common it is, how you shouldn’t look at somebody and say ‘Oh, they not had a stroke, because they don’t present with the droopy face, with the lint, with the did the because that’s not true.
Helen Van Hooft 1:25:00
That we should all be good to one another, because life changes in an instant. So with people that you love, just tell them exactly how you feel all of the time, and don’t think, don’t assume that you’ve got tomorrow, because that’s not necessarily a given.
Bill Gasiamis 1:25:41
That is very true. What do you want to tell other people who are listening, who are on a similar journey?
Helen Van Hooft 1:25:55
Live well, live life according to what feels good and authentic to you. Don’t allow others to tell you what is right and proper for you. Live according to what feels authentic to you, because people mean well, and they think that they are telling you or that is true for you, but ultimately, you are the one that is the barometer of what feels the best for you. And if you are unsure of what that is, then take a moment, because there’s a Hellenism that I always have, that is, if you are unsure of what it is that you want to do, then do nothing.
Helen Van Hooft 1:27:09
Just pause, breathe, sit with it, and then allow for that, just that silence within you to guide you, because that will eventually tell you where it is that you want to go, because nobody should have autonomy over you. You are the one that knows best.
Bill Gasiamis 1:27:38
And on that note, thank you so much for joining us on the podcast.
Helen Van Hooft 1:27:41
It’s been a pleasure. I’m so pleased to finally met you, Bill. Keep up the good work and be kind to yourself.
Bill Gasiamis 1:27:51
Well, that is a wrap of this incredible episode with Helen Van Hooft, her journey through my grain of stroke and her insights as a spiritualist, remind us of the power of resilience, adaptability and the importance of living authentically, even in the face of profound challenges. Before we go, I want to thank you all for being a part of Recovery After Stroke Community, your comments, support and feedback mean the world to me, and they help us connect with more stroke survivors and caregivers worldwide.
Bill Gasiamis 1:28:27
If this episode resonated with you, please consider leaving a five-star review on Spotify. We are at about 47 at the moment, I’d love to get it to above 50. Also consider leaving a review on iTunes, if that’s where you listen to your podcasts, or hit the like and subscribe button on YouTube. Your support helps others find the podcast and join our grand community for more resources, remember to visit recoveryafterstroke.com. Thank you for tuning in, and I’ll see you in the next episode.
Intro 1:29:01
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The post Facing a Migrainous Stroke: Helen van Hooft’s Story of Resilience and Recovery appeared first on Recovery After Stroke.
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