Lilia Artimenia is recovering from an ischemic stroke and recently began sharing her story and adaptive exercises on her Instagram page
04:43 Ischemic stroke caused by PFO
13:23 Memory and speech issues
20:45 Post-stroke struggles
28:47 Stroke Exercises
33:32 Exercise After Stroke
41:22 Future plans
What motivated you to put up your Instagram page? The one where you’re sharing adaptive workouts.
I started to look up workouts for stroke survivors. And basically, it was just a bunch of old people like doing this. And so I said to myself, this has to change because not all stroke survivors are old people. And so made the page.
This is the Recovery After Stroke Podcast, with Bill Gasiamis, helping you navigate recovery after stroke.
Bill from recoveryafterstroke.com This is Episode 128. And my guest today is Lilia Artimenia. Lilia is recovering from an ischemic stroke, which she experienced at the age of just 17 years and is working to improve her speech, as well as her mobility.
Now before we get started, if you have ever wondered what else I can do to help you with your stroke recovery, you should know that you can now get recovery after stroke coaching right from the comfort of your own home. I too am a three-time stroke survivor and a brain surgery survivor.
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As a bonus, you will get to face to face zoom support calls with myself to take your recovery to the next level. Go to recoveryafterstroke.com/support to sign up, you won’t cost you anything for the first seven days, and you’ll get a full refund. If you’re not happy after 30 days, you have nothing to lose and everything to gain. And now it’s on with the show. Lilia Artimenia. Welcome to the podcast.
Thank you so much for being here. I really appreciate it. I decided to get in touch because Instagram is pretty exciting, or for me to read because you like to share exercises for stroke survivors. And then when I saw that, I became curious about who was behind that Instagram.
And I was shocked to find out that somebody so young was behind it. And I needed to understand why. What motivated you to do that? Can you give me a bit of a, can you let us know what actually happened to you?
Well, I had a stroke. And I was thinking I wanted to work out after the stroke, right. But, my body was unable to like my right side was affected. So the majority of the people who were like, who had a stroke are old so they just kind of like given up at that point.
And like saying, I’m not gonna work out at least I think. So I wanted to create an Instagram page where I’m making adaptive workouts for people who had brain injury and so yeah.
Ischemic stroke caused by PFO
So what happened to you actually, though, you had a stroke, what kind of stroke was it?
Do they know what caused it?
The PFO in my heart there is multiple causes to this. So I was on birth control. And that causes my blood to form clots. And I had a latent five factor blood clotting mutation, which is the blood runs extra thick and it like clots more easily. And I had a PFO in my heart. And so it’s basically like a whole heart, so to speak. And so I was a ticking timebomb.
You had a hole in the heart, which is also called a Patent Foramen Ovale. And you had this genetic condition that enables your blood to clot quicker. And at the same time, you were taking the birth control pill, which sometimes causes blood clots for some people and stroke.
Were you aware of any of those things before you were prescribed the pill? And then when you’re prescribed the pill, were you told that there was this underlying low risk of having a stroke from it?
Yes, but I didn’t think that would be me. So, but it turns out, it was me.
Yeah. And how old were you at the time?
It’s a bit rough, isn’t it?
What happened on the day? What did you notice?
The day that I had my stroke, it’s kind of, I woke up really early in the morning to go. I was a ski coach. racer, and I raced for five years. And I decided to coach and it was my second year doing that. And I woke up really early, drove to the mountain, which is like an hour and a half.
And I took my pill, which is like at seven in the morning when I got to the mountain. And went ski racing, I coached, and went back, got home made dinner, my boyfriend and I, were staying over at my dad’s place, because my dad was vacationing and later on like, I found, later when I was about to go to sleep.
I was really tired, like really tired. And, like, an exhaustion I have only felt like, once in my life and that was that and I had a headache. And basically, that was it. Like, I had a stroke right then and there. And I didn’t know what was going on with me. And like, I couldn’t talk, my right side went numb and my face was drooping.
And they told me that, my boyfriend calls an ambulance and the paramedics arrived, the EMTs. Whatever arrived on the scene 10 minutes later, and they said we don’t know what’s going on. They thought it was drugs.
Yeah. You’re too young you’re with your boyfriend, you don’t fit any of the common criteria for somebody who’s having a stroke. And it’s very common that people who are younger, who are having a stroke get misdiagnosed for being either drunk or on drugs.
So when that was happening, when they were talking to you and telling you they don’t know what’s going on with you. Were you aware of what was happening around you?
I was in a semi dazed state, so I could kind of make out what they’re saying. But I couldn’t understand like, my functioning like capabilities in my brain were not there, so I couldn’t make out what they’re saying. My processing information.
How old was your boyfriend at the time?
So he was 17 and he’s dealing with his girlfriend who’s having this issue?
Have you had a chance to speak to him about it since then, and what that was like for him?
We’ve been together for two years now. So, he was there for me the every step of the way, and I did get a chance to speak with him. And he said, it was really stressful. He said, I didn’t know the address of when I was calling the ambulance.
So luckily, I looked up a mail lying around, and that’s how I got the address. And so he couldn’t sleep for like the past. Like, when I had my stroke, he couldn’t sleep for the past three days. And it was really traumatic for both of us.
Yeah. I can imagine. So you went to hospital? How long after you were in hospital did they finally tell you what had happened?
And then by then they had done scans on your brain and found out what it occurred?
And then sometime later, did they continue to have you in hospital to discover the PFO? How long did it take before they discovered the PFO?
I was transferred like I was rushed to the hospital in Aurburn Lake. And I stayed there for 24 hours. And then I was transferred over to Harborview inpatient ICU. And that’s when they found the PFO like, two days later, I think. Since the stroke, yeah.
Yeah. And in that time, I imagine your dad was around, he had been notified. What was he going through?
Same thing stress, lots of stress. He didn’t know if it was gonna happen again. Or he didn’t know basically.
Yeah, that would have been tough. And then you’re in hospital. How long before you realize that there was going to be some rehabilitation that needed to occur and what were the issues while you’re in hospital?
Memory and speech issues
I didn’t really remember anything. That week that I stayed in the ICU Harborview. So I was mostly sleeping. And then they transferred me to Seattle, children’s inpatient rehab. And I just kept on going. I was still silent for about two weeks now.
So my mom was praying for me, and my dad was praying for me that I would talk again. And that was the first step. And I didn’t know what was going on. I thought it will be fine. And I just kept on going and fighting.
Yeah wow, that would have been tough. So were there times when you couldn’t speak when you really wanted to say something that was important?
No. I couldn’t really process information. So I didn’t have the words to talk. Plus, I didn’t feel like talking.
It wasn’t so bad. So it was probably worse for mom and dad because you’re not talking. Were you able to respond in anyway? Did they help communicate at all with some board or anything? Was there anything?
Thumbs up and thumbs down. But half the time I got thumbs up and thumbs down mixed up.
They’re all confused even more. Wow so how long was it before you got to go home? How long did it take for you to actually get home?
And then the recovery. After that continued there would have been some adjustment period when you’re at home. What was it like to first go back home again?
I was relieved. I didn’t feel like staying in the hospital one more night, even though I should have done I should have given them. So I was so relieved. And I was ready to be get back home. And the funny part was I had to go in a wheelchair.
And then, slowly, I started making my way to the cane. And then to like, no help at all. And getting in and out of the shower was the hardest thing. I had a chair, shower chair, And so yeah, I was afraid I was gonna fall. But I didn’t.
Was that a problem? Did somebody have to help you in and out of the shower and help you shower?
That was rough.
Who got the job?
Yeah, well, that’s fair enough. Dad was probably relieved that he didn’t have to. Wow, that’s really tough. And what about your boyfriend? What kind of role did he play when you got back from hospital?
He helped me out with stuff like zipping my jacket. And like, when I had a gait belt, he would hold the gait belt. Make sure I was steady. And I don’t really remember much about my boyfriend being there so.
Yeah, he probably was in and out as little as possible. Trying not to you know. Hang around like a bad smell.
So were you at college? Or were you doing any of that kind of stuff before the stroke did that interfere with how did it interfere with your life?
It stopped completely I was in senior year of high school. And I was doing running for about two years now. And it was the beginning of the semester, like quarter and winter quarter. And three days into it. I had a stroke. And life completely stopped. I was focusing on rehab and I was taking college classes at Bellevue College.
And then once I got released, they were thinking I wasn’t going to graduate because of my stroke. And I needed two more English credits, and I wasn’t talking. But I graduated with a special ed program, and I didn’t want to be in that, but I graduated. And so yeah, and I deferred my admission to Washington State University by one semester. So I’m going to start in January 2021.
Awesome. So you’re still going to go to uni. And what do you hope to study when you go there?
What else would you study. Well done that’s awesome. So it does put a pause on life, doesn’t it? And in that time, in the last two years, what have you been experiencing? As far as physical symptoms, I personally went through fatigue, memory problems. I went through the inability to just do normal tasks, like drive, or remember my appointments, that kind of thing. What other little challenges that you struggle with.
I was taking a shower. It only happens in the shower, really. And before my stroke, and I would be in and out of reality, like, I don’t know how to explain it, but it felt like my body and, my eyes were like, in different parts. Like, I was looking at my body in the shower. And I don’t like the couple months leading up to it, my stroke. I will always get that.
So you were getting a feeling like there was something wrong, but you didn’t really know. And it was happening while you’re in the shower?
Every time you had a shower, or just sometimes?
Every time I had a bath or shower every time?
Well, so is it maybe something to do with the amount of heat from the water? Was it like an out of body experience?
And that doesn’t happen still?
No, also leading up to my stroke. I had a really fast like irregular heartbeat. And so I was gonna go check that out. And also, leading up to my stroke, I had a wheezing problem. And so they said, it’s probably asthma. Exercise induced asthma, like, go get an inhaler.
Right. So looking back, there was a couple of things that were happening that at 17, you really don’t really pay attention too much. You tried to get help. You tried to get some advice. But really, it didn’t go much beyond that.
So that wheezing and all those other symptoms that you’re experiencing? Are they things that you experienced still, or are they also not there anymore?
Not they’re anymore.
Not there anymore. Wow. So interesting, did they close the hole in your heart? Or is that still there?
And they closed the hole in my heart on January 26.
But you’re happy that that’s done?
So that decreases the risk of another clot forming because of the PFO.
Almost to zero. So that’s really good. So are you now on blood thinners? Are you taking some kind of medication regularly?
Yes, Baclofen, which is a muscle relaxant. Because I have tone in my arm and fingers and the baby aspirin every night.
Just to keep the blood a little thinner and circulate a little easier. So have you tried to be active since a stroke what has happened with you as far as you’re 17, so you’re probably pretty active, you’re skiing, you’re doing sports, you’re doing all that kind of stuff. What have you been able to do since your recovery?
I skied four months after my stroke. And I could only hold the pole in my left hand, not my right. And the challenging part was putting on my ski boots. And so I did that. Plus, I have been working out at the gym. I couldn’t walk for the first two weeks after my stroke, and even more so because I was in a wheelchair when I got home.
But I ran a mile in less than 15 minutes last week so yeah.
So you’re slowly getting back to the things that you enjoy doing? Is running something that you used to do often? Or is it just something that you started recently?
I’m running is something that I would do often because before my stroke, I could only take certain links for running because of my asthma. And now I don’t have that anymore. So I can run all links every time.
Yeah. Wow, isn’t that strange? Now you don’t have asthma. I mean, I’m so glad to hear that. But it’s just so weird that now you don’t. So what was skiing like for the first time since the struggle where you falling over a lot more? How did that go?
I didn’t fall over once, but I had to climb up cuz the chairlifts weren’t working. So hopefully I can do that. Once the ski season comes around, and it was weird. It was definitely weird because of my right side, mostly my right leg wasn’t what I remembered. And I was mostly leaning on my left leg.
So a little bit of a challenge. Something you had to adjust to is a bit different.
Exercise After Stroke
Yep. How has it been since you’ve come home? Have you had to experience fatigue and all those types of things? Do you get more tired than you used to? And what do you notice about your body? Is it harder to move it when you’re more tired?
Yes, my tone increases dramatically. When I’m tired, and I can’t lift like my right like legs towards my back. And it’s completely changed my life because I get more tired more easily. And I get headaches a lot. Almost every day, right now I have a headache.
Yeah, so it sounds like as your brain gets tired, and you start to notice your deficits a little more, it’s pretty common, I’d say because you’re so young, that your ability to have more stamina will increase your ability to decrease the fatigue will increase, you get better and better.
And you start to notice things that you can do that you couldn’t do before. I had to stop driving, I had to stop working, I had to stop doing all sorts of things. Are you back driving yet?
Yes, I am. I just got my car accommodated, to so to speak. Instead the right gas pedal, it’s on the left because I can drive better with my left, and I have a knob for my steering wheel. And I have to before I can drive solo, I have to get logged 10 hours with my parents. Before I can drive.
Yeah. Is it tiring to drive now? Do you notice that it’s a lot harder? Because you’re concentrating a lot harder?
Yeah, I keep on getting scared, the break is towards the middle, my gas thing is towards the left. So I keep on getting scared that I’m gonna hit the brake and like gas and instead, like, you know what I mean? Like, somebody is in front of you, and you think you hit a brake, but you’re hitting the gas actually so.
I understand. It’s completely different. And you’ve just recently, you know, you’ve only been driving for a few years. So you’ve just learned how to do it properly. You know, you got to really learn how to do it again.
I was driving a stick shift beforehand. And because it was my left side, there was effect that I can no longer drive a stick shift, I can feel it. And I can still change gears and all of that. But if I’m tired, then I can’t feel the pedal. And I have been known to instead of press the clutch pedal to press the brake pedal.
And that’s dramatic. Because if you’re doing any speed in traffic, and you’re trying to change gears, but instead you’re slamming on the brake, the guy behind you is not happy about it at all.
Yeah, my boyfriend drives stick shift. And he says, it’s really hard.
Yeah. And especially that when you can’t feel one of your legs properly it’s even harder. So I gave that away, I got rid of that car, and I changed my car to an automatic transmission.
And that makes life a lot easier because my right foot is better than my left foot. And that way, nothing had to change. Nothing had to be different. So it’s a lot easier. So what motivated you to put up your Instagram page? The one where you’re sharing adaptive workouts? How did you come about doing that?
I started to look up workouts for stroke survivors. And, basically, it was just a bunch of old people like doing this. And so I said to myself, this has to change, because not all stroke survivors are old people. And so I made the page.
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be. You’re likely to have a lot of questions going through your mind. Like, how long will it take to recover? Will I actually recover? What thing should I avoid in case I make matters worse?
Doctors will explain things. But obviously, because you’ve never had a stroke before, you probably don’t know what questions to ask. If this is you, you may be missing out on doing things that could help speed up your recovery. If you find yourself in that situation, stop worrying, and head to recoveryafterstroke.com, where you can download a guide that will help you.
It’s called seven questions to ask your doctor about your stroke. These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery. head to the website now, recovery after stroke.com and download the guide. It’s free.
So I noticed in some of your posts, you’re doing push ups and sit ups and all that kind of stuff. And it seems like you have to take a little bit of time to set yourself up. Yeah, so you have to put your right hand down in the correct position, etc. Other push ups easy to do, they’re getting easier as you practice more.
I’m not really because I have good days with my toes, and I have bad knees with my toes. And so most of the time, I just do knee push ups. Um, but depending on my toes, it’s not about my core and my toes. You know, when I’m in my coat, your toes curl up, and there’s nothing you can do about it. And so you kind of resort to your knees. So but my arms are getting stronger. So I think that’s because of the push ups and setups and everything else.
Yeah. What kind of feedback have you had for the page?
Keep doing it. I love your workouts. You’re so inspiring. A couple of mean comments saying you had a stroke how true is that? And I know.
What’s all that about? Like, how does that even happen? What was it from people that were your age? or older than you or?
Older than me?
Because you’re doing exercises or because maybe you didn’t have a stroke?
Both I guess mostly because they think I didn’t have a stroke. So why would I lie about that?
So many other things that you could lie about. Deciding that the thing you’re gonna lie about is having a stroke. Wow, people are crazy. Some people are very bizarre that they would have a problem with you posting exercise videos and saying that you had a stroke? What a strange world. How do you handle that type of negative feedback? You just ignore it or do you respond?
I respond saying strokes don’t.
Don’t discriminate, do they?
Yeah, don’t discriminate against age so and I ignore them and block them.
That’s really interesting. I had an interview I interviewed for Episode 118 Priya Sharma. Who was very young, similar story to you in her 20s like officals 24. She was taking the contraceptive pill at the time.
And after she took the contraceptive pill and had a stroke, she realized that there may be was a connection and she did go back to the gym and she started exercising and doing powerlifting.
And one of the things she also said was that people were really negative to her, going back to the gym and exercizing. And that she really didn’t have too much of a stroke or something like they tried to play it down. Like, how could you be back at the gym within a few after your stroke?
That annoys me so much.
And I was so shocked then and I thought, maybe it just happens. You know, in Australia, crazy people say that in Australia, but it sounds like crazy people are everywhere.
I can’t believe it. I can’t get over that. Well. It says more about them that it does you. Isn’t it really interesting that of all the comments that they can make they make that comment.
And it just goes to show how far we still have to go. To bring awareness to the challenges that people face, you know, whether they are physical challenges, because of stroke or mental health issues that are invisible, then we can’t see.
We still have a long way to go to bridge the gap between the rest of the community who seems to be completely oblivious, and completely unaware of what people experienced in life and what they go through.
And of all things, why don’t just you be nice instead of mean?
Future plans beyond Exercise After Stroke
So where do you see yourself? I know, this is a really, you know, weird question. But where do you see yourself in the next five years? Like, what are you trying to overcome and achieve? And what are some of the goals that you’d like to fulfill?
I want to go to med school. I doubted myself, because people told me that you have to have two hands to go to med school, and you actually don’t. So I’ll see about that when I get to med school. And yeah, I hope to continue to keep ski coaching once I get back on my feet, I’m taking a year off for myself to get back in the game. And hopefully next year, I will continue to be coaching. And yeah.
That’s beautiful. If you get to med school, there’s so many things that you can do. That don’t need to handsome, it’s such a silly thing to say. Unless you’re planning on being a brain surgeon.
Maybe then you really need two hands. But until then, there’s so many things you can do that don’t require two hands in medicine. So it would be awesome to have a stroke survivor, be also a neuroscientist.
Because, you know, you’ve got a lived experience of what it’s like to have a stroke. And I think you would offer amazing insight. And you would be much lovelier doctor to be around. Because you get it you know, what’s going on? You know what it’s all about. What has been some of the hardest things what’s been the hardest thing for you to deal with and manage during the stroke?
My speech is hard. I took see here it goes again. I have spent countless hours of intensive speech therapy to get to where I am now and my arm. My fingers have not yet opened up, and I’m hoping that would with botox injections in my arm. That and intense physical occupational therapy, my fingers will open up, but I can’t braid. I can’t cut.
It’s not happening yet. I noticed that you’ve used the Saebo glove. Is that something that you use often? Is that part of your kit?
Yeah. I have plenty of things in my kit. But Bioness is one of them. Saebo glove is one of them. It lets your fingers like, take a break once in a while because it opens up your fingers with these rubber bands. And you can do grab things more easily. And, yeah.
And is it something that you use during the day? Or is it something that you use at the end of the day? Or do you just use it all the time?
Depends on how my tone is. And also, if I’m working out, if I’m working out at the gym, I don’t use it, because it keeps me from my grip Isn’t that great and so with a Saebo glove, it’s really not that great. So I can’t hold the weights and stuff. But for open exercises like a downward dog, I’ll use it.
Yeah. It seems like it’s a pretty, it’s not that complicated. Is it? It just seems like you put it on and you adjust it. Put it into any position. Is it terribly expensive? What do they cost?
$300. But I got a deal on I contacted Saebo, and they said, Here’s 25% off until July. And that’s expired. So you could get, I could contact Saebo to see if they will give me the 25% off for life.
You’re saying it’s worth contacting them if anyone’s listening and the thought of getting a Saebo glove worth contacting them and saying, Hey, give me a discount?
Yeah, fair enough. Hey Lilia, I’ve had a real good time chatting with you and learning a little bit about you. I really appreciate you coming on the show. Thank you so much for sharing your story and for creating a page on Instagram, that’s about exercises for stroke survivors.
There needs to be more about that. All the best with your recovery. I hope everything goes well. And I look forward to interviewing you when you enter into a course to become a neuroscientist.
Thank you so much for having me on the show.
Discover how to heal your brain after stroke go to recoveryafterstroke.com.
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