Young Stroke survivor Kelli Geuting experienced an Ischemic Stroke at age 32 the origin of which remains unknown. Learn what Kelli did to help heal her brain after the stroke and how her stroke recovery is coming along.
Instagram: www.instagram.com/kelliegeuting/
Highlights:
00:54 Introduction
04:20 The first symptoms
11:58 Couldn’t figure out what caused the stroke
14:41 Oral contraceptives may potentially cause a stroke
21:31 The deficits after getting out of the hospital
32:32 Negative mindset
41:32 Stroke recovery timeline and expectations
53:22 Trouble navigating anxiety and acceptance
01:01:41 The stroke recovery diet
01:10:24 What’s in store for Kelli Geuting
Transcription:
Kelli 0:00
Honestly, I struggled, in the beginning, a lot with the fact that it was an ischemic stroke and that it was not explained by anything aside from there was a blood clot, and I think that we hear so many, like, there’s so many negative connotations around developing a blood clot and as a therapist, you know, I admit that I probably had my negative connotations about it. And preconceived notions and I think that it was, hard to think about how other people would think of me.
Intro 0:46
This is recovery after stroke with Bill Gasiamis, helping you go from where you are to where you’d rather be.
Introduction
Bill 0:54
Bill from recoveryafterstroke.com. This is Episode 99 and my guest today is Kelli Geuting. Kelli experienced an ischemic stroke at age 32, the origin of which is still unknown. She’s well on the path to recovery and in our chat, Kelli shares some insights into her approach to help heal her brain after the stroke.
Bill 1:15
Just before we got started some time ago, I launched recovery after stroke coaching. It’s helpful for people who feel like they aren’t getting the support they need once they’re sent home from the hospital. If you have fallen in the cracks between hospital and home care and desire to gain momentum in your recovery, and do not know where to start, this is where I can help.
Bill 1:36
I’ll coach you and help you gain clarity on where you are currently in your recovery journey. I will help you create a picture of where you would like to be in your recovery 12 months from now, and I will coach you to overcome what’s stopping you from getting to your goal.
Bill 1:52
Right now for everyone interested in learning what recovery coaching is about you will get a seven-day free trial. To decide if it’s the right fit for you. So take advantage of the seven-day free trial now by clicking the link below if you’re watching on YouTube or by going to recoveryafterstroke.com/coaching, if you are listening online.
Bill 2:16
Finally, if you love the Recovery after Stroke podcast and you think it’s helpful, please share it and tell others about the podcast so that they may benefit too. If you’re watching on YouTube, please give us a thumbs up and leave a comment. I’d love to hear from other stroke survivors and I answer all comments personally.
Bill 2:37
You can also go to iTunes or your favorite podcast app, and also give us a five-star review there. That’ll help search engines find the show better and put it out to more people. Also, if you’d love to connect with me on Instagram, just go to Instagram.com/recoveryafterstroke or facebook.com/recoveryafterstroke, and just send me a friend request.
Bill 3:04
Oh, and one more thing, I wanted to let you know that you can also download all the words of each episode as a PDF. It’s perfect for you if you prefer to read and take notes or highlight different parts of the interview for future reference. It’s a great way to learn and it helps retain new information to memory. Just go to recoveryafterstroke.com. Click the image of the episode you just listened to, and at the very beginning of the page, you will see a button that says Download transcript. Click the button, enter your email address and the PDF will begin download. And now it’s on with the show.
Bill 3:44
Welcome to the podcast Kelli Geuting.
Kelli 3:47
Thank you. Thanks for having me.
Bill 3:49
Yeah, thanks for being here. You’re very active I’ll call it our community in Instagram land and your page says that you’re a proud stroke survivor. And I love the idea that you can be proud of your stroke, survival, your journey, whatever it is that you’ve been through. Tell me a little bit about what happened to you at the beginning.
The first symptoms
Kelli 4:20
Yeah, it’s taken some time to get to that point for sure. And so I think it’s important to kind of go back to a little bit before the stroke and who I was, you know before everything happened because it played a big role in how everything played out. So I am originally from Delaware which is on the east coast of the US and I am a physical therapist, and my husband is in the military.
Kelli 4:51
Which is why right now we are stationed in Hawaii. So it’s just my husband and I and my dog and both of our families live 5000 miles away in Delaware. And we’re in Hawaii and my husband is gone for work about 50% of the time. And so quite often, it’s just me, and he’s gone at work. So that kind of has played a big role, in my recovery and the whole process. And kind of, I think some things that I’ve had to go through which have forced me to be a little bit more independent because I’ve kind of just had to.
Kelli 5:40
So knowing all of that, the day the stroke happened was December 3rd, 2018. So we’re coming up on a year and a half, not quite a year and a half. It was Monday morning and I’d just woken up to go to work. I was working in a physical therapy clinic on our local Air Force Base, working with active duty and retired veterans and outpatient clinic so I had just woken up to get ready for work.
Kelli 6:16
And as soon as I woke up that morning, I was hit with this wave of dizziness. And it was immediate as soon as I rolled over in the bed, I had never felt anything like that before in my life. It was strange and alarming, but I was kind of like alright, I’m, I’m busy and, and, and so I tried to get out of bed and I was immediately nauseous and vomiting.
Kelli 6:44
So I knew that I was sick didn’t know at the time how sick or what was going on. My husband was home that morning, but he had to leave his The boat that he was stationed on was going on patrol for a week and they were leaving that morning. So he got me, you know, all settled, I assured him that I was fine. And that, you know, I was just sick, I probably just had a virus or something strange.
Kelli 7:17
And I assured him that I wasn’t going to go to work that day, and then I would be fine. And, and he, you know, stayed as long as he could, but then he said, Okay, I gotta go and he left and was going to be gone for a week. And so that day, I stayed on the couch all day long, and the dizziness never subsided. And so I went in and out of sleep and I would sleep for a while and I would wake up and I would try to stand up and I would get sick again.
Kelli 7:52
So it was just like, I’m pretty relentless all day long. And then at the time because you know, I’m a physical therapist, your mind starts going as to okay what, what could this be? Why am I experiencing this dizziness and nausea I thought that I was experiencing vertigo. And so it really, I have never had vertigo myself, but I have treated other patients who have had BPPV and so I assume that that is what the problem was.
Kelli 8:31
Naively I was kind of annoyed at that thought because I was like, Man, this could knock me off my teeth for a couple of weeks like this could be annoying. And so I just said, you know, I’m gonna sleep I’m gonna do you know, whatever I need to do. Fast forward to that evening, I had been sleeping all day long because I couldn’t do anything else and then that evening my husband called me to see how I was doing and he let me know that the air conditioning on their boat had broken so they were coming home unexpectedly. I was relieved at that point because I’d been pretty sick all day and I knew that something was going on.
Kelli 9:19
And I was relieved just that he said he was going to be home. And so he came home a couple of hours later and saw how sick I still was, and pretty much insisted on taking me to the hospital. At the time, like, I just needed to go to bed. It’s not that serious. I just, all I wanted was sleep. I just wanted to go to sleep.
Kelli 9:48
So anyway, we kind of argued about that a little bit and then I ended up giving in and he took me to the emergency room, and by the time I got to the hospital I couldn’t walk anymore. I couldn’t lock myself into the emergency room. And so he had gotten a wheelchair and you know, gotten me checked in. And I can feel at that point that my symptoms were progressing.
Kelli 10:16
When I look back on it now I can see, you know, all of the red flags, but in the moment I just knew like, I just feel so sick, like I just want to sleep I want to lay down. And it wasn’t until that night, I waited in the waiting room in the emergency room for a couple of hours and I was progressively getting more sick.
Kelli 10:41
And eventually, they took me back and started two different testing procedures. Once they did the CAT scan of my head, at that point, things started moving rather quickly because they were already able to see the stroke in the CAT scan. So, I had a CAT scan, and then immediately after that I had an MRI, which they were able to visualize that I was having a stroke the MRI, initially diagnosed it as a dissection of my vertebral artery.
Kelli 11:20
And it wasn’t until I believe it was the next day that the neurosurgeon came back and said, You know, we’ve looked at it more like I’ve looked at the images more, and I don’t think it was a dissection. I now believe it was an ischemic clot, that completely occluded your vertebral artery.
Bill 11:43
So how old were you at the time?
Kelli 11:47
32.
Bill 11:48
32, and you had an ischemic stroke. And was there an underlying cause now, have they been able to determine the underlying cause?
Couldn’t figure out what caused the ischemic stroke
Kelli 11:57
No, no, and that is getting easier I guess to kind of digest that information with time as time goes on when it first happened, that was the biggest priority was trying to figure out why it happened. I did not have any medical history whatsoever. I’m 32 years old, perfectly healthy, and my family’s healthy. I’d never had any kind of other conditions that would have brought up possible risk factors.
Kelli 12:39
And in the end, my neurologist said, you know, you were on oral contraceptives at the time. That could have been the cause. It might not just be in case, don’t take that medicine anymore, and it probably won’t happen again. Yeah, so that was difficult to deal with but at the same time, I didn’t have an exact reason as to why it happened. That is really what spurred me into it. Okay. I don’t know why this happened. So I’m going to make it my mission to now live the healthiest life that I can live. So that you know, I can do anything that I can to maybe hopefully prevent it from happening again.
Bill 13:38
Yeah, well, you seemed like you were seriously fit anyway.
Kelli 13:43
I wasn’t, I was not seriously fit.
Bill 13:46
Oh, that’s right. Yeah, no, you’ve got some serious before and after you’re seriously fit now. But you might not have been in the past.
Kelli 13:54
I was not in the past. No, I was very much in that. I like to say I got married, and I tried to keep up with my husband in terms of going out to eat and you know, definitely gained some weight during that time. And it had not caught up to me to the point yet of having any other medical conditions. I didn’t like I wasn’t overweight to the point where I had high blood pressure or heart disease or anything. I mean, I was only 32. So it very well could have caused issues later on. But you know, none of that caused the stroke.
Oral contraceptives may potentially cause a stroke
Bill 14:41
Yeah, it’s pretty dramatic that a 32-year-old can have an ischemic stroke and not have any real underlying causes. And then there’s a little bit of potential that maybe the oral contraception that you were taking, maybe contributed to that. There’s a lot of discussion about that on the internet about the possibility that oral contraception may, for some people cause an increased risk of stroke.
Bill 15:08
But, you know, I think most people don’t look at the small print on the packet of something like an oral contraceptive, you know, to make sure that cause something else they are taking it because they want it to achieve a certain outcome. And it usually does. And you don’t look back on it, you don’t reflect on it until something else happens.
Bill 15:34
And this is the challenge. And one of the issues is that I think doctors lack a little bit of time, patience, and energy. They don’t put that into really seriously explaining to people what they’re getting into. I remember having a coaching client a couple of years ago who was taking an oral contraceptive for medical reasons not associated with pregnancy not associated with trying to avoid pregnancy, but she was taking that for about six or seven years.
Bill 16:11
And at the six or seven-year mark, we started talking. And when she told me about all the different things that were going on in her life, and she mentioned that I asked her about it. And she told me that she was taking it and had been for such a long time. She doesn’t know whether she should still be taking it because she hasn’t followed up enough times with a doctor to work out what the next step was.
Bill 16:34
So she kind of started this thing, and then it just continued forever. And then when I asked her, don’t you think it’s about time you spoke to your doctor to get a bit of a follow-up on your condition and to say whether or not it’s run its course and whether you guys have resolved it? And she kind of said, Well, yeah, I think so. And eventually, she went, a week later, she went to the doctor and he said, yeah, you don’t need to take that anymore.
Bill 17:01
And it’s just crazy that people do things for such a long time. And don’t have the insight or the foresight or they don’t have the curiosity to just go back and ask. And then I also think it’s just as bad and probably worse that the doctors who put you on this stuff don’t at some point go. I wonder what this lady is doing. You know, is she still doing that? Is she still okay, what’s happening, there’s no follow-up, you go there, you get treated, and they never speak to you ever again. There’s never any follow-up. It’s just crazy.
Kelli 17:38
Right, and I mean, in most cases, you know, the doctor will ask you, okay, are you still good on this medicine? Are you still happy with it? And if you’re not having any complications then why change it and, and, you know, I think a lot of us, me personally like, I only read that it would be, you know, that it would possibly increase your risk of having a stroke that’s written on the fine print, just like any other medication you take has potential risks and side effects.
Kelli 18:12
Now when you see the commercials on television or whatever, you know, new medications out there, they say, it may cause this this this but in most cases the reason that you’re taking it outweighs you know, the small chance of that possibly happening. And so, you know, I think in all cases, hindsight, is 20-20.
Bill 18:38
How long did you spend in the hospital?
Kelli 18:45
I was in the hospital for ten days, I was in the ICU for three while they were monitoring the swelling in my brain and trying to determine whether or not I was going to need to have any surgical intervention, which I did not. So the swelling in my brain stopped. So they moved me after three days from ICU to a regular medical floor and I was there for another week. And then I went from there to an inpatient rehab facility. And I was in rehab for just sort of three more weeks. So it ended up being about a month total I went home on New Year’s Eve, just before the start of 2019.
Bill 19:40
Wow, that’s so cool. That’s a great New Year’s Eve. You probably didn’t celebrate the same way that normally would happen would that be right?
Kelli 19:49
It was a little different, (inaudible) I took a nap but yeah, it was important. To me to be able to start the new year at home. It’s something that you know, I had talked about with the doctor as you know if, if I’m ready to go that would be a goal to be able to get home by that time. Because, you know, I was already spending Christmas in the hospital. You know, it would have been nice to spend New Year’s Eve at home and just, there was just something kind of celebratory about getting to start that year. at home.
Bill 20:36
Yeah, I love it. I love it. I got to go home on Christmas Eve. So I had the same experience, you know, to be home for Christmas Eve was a real big deal. A really big milestone, and it was there’s no better way to celebrate Christmas than to be out of the hospital fresh with a scar on your head and all that kind of stuff, but still at home with the family. So, everyone, I think everyone came over. And it was just a real sort of chill Christmas. But it was so good. to not have to do that in the hospital and bring everyone to the hospital. It wasn’t going to be fun. Tell me about what did you did you experience any deficits after you came home that you had to recover from or that you’re still currently recovering from?
The deficits after getting out of the hospital
Kelli 21:31
Yeah. Okay, so as I was in the hospital it was kind of a strange experience for me because you know, everything you read in the textbook is when something happens all at once as you lose, you know, the textbook tells you you’re going to lose your feeling all at once or you’re going to lose your motor control. All at once.
Kelli 22:01
In my experience, it happened my loss of function happened very slowly throughout the first night that I was in the emergency room. So when I went into the emergency room, I was still able to move all of my extremities. I still had sensation, I still was able to walk, I was losing, I needed help to walk, but I could still stand and do it. And then by the next morning, I no longer had any muscle activation on my left side, I couldn’t wiggle my fingers and my toes, and I had a very, very minimal sensation on my left side.
Kelli 22:43
I also had a double vision at that point and my proprioception, when your proprioception goes, was a strange feeling. You know, the doctors would come in and do their neuro taxed and they would hold your arms up and ask you to hold it and they would leave the room and I would ask my husband, my arm still up in the air, like Where, where, where’s my arm like I could not tell where it was unless I looked at it.
Kelli 23:15
So that was a very strange feeling. So it took about the first 24 hours or so before I started to be able to wait a little bit. And the muscle strength has come back very, very slowly over time, although I am happy to say now I have pretty good strength. bilaterally on both sides, I do still notice a difference from my left side to my right notably my left side gets tired faster. So it fatigues faster when I’m out hiking or going for a walk my left hip and my left leg get tired much faster than my right do anything in like weight bearing on my hands, I can just tell like my shoulder on my left just get tired faster.
Kelli 24:19
But that strength and endurance are improving. One thing that has not improved, but it did improve a little bit from the beginning, but then it kind of stalled out was the sensation. So I still have a sensory deficit, basically from my left ear down to my toes. It feels like pins and needles all the time. Feels like your arm has fallen asleep and woke up.
Kelli 24:54
When I have treated patients in the past who have had neuropathy, you know as a therapist and never quite understood like, how are you okay with that? Like how do you deal with the fact that you can’t feel your leg? And now I’m like, Well, now I know you just get used to it after a while.
Bill 25:14
Yeah, and it’s strange. I have the same thing. And I would say that my numbness pins and needles, all that stuff it happens literally from the middle of my base across. And one of the strange things that happened to me and my mom caught me the other day and my ever-suffering wife caught me as well, a little a few days earlier. Is if I have a runny nose, I can’t feel it on that side.
Bill 25:47
And if it’s happening on that side, but not on this side, the little bit of snot could sit there for a little while and I don’t know when the beards are not there, it kind of does the trip a little bit further along, you know, but when the beard is there, it stops there and Christine will look at me and go, can you go wipe your nose, please?
Bill 26:16
So I just have to say, Well, yeah, okay, thanks for letting me know. Sorry, I can’t feel it. I appreciate you telling me not to worry about it it’s all good, but we’ve kind of got to that point where she rolls her eyes. She tells me about it. She knows exactly why it’s happening. But I think the thought of it, the thought of what’s happening is just what’s putting her off a little bit. So that’s interesting. And now that you have this experience, and of course, I would rather you didn’t know what it was like, but now that you have this experience you know, what it feels like? How has that made you a better therapist?
Kelli 27:00
Yeah, so it changes your perspective on things quite a bit. And, you know, from the very beginning, I had, you know, doctors and friends and everybody telling me, you know, just think of what a better therapist you’re going to be now you can empathize with people in such a different way. And so, that has kind of been my mindset from the beginning as you know, just being able to personally relate to, obviously, a whole different group of people that I couldn’t relate to in that same empathetic way before.
Kelli 27:41
I’m not to the point yet where I’ve been able to return to work so, you know, still and, yeah, just one day at a time with that, but, I definitely can see things in such a different way now, but at the same time it has given me a different perspective on some of the other conditions that I treated as well. Whereas you know, I would often get you to have a lot of people who come in with the general pain like a general knee pain or a general shoulder pain, and in a way, I don’t want to say it makes me less sympathetic to that but it just kind of give you a little bit more of that hard exterior when you’re talking to somebody like I know my, husband jokes around because you know, my husband has me as his like in house physical therapist and so he’ll ask me all the time about like aches and pains and he jokes around that my bedside manner has gotten worse because now I’m much blunter. And I’m like, look suck it up.
Bill 29:12
I know what you mean. I think what’s interesting about that is people who I’ve come across who will have a session of whinging or moaning or groaning, you know, a pity party, let’s call it, you know, people like that. It’s okay to remind them every once in a while, hey, and you don’t have to make it about you. You don’t have to say, you know, I had a stroke and you know, you’re not having a stroke. So you’ll be alright.
Bill 29:42
You don’t have to say that. But you can say in the scheme of things, the challenge that you’re experiencing with you know, the toe that you stubbed isn’t gonna be that bad. You know, everyone else has probably stubbed their toe in their lifetime and I’ve got over it. So you could comment on that.
Bill 30:05
But I have done it when it’s necessary. And in probably the last eight years, it’s only been necessary a few times, I have done the whole thing of you know what, what you’re talking about is just a load of bullshit. Like, it’s not important. You don’t need to continue down this path of whinging and moaning about that particular issue.
Bill 30:28
It’s minor in the scheme of things. Other people are going through far greater challenges than you. And you just need to be grateful for what is happening. You know, that is not terrible in your life right now. And if I have the right relationship with the right person, I can do that. And it’s about having almost permission to put someone in their place nicely or abruptly or whatever, where they will take it on. board as information to adjust their mindset at the time, whatever it is that’s bothering them. So I know what you’re saying. And at the same time, that issue could be the biggest problem for that person at that time.
Kelli 31:21
Yep. Exactly. And I agree with that. 100%. And that’s where, you know, I think that it’s almost a little bit harder now to figure out an appropriate way to communicate with people because I never want to minimize what anybody else is feeling at all because I don’t want to be minimized in you know, in any of my experiences, but I also never want to compare what I have gone through with what somebody else has gone through because it’s all a matter of perspective, you know.
Kelli 32:00
Like you said that knee pain for somebody who’s been completely healthy and you know, able to run marathons and you know, do all kinds of stuff without pain. If you now have pain, like that is the biggest thing in your life. And so I never want to minimize that by telling somebody else. Well, you know what I went through, but at the same time, yeah, it’s just I think it’s figuring out a different just a different way to communicate.
Negative mindset
Bill 32:32
Yeah, my dad’s in his late 70s and a year ago he had knee surgery to replace his knee, and up until that time, you could count on one hand the amount of times he had been to hospital for something serious. And that is a great run. He went through 75-odd years of really being unscathed, and he’s blessed for that.
Bill 33:03
So this knee surgery was more about getting him healthier and better and more physical and more able to get around. And of course, he needed some time on his back because he couldn’t be on his knee immediately because of surgery. He went into almost a deep depression within two or three weeks, that time when he was in rehabilitation and they were strengthening his leg for him and teaching him how to use his new knee and all that type of thing was such a difficult time for him and then the rest of the family because we had never seen him like that before. And instead of thinking about the future possibilities, all he did was think about what he was not able to do.
Intro 33:51
If you’ve had a stroke during 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 recover? What things should I avoid? In case I make matters worse, doctors will explain things. But, because you’ve never had a stroke before, you probably don’t know what questions to ask.
Intro 34:16
If this is you, you may miss 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, recoveryafterstroke.com and download the guide. It’s free.
Bill 34:51
And that put him into a spiral of, of a terrible in a terrible situation so and even to sit there and try and have a conversation with him to say, hey, soon it’ll heal and you’ll be able to get back to your regular tasks and everything’s gonna be fine. Even that was near impossible he was focusing on the right now the right here, and you could see it just getting worse and worse, every single day terrible and he got the first time we saw a glimpse of hope that he was going to get better was when he was able to get into the car for the first time with my mum driving, and that fact that he was in a car and he was able to do things made him emotional and he got really sort of teared up.
Bill 35:55
And that was the first glimpse of hope that he was going to get better. So talk about making this knee surgery, the biggest problem in your life ever. He did it, he just went through the roof and you couldn’t intervene. And I’m sure his therapists who have seen him many, many times in their attempt to rehabilitate his leg would have said to him, you know, we’re going to see you get better, you are going to get better, you are going to get on your feet.
Bill 36:26
But he gave himself a timeline. That was not the right time. So he thought, I’m going to have surgery, I’m going to be on my feet in a week. And because that didn’t happen, that threw him out. It’s a great example for stroke survivors to go to this point to understand that the timeline, that if you set yourself a timeline and you don’t achieve it, that is the time to get more motivated to do more work to get on your feet. It’s not the time to get depressed and worry about the fact that you didn’t make the timeline Time is something that you’re going to have plenty of. And things change after a stroke, and you have to do things a little bit differently. Did you notice that type of experience?
Kelli 37:12
100%. And it’s, it’s been very interesting too, to kind of watch that over time. And because I know when I was still in the hospital after I had had the stroke, and you know, I know that things did not look good on the scan. I know my brain didn’t look good on the scan. I know that my (inaudible) wasn’t looking good.
Kelli 37:43
But all of the doctors who came into my room were very positive. They were very encouraging. And they were saying, look, you’re so young, you’re so healthy, like, you’re going to bounce back, you’re going to be fine. Like you’re going to go back to work and they were just very, very sure of it. And I think, because they were so sure of it, that gave me the belief that I needed like, okay, this, this is not good right now, but I can work for it like I have things to work for.
Kelli 38:19
And so, and because of that I, you know, very much set a timeline in my head that in six months, I was going to be back to 100%. And I was going to be back to work and it all just has to be, you know, just behind me. As time went on and I do I think that in the beginning, having that much encouragement from the medical professionals, my family, my husband, my friends, and everybody being so positive and encouraging gave me It did give me more strength to push at first and they gave me that you know that drive to think like okay, I can do this.
Kelli 39:11
But then once that six months happened I did go through that period of like well this is not where I thought I was going to be in 6 months like I thought this was going to be behind me and then when the one-year mark hit like I had like a lot of anxiety a lot of like build up to that one year mark thinking like okay, this is an anniversary like this is a big deal and I had really built it up in my head and I was thinking again the same thing like I’m not where I thought I was going to be in a year like this is not the way that I thought it would go like I still have pretty significant deficit and like, like my biggest deficits now are more surrounding balance and coordination because my cerebellum was pretty badly damaged.
Kelli 40:09
And so the balance and the coordination are things that, affect us so much more than you really and truly realize until it has happened. And, so realizing at a year when I wasn’t again where I thought I was going to be. It’s very interesting because after that year passed, I felt a sense of relief. And I felt this sense of relief, because I was like, oh, like I built this up and built this up and built this up. And a year passed and I’m still okay, I’m still working and still like working on these things.
Kelli 40:56
Things are still getting better. And it’s so funny because my OT that I was working with at the time, she was like, What? What do you think is gonna happen on day number 366? Like, do you think that your body is just gonna stop making progress and that you know, wherever you are, you’re just gonna freeze in time? And I was like, well when you put it like that, I guess that does sound a little ridiculous. But you know, at the moment, like, I guess yeah, that’s what I thought. And so it’s funny because I saw her the week after that one-year mark, and she was like, so did anything happen on day 366? Like, no, I’m I’m still progressing.
Stroke recovery timeline and expectations
Bill 41:42
Yeah, calendars almost need to be removed when it comes to stroke recovery if you can. And everyone does that anniversary thing and I celebrate my anniversaries. But I remember people saying to me, how are you going and I would say, I’m 95% done, that 95% done. I used to say that at the very, very beginning, and then I said that at two years down the track and three years down the track and it’s 95% I was noticing improvements and it was accurate, I would have said that I feel 95% but I realized that that last 5% is made up of so, so much work and effort, it is the require the most time, effort and focus than any of the other recoveries up until that point and like you, I decided that I was going to get as healthy as possible.
Bill 42:45
Work out how to learn how to decrease the inflammation in my brain. I learned how to support myself to reduce the fatigue you know, learn how to support the brain to Increase memory so that memory loss wasn’t happening so much. and decrease the amount of headaches that were happening, and everything that I did went into achieving those outcomes.
Bill 43:13
I had more good days than I had bad days and they started the good days started to accumulate, which meant I started to get momentum, which meant my 95% even though it was still 95%, two years down the track, was a different version of 95%. I had grown and learned and overcome so much, I’d lost a lot of weight. And I had lost a lot of weight without exercising.
Bill 43:38
And that was a bizarre thing for me because up until my 37th birthday, everything that you had to do was to lose weight was run, join the gym, do weights, go to aerobics four times a week, you know, all that stuff. And I did none of that because I couldn’t. It was the time when I learned the most about myself about recovery and what you have to do to your mindset to enable you to continue moving forward and moving forward.
Bill 44:08
And that is why the podcast exists so that we can have conversations like you and I are having. And we can tell people that what you’re expecting is all good. And when you hit that bump, and you don’t exactly know how to get beyond it, well, this is how we did it, or this is how another person did it. Or this might help you or here’s a bit of information that you didn’t know you needed to know.
Bill 44:33
And that’s what motivated me. And then the work continued and more and for me, to continue the stroke recovery journey, I needed to be accountable. And I needed you guys to keep me accountable for that. What I’m saying is that the community that we belong to on Instagram, and then and then doing this podcast and getting in touch with you and all the other 97 people before you that came on the podcast makes me accountable.
Bill 45:08
Because I’m not going to come on here and tell Kelli that, you know, I’ve had a relapse, and I’m eating again and I started smoking and drinking and partying all night. There’s no way I’m going to come on and tell you that. Because that is not what I’m about now, what I’m about now is this recovery journey and like you, I’m proud of my recovery journey.
Bill 45:32
And I’m proud of my experience with stroke. And, and that’s what it was that motivated me to contact you because that’s what you said. But also, you’ve gone on this journey to be responsible for your health and well-being in your recovery and I love that. And the before and afters are amazing. So tell me about how you got to that point to take responsibility for your recovery.
Kelli 46:00
Yeah, it happened in baby steps. So I think that if I had put a lot of pressure on myself to change a whole bunch of things all at one time, I think that I would likely have failed or not, you know, I would have gotten frustrated. But I recognize that, that there were things that I could do in terms of improving every day so when I got home from rehab, you know, it was my husband and myself and the dog and my husband was, you know, home for a little while and then he went back to work and it was just understood like, your job now is your rehab.
Kelli 46:58
When I came home from rehab, I was still walking with a cane, I was not able to drive. And I had to use a chair in the shower, I was not able to stand up long enough to prepare a meal for myself in the kitchen. Like you know, I felt pretty helpless and so, but at the same time, like, okay, that’s a lot of things that you have to work on.
Kelli 47:01
That’s a lot of goals where like, if you can just start to stand up for a little bit longer if you can just start to you know, improve your balance a little bit that you can get around and like key, it’s going to open up this door and this door and this door and so when I viewed it as your job is to rehab like, it’s not your job now to be at home and to sit on the couch and watch TV all day like yes, I guess I did that and I gave myself grace and you know, I I had to take a lot of naps in the beginning.
Kelli 48:02
And at the same time, I knew that I needed some sort of structure, you know, working as a therapist for so long like I always worked I’d always had something to do and I needed some sort of structure. And so for me, that came in, in the form of starting with an online fitness program, like I couldn’t go to the gym because I couldn’t drive that and so I couldn’t go to the gym.
Kelli 48:29
I was also at a point where I was way too embarrassed to go to a gym, I was embarrassed that I was 32 years old. I’m walking with a cane and I didn’t want for somebody at the gym to see me stumble and you know, do that thing where like you feel bad for somebody because you see somebody else struggling and I didn’t want anybody to feel bad for me like I wanted I felt like I was okay and like it became a joke very quickly when I was in rehab.
Kelli 49:09
And like my balance was not good but my balance reactions are really good like I don’t fall I might look like I’m going to fall out but I’m not gonna fall and so you know, I didn’t want somebody else looking at me like oh my gosh is she gonna fall and I’m like no. So for me, it was starting a fitness program at home where I had some kind of structure and some sort of like video that I was following and, no, I could not keep up with the trainer on the video, I had to modify every single move of every single workout for the first three or four months.
Kelli 49:52
Luckily, you know, being a therapist I’ve been very familiar with making modifications and knowing you know, knowing a lot about biomechanics and how to move my body and whatnot. But, for me, it was just starting with that little bit of movement. And you know, I couldn’t control at that point, I didn’t have much control over what I was eating because I couldn’t yet be in the kitchen to make meals, I had some great friends and co-workers who were bringing us meals a few times a week and dropping off food, which was just incredible.
Kelli 50:32
And, you know, so I couldn’t control that yet. But I could control my level of activity. And so that is where I started. And then once my activity started improving, and my strength and endurance started improving, well, then I found like, okay, I can, I can make some simple stuff in the kitchen as I can, I can help here and I can do this and so It was kind of like, as soon as I was able to do something physically like, I wanted to take it over like I wanted to do it, I knew what it felt like to not be able to do it for a while. And so, you know, now that I can make myself a piece of toast, I’m going to make this toast.
Bill 51:21
I love that I did that with walking on stairs. It’s not the most fun thing, but the fact that I can walk on stairs means every time I come across stairs, I’m walking on those damn stairs and it’s the same reason why I do it now before I’m rude and ask you how heavy you were. Okay, before I do that. Tell me a little bit about that thing that you said regarding you were embarrassed about walking with a cane.
Bill 51:54
So I just want to understand what’s behind that. What happens? to people, when they think like that when they become somebody who has a cane and they’re embarrassed about it, or do you have an insight into what made you possibly think that I think now on reflection, you’re you wouldn’t be embarrassed about doing something like that. So tell me what was going on right then?
Kelli 52:26
I think, I think there was a part of me that, felt like I wasn’t ready to be vulnerable in that way. I felt like it was me admitting that I couldn’t do something. And at that point, it was, you know, I had been walking and running and jumping independently for 30 years, and then now all of a sudden, you can’t do it and I still to be honest, I, I still had a lot of internal struggle at that point with why the stroke had happened, and whether I had done something to cause it, which is something that I had to work through over some time.
Trouble navigating anxiety and acceptance
Kelli 53:22
And so I think that there was a lot of psychological stuff going on in terms of like, okay, like, thinking like, maybe I had done something to cause it and then now, you can’t even walk by yourself anymore. And it was a lot to be able to handle mentally and psychologically, as, you know, a 32-year-old, perfectly independent person.
Kelli 53:54
I think that I Honestly, struggled in the beginning a lot with the fact that it was an ischemic stroke and that it was not explained by anything aside from there being a blood clot, and I think that we hear so many, like, there’s so many negative connotations around developing a blood clot and as a therapist, you know, I admit that I probably had my negative connotations about it. And preconceived notions and I think that it was, hard to think about how other people would think of me.
Bill 54:41
Yeah, it’s interesting. I interviewed on the episode before this one, Joe Borges, in which he was a guy who experienced a stroke. His issue as well he mentioned result was the cane. The cane was an issue for him and as a man to another man, I said to him, you should have pimped it up and turned it into one of those funky canes, you know, so that it becomes an accessory, not a walking aid. I don’t know if pimping up a cane would have been for you but.
Kelli 55:13
I think for me, I think I was just so motivated to get rid of it. That pimping it up would have been, like accepting that it’s gonna hang around for longer than I want it to be.
Bill 55:24
Wow, there you go.
Kelli 55:26
And in reality, I did not use the cane for very long I mean, I want to say within a month of being home, I didn’t use it at all and, even that after the first week or so I didn’t use it in the house. I only used it when I was going for a walk outside. Yeah, so it wasn’t for very long. Yeah.
Bill 55:54
That was interesting to hear you say that. It’s just that these challenges that we create for ourselves in our head about what it means to be in a wheelchair or cane is so not necessary. I remember though, perhaps I was lucky in that my stroke, my three bleeds happened over three years. And then by the time I had surgery, almost three years had passed.
Bill 56:19
So I had a long time dealing with people who are recovering from stroke and meeting stroke survivors and learning from them. And being involved in groups with stroke survivors, I saw a lot of wheelchairs, a lot of canes, and all that type of thing. So that when I had surgery and woke up and had my left side proprioception issues and all the numbness and all that stuff and couldn’t walk, and I was in a wheelchair to me, it was like, it meant nothing other than this wheelchair is going to help me get around.
Bill 56:48
And I thought that was awesome. You know, I could have this thing and I could sit on it and I could still get around and people could push me from place to place if I needed to. And I didn’t know how long I was going to be in I didn’t know how long it was going to take for me to walk again. But it just never occurred to me that it was a negative thing.
Bill 57:08
And I’m not saying that it should have occurred to you, I’m just saying it never occurred to me. And that’s why I was really curious about what you and Joe said, about the cane, you guys had that different approach. And both of you got the stroke more abruptly than I did kind of got to not being able to walk more abruptly than I did. I got there a little bit longer.
Bill 57:31
And I don’t know, maybe I expected that I might not be able to walk. And again, that took a little bit of the edge off. I thought, well, from this surgery, shit can go wrong. And if it does, right, I might not be able to walk and if I can’t walk well, I’ll just take responsibility like I had the previous three years to be the best version of myself.
Bill 57:53
So that when it’s time to, you know, hit the ground running, so to speak with the recovery then I can focus on that and I had done a lot of work to be in a really good place so that I didn’t have such a lot of work to do after surgery. I had done a lot of the preparation for three years and done a lot of the things that you did. And at my heaviest on medication, I probably got to 92 kilograms. And I’m gonna see how many pounds that is I’m going to go to kilograms in pounds, which is 202 pounds, and I’m about 100 and I’m not six foot tall, so I’m shorter than six foot tall.
Bill 58:45
At my lightest after taking responsibility for my health and well-being and what I put in my mouth, I got down to 78 kilograms which is 171 pounds. So I lost 30 pounds by just focusing on what I put in my mouth and I didn’t feel like I was missing out on food or anything amazing. I was eating heaps of food. It’s just that I didn’t put certain other things in my mouth. So now comes the time when I have to ask you how much you weigh.
Kelli 59:24
Yeah, so I will say that I have. I have lost a total of 95 pounds. Yeah. And so I’ve lost 95 and the heaviest I mean I wasn’t at. I was not as a point you before I went to the hospital. I was not in the habit of weighing myself because I had no idea how much I weighed but at the doctor’s office, the heaviest that was reported after I got home from the stroke was 231 and now I’m down to 136.
Bill 1:00:08
104 kilos and how tall are you?
Kelli 1:00:11
5ft 9″.
Bill 1:00:12
So that is about my height roughly. And that is I’ve never been that heavy and I felt uncomfortable at 200 pounds. So at 231 pounds did you feel uncomfortable? Reflecting now? Did you kind of feel uncomfortable in your body?
Kelli 1:00:31
For sure, for sure. I did. And I had been. And even before having this stroke, I had gone through multiple, multiple times where I said, okay, I’m going to start working out now like I’m gonna I’m going to lose some way like I’m gonna, alright, this is gone on for long enough and mostly because I mean, like we live in tropical warm locations for the past seven years now.
Kelli 1:01:00
You know, on the beach quite often all year round, I was like, Yeah, I’d like to feel a little bit better going to the beach and, you know, whatnot. But to be honest, like, it always came back to I didn’t have I didn’t have a strong enough reason why I wanted to do that more than I wanted to drink the wine and eat the bread and you know, do all of those social things. And I wasn’t I wasn’t that unhappy to where I had a strong enough reason to make a change.
The stroke recovery diet
Kelli 1:01:41
And so after I had the stroke and it’s interesting because I got home from the stroke or the hospital and I never reached a point where I was like, okay, Now I’m going to try to lose weight. I reached a point where I was like, now I’m going to learn how to be healthy. Because if there’s anything that I can do to prevent that from happening again, that’s what I’m going to do.
Kelli 1:02:14
And so I started, you know, learning how to make some healthier choices. I started learning a lot about inflammation, particularly in the brain, and like really, really wanted to decrease that inflammation in the brain as much as I could, which naturally led to a healthier diet. And it led to me cutting some things out of my diet that I don’t eat anymore, but once I stopped consuming those things, I actually felt better and so I was like, Well, I don’t know if it’s, I don’t know if it’s helping my inflammation or not, but like my stance feels better when I don’t eat it. So I’m not gonna eat it. I’m with it.
Kelli 1:03:03
And so, like I was never, during this whole time, I was never, like, actively trying to lose weight. I was just trying to be healthy. And so it’s funny because even my mom, I’d say about like, I don’t know, like six months ago or so I was talking to her on the phone and my mom was like, well, what’s your goal weight? How much do you want to lose?
Kelli 1:03:28
And I was like, I don’t know. Like, I don’t have I don’t have a goal weight. I don’t know where my body is going to feel good. I don’t know where my body is going to feel the best. Like, I’m not trying to lose weight. And so if it continues to happen, well, I know eventually it will stop like, eventually I’ll kind of even out somewhere and you know my body will be happy with it. Where it is, but my goal has always been I want to get stronger.
Kelli 1:04:00
I want to feel better physically. And, you know, I, I’ve had a lot of ongoing brain fog and a lot of ongoing dizziness, and just, you know, physical stuff that, that I’ve done a lot of trial and error and I was like, I want to figure out if there’s anything you know, in my diet or in my daily activity that helps those things. And so, and it never was about, about losing weight.
Kelli 1:04:30
But when it happened, I was like, well, dang, I feel so much better. Like I can just bounce up the stairs now. Like I can chase the dog around the yard, I can, you know, I have so much more energy and so much endurance that I know. I didn’t have it even before this stroke. And so it’s interesting to be able to reflect and to be able to see there’s so many ways where I think I’m stronger now physically stronger than I was before I had the stroke. But then there’s a certain deficit, like the balance and like the coordination that still prevents me from fully being back to where I was before. So it’s, it’s an interesting battle.
Bill 1:05:24
I love the approach that you took. And that’s exactly what I did. I had inflammation in the brain. I was on a medication that said it was going to reduce inflammation and the side effects of that were hallucinations, feeling like bugs were crawling up and down my skin, not sleeping over eating low blood pressure, and high blood sugar, like so many complications, but at the same time, it was supporting the inflammation in the brain.
Bill 1:05:51
And I got curious and I thought, well, how do I decrease the inflammation in the brain, when I learned about the foods I shouldn’t consume that is when inflammation started to decrease. And that’s what I did. I didn’t start a diet, I just stopped eating certain foods, caffeine, alcohol, sugar, gluten, and dairy. And when I did that, and when I did that, things started to get better.
Bill 1:06:16
And that’s, I talk about that a lot. And that’s what I coach people with now and the people who are learning about how to stop supporting their health and their well-being, it’s not about being on a diet, it’s about making the change from the inside out, not from the outside in and what I mean is, you know, I haven’t created a model around that, and I’ll put a link to a video that I’ve done about this model about how people can influence change and it’s I have a proper way like a real reason why.
Bill 1:06:49
How about that for stroke survivors the why becomes just enormous overnight. And then stop by and when you have the reason why is yours flitting from the inside as to what’s important to you, rather than what other people at the gymnasium who are selling your membership are telling you is important, what the latest what the guy that’s selling the latest thing craze or fad diet is telling you is the most important thing.
Bill 1:07:19
And then when you go down that path as you said, I found myself three years later being the lightest, and people are going to me What are you doing? What are you on? And what are you taking and all that kind of stuff? And I was like, I’m not doing anything. I’m not taking anything. I’m just not consuming gluten, sugar, alcohol, caffeine, and dairy. And I thought, well, that’s a bit extreme. How could you be missing out on all that stuff?
Bill 1:07:45
And it was like, Well, I’m not I don’t feel like I’m missing out. I feel like I am more energized, the better. I don’t need caffeine to wake up in the morning. I don’t need to have a cake at my birthday party. Because I never really liked it anyway and I only ate it because other people Cut it out for me and blew it out and all that kind of stuff. So I’m like, this is a completely different version of myself.
Bill 1:08:07
And before the age of 37, I never would have had that insight. before the show, I never would have had that insight as to how to influence myself and my well-being in a way, which was, which was one of the greatest gifts I got from a stroke. And it’s one of the most amazing things and that’s why I talk about it regularly.
Bill 1:08:27
And I started saying a lot of my episodes now he’s like stroke is one of the best things that ever happened to me in the context of growth, actual health, and well-being, because even though I have these deficits, I’m healthier than I’ve ever been. And I’ve decreased my risk of cancer, heart attack, another stroke, all that kind of stuff has all dropped and fallen.
Bill 1:08:48
And now without that, you know, maybe I would have been happier or would have been healthier, unhappy and angry. Risk of, you know, doing something silly because I was doing all the wrong things. And I made excuses as to why I’m not doing a lot of the wrong things all the time or, or that’s a good excuse to have a cigarette or that’s a good excuse to get drunk where I can’t stand up.
Bill 1:09:19
All that stuff was just me just giving myself a cheap reason to not take responsibility for how I was impacting my health and well-being and in my 40s I’ve lost so many friends in my 40s people that I grew up with that are not around anymore because they had suffered major heart attacks, passed from cancer, all sorts of things.
Bill 1:09:46
And they were living the same kind of lifestyle I was and I was I’m just happy to have got away with it. And I’m sad that they’re not around, and that they didn’t get to learn from the challenge that they experienced health-wise, they just didn’t get it. But the second chance and here we are, you and I, we both have that second chance. So it’s cool to listen to how you got there. What are the plans for you? Now? Like what is your short-term vision for stroke recovery? What’s the goal?
What’s in store for Kelli Geuting
Kelli 1:10:24
Yeah, so um, so coming up next, we will go as a family, we have a move coming, and so I’m going to be leaving Hawaii, and in about six, months or so give or take. And so that kind of, I know that I have six months left here to continue doing the best that I can for myself, where I’m just focusing you know, completely on myself.
Kelli 1:11:00
And then I’m going to be moving back to Delaware with my dog and staying with my family. And my husband is going to be deploying to Bahrain, which is in the Middle East for a year, so he’s gonna leave in December. And he’ll be gone for a year or so I’ll be spending a year with family and, you know, it’s going to be an interesting time to be able to continue working on myself, but I’m also at the point now where, you know, I feel so well with, my recovery, and I feel really good about things that I’ve done so far.
Kelli 1:11:42
And, I think that it’s, at least from other people that I’ve talked to, I think that it’s a natural feeling that once you’ve found something that has worked well for you, and that you’re feeling good that you now want to share that with other people. And so I’m starting to come to that point where I’m like, Okay, I have a handle on what I’ve been doing.
Kelli 1:12:06
And, I think it works well for me. And so I, you know, I would like to pay that forward and to share that with other people. And so what that looks like for me right now is that I decided to partner up with a fitness company that I had been using their products for the past year to help me to get to this point where I am now, the fitness programs and nutritional supplements.
Kelli 1:12:36
And so I’ve partnered up with that program to be able to hopefully share that with other female stroke survivors who are looking for ways to learn more about their brain health and to optimize you know, their version of each person’s healthy lifestyle because I know that that looks different for everybody depending on you know where they’re at in life, but I want to be able to share with other people what I have done and you know, hopefully, make some sort of an impact on helping somebody else who, you know, maybe on a different plane or journey.
Bill 1:13:20
That’s beautiful I love that. That’s what is so amazing about this community stroke survivors seem to all want to help other stroke survivors get better, and recover quicker from a stroke. It’s such an amazing thing. And for me, it started selfishly, it was all about me, all the podcasts and all that stuff I was gonna learn from other people is about me, what I didn’t realize was that it was helping other people. But other people so many stroke survivors say the same thing. They want to help other stroke survivors. I mean, there’s no better person to help a stroke survivor than another stroke survivor. It’s such a great thing.
Kelli 1:13:56
And that’s what I think that I’m learning so much of like, we been through such a unique thing? It’s very interesting because no, two people’s strokes are the same. And so, you know, I talk to people all day long and I can talk to 10 different people and they’ve had 10 different experiences in terms of where their stroke was located and what deficits they have and what caused it and so it’s so interesting that all of our experiences and strokes are so different, but at the same time, you still instantly feel connected with somebody you still instantly feel like, okay, they get me like, I understand I feel like I can talk to them differently.
Kelli 1:14:54
And that’s just something that you know you rely on your friends and Your family and so much when you go through this experience, but there’s something different about talking to somebody else who has been through it. And so I think that I’ve found that along the way, you know, a community of people on Instagram that I did not know existed before, a year and a half ago. And now it’s like, well, this is cool. They’re like, get to talk to somebody back and forth who like, who gets it.
Bill 1:15:30
Yeah. It’s another one of those blessings. Tell me what advice would you give somebody that’s just fresh into their recovery and perhaps they’ve been out of the hospital for a few months. And they might be struggling of course, with whatever it is that they’ve experienced the changes the issue around mortality and all that type of thing, what would be some of the bits of advice you might give somebody who’s early on in their stroke recovery.
Kelli 1:16:02
Yeah, so I know a couple of things. One thing that helped me a lot was communicating with my husband and my loved ones about the type of support that I needed that I am extremely fortunate and that my husband was in the emergency room with his notepad taking notes on what the doctor was saying like to be able to communicate that with my family because I wasn’t, you know, going to be able to talk on the phone.
Kelli 1:16:40
And so for us communication from the very beginning was very important and it was something that you know, we didn’t have to establish that baseline too much of communication but, I know I can recognize how important It was for me and my recovery, you know, just being on the same page with you know, whoever is around you, whether it’s you know, a spouse or you know, another family, just letting them know, I know that I used to get frustrated talking to my mom on the phone sometimes because, you know, she would ask me the same questions like over and over and well, how’s your headache today? How’s your headache today?
Kelli 1:17:30
Because I had a headache for three months. It didn’t go away. And so I just got tired of people asking me about my headache. I was like, it’s still there. Like it’s not going anywhere. And then eventually it just disappeared and never came back. But I think like, once, I figured out my voice and you know, in talking about, you know my frustrations and talking about letting somebody know, like, I want to talk about this, like, I don’t want to talk about this.
Kelli 1:18:06
I think just having that communication was really helpful. And I think that the other thing that is extremely helpful when you’re just starting is that concept of don’t feel like you have to change everything all at once. I think just taking, taking small steps and changing what you can control, like the small things that you can control, but recognize that like, if there’s a lot of things that a lot of areas where you want to make change, just do one at a time, because otherwise, you’re going to get so overwhelmed.
Kelli 1:18:50
And so I have a great routine now and I have a great like daily routine that’s working for me, but it has taken, you know, over a year to get to the point where I feel comfortable with my day-to-day routine and six months from now when we move the routine is going to change again. So you know, trying to be flexible with that.
Bill 1:19:16
Well, that’s an awesome way to end the podcast. Thank you so much for agreeing to be on the podcast, sharing your story, and inspiring people. And I wish you the best in your recovery and well done for doing what you’re doing. And I’m just really, I’m just really grateful that you get to be here and share your story with us.
Kelli 1:19:38
I am too, thank you for having me. I appreciate the opportunity. Just share my own experiences.
Intro 1:19:45
Discover how to support your recovery after a stroke. Go to recoveryafterstroke.com
