Etanercept <\/span>the way that it works is it reduces inflammation in the brain. So when you have when you have a stroke, chronic inflammation, and it’s inflammation, that causes a lot of deficits.<\/p>\nAndrew Stopps 24:55
\nSo, if you have the inflammation, Etanercept is gonna work, you know, fantastically for you. But sometimes you don’t have much and the deficits are caused by actual brain damage from the stroke. So and it’s hard to know, you know, whether it’s your deficits are caused, by the inflammation or by brain damage. So it’s it’s kind of a gamble. And I kind of felt going there, and I will and when I arrived there, I felt, wow, what’s going to happen if nothing happens?<\/p>\n
Andrew Stopps 25:34
\nLike, I know, I was saying to everyone and myself, you know, um, you know, accept whatever happens happens. But I knew deep down, I’d be gutted. If nothing happened, and I’ve come, I’ve traveled all that way halfway around the world. And, and there’s no result.<\/p>\n
Bill Gasiamis 25:54
\nYou got your heart set on it. You’re thinking about all sorts of things related to what you will be able to do what you hope you’re going to be able to do how you hope it’s going to feel all the improvements you hope you hope to get. And then there’s that niggling thing in the back of your mind that goes, you might not get anything.<\/p>\n
Andrew Stopps 26:12
\nYeah. And then I would feel like a fraud. Because, you know, I’ve asked all these people for money for help, and nothing happens.<\/p>\n
Bill Gasiamis 26:22
\nNo result. Yeah. The people donating there. Are they aware that there’s a possibility of no result? Have you set that? Have you given that information to them so that they know that you’re going to go there and what happens if you come back with nothing?<\/p>\n
Andrew Stopps 26:38
\nYeah, I had written, and I’ve done some videos that sort of explained how Etanercept worked, and that there were no negative side effects. It either works, or it doesn’t. And I won’t know until I’ve tried it.<\/p>\n
Etanercept helps reduce inflammation<\/h3>\n
Bill Gasiamis 26:57
\nYou know, what you said was interesting that it helps decrease inflammation. One of my main goals during my stroke career was to reduce inflammation in my brain. And, and the reason was, is because I was on dexamethasone, which is a steroid, that helps to reduce inflammation.<\/p>\n
Bill Gasiamis 27:16
\nAnd it’s also used by people who have arthritic conditions. And it does reduce the inflammation in the brain. And it helps recover the brain and heal the brain. But it has a whole bunch of side effects. You’re going to typical steroid side effects, anger, weight gain, inability to sleep, a whole bunch of things. And it was terrible to be on. And because it was so terrible, I just decided to Google, you know, back in 2012, I decided to Google, how to decrease inflammation in the brain.<\/p>\n
Bill Gasiamis 27:52
\nAnd nutrition came up as a main ingredient, the main way to do that, right, so some foods, were going to make inflammation in the brain worse, and some foods were going to make inflammation in the brain better. And what I know now is that if I, for example, pasta, or bread, that they are, they tend to be inflammatory foods, for lack of a better word. And what they do is they kind of switch on the inflammation in my brain, and they make me more fatigued, more tired, they make my deficits worse.<\/p>\n
Bill Gasiamis 28:24
\nAnd it’s kind of like this dance, if I can avoid having bread, or pasta, that particular sugar, for example, is another one. If I can avoid having those foods, I don’t notice my deficit so much. They’re still there. I still feel my arm the way that it feels in my leg the way that it feels. But, but it kind of allows me to settle things down. Which means that the deficit inflammation is temporary, right?<\/p>\n
Bill Gasiamis 28:55
\nSo in a minute, I want to talk about that. I want to talk about how a tenant said, well, let’s talk about it now. It decreases inflammation. But from my understanding, inflammation can be reactivated by me, for example, by doing the wrong thing and eating the wrong foods. What happens in this instance is designed to reduce inflammation. But then does it last?<\/p>\n
Andrew Stopps 29:25
\nYeah, it does.<\/p>\n
Bill Gasiamis 29:26
\nOkay. Let’s leave it at that. It loves. All right. So the day of the flight comes? Yep. Who did you travel with?<\/p>\n
Andrew Stopps 29:41
\nIn New Zealand, to Houston, and then united to<\/p>\n
Bill Gasiamis 29:45
\nFlorida. On your own or with anyone else with you?<\/p>\n
Andrew Stopps 29:50
\nKnow, I work with my husband. I needed to have someone with me. I can’t navigate and I couldn’t ever get to airports alone. Um, I happen to have a whole sensory overload. So I had to have headphones to block out the sound, which is support. Filler Lorazepam on hand, just in case. It was yeah, it was a bit of a bit of a mission to get me there.<\/p>\n
Bill Gasiamis 30:22
\nYou arrived in Houston. And then you’ve got a connecting flight to Florida.<\/p>\n
Andrew Stopps 30:28
\nWell, no, we didn’t actually because my husband is American. So we got we flew to Houston, and then flew on to Memphis and stay with his family for a week. So we got the week before the shot. And then we flew down to Florida. The day before the shot. I had the injection in the morning, and then we flew straight back to Memphis that afternoon. And I spent another week with his family. So it was nice that way. It was it was yeah, it was really good to see the you know, to see the family.<\/p>\n
Bill Gasiamis 31:05
\nIt was less rushed. Therefore, you guys have to pay for less accommodation. You got to see the family. Yeah, might combine all of that. That’s cool. So the day comes to jump the plane again, to go to Florida.<\/p>\n
Andrew Stopps 31:26
\nWell, yeah, because I’m American airports are notoriously bad to navigate. And even worse when you’re dealing with all the deficits from stroke. So yeah, the fly down, though, was I was I was anxious. And then we were delayed and were supposed to get in at lunchtime on the day before, and we got in at 1 am or something. So it was just, it was yeah, it was a nightmare getting there. And I really, I thought is this, is this a sign? Like is the universe telling me not to do this? Because we just, you know, it was so hard.<\/p>\n
Bill Gasiamis 32:09
\nI love it my favorite philosopher from back in the day, Marcus Aurelius had this line, which said the obstacle is the way so for me, it would have been a sign that that was the way to your particular goal there. Do the obstacles the challenges or the problems mean that you were on the right path?<\/p>\n
Andrew Stopps 32:30
\nYeah, it is yeah.<\/p>\n
Bill Gasiamis 32:33
\nYou’re right in Florida. And then what do you do to your accommodation? Do you go directly to the clinic? What happens then? Okay,<\/p>\n
Andrew Stopps 32:41
\nWhen we got to Florida, it was night, and we went straight to the hotel. We got there at about 1 am. And then we had to get up at six the next morning to get out to the clinic because we were about a 40-minute drive. So we had an Uber out to the clinic the next morning. My appointment was at 8:30 in the morning, so yeah.<\/p>\n
Bill Gasiamis 33:04
\nThe appointment, you go to the appointment, you see the medical staff for the first time, what’s that? Like? What’s the welcoming procedure? Like?<\/p>\n
Andrew Stopps 33:15
\nIt was interesting. So the very first thing that happened was a COVID test. We got COVID tested, and then we went through, obviously both negative and we went through and I had about two hours of cognitive functions testing now, okay, I never had cognitive function tests here after the strike. I hadn’t had one since I had the brain tumor. So that in itself was fascinating, because I learned other deficits I had from these tests that that went were discovered, but you weren’t aware up. Like I had aphasia.<\/p>\n
Bill Gasiamis 34:06
\nOkay. That’s interesting, definitely interesting because I know what that’s like because I had after the second blade in my brain, I had a lot of deficits, cognitive function deficits. For example,, the ones that I know, impacted me were, that sometimes I couldn’t remember to begin or start a sentence. Sometimes. I could remember who came to visit me. You know, my timeline was all messed up.<\/p>\n
Cognitive function testing and treatment for stroke<\/h3>\n
Bill Gasiamis 34:34
\nI had no idea I couldn’t work. I couldn’t type an email. I couldn’t do any of that stuff. Like there was a whole bunch of problems. And I remember going to my psychologist and saying to her, that I had all these troubles and she said to me, has anyone done a neuropsych assessment? And I was like, No, what’s that?<\/p>\n
Bill Gasiamis 34:51
\nShe was the first person who introduced me to neuropsychologists and told me that I should go and see somebody and get assessed because they’ll give me a cognitive function test that was the first time I realized that maybe we need to look into this a little a little further, and they’ve mentioned it to me either. Yeah, turns out had some deficits in that space, and then they went away.<\/p>\n
Andrew Stopps 35:13
\nIt just boggles my mind that, you know, we have a, like a traumatic brain injury, and no one is testing the cognitive functions. I just, I kind of get my head around that, that there’s something that they don’t do. But anyway, they discovered I had anomic aphasia. So that meant that, for example, if I was told to name all the words, starting with S, I couldn’t.<\/p>\n
Andrew Stopps 35:42
\nSo you know, that was one of the one of the tests I had to do in a minute name, although words like this now could like, say, two words, and then I’d be going on. And that was it. Even my last name stops. I didn’t say, my husband’s name’s Sean. Like, I didn’t say, and he’s looking at me going. You know, and it’s, it was amazing. And like, I think there were three letters that I had to do that with, and all of them were the same.<\/p>\n
Andrew Stopps 36:18
\nI just sat there going. I couldn’t think of any words, it was. Yeah, it was it was it was amazing. And, you know, that they test to see how much function my right hand had. And it was so actually good having those tests and, and getting, like a really clear idea of what my deficits were and how, you know, how bad they were.<\/p>\n
Bill Gasiamis 36:50
\nIt’s obviously to gauge where you’re at, get a baseline, yes, that they can then determine the impact of the intervention of the medical procedure, right on the shot. Yep. So it’s that’s taken about two and a half hours. Are you hardly exhausted by then?<\/p>\n
Andrew Stopps 37:10
\nOh, my God, I’m, I’m so fatigued at the end of that time. I mean, I was trying not to cry. Because I was so exhausted. I just wanted to sleep. But then, of course, I was ushered through to the treatment room. I think we had like 10 or 15 minutes, where I was just sitting, waiting. And then the next thing I was throwing the treatment room, and there were other patients there as well, having, you know, second or third treatments done.<\/p>\n
Bill Gasiamis 37:46
\nOkay, did you get to meet any of those patients? Did you speak to anybody in the waiting room or anything like that?<\/p>\n
Andrew Stopps 37:52
\nOh, no, because we all had like, separate rooms that we were in? Yeah.<\/p>\n
Bill Gasiamis 37:57
\nOkay. So then you’re being taken into the treatment room. Tell me about that procedure. How does that go? The extra treatment? Yeah, the process before you receive the injection during the time, you’ve done the testing, you know, where your baseline is?<\/p>\n
Andrew Stopps 38:17
\nSo after that, I didn’t meet Dr. Tobinick. I’d spoken to him online but I never met him. I was with his medical staff beforehand having all the tests done. And then he reviewed my results and then he came in and we talked about it you know, my deficits and and maybe the fact that I’m a musician and what I’d hoped to get out of the treatment, and yeah, okay, all right. And then he told me like well, this is what to expect you know, the feeling you when you get the injection and where he does it and how they rotate me head down on the table.<\/p>\n
Bill Gasiamis 39:09
\nWhat does it feel like when you get the injection is this some kind of a sensation that you notice?<\/p>\n
Andrew Stopps 39:14
\nThere is so he said that when you get the injection they do it in the back of your neck between the vertebrae. So it goes into your spinal fluid. He said that some people feel the warmth from the medication going in the bitter thing and the metallic taste. It felt to me it felt hot. When it went in it stayed crazy like a beasting and I definitely got a metallic taste but as soon as he stopped putting the fluid in then that sensation stopped but it was uncomfortable.<\/p>\n
Bill Gasiamis 39:54
\nOkay, for sure. So the penetrating your spine through tool The vertebrae accessing the cerebrospinal fluid through the spinal cord. Yep. And they put an injection in, you have the feeling and, when they’re putting the injection in your face down on a face down where I know.<\/p>\n
Andrew Stopps 40:19
\nSo what I’m doing at the time is I’m just leaning forward, and sorry, exposing the back of my neck. And then once he’s put the injection, and the needle itself is so tiny, like, I didn’t feel the need to go in, it’s just the medication. Then you lie back, and then they rotate the chair. So it’s flat. And then so it’s it goes. So it’s head down your legs above your head height. Yeah, yeah. Yeah. And your legs are strapped down, so they don’t slide off.<\/p>\n
Bill Gasiamis 40:49
\nYeah. And from my understanding, maybe I’m wrong. The reason that they do that is because they want the medication to go through the blood-brain barrier and enter.<\/p>\n
Andrew Stopps 41:01
\nThat’s correct.<\/p>\n
The initial improvements after the Etanercept for stroke treatment<\/h3>\n
Bill Gasiamis 41:04
\nSo from the injection. After the injection, immediately, you’re tipped backward so that your legs are above your head. How long have you been in that position? About three minutes? Okay. And in that time, are you noticing anything happening?<\/p>\n
Andrew Stopps 41:25
\nDefinitely. So the first thing I noticed, when I was laying there was that my fatigue just dialed down. It was like some, some was taking a switch and going fatigued on 10 9 8 7 6 5. And, like, within three minutes, all my fatigue had gone. And my need to cry had gone, it was gone. So that was the first thing I noticed. And then they brought him back up, right, and set me back up. And then I started noticing other things.<\/p>\n
Bill Gasiamis 42:01
\nWhat other things did you notice first?<\/p>\n
Andrew Stopps 42:05
\nSo the pain in my leg was the same, it was like someone taking this dial and dialing it down until it was gone. And this is one of the first five minutes you could hear my speech getting better and better. And I can start to feel my tongue in my mouth. And that sensation was so weird because I didn’t realize that I had no feeling in the tip of my tongue. And suddenly it comes back.<\/p>\n
Andrew Stopps 42:38
\nAnd I had this bright big tongue in my mouth. And it was so so off-putting. And even today, six months later, I had developed bad habits with my speech to compensate for the fact that my tongue was numb. And so I’m trying to undo those habits now.<\/p>\n
Andrew Stopps 43:02
\nBut yeah, that was what happened. And then they gave me a glass of orange juice for the metallic taste. And I took a drink of it. And the taste was just unbelievable. Like, I didn’t realize how my tastes had been affected as well. I had lost some of my taste. And it just was like, This taste was so bright. That’s the only way I can describe it.<\/p>\n
Bill Gasiamis 43:29
\nOkay. Yeah. That makes sense. Oranges. Sweet, bright. Okay, I get it. Yeah. So you’ve, you’ve noticed your tongue is back on board. Fatigue is dialed down, that pain in your leg is dialed down. What else have you noticed?<\/p>\n
Andrew Stopps 43:48
\nAnd then they asked me how my head was. And so I started moving my hand and like, it doesn’t feel like molasses anymore. I can move it freely, is just really weak. And as silly as it’s getting stronger. But yeah, I’m having, to learn how to move again. But at the time, all of a sudden, my head was just not hard to move. Yeah. So I noticed all those things happen within the first five minutes. Was it just amazing?<\/p>\n
Bill Gasiamis 44:26
\nAnd then are you on your feet? At all, when you get on your feet? How soon are you on your feet?<\/p>\n
Andrew Stopps 44:32
\nSo probably. So after I’d had the shot and I was back upright again, they put the camera on, and he talked me about what I was doing and what I was wasting. Then they do some of the contract tests again like the the Aphasia test, and suddenly I can name all these words starting with s and t and other letters. Um, and had jumped from like to, you know, in a minute to nearly Well, 30 words in a minute. It was it was just so quick. Yeah, it was it was so fast how it happened, how I got things back.<\/p>\n
Bill Gasiamis 45:22
\nWhat’s the husband saying? I’d be an emotional wreck. I’d probably cry my eyes out if I were you by then. And I’d have everyone in the room, you know, off the deep end with me as well. Yeah, as a coping.<\/p>\n
Andrew Stopps 45:36
\nIt was it was a bit like that. Yes, it was. Yeah, especially when my hand can start to move. And we realize that now, me being able to play my instruments again was possible. That, yeah, that was when things got emotional. Yeah, because having lost that ability for two years, was in a way heartbreaking. And subtly. You know, seeing seeing the light in the tunnel was amazing.<\/p>\n
Bill Gasiamis 46:19
\nWhat instruments were you a fan of before you had the stroke?<\/p>\n
Andrew Stopps 46:27
\nClarinet saxophone and flute.<\/p>\n
Bill Gasiamis 46:30
\nOkay. So very, I hate to say it this way. But they’re very handsy kind of instruments, right? All the dexterity needs coordination of all the fingers. It’s a big job, right? So you realize that you’re probably going to be able to somehow play it again? Is that what you realized?<\/p>\n
Andrew Stopps 46:51
\nYeah, yeah. Because suddenly, I can move my fingers like independently, which, you know, I mean, I can move my hand, you know, a bit before the stroke a bit, sorry, a bit before the shot, but my fingers have moved like two at a time or, you know, be pulled by other fingers. That might mean Oh, my index finger was hardly moving at all. So suddenly, you know, having all of my fingers back was amazing.<\/p>\n
Bill Gasiamis 47:20
\nSo before, they didn’t have individual control, so to speak, they had moved, or didn’t move together, they kind of had were impacted by each other rather than separate from each other.<\/p>\n
Andrew Stopps 47:35
\nYeah and also, my thumb wasn’t rotating properly. So I had no pinch at all. And I need that, that thumb to be rotated to better put it behind the clarinet. And now it’s rotating.<\/p>\n
Bill Gasiamis 47:50
\nSo then you’re five minutes in, all these things have come back. All those things have recovered, dialed down. You’re aware that some things are going to be possible that weren’t possible before? And then what happens after the first five minutes? What’s the procedure like?<\/p>\n
Andrew Stopps 48:13
\nI think that’s when they gave me the tests on some of the tests again, where I was, you know, scoring sort of low on the tests and to see, you know, how much improvement there was. And then, once they, once they, you know, had done those and seen how much improvement there was. I get that is your sort of central New a really, that’s, that’s the end of it.<\/p>\n
The number of shots required for Etanercept for stroke treatment<\/h3>\n
Bill Gasiamis 48:41
\nOkay, so why do some people need more than one shot?<\/p>\n
Andrew Stopps 48:48
\nIt depends on how severe the deficits are. So, if it works, if the first shot works and the deficits are severe, then the second shot is going to help improve those. And then if they’re severe, a third shot like a month later, will, you know, take it to the next level again. All<\/p>\n
Bill Gasiamis 49:10
\nin all, how many shots did you have to do? Okay, how long after the first show didn’t have the second shot? Awake? Okay, so,<\/p>\n
Andrew Stopps 49:21
\nwe did the same thing, but this time, when we flew back, we didn’t go back to Memphis, we went straight to Houston and then flew back to New Zealand. But there was no that I didn’t get as much reaction or improvement after the second shot. I think because the first shot didn’t say much.<\/p>\n
Andrew Stopps 49:49
\nWe did the same thing. Again. Some went down the night before. I had the shot, and then the afternoon flew, flew out. Okay. So I mean, I could Travel everything coming back after the first shot was just it was chalk and cheese. It was unbelievable.<\/p>\n
Bill Gasiamis 50:08
\nWere headphones necessary? Were you having any sensory issues?<\/p>\n
Andrew Stopps 50:12
\nNothing. I didn’t have anything at all. It was incredible. So suddenly I met at a busy airport with loads of people and flights delayed normally I’d be, you know, doing everything I could to block my senses out. And I was just another annoyed customer because the flight was delayed. It was It was unbelievable. How, yeah, how quick and how much change there was in just a few hours. Getting there and leaving.<\/p>\n
Bill Gasiamis 50:47
\nHow long does the flight from the United States take to New Zealand?<\/p>\n
Andrew Stopps 50:53
\n14 hours.<\/p>\n
Bill Gasiamis 50:55
\nOkay. And what’s that trip? Like normally, when you were going there? What was it like to be on the plane for 14 hours?<\/p>\n
Andrew Stopps 51:02
\nIt was horrible. I had to keep getting up and moving around because parts of me wouldn’t cease up. I had no eyemask headphones to block out sound. It was just yeah, it was it was just I took some sleeping tablets and translated for most of the trip. Because it was just Yeah, it was horrible. Coming back was It was great. was a really enjoyable flight.<\/p>\n
Bill Gasiamis 51:38
\nEnjoyable. You have changed 100% If a flight for 14 hours is enjoyable. Something is going on there. So what you’re telling me is you got back and then what happens you get back and tell me because then you’re navigating your house for the first time since the meditation.<\/p>\n
Andrew Stopps 52:02
\nYeah, that’s the thing. Like, I couldn’t wait to get back because I wanted to see how everything was going to feel. And coming home, it felt like I was just picking up after two years where I left off. And that’s been a good thing and a bad thing. Because I’ve been trying to do everything I could do exactly as before the stroke. And I can’t, because my right side is physically still really weak.<\/p>\n
Andrew Stopps 52:42
\nBecause it’s been so basically immobile for two years. And so I get physically tired, like exhausted, because I’m, you know, doing everything I was doing before the stroke. You know, I’ve gone back to work for the first time since the stroke. While and even though it’s I’m limiting myself to two to three days a week. You know, it’s it’s physically tiring.<\/p>\n
Andrew Stopps 53:22
\nSo, relief teaching. The first day I did that, when I got back here I was stressed about it. I didn’t know how it was gonna be I didn’t know if I was gonna get you know, live in the class. I didn’t know what was going to happen. And when it didn’t, it was it was great. But you know, when you’re looking after kids for five hours a day and you’re on your feet, that’s even tiring when you don’t have a stroke. And so, yeah, like last week, I did three days in a row. And by yesterday, I was just like I was so physically tired. I felt like I’d run a marathon.<\/p>\n
Getting back to work after the treatment<\/h3>\n
\nBill Gasiamis 54:14
\nI can relate to that. That’s pretty. That’s pretty normal for people who are getting back to work after a stroke because it’s a big adjustment. Yeah, under normal conditions, even if you haven’t had an intervention like you’ve had is a massive thing to get able to be used to dealing with all of the drama, all of the children standing up thinking talking,<\/p>\n
Andrew Stopps 54:41
\nwas standing up I didn’t even think about how difficult physically that was going to be because I hadn’t been standing up for more than 30 minutes. Like I wouldn’t stand up for long periods. Right before that shot, and suddenly I’m standing up for like, you know, 1234 hours and wondering why my legs start feeling like jelly. You know, it’s just standing, you just standing Andrea, and why the hell can’t you do that? But, you know, if you haven’t been doing that for two years, it’s hard,<\/p>\n
Bill Gasiamis 55:18
\nYou got to retrain it, and that the deficit that you’re experiencing that weakness is something very common to a lot of stroke survivors, you know, one side is weaker than the other side, it does come better. I know, my left side is a lot is a lot weaker than my right side, the recently I started the gym. And I feared that I wouldn’t be able to do free weights. So for example, when I was doing a dumbbell bench press, I thought that it was better to use a bar and one of those machines that are safer in my mind to do a bench press on.<\/p>\n
Bill Gasiamis 55:18
\nSo that when my left arm gets weak, I was concerned that I would drop the weight on my left arm when it took, and also thought that I wouldn’t be able to hold the bar level and in a balanced position. But it turns out that after a long time, and being gentle with the recovery, and starting on the machines that are supported, and then doing very lightweight, and just getting good at the movements, that that you’re bringing, I was bringing that left side up, back online, back online, just teaching a process, teaching at a process.<\/p>\n
Bill Gasiamis 56:36
\nAnd then with the weight, the weight was the correct weight for my left side, to get to 10 repetitions, for example, three times, it’s a bit like from my right side. But it doesn’t matter. Because I’m not trying to lift the heaviest weight possible. I’m trying to rehabilitate my left side, while I’m working on the right side. So we, so that comes like the strength does come back in time and it just requires rehabilitation, that’s all.<\/p>\n
Bill Gasiamis 57:10
\nAnd just put something like a car, if you haven’t started the car for two years, and it’s just been sitting in the driveway, it’s going to chug and it’s going to feel a little bit different as everything starts to get lubricated and warm up again. And I find that my left side works better on the second and third rep than it does on the first rep. The first rep is kind of reminding me what to do.<\/p>\n
Bill Gasiamis 57:38
\nAnd then it starts getting better. And then with the second set, the left side seems to know, oh, yeah, we’ve done this, we know what to do. And then we’re good to go. And I get more confident with the second and third sets as well. So it’s interesting. So you’ll get there. But I imagine, you know, you have expectations.<\/p>\n
Bill Gasiamis 58:01
\nEven though you’ve had the injection, even though you’ve noticed there are benefits, you still have expectations of yourself. And you want to get back to normal processes and normal life as quickly as possible. And now you’re just kind of finding where where the threshold is. And yeah, you step back a little bit to give yourself recovery and recuperation.<\/p>\n
Andrew Stopps 58:25
\nSo firstly, the drug keeps working for about six months. So you see improvement over six months. And you don’t have to have follow-up shots. Like I’m not gonna have to do these every year or every couple of years. Like that’s it. But I have found this kind of distance now that my mind is clear now that I don’t have, you know, cognitive fatigue, now that I don’t have sensory overload. I’m thinking that I can just go back exactly to where I was two years ago.<\/p>\n
Andrew Stopps 59:06
\nBut in reality, things are changing, almost daily, like with my with my speech. That’s changing as as you know, my tongues are learning where to how to articulate words. My arm and my hand are changing all the time. And so it’s just yeah, it. There’s there’s so much newness that I have to get used to. While things are settling, settling in, the only thing that I have left over from the stroke is the muscles on the right side of my face.<\/p>\n
Andrew Stopps 59:51
\nAutomatically break into a smile when I’m emotional when they’re happy or Oh, not too though, just creep up. Which is interesting. And that’s the only thing now that I have left. From, from the stroke. Everything else seems to be falling into place. Like, is it coming back online?<\/p>\n
Bill Gasiamis 1:00:20
\nYou seem comfortable moving. I think is it your left side right now when we’ve been talking for about an hour, and your right side doesn’t get a lot of use. Is that just because of habit?<\/p>\n
Andrew Stopps 1:00:31
\nYep, I’m, I am constantly reminding myself and Shawn’s reminded me as well to use my right hand and use my right side more. And, you know, like, when I’m in the kitchen, for example, I will constantly think, you know, I’ve got to use my right hand to pick up the cart or to pick up a plate or to grab the cutlery, you know, to get used to picking it up. But then in other situations, like here in front of the computer, I forget again, because I’m so used to just doing everything left-handed.<\/p>\n
Bill Gasiamis 1:01:17
\nHave you been able to pick up the instruments? I imagine it’s beautifully performed as before.<\/p>\n
Relearning how to play musical instruments<\/h3>\n
\nAndrew Stopps 1:01:26
\nNo, but it’s incredible. When I pick up, especially the clarinet, because that was my first instrument, and put my fingers on it, my right hand, just go straight to where it says go, it just remembers. It knows exactly what it has to do. And I can, like, move it on the keys, like three or four times, and then my fingers get too fatigued and my hand starts to creep up. And then you know, I have to stop.<\/p>\n
Andrew Stopps 1:01:53
\nBut it’s yeah, it’s it just feels like holding the clarinet was like putting on an old comfortable jumper. It just feels so natural, and so good. But it wasn’t gonna say we got back to back home from the States the day before Valentine’s Day. And Sean said to me that day. This is the best Valentine’s Day President I’ve ever had, having my husband back. And I was kind of hurt when he said that. I said I didn’t realize those were gone. And he said, Yeah, yeah, you were a different person. And now you’re back. You’re back to who you were. And that was emotional.<\/p>\n
Bill Gasiamis 1:02:44
\nIt makes sense. Because the partners and family members are dealing with how they experience you after stroke as well. They are mourning their losses about you, your relationship, and how you went about life. And they’re probably also thinking, Oh, why couldn’t we just go back together? And everything was the same as it was before?<\/p>\n
Bill Gasiamis 1:03:10
\nBecause I know stroke survivors who have said that, you know, I’ve said that. And then my wife has said that in not so many words. She said, Man, wouldn’t it just be good not to have any of this shit to deal with? And it’s like, yeah, of course. But, you know, we have to deal with it now.<\/p>\n
Andrew Stopps 1:03:28
\nBut I also think it was mainly the fatigue and the sensory overload the emotional regulation, like all other things, we had to factor into everything that we did every decision we made. And suddenly, we’re back home. And like, we didn’t have to worry about that. We didn’t have to worry about Andrew having a meltdown.<\/p>\n
Bill Gasiamis 1:03:50
\nWe went through similar things, you know, we’d be away. I’ve saved on a holiday or what have you. And I’d say to Christine, count me out today, do what you whatever you need to do, go and say whatever you need to say, but I’m out. I’m going to just chill out in the hotel room by the pool or at a cafe. I don’t want to be involved in any of it because I can’t and you know, that’s not It’s not fun to be overseas and not be able to do something for example, right?<\/p>\n
Bill Gasiamis 1:04:19
\nSome people go through that at home. I couldn’t go to particular parties and events and all the things that people invited us to go and do and see. You know, you have to you have to not go sometimes you have to Yeah, heal and recover and not make it worse.<\/p>\n
Andrew Stopps 1:04:38
\nWell, it’s interesting because the day after we got back from the first shot to Sean’s family, we went to a family dinner was his his extended family. And there were 21 people in the house for this dinner, from babies right away theater your elderly and it was So noisy and there was so much happening. And if that didn’t happen two days before, I would have lost about three minutes in the house, because it was so much to do.<\/p>\n
Andrew Stopps 1:05:10
\nAnd I was just loving it, I was enjoying it so much. meeting other people and chatting. And it was just so it was so remarkable how I could go from not being able to tolerate that to being able to load that in a matter of 24 hours. You know, and some people who are skeptical of this treatment, and I’ve said yes, it’s a placebo. But I don’t know, I can’t see how that could be a placebo. Because it’s so major, it’s such a big thing.<\/p>\n
Bill Gasiamis 1:05:52
\nBut it’s also got some really good results in helping people with arthritic conditions and decreasing inflammation in joints. So it’s not placebo-like it wouldn’t work on arthritis in that way, yeah. Yeah, this is what you can’t get rid of when arthritis has done damage to joints, cartilage, and all that kind of stuff. You can’t undo the damage, you can only it’s like a brain, right?<\/p>\n
Bill Gasiamis 1:06:20
\nWhen we get a brain injury, the injury doesn’t go away, in where it’s injured. The inflammation around the area is another thing. But the same thing with a bright, a bone that’s injured when the bone has become injured, the injury, the scarring, or whatever you want to call it is still going to be there. The wear and tear. Yep, so what so what it does is it decreases the inflammation signals around that so we can reduce the pain that people are suffering, it doesn’t take away that damage.<\/p>\n
Andrew Stopps 1:06:51
\nWhat to noticed when I was doing my research leading up to this, and going online and asking people in stroke groups, you know, if they’d had the treatment and about it, and there was a small group of people that were really against it, and really, like one person, in particular, was quite aggressively, you know, discouraging me.<\/p>\n
Andrew Stopps 1:07:19
\nHe said, I know, people pay this money and nothing happens. Well, you’re told that from the start, like, It either works or it doesn’t. And this is why. So if it doesn’t work, it’s not because it’s a scam, it’s because you have inflammation, you have brain damage.<\/p>\n
Bill Gasiamis 1:07:39
\nPeople need to understand that the damage is the damage once it’s there, it’s there, you’re not getting it back. If that means that the damage has caused you not to be able to walk well, then that’s not going away intercept. Is it 10 has is not real? Damage. No, it’s so in other parts of the brain that have been inflamed and do not operate properly to operate better.<\/p>\n
Andrew Stopps 1:08:06
\nYeah, yeah. And so, you know, there’s, there are people now who I’m talking to online, who will ask me about the procedure and the process, and may try and make a decision whether they’re going to have it. And it is, like, for me, the decision was, like, regardless of what happens, I have to know, I’ve done everything. So I’m prepared to gamble and take that risk.<\/p>\n
The Etanercept for stroke follow-up treatment<\/h3>\n
Bill Gasiamis 1:08:40
\nIs there any follow-up now with the clinic?<\/p>\n
Andrew Stopps 1:08:44
\nYeah, I’ve got some paperwork I have to fill out in a couple of weeks, just to see how, you know how I’m progressing. But other than that, if I feel like in a couple of years, I want to have the third shot. Or then I’ll you know, I’ll do it. I’ll just, you know, I’ll see how much the improvement makes.<\/p>\n
Bill Gasiamis 1:09:11
\nThis is still an option. It’s a possibility.<\/p>\n
Andrew Stopps 1:09:13
\nYeah, yep. But then again, you know, it just depends on how much progress I make now, over the next couple of months. I mean, I’ve made such a huge amount of progress and like I said, I’ve just got to be careful of not burning myself out because I am like, going back and doing things exactly as I was doing like it’s funny, the school I was at doing a relief.<\/p>\n
Andrew Stopps 1:09:45
\nLike when I came back when I started up again, was the school I was at the day before my stroke. And so it was like nothing had happened for two years. I just went from that Friday, to this Monday. And it’s two years later, I’m doing the same thing again. It was it was it was bizarre.<\/p>\n
Bill Gasiamis 1:10:09
\nLike a two-year gap of stuff.<\/p>\n
Andrew Stopps 1:10:13
\nYeah, it’s like, the last two years didn’t happen.<\/p>\n
Bill Gasiamis 1:10:17
\nYeah. I Imagine what that’s like. One of the biggest challenges with me, helping people get through stroke is often struggling with the, you know, what do we tell people about, you know, how do we bring information to people, you know, things that we talk about getting doctors to talk on the podcast, it’s almost impossible. People don’t want to, yes, that kind of stuff, which is strange that you can get people to talk about it.<\/p>\n
Bill Gasiamis 1:10:47
\nBut I understand all the medical implications of that. What I loved was when you reached out and said, Can we tell the story of what my experience was with a teleseminar? And I thought, that’s something that we’ll need to do, it’s going to make a big difference to a lot of people listening about whether they go or don’t go.<\/p>\n
Bill Gasiamis 1:11:07
\nAnd whether they like you they want to know, yes or no, did it work, or didn’t work, and that they’re gonna go after recovery, I want to encourage people who are listening to go back and listen, a couple of times get comfortable with the process that Andrew had to go through.<\/p>\n
Bill Gasiamis 1:11:28
\nUnderstanding the implications of going there, the potential results that you might or might not get the funding, the cost that’s associated with this, and how to go about raising those funds is really important. And, and that’s, that’s about it for me, like, I appreciate you reaching out and sharing this story, because it was a gap in the knowledge base that was there that people were asking me about, and I couldn’t deliver them a piece of content that had at least one person’s version of events. And then sort of dispelled some of those myths as well.<\/p>\n
Andrew Stopps 1:12:10
\nYeah. Because the only videos you can find are the ones that are done on their website. And so and so it’s, for me, it’s important to talk about this to people and to answer questions and to, you know, to be valuable to be a resource because, you know, I’m not sitting in the, in the treatment room now and having a video done. I’m like, just I’m talking to you. I’m telling you exactly what it was like for me. And I wish that was available to me when I was trying to make a decision.<\/p>\n
Bill Gasiamis 1:12:43
\nLet me just say, not that we have to this is not a paid endorsement, we are not doing a plight or the clinic or anybody like that we are two stroke survivors or one who was curious enough to go ahead and get that procedure done. And one who’s curious, because I want to get information out to people and give them something to consider. And even thinking about it for myself.<\/p>\n
Bill Gasiamis 1:13:11
\nThat’s the other interesting part of this, you know, is that for me, it’s a really important conversation, because I need to consider the possibilities of how this might support me. That’s one thing I haven’t asked you is, is it a procedure that can be done? For anybody who’s had a neurological injury? Does it have to be a stroke survivor? Does it have to be ischemic stroke or hemorrhagic stroke? Do you know anything about that?<\/p>\n
Andrew Stopps 1:13:38
\nYes, the type of stroke, it doesn’t matter if there’s inflammation caused by it, and it’s going to help with other brain injuries. I think they do do other brain injuries if you’ve got inflammation. This drug’s going to help.<\/p>\n
Bill Gasiamis 1:13:56
\nYeah. Excellent, man. Congratulations. Thank you for coming on and sharing that I appreciate it. And I wish you a great recovery and continued success. Well done.<\/p>\n
Andrew Stopps 1:14:10
\nThank you very much. Thank you. It’s been really good talking to you.<\/p>\n
Bill Gasiamis 1:14:13
\nWell, thanks for joining us on today’s episode. This was an episode that I’ve been wanting to do for a very long time. Many people have contacted me and asked if I knew anybody or had understood what it’s like to receive Etanercept. Now that you’ve listened to the interview, I encourage you to do your research, make up your mind, and understand fully what it is that you might need to go through to consider the possibility of requesting the procedure from Dr. Tobinick.<\/p>\n
Bill Gasiamis 1:14:54
\nThis is not a paid endorsement of the clinic. I do not suggest that anybody listens to any of this information on the podcast and takes my advice or Andrews’s advice. Please do your research and investigation and make your own decisions. And hopefully what this has done is just given you some things to consider. And some things to understand that you didn’t understand before.<\/p>\n
Bill Gasiamis 1:15:23
\nSo, for everybody, listening, if you liked this episode, please do hit the like button, share the episode, let other people know about it, and get the conversation started, because that’s what we need more of, we need to hear more about the solutions that are possible for stroke survivors. And this might make a difference to somebody else’s recovery. If they can find this interview.<\/p>\n
Bill Gasiamis 1:15:50
\nAnd listen to it, it might improve their quality of life, it might allow them to get back to work, it may allow them to get through recovery a little bit better. Thanks to everybody who always tunes in, listens leaves comments, and reviews, the podcast lives and thrives because of the reviews that people leave, whether it’s on Spotify or iTunes. So if you’d like to leave a review, please do go ahead and leave a review and some words about what the show means to you.<\/p>\n
Bill Gasiamis 1:16:23
\nThe show is growing, I get feedback from people every single week about what the show means to them what it was like when they discovered the show, how it made a difference in their recovery, how they don’t feel alone, and how they feel understood and feel like they found the community. And that’s exactly what I was I was trying to achieve. So I hope you enjoyed this episode. And I look forward to seeing you on the next episode. And I am truly grateful and truly and deeply appreciate everybody who listens and interacts and contacts me and leaves comments. Thank you.<\/p>\n
Intro 1:17:03
\nImportantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. The opinions and treatment protocols discussed during any podcast are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed in all content on this website at any linked blog, podcast, or video material control.<\/p>\n
Intro 1:17:24
\nThis website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis, the content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice the information is general and may not be suitable for your personal injuries, circumstances, or health objectives.<\/p>\n
Intro 1:17:48
\nDo not use our content as a standalone resource to diagnose treat, cure, or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional. Never delay seeking advice or disregard the advice of a medical professional your doctor or your rehabilitation program based on our content if you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional.<\/p>\n
Intro 1:18:11
\nIf you are experiencing a health emergency or think you might be, call 000 in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department. Medical information changes constantly. While we aim to provide current quality information in our content.<\/p>\n
Intro 1:18:27
\nWe did not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency, or completeness of the content. If you choose to rely on any information within our content, you do so solely at your own risk. We are careful with the links we provide however third-party links from our website are followed at your own risk and we are not responsible for any information you find there.<\/p>\n