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Richelle has been battling MS for 9 years. She struggles with MS spasticity in her legs and back, sometimes causing debilitating pain. She used to exercise religiously and was a fitness enthusiast, but now fitness is hard and she hasn’t exercised in about 18 months. Often times, people who were athletic struggle with therapeutic exercise vs their desire to train for competition. She feels like everything has turned to “skinny fat” and has “extreme muscle weakness.” Like many invisible illnesses, it often looks like everything is fine, but some days just getting out of bed feels impossible. We did a series of three Excy full body cycling exercises to help her onboard to exercising more to help with MS symptoms. In this first workout Richelle focused on using Excy in the recumbent exercise bike position. Excy turns any chair into a quality recumbent exercise bike, yet folds for easy storage and transport. Physical activity is critical for people living with MS and MS spasticity. Everyone has a unique journey and should always consult their doctor before starting a new exercise program.

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Live Recumbent Bike Workout: Exercise and MS Spasticity

 

 

Richelle’s Upper Body and Floor Cycling MS Workout

 

Complete Video Transcription: Touching Base on MS Spasticity with Excy in the Recumbent Bike Position

Michele: All right, so, hi, it’s Michele with Excy. And I have Richelle here. Richelle has MS, and has been living with it for nine years?

Richelle: – Nine years.

Richelle – Okay, so what she has kindly allowed us to do is exercise together. And there’s three positions that she likes, and we’re going to show those three positions over three days. Today, we’re going to do the recumbent exercise bike position. And I have Excy here on the floor, and I’m just going to kind of cycle and keep her company, which actually it seems awesome when you have two together, because you can do it with your friends and with a group. But we’re going to go nice and easy. So Richelle used to be a fitness enthusiast. And so she wants to get on Excy and go super hard. And I kind of like slap her little hand over there and tell her to stop.

Richelle – She doesn’t want me to do this, turn up the resistance.

Michele – No, no. So let’s talk a little bit about, what we want to do today is talk, what is it like to live with MS, okay. You look at Richelle. She’s beautiful. She’s a mom. She’s, like, she is amazing. And it’s this invisible disease, you know, and you don’t see her and know what’s going on, but there’s a lot going on that you deal with just on a day-to-day basis.

Richelle – Yeah.

Michele – And so many people don’t know, you know, what it’s like to live with MS. Obviously, the people who have MS know. But if we can share your journey and help inspire others to see what’s possible, that’s why we’re doing this, okay. So all right, recumbent cycle position, okay, she’s sitting on the Excy Keeper. And the Keeper is what prevents it from scooting. Now with the way we have her set up right now, in a perfect world, we would actually have her out a little farther. We would take her knee, put it in, and she’d get full extension. And tell us why we’re not doing that.

Richelle – So thanks to MS, I have spasticity, which means that my muscles are constantly engaged. And they don’t like to stretch anymore. So I don’t have the range of motion that I used to. So even though this looks kind of silly with me sitting this close and having my knees this bent, this is what my hamstring will only allow right now. But I’m hoping with more movement and more exercise, I can get my hamstring to let go.

Michele – So explain a little bit, like, you have that in your back, too. There are days where you have said, you know, that it gets hard to get out of bed.

Richelle – Yeah.

Michele – Tell us about that a little bit.

Richelle – So a lot of people with MS experience pain from their spastic muscles. And I have it on both sides of my spine from about T11, down through my hips, and then it goes down both hamstrings. And so there’s days when I just don’t move very well. And then there’s other days where, for some reason, it let’s go, and I have a great day and maybe even a great week. And then there’s other days where this leg will be bent almost 90 degrees, and I have a hard time even walking. And there are many days where I don’t want to get out of bed, either because of pain, spasticity or because of severe fatigue, which can hit you like a Mack truck.

Michele – So you were saying, like, today, so just a quick, like, here’s how we’re doing things from an Excy perspective, okay. It would be really easy for me to go hire somebody to tell somebody, who doesn’t have MS, to tell somebody who has MS how to exercise. And one of the things that we’re trying to do is work with physical therapists to get proper ergonomics set up, but tell the story of what real people are doing to get how their getting through everything. So I’m not an expert in MS. Does she have the certification after her name? No, but living and breathing and dealing with it on a day-to-day basis, so when we’re talking about this, right, it’s coming from an area of expertise. I’m an expert on Excy. And living with MS is her expertise.

Richelle – Yeah.

Michele – So fatigue, you had mentioned, like, there’s the, I’m able-bodied. I’m healthy. I wake up, and I’m like, “Freaking A, “I don’t want to get out of bed today.” Right, like there’s a big difference between me just being like I feel I need a cup of coffee, you know, to get through the day.

Richelle – I’d give anything to be back there. It takes–

Michele – Tell me, like, what is, like for people who’d be like, “Just come on, just get out of bed already,” like without cursing them, what would you want them to know about people who have MS and are living with that?

Richelle – I think that they need to understand that everybody with MS is different and that it’s unpredictable. It affects each person differently. And like you said, there’s no doctor even out there that can explain to each one of us what we should be doing or what it must feel like. I think that we really are our own experts on our condition. I mean, we just need guidance on how to keep moving. That’s one of the things that they always tell us through the MS Society or through physical therapy of doctors, is that with MS, you have to keep moving. Keep moving, they’re constantly reinforcing that. The problem is you just don’t want to. You just don’t want to sometimes, a lot of times. And so really, it just becomes a mental game of making yourself move. But not all of us want to be at a gym trying to be the person that we used to be in front of all these people. We want to sit in the comfort of our own home but be able to do different things, privately. So what was your original question? ‘Cause I can’t remember it now.

Michele – Why don’t we jump into that? So one of the things that we talked about doing live, first of all, thank you for doing this, because I will flat-out tell you it took me about a year, okay, we had Excy out for a year, and everybody kept telling me to do live workouts. And I think there’s maybe two selfies on the internet of me prior to Excy. Like, I’m not somebody who likes to be in front of a camera. So one of the things I told you, you know, when we go live, it’s live. Like, there’s no undoing anything. And one of the things that she said is that sometimes her mind just goes blank. And I, in my little world, I call that Mom brain. I get Mom brain. And it’s just, right? My Mom brain is very different than, like, so tell us a little bit about how that impacts you.

Richelle – In my family, we call them MS moments.

Richelle – Okay.

Richelle – Where I just suddenly lose track of what I’m trying to say, and I stop. And I have no idea where I was going with that thought.

Michele – Not that I’m, I’m not laughing. I do it too.

Richelle – Or I can’t find the word that I want to use. Like, a camera, what is that thing? I know what it is, but I can’t remember. And it can be kind of embarrassing but kind of funny. I just try to make fun of it, so.

Michele – You know, one thing I think I have found. I have seen this consistent pattern, and I, like, from people who are blind to Parkinson’s to MS, there is this underlying just finding a way to laugh. And it’s funny, you know. I never really thought about it, just sort of working with so many different people. And it absolutely is a consistent thing. She’s going to be watching. One of our customers who is blind, she is so together. She is like the funniest person I’ve ever known and just makes me laugh. So, like, tell, how does that impact you, just kind of bringing in humor to laugh at yourself or the situation?

Richelle – Well, you kind of have to, I mean, especially when it comes to not being able to find your words or maybe you stumble for a second. It’s funny as long as you’re not gettin’ hurt. I mean, to be honest with you, I mean, MS is a disease of the brain and spinal cord. And these lesions are created in your brain and spinal cord that interrupt the signals that control various things in your body, and it can happen. Things can change at any moment. It even got to the point that every time I would look at one of my brain MRIs, and I’d see more white spots on my brain, I started naming them, just to be funny.

Michele – Do you have a favorite name of one of them?

Richelle – Osama.

Michele- All right, you’re just going to kick his ass.

Richelle – No, I think of ’em as little terrorists in my brain.

Michele- Okay.

Richelle – Yeah.

Michele- And why’d you pick terrorists?

Richelle – Because they’re just wreaking havoc in a place that they just shouldn’t be. And so it’s kind of funny. We’ll be like, if I forget something, somebody’ll say oh that must be so-and-so responsible for that MS moment.

Michele – Huh, that’s an interesting, like them wreaking havoc, huh. Let’s talk a little about like family. So you’re a single mom.

Richelle – Yeah.

Michele – It’s challenging enough surrounded with large family or somebody to help you run your kid from point A to point B, but you’re doing it all. What is that like?

Richelle – Well, I had a lot help from my family, luckily. A lot of people don’t have that support, but I’ve been pretty lucky in that regard. But yeah, things can get challenging, because a lot of times, I’m not going to stand up and cook some big meal in a kitchen or have some perfect dinner or breakfast made. It hurts to do those things, especially standing and moving my arms in a kitchen. And then just if I’m exhausted, needing somebody to pick him up from football practice or take him, it’s more exhausting than I had ever realized it was going to be. I mean, sometimes, you just can’t really pick up one leg and put it in front of the other.

Michele – So what drives you to get through those days?

Richelle – Just trying to stay mobile. I mean, my son’s only 13, so he needs me to be mobile for many more years. So that’s kind of what keeps me going. And the fact is is I’ve always been so active. I’m not willing to just give up. I’ve been in bed sometimes a majority of a month, and it just kills me, ’cause there’s so many things I want to be out there doing. So you just have to kind of keep, let yourself go through some of those and heal, but then you got to be able to get back up and get moving.

Michele – So speaking of bed, we did an exercise last, it was a week before last, where we showed Excy in bed. And it’s real interesting. A lot of people respond like, “Just go on a walk, okay.” Like, this kind of stuff irks me. It gets me fired up, okay. And we’ll have people say something like, “Why don’t you just ride a real bike? “Why don’t you go outside?” Here’s an idea. And it, I don’t know if it, it gets to me, okay. So one of the things that, we did a whole routine on exercising in bed, and there are so many reasons to exercise in bed. So you use Excy in bed. Tell us a little bit about that.

Richelle – Well, the thing is rather than just laying in bed and watching a show, I can stick this on the bed and keep my legs moving, just keep ’em moving. And I’m still watching my favorite TV show. The next thing you know a half-an-hour has gone by, and I’ve been exercising the whole time.

Michele – And then do you do arms in bed, too, or mostly legs?

Richelle – No, not in bed. I’m just too lazy to do a sit-up.

Richelle – Okay.

Richelle – But I probably will.

Michele – So when we’re breaking these up, we’re doing recumbent today. And speaking of the brain, we’re going to do a little challenge for Richelle here, and one of the things that we created this, so we have this back-and-forth exercise, right, routine. It’s new, and this was inspired by a young man. He’s 17 years old, and he had a stroke in uterine. And what a lot of people don’t know is that cycling is a phenomenal, amazing brain training, okay, cross-patterning. It’s kind of like, you know, children need to crawl before they walk. I’m going to put you here. But I’m going to have you go backwards and forwards. This is like patting your belly and rubbing your head at the same time, ’cause I’m talking to you at the same time. So I’ll follow your lead. Okay, so here, we’re going to pedal. It’s going to prompt you. I usually don’t take questions while we’re doing these live workouts, because I’m out of breath, but if anybody has any questions, feel free to ask. And next time, I’ll give more warning that we’re going to do this, too. So the prompting for stroke patients, Parkinson’s, I think MS, this is where we’re wanting to work with occupational therapists, in addition to PTs and neurologists and doctors, but that having to go back and forth, but here we have you at 45 seconds. So setting even shorter durations and going oh, and then it will feel awkward at first. But it’s a nice, I want you to do this at home. And then we’re going forward.

Richelle – To be honest, I didn’t even think that my legs were going to cooperate doing this.

Michele – That’s awesome.

Richelle – And I’m surprised, you know, at how, because I can adjust the position, and how my legs, how far they’re extending, I’m getting those legs moving and getting these muscles moving. And these are muscles that don’t want to move. So just the fact that they’re moving, even though I’m not at the resistance that I feel I should be, like I used to be, I have to come to the realization that I’m not going to be where I used to be.

Michele – And here’s one. Let’s talk about that little. And you keep doing that, ’cause I’m curious. Now you’re backwards, right? Yeah, okay, so, I hear this all the time from people, right. I’m going to be 45 in a couple of months. Officially, I think that officially puts me middle-aged, right. And I know a lot of people, like, they want to kind of be able to do the same exact things all the time, and they’re frustrated by that. And then next thing you know, they go out, and they’re like playing tennis like they’re 20 years old, and they’re skiing like they’re 20 years old, and then they get hurt. So I’m trying really hard to get people to find things that you like to do, that you don’t hate doing, but, like, you know, you were saying. You want to be able to fit in a normal pair of jeans.

Richelle – Yeah. Well, the thing is is people think that somebody with a condition, disease, whatever, they think that for some reason, we still shouldn’t worry about how we look or how I want to be able to fit into my jeans that I fit into a couple of years ago. And the thing is is just because we have a disability and limitations, it doesn’t mean I just want to exercise for that.

Richelle – Yeah.

Richelle – I want to gain some of the muscle tone back. And I want to get back into my favorite jeans. Not everything has to be about your condition, your disease.

Michele – So how do you think I should balance that? We’re being empathetic, right. It’s one of our core values as a company, is empathy. And being empathetic to I just want you to move, to fight disease, prevent the progression, right, be healthy, and to, yeah, like, I want to fit into my pants. When this little roll starts to come over, and the little muffin top comes, I get frustrated, right. How do we talk abut that? What would your recommendation to me, where yes, empathetic but also understanding that everything in your life doesn’t want to be about your condition.

Richelle – Yeah, it just gets to the point that you almost get sick of hearing yourself think about it all the time. You still have regular needs and wants like everybody else, whether it’s losing weight, gaining muscle tone, strength. I mean, there’s no reason why you shouldn’t want a six-pack abs if you’re–

Michele -See, and I’m like the opposite. I’m like, “Screw the six-pack abs, okay. “I don’t want a six-pack abs.” Well, honestly, though, I’ve never had a six-pack abs, so it’s not, I don’t think it’s genetically in me to have, and what would be required to get it is way more than what I have time to do, to exercise. And also, like, Goldfish, I eat the whole bag. Wine, I like, you know, so I struggle with that one. But I do want to be like, “Hey, if that’s your goal,” being supportive of whatever that person’s goal is.

Richelle – Well, I think just the facts, for example, if my legs are moving, these legs have spent a lot of time in bed, the last year-and-a-half, a lot of time in bed. And the fact that they’re moving, for rehab purposes and MS purposes, it’s still going to help me burn some of the fat that I don’t want there, so I can get back into those jeans. It’s doing both.

Richelle – It is, okay. So here’s what we’re going to do. And I should, and I’m going to get a tool. We should start this by measuring what your starting place is. So you haven’t really exercised in 18 months.

Richelle – At least.

Michele – Consistently, right? So getting an idea of where you’re at and your range, and we’ll get together with one of our PTs and measure where you’re at, because we do make, I do tell people when I use Excy, and I’ve been here where, you know, you can’t make a full rotation, ’cause your knee hurts, and you’re recovering from injury, and you’re trying to get all the range of motion. But to show progress over time, last night, was her, I’m curious, though, let’s see. So we measure intensity through the crank here. So you’re at 98. So I’ve basically said–

Michele – Keep it under 90.

Michele – Keep it under 90, but we’ll see how you feel today. So you’re at 100, ’cause we’ve been for, you know, a little bit.

Richelle – Right.

Michele – And over time, that would go, but this feels like a good pace. And then one of the things we talked about, we can do this when we’re done, too. We can do a little bit of a stretch. So talk to us a little bit about stretching and how that’s hard, but you’re supposed to be doing it.

Richelle – Yeah, so people with MS, spasms, they’re supposed to be stretching every chance they get, and I’ve been told this numerous times by my doctors. The hard part about that is sometimes it really hurts to stretch. I mean, imagine stretching something that is just not wanting to move. I literally will sit down on the floor and try to stretch this hamstring, my worse one, and as I start to stretch, I’m barely able to go forward, ’cause it’s pulling. It’s so tight, and it’s so painful. And the more I lay there, of course, I can go further and further, but then I start to get nauseous. And then my leg starts to shake. And it’s just an uncontrollable shake, ’cause it doesn’t want to be doing that. And so it becomes, I turn off to want to stretch. I’m going to get sick. Everything is going to hurt, and sometimes it’ll hurt worse the next day from pushing that stretch too far, ’cause it cinches right back up. So you’re constantly battling and trying to find this middle ground of getting this muscle to stretch and move. So that’s why it’s so important that it’s just going in this circle like this.

Michele – Okay.

Richelle – ‘Cause it’s naturally stretching it a little bit.

Michele – And you’re slowly, we’re doing it slowly, and you’re in control. One of the things that is unique with the Excy is it’s like riding a real bike. So in a flywheel, I go super fast, and I took my, like here, I have this really easy resistance, but it’s requiring that you push and pull, push and pull on both sides. So you get in a rhythm. There’s no assistance with a flywheel, you know.

Richelle – Yeah, I can even stop and stretch right here.

Michele – Now we can move you out.

Richelle – Yeah, I think we should.

Michele – So let’s finish with that. So what I’m going to do. And you can go ahead and take your feet down if you want. But I’m going to take Excy here, and I’m going to open it up, just a little bit, and it’s actually getting us closer to where she should be. And this one, let’s see where you’re at here. I don’t want her to pedal, okay. What I want her to do… Does that feel like a good spot?

Michele – Oh it might have to go in a hair, okay. That should be okay.

Michele – So I’m going to tighten this down.

Michele – Okay.

Michele – Sorry, going from, usually I’m sitting there and tightening this, but if you’re a PT, right, this is where you would be and working directly with them while they’re doing this. So here, we just want you to do no rotation and stretch, because that rotation, if that’s getting you outside of that zone, and even just holding it. I’m following you. PTs and doctors who might follow, you know, they’ll know way more than I know. But I think you follow your body and work with your doctor. And one of the things I say all the time, and I know people, you know, like to check the box, legalese, if you will, of always consult a doctor, but it’s true, right, especially if you have an injury, or you’re living with, you know, battling a disease.

Richelle – So, like, this leg, it doesn’t straighten anymore. This is actually a good day. There’s a lot of days where it’s bent like this, and this is as far as I can stretch. So I’m right here, and if I lean forward a little bit, I can get a really good stretch. I’m not going to be where I used to be. I used to be straight leg, you know, nose to my knee, like a gymnast. But I’m just going to have to keep working on it.

Michele – So we’re going to keep, we’re going to do three of these workouts with Richelle. Today is in the recumbent position. The next time that we do this, we’ll do arms, and we’ll get you in that arm position where she’s doing upper body ergometer. What’s amazing about an upper body ergometer piece is you’re incorporating your whole core, and your back, strengthening the muscles in the back and the spine, around the spine. It’s really hard to do that kind of stuff. But we’ll get into some of that. In fact, we can, before we go out, we can show that, just so that if people never get to tune into that. So many people don’t understand the benefits of an upper body ergometer. If they’ve had a rotator cuff injury or a shoulder replacement, then they get it, ’cause they’ve been forced to get on this machine. People just curse them out, right. But they’re such a great just everyday piece of equipment. Now see, right here, you’re about where you’re supposed to be. And we don’t want you to push it.

Richelle – Right.

Michele – But if it feels good–

Richelle – Yeah, I mean, it’s pulling on my hamstring, but it has to be pushed sometimes to get it to start to stretch.

Michele – And the trick is, you’re right, you were saying if you do too much, though, then the next day, it just seizes right back up. So then that’s when I go like

Richelle – Yeah.

Michele – Okay, all right, let’s, we’ll, actually, we’ll skip it. I have to kind of reach between your legs and push you around. Actually, let’s do it. It’s super easy.

Richelle – All right.

Michele – You keep going. All right, got this. We’re going to end this with showing you the next position. Okay, all right, let’s come down. I’m going to take this off. You can stay seated if you want. So one of the scenarios that we see with Excy is this home PT where, you know, you have your physical therapist who’s going into people’s homes.

Richelle – Yeah.

Michele – And this is one of the great things, is like one moment, they’re working with one customer who’s in recumbent, and then the next patient, or the next second, right, at home. So, all right–

Richelle – I don’t know how physical therapists are doing things like this without a machine to go into the house, to have something to work with.

Michele – They’re doing a lot of, you know, there are these tiny, little, I try not to call them cheap, but that’s what they are. They’re really cheaply made, okay. You buy ’em, $50 on Amazon, like Walmart, and they’re tiny, and they can’t, they have their place, right. But if anybody’s trying to actually get a real workout–

Richelle – I think for PT, with all the different positions and all the different resistance levels and things that this can do, you would want something like this.

Michele – I hope so. That’s what we’re, you know. All right, so here’s what we’re going to do. We’re going to end this by showing what we’re going to do next. So right there, there’s three adjustable heights. And I’m going to come in. I’m going to put this, just go ahead and sit down and get comfortable.

Richelle – Okay.

Michele – And this is the same even if you’re in a wheelchair. You want to kind of pull that in, okay, and sit on it. And this is a box jump that we have. You can put this on a chair, do anything you want. And what we want to do, we want to get, that actually feels about… You want it closer?

Richelle – Yeah, a little bit.

Michele – Okay, so to get it closer, we’re going to open up the slide here, okay, push it back, just turn a couple of knobs. How does that feel? So this is what we’re going to do next. Now that might be too much resistance.

Richelle – No, it’s not.

Michele – ‘Cause your legs, right, your legs are stronger. So when you go do your arms–

Richelle – It feels…

Michele – How is that?

Richelle – Good.

Michele – So that’s going to be the next position. I think we’ll do it next week.

Richelle – Yeah, all right.

Michele – Well, thank you.

Richelle – You can definitely feel the muscles working in the arms and the shoulders.

Michele: And what, here’s what I’m going to try to get, well, one, if you can sit up straight, and you were saying that core is hard.

Richelle – Yeah, well, the thing is core is one of the most important things, because it has to compensate for me having a weak back, because of all my Botox injections, which we didn’t go over, but the Botox makes those back muscles weaker. So my core has to compensate when I need to do simple things. So getting that stronger by sitting up like this and concentrating on engaging my core muscles.

Michele – And your back, all these little muscles that come around. Awesome, all right, we’ll see you next time. Thank you, and I guess I could see if anybody has any questions, and if not, maybe next time we’ll give you more of a headway, and you’ll have a better idea of when we’re going to do this. All right, we’ll see you later.

 

Watch Proper Ergonomic Setup for Excy as a Recumbent Bike, Floor Exercise Bike, and Upper Body Ergometer

Read more about MS spasticity from the Multiple Sclerosis Association of America (MSAA), a leading resource for the entire MS community, improving lives today through vital services and support.

Always consult a doctor before starting a new exercise program.