← The MSing Link
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Hello.
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Hello. Thank you so much for tuning in today. I had a reality check recently that I wanted to share with you because this same reality check that I just had is a conversation that I typically have with all of my Missing Link members and any patients and clients that I've had in the past, specifically around the holidays or vacation. But it's something that we can also apply to our daily life, just to make it a little bit easier. Especially when you have multiple sclerosis, where lots of things are harder just due to physical reasons like weakness, poor balance. You have to think about every single step that you're taking or where you're going to be going and the distance that you need to park. While all of that will still be true, there is a way that we can plan ahead to make our days in life just a little bit easier. And especially with ms, any bit easier is typically very welcomed.
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The big question is, how does someone with Ms. Actually improve their mobility, strength, energy independence? The list goes on. My name is Dr. Gretchen Holley, physical therapist and multiple sclerosis specialist. Welcome to the Missing Link podcast. Tune in as I share the top strategies and exercises to help you gain control over your life with ms, using research driven insights and advice from top industry experts. Whether you're newly diagnosed or have had Ms. For over 30 years, whether you have relapsing Ms. Or progressive MS, this podcast is for you. You're sure to feel empowered and inspired after each misunderstand episode.
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Ready?
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Let's dive in.
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So the reality check that I had was I was walking to the playground by myself. My husband was not with me, but I did have both kids. We have one stroller, which feels like a huge bus as you're pushing it, but we have one stroller that fits my infant in one of the seats and then my 2 year old in the other seat. And so I'm pushing it along. We're going happily to the playground. My daughter, my 2 year old, is recently very into playgrounds, so I'm super excited to bring them. And we get there and of course it's on grass, it's this uneven area. So I'm kind of struggling to push the stroller. And of course as soon as we get to the playground, my infant Scarlett is needed a bottle. She started crying pretty much right away. So I thought, okay, this is fine, I'm going to park the stroller over here and I'll start feeding her. So I park the stroller under a tree, so we're in the shade because it was a really hot day and I take my 2 year old out and of course she immediately runs to the slide. And then I also take my infant out, Scarlet, and the bottle, and I'm feeding her and it's hit me like a ton of bricks, like, oh, my gosh, I can't go on the playground right now to help my two year old, Nora, with playground things. Like there's zero chance I'm holding a baby and feeding her with my other hand. I literally don't have a hand to help her climb up the stairs so that she can then go down the slide or lift her onto the swing or play with anything. And immediately I started mentally freaking out because she's not independent enough yet on a playground where I'm not nervous to let her go on her own. Like, she does need assistance. But fortunately, my sister, who lives on the same street as me, I absolutely love living so close to her. She and her son, who is five and a half years old, they came. I had remembered that earlier in the day, I asked if they wanted to join us and she said yes. And holy, thank freaking goodness, because it literally saved the day. I was thinking, we have to leave the playground. That's going to be a meltdown because my daughter didn't even get to play. But here comes my knight in shining armor, my twin sister, to help out. And I was so, so, so grateful because it allowed me to stay under the tree with my baby, feeding her, but also have someone be there with Nora for assistance. But at the same time, I couldn't be the one holding Nora's hand on the slide or lifting her up onto the swing and pushing her. And I was so grateful for my sister, but it was also a little sad that I couldn't be the one to play with Nora. But in that moment, when I saw my sister pushing Nora, I'm still feeding Scarlet. I was under that tree and just had this mixture feelings of gratitude and reality check. It was this huge feeling of, okay, what can I do next time so that this doesn't happen? But also more than that, it was whoa. A month ago, I came to the playground and didn't even have to think twice about it. I knew exactly what Nora would want to do. I was able to help her. We didn't really have to plan to bring anything with us. We just got in the car and went to the playground. It wasn't any big deal at all. And now it was. Now it was just this huge light bulb moment of whoa, okay, that is not the life that I'm living. Right now, that is not the season of life that I am in. And it was this mental overwhelm, but also immediately in the moment thinking of what can I do next time? So that tracking two kids in this environment on the playground and the noise level, which is overstimulating for me, doesn't become a barrier because I do still want to go to the playground with both of my daughters. So next time that I want to do this, I need a plan. I need to think about it before, even though I didn't have to before, not to mention that later that night, so we had ended up having fun on the playground. We go home, have our dinner, you know, bedtime routine, all that good stuff. My sister texts me later that night, someone else that was on the playground who knew my sister sent her a picture of a baby bottle and said, is this your sister's? I found it on the playground under the bench. So not only was there just like that chaos at the playground, but then I also forgot the bottle. So then the next day I had to go back to the playground and pick up the bottle. And another time that we were going to be simply going out for a walk, we weren't even going to the playground. It literally took me an hour just to get my 2 year old ready to leave the house. We'd put shoes on, but then she would take him off. She wanted to switch what shirt she was going to wear. She was running around. And this was earlier in my postpartum, so I couldn't lift her up and I couldn't chase her around. So I just had to wait until she came to me and it was this whole thing. We finally get in the stroller with Scarlett and Nora. I'm pushing her. We were about five minutes away from our house when she asks for her pacifier. And I realize I did not bring the pacifier. I didn't bring the pacifier. We had to turn around, go back five minutes, grab the pacifier, turn back around, go on our way. And so again, just these multiple reality moments of I need to plan. This was something I didn't used to have to plan for, but now I do. And there's so many situations like that. These are just the two that helped me have that reality check. And to be honest, I don't think it's about being disorganized. It's about the fact that there's more variables right now. For example, prior to Scarlet being born, if I wanted to go on a walk in the stroller with my 2 year old, Nora, I still would have had to remember to bring the pacifier. That is not a new variable for me, but I forgot it because there was more to hold in my head. My mental capacity is full and I'm forgetting things. There's more people involved, there's more steps involved. And so it's not about being disorganized. And if you're hearing this and thinking, yes, I need to plan more too, it's not a failure by any means, at least I don't. I'm not taking it as one, but just this awareness of there's more variables now and the mental capacity might not be there to think of these things or remember these things. So. So I need to start planning ahead. And not only that, but it's dual tasking. Doing two things at once, physically and cognitively. And this is something that I actually work on quite frequently within the Missing Link inside my online membership. And it's something that a lot of people forget. Whether you have Ms. Or not, you can actually train your body and brain to, to improve movement while you are cognitively distracted, such as walking and talking at the same time. In my case, feeding a baby and having a conversation, or watching my daughter on the playground, but also being asked a question by someone else. So these two things, physically doing something, but cognitively you're distracted because you're mid conversation or you have to turn and look at something or read something. You can actually train that if you are in the Missing Link. Just a side note, we have an exercise class called Dual Task and Cognitive Training where we implement the techniques that you can use in a 25 minute exercise class. So definitely check that one out. But going back to our purposes for this episode, our brain has to divide its resources. So. So when you're managing more than one thing at a time, something always gets harder. For example, if you're trying to walk, of course that's going to be challenging when you have ms, but if you need to walk and talk to the person next to you, walking is going to be a whole lot harder because you're distracted. You have to focus on more than one thing at a time. And this is exactly what I hear from so many of my Missing Link members, where walking feels fine until they are also carrying groceries, having a conversation, navigating a busy or crowded space, and then it gets significantly harder. And while a lot of people assume that it's due to weakness, it's actually not. It's just that Ms. Can affect the brain's ability to process and manage multiple demands at Once. So the way that we can work around this is planning ahead of time. So for my example earlier of the playground, I could think ahead of time about what strategy do I want to use. Because planning isn't a limitation. It's not something that means that, oh, we're a failure. We didn't used to have to do this. It's a strategy that makes things possible. So for me, in the playground, I realize and think ahead. Okay, before I go to the playground by myself with both kids, I can feed the baby before we go. So that ideally, obviously you never know, but ideally she would not need to be fed when we are there. But I can also bring a bottle just in case. I can pack the diaper bag. I can consider the time of day. Are there going to be tons of kids there? And therefore it's going to be busier and overwhelming emotionally. But also sensory input. Do I want to invite someone to come with me? These are all things that I can think of when it comes to Ms. Before any outing, you could think about the variables. And you likely do this whether you realize it or not. You likely are doing this to some extent. The biggest one that I hear is that you have to plan your distance, that you park your car from wherever it is that you're going to. So if you're going into the grocery store, how far away will you have to park? Or if you're going to a restaurant, how far away will you have to park? And can you do that today? You can also think ahead about what different mobility aids do I want to have with me in case it's really hot out and I might need my Rollator instead of a cane, or vice versa. If you're feeling like it's a stronger day, you don't have as much fatigue. You've got your cane instead of a Rollator. Is your fatigue higher in the morning versus the afternoon versus the evening? And planning around different terrain. This especially comes into conversations a lot with my members when we're talking about vacation. But even just in your daily life, if you're going to be going somewhere, is it going to require that you're walking on grass or cobblestone or brick or concrete or something else? In the case of vacation, maybe sand. But there's also exercises that you can do weeks and months in advance to prepare. So if you know you're going to be going on vacation and you're going to be walking on cobblestone or grass, then you would practice your functional exercises on grass or on cobblestone. I Had a patient when I was living in Boston who was going to be going on vacation. And there's a lot of cobblestone and there was cobblestone near her house at a local shop. And so I literally had her going to the parking lot of that shop to do her exercises with her husband and with mobility aid, just for safety. So putting yourself in that environment to practice it is also a strategy, but also planning ahead with what might you need? Would you need a cooling vest while you're there or water or snacks? I'm someone who gets hangry if I go too long without eating, so I'm all, all for team snacks. And when it comes to holidays, I love having this conversation around the holidays because it's not just about the environment that you'll be in, but also who you're going to be talking to and what you'll need to be doing physically while you're there. With holidays, especially thinking about ones like Christmas or Thanksgiving where you tend to have to sit down for a while while you're eating with the family, you can think about things like where will you be sitting? Picture yourself in the home of the person that's going to be hosting. Is it a big open room and you won't have any issue going up to your chair and sitting down? Or. Or is it maybe slightly crammed and you're going to have to take some side steps to scoot into your chair? If so, mentally plan for that. Will you need a mobility aid to help with that? Can you do some exercises now so that when you have to do that, it's going to be a bit easier? Will you need to be able to scoot your chair into the table or push it back? How long do you think you will be sitting for? And how long can you sit before you need to move or stand up just to give yourself a physical break? So you get the idea. And one thing I want you to consider is that planning ahead, especially when you didn't used to have to plan ahead for the thing that you're planning ahead for, it doesn't mean that you can't do something. It just means that you are setting yourself up to actually enjoy it and to actually be present when you get there and to maybe even move easier and better and not think about Ms. Once you're there. And I personally feel like this conversation can be a bit overwhelming because we can plan ahead for literally every individual thing that we do each day. But that's. I don't know, it feels overwhelming to me. So what I'M planning on doing. And what I would recommend that you do is just to pick one upcoming activity and think through it in advance. It can be something as mundane as showering and getting dressed in the morning. For a lot of my members, that's an activity, right? You gotta think about that in advance. Especially if you have heat intolerance and taking a shower causes heat intolerance. So then afterwards you're wiped out. What can you do ahead of time so that you're not as wiped out after? Can you make sure to have cold water, maybe even in the bathroom with you and sip it throughout your shower? Can you have that cold water in the bedroom? Can you already have your outfit out? What can we do to help with that? So it can be something as mundane as that, or it could be something bigger. It could be a vacation, it could be an outing. You know, if you're going to be going to a restaurant who might get there first, can you ask them to choose a specific location that would be easier for you to walk up to? Maybe they request a table in the front of the restaurant so you can sit down right away, or a table closest to the restroom so that it's closer for you thinking about these things in advance, not because you can't handle it, but because you deserve to be able to do these things and actually be there emotionally and mentally rather than just focusing on how awful it went, which is how I felt when I got to the playground, or being fearful of okay, I'm gonna need to go to the bathroom, but I can't get there because we're here. So again, planning ahead can just be a helpful tool, especially when there's so much variability with Ms. As it is, and we talk about this type of conversation quite frequently inside the missing link. Again, if you are a member, definitely check out that dual task exercise course class. We also have a separate educational video on other ways that you can work your brain mentally while also working your body physically so that doing two things at once does actually get easier physically and mentally. And if you are not a member, but you love the idea of having research based exercises that are based on neuroplasticity and our brain that actually translate to not just getting stronger or better balance, but actual improvements in your daily life with things like getting dressed and showering, walking to your car, getting in your car, getting groceries, walking down your driveway, taking your trash out, climbing stairs, all these things. Then I will put the link for the missing link down in the show notes or description so you can learn more about it and see if it would be a good fit for you. Thank you so much for tuning in today. Please remember to choose one thing that you're going to plan ahead about and then let me know afterwards. How did it actually go now that you intentionally planned ahead in a very detailed way?
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Thank you for listening to today's show.
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I am so grateful to have you as a listener.
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If you'd like extra resources such as a video of one of my seated exercise classes, my favorite core exercises, and the opportunity to ask me your questions, head to missinglink.com insider. That link will be shared in the show notes along with links to my social media handles. If you loved this episode and think a friend or family member with Ms. Would benefit from listening, please go ahead and text or email this podcast to them right now. Sharing this podcast will help me educate and empower as many Ms. Warriors as possible. Thanks again for joining and be sure to tune in next week for another episode of the Missing Link podcast.