In this episode, CEO and Founder of The Bold Leadership Revolution, Tara Newman, talks about creating a better relationship with money.

Today, Tara talks about Profit First, her EMS Framework, the common blocks that women face, and helping women feel more comfortable talking and thinking about money. How do you raise your rates? How do we shift our energy without losing money?

Hear about startup burnout, improving your relationship with money, and get Tara’s advice to her younger self, all on today’s episode of The Healthy, Wealthy & Smart Podcast.

Key Takeaways

• Profit First helps women make and keep more money.
• “I’m really passionate about teaching women to change the way they think, and even talk, about sales.”
• The EMS Framework:

1. Energy. What is the energy in which you’re approaching sales?
2. Mindset. What is your beliefs and attitudes around sales?
3. Strategy. This is your sales process, and how you come at it with your energy and mindset.

• “When we feel good, good things happen.”
• “Shifting your energy and feeling good does not actually have to cost a dime.”
• “Selling is about empathy. Women are empathetic. Women are fantastic listeners. They ask great questions. These are all the things that being a good salesperson encompasses.”
• “The secret to sales is to keep going.”
• “It’s okay to be uncomfortable. It’s okay just to listen.”
• “Women think that they need to be perfect in order to make money.”
• “I hear from a lot of women that they don’t feel safe with money. We were never taught how to make it, manage it, keep it, and use it for growth reasons.”
• “There is nothing more frustrating than wanting to do good work in the world, and not having anybody to do that work with or for.”
• “Raising your rates is actually easy. Can you communicate the value and not the amount?”
• “Don’t take yourself so seriously. Be weird. Be yourself. That’s what people want. People buy from people.”

More about Tara Newman

Through her podcast, The Bold Leadership Revolution, as well as her association, The Bold Profit Academy, Tara Newman is the Leader of Leaders. She supports leaders as they embrace their ambition and leave the grind behind. Using decades of entrepreneurial experience and a Master’s in Organizational Psycholgy, Tara is uniquely qualified to teach leaders to run businesses without sacrificing their health, relationships, or integrity by establishing behaviours, habits, and rituals aligned with their vision of success.

Suggested Keywords

Sales, Leadership, Money, Income, Lessons, EMS, Energy, Mindset, Strategy, Profit First, Responsibility, Relationship, Communication, Expectations, Healthy, Wealthy, Smart

Revenue Goal Calculator: Profit First Revenue Goal Calculator

To learn more, follow Tara at:

Website:          https://theboldleadershiprevolution.com

Facebook:       The Bold Leadership Revolution

Instagram:       @thetaranewman

LinkedIn:         Tara Newman

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Read the full transcript here: 

Speaker 1 (00:02):

Hey, Tara, welcome to the podcast. I am happy to have you on.

Speaker 2 (00:05):

Thanks for having me, Karen. I'm excited to be here

Speaker 1 (00:08):

And I will say right when I got on the call. So you can't see this everyone because it's a podcast, but we both have the same rode podcaster microphone. So it's like, this is destiny, but I have a question

Speaker 2 (00:23):

Because I think I know why we have the same ones by any chance. Did Jason help you set up your podcasting stuff or did you ask him for it?

Speaker 1 (00:32):

You know, and we're talking about Jason van Orden, did he? No, no. I just did a lot of research and I went to be my gosh.

Speaker 2 (00:40):

He is like the King of podcast equipment. Yeah. So see, maybe he helped you. I know, I think I got my, this suggestion from him.

Speaker 1 (00:48):

Yeah. I think I just looked around, I went to BNH and I asked them like, this is what I'm doing. BNH photo is a big store here in New York city. And I said, Oh, I'm debating between like, what's the other one that everyone uses the Yeti. Yeah. The Yeti and the route. And they were like, no, you want the rode podcaster? And I was like, I'll spend the money. I'll do it. I'm going to do it. So so yes, when we came on, I was like, Oh my gosh. And then of course we have all these people in common as well. I guess just a New York thing. I don't know. I know, but you sound less new Yorker than me. Well, I'm originally from Pennsylvania, so that explains it. That could explain it. But I was telling Tara when Tara, when we got on that, I saw her speak at Tricia Brooks speaker salon a couple of years ago, year and a half ago. And I thought to myself, Ooh, I like her mental note, like reach out to her for the podcast. And then, you know, 2020 came and, well, we all know what happened there that we do. We all know what happened there. So I feel like I already know you, but now it's a chance for the listeners to get to know you. So let's get into it before we start. Can you give the listeners just a little bit more about you about kind of why you do what you do?

Speaker 2 (02:13):

Oh yeah, sure. That's like a, a loaded question. I feel like I could talk about that forever, but I really teach female business owners how to increase their sales so they can have more cashflow and they can have more profit in a way that's simple and without as much stress, because I know that, you know, when I'm working with women business owners, they're usually really amazing at what they do and they're experts and they love it. And they're passionate about it, but they're not as passionate about running a business and I'm actually passionate about the running the business part and the sales part. So it winds up being like a fantastic

Speaker 1 (02:55):

Partnership. And I will also add that you're also profit first consultant now in my business group that I ran with physical therapists. That was the first book. I said, you have to read this book. Right. And so now this is not a profit first based podcast or anything like that. And we're going to go into a little bit more, but what, what was that like to become a consultant from profit first? Did you read the book and it changed your business? How did that come about?

Speaker 2 (03:26):

So I actually read the book in 2014 when it first came out before, like right before I started my business, but I wasn't, it's not an easy book to read to be honest. And I think like when I read it, I didn't really read it. Like I dabbled, I think my husband read it. And, and so I didn't actually fully read the book until after I was certified, but I had implemented profit first ish in my business in 2006 teen. And it really changed everything. It made things so much easier. I used to have plenty of revenue coming in, but the cash wasn't there, like the cashflow was off. So I get really stuck. And I remember being in a mastermind and being in my hot seat and just being like, I have no money. So that's really why I love profit first is because it really helps women keep, make and keep more money. And I think that we don't think about that when we start out, we think about like, we have this great idea. We love what we do. And it's like gangbusters out the door and then it's like, Oh wait, like there's this money component.

Speaker 1 (04:38):

Absolutely. And especially with women, it seems like and I, I know I'm this way. I hear this from people it's Oh, well, it's, it's the charging part. It's how do you bring up to people? What your, what your fees are and, Oh, I feel weird about it. And that the money issue, especially with women can be really sticky. I'm sure you found that. That's why you do what you do.

Speaker 2 (05:06):

It is really sticky. And you know, we weren't, a lot of us weren't raised with the language for money, especially for me, I'm a gen X-er, I'm 44 years old. My mom stayed home most of the time. She didn't go to work outside the home until later. And, you know, I always say like, women, women come to me and they're meeting me like 15 years into my journey leading them. And so they don't realize that I started exactly where they started. You know, even when I first started my business, that was the first time I was really responsible for my own money. I always tell people, I'm like, I'm so embarrassed. But like, even from before my husband and I were married, I just used to hand him my paycheck and be like, just pay the bills and deal with it. So that was like a really rude awakening when I started my business and my own. And that's really why I've become so passionate, not just about profit, but about helping women sell.

Speaker 1 (06:04):

Yeah. And, and let's get into that because you have created a framework inside the bold profit Academy, which is part one of the offerings that you have to help women and their relationship with money. And it's called the EMS framework. So we know it's not emergency medical services. I Googled that. It's not it. So what is the EMS framework?

Speaker 2 (06:31):

I always joke around though and say it's equally important. So the Amis framework, I'm really passionate about teaching women to change the way they think and even talk about sales, right? The way we have absorbed sales and the framing and the lens through which we look at sales is, is actually not really in alignment for a lot of women. Right? And they, you mentioned some of the challenges that they have, like asking for their rate or understanding their value or not having the confidence to have those conversations, not knowing how to have those conversations. They've never been taught. And if you were anything actually like me and my husband, when we first started our first business, we didn't even realize we have to sell things. And what happened was, is we went out of business. Well, I guess we might make sense. And we went bankrupt.

Speaker 2 (07:30):

Right, right. And we didn't even realize we needed to sell. So ever since then we have made it kind of really a part of our mission is to help people learn from the lessons that we learned. So I've created the EMS framework and it stands for energy mindset and strategy in that order. So what is the energy in which you're approaching sales? Is it desperation? Is it fear? Is it, you know, tense and gripping what's happening with your energy and how can we get you to shift that energy before you even do anything else? And then it's like, what is your mindset around sales? Is it that you don't believe you can sell? Maybe you don't believe you have the personality of a salesperson. Maybe you don't believe that, you know, how any of those things, what are your beliefs and your attitudes is in the mindset piece. And then in the strategy piece, that's your actual sales process. And honestly, any process will work. They're like the same seven steps, all that jazz, but it's how you come at it from your energy and your mindset that makes that the strategic action that you're going to take in your sales process. So much more powerful and potent.

Speaker 1 (08:47):

And what are some common things that you're coaching your clients through? Let's start with energy, right? What are some common energy blocks that women have and how do you help them get over it?

Speaker 2 (09:03):

So I think it's one, and I wouldn't say it's necessarily a block. I think it's our conditioning. Do you believe you deserve to feel good as a woman? Like, do you like, do women have this belief that they should,

Speaker 1 (09:15):

And I have to think about it. So I saw you, right.

Speaker 2 (09:21):

Because when we feel good, good things happen. And when we feel good, we're more confident when we feel good, we have a better self concept. You know, Brian, Tracy, he's a sales you know, well-known sales trainer. And he just says like, can you just say in the mirror, I like myself, but that's so hard for people to do, especially women to stand there and be like, I actually liked myself. Right. But when you can do that with your self concept and how you see yourself in the energy and what you bring to things that changes everything.

Speaker 1 (09:53):

Absolutely. And it's, isn't it sad that I had to think about that. I'm like, yeah, I think I deserve good stuff, but it shouldn't be, I really struggle with it

Speaker 2 (10:03):

That w they struggle with like, feeling joy and pleasure and enjoyment and just good. Right. And it's not fake good. It's not coping in wishing good. It's like, and it's not even like, what's your morning routine, but everyday when you wake up, what are you doing for your energy?

Speaker 1 (10:26):

Is this a question? No, I'm just [inaudible] Oh, no. What am I doing? Well, what, one thing I do that actually does help with my energy is I get up in the morning and I make my bed first thing. And that actually helps with my energy

Speaker 2 (10:44):

A hundred percent. Right. And I think you bring up such a great point, because when I talk about this in the, in the framework, what I want women to hear is it doesn't have to cost to me shifting your energy and feeling good does not actually have to cost a dime. It doesn't have to take a long period of time. You know, you can do it at any point during the day, you know, depending on what you're feeling and where you're at. And so if you, if everyone can just wake up in the morning and think to themselves, you know, what am I doing to care for my energy? What am I doing to feel good today?

Speaker 1 (11:20):

And, and that's a big, that's a very powerful shift, especially in these times when everything there's like tension on top of tension on top of tension. And you know, a lot of people that listen to this podcast are physical therapists. There are health and wellness professionals, and it's, it's stressful, you know? And so being able to do one thing that doesn't cost any more money, it may cost you a tiny bit of time. Not a lot. It takes me two minutes to make my bed in the morning, but I feel like, all right, I've accomplished something. This is good.

Speaker 2 (11:56):

And

Speaker 1 (11:59):

When it comes to, so let's say, you've, you, you are working on your energy. And that obviously flows right into the mindset part of things. Right. And oftentimes, you know, you hear a lot of women say, Oh, I don't want to like sell things. Cause it just feels like icky. I don't want to be like that used car salesman, quote unquote. And that is a mindset issue, right?

Speaker 2 (12:24):

Yeah. I mean, those are your beliefs that you have around, around selling. And so what I like to do is I like to reframe things. So for example, I'll hear somebody say, Oh, I need to create this opt-in so I can lore people in yeah. Loring people. And these are human beings, right? Like you're welcoming people and you're inviting them in, you're sharing something with them that can help them. And the funny thing is, is like women, I think are so naturally gifted salespeople. They just do all the things that great salespeople do it. We just haven't been presented that like, when you think of, of amazing salespeople, I just mentioned Brian, Tracy, right? Like he's a dude in there. There are really great, amazing women salespeople, but there are fewer. And the ones that maybe we think of right off the bat, or like the used car salesman, I hate going a Bob's to buy a couch. No, like that just doesn't work for me. But I think too, like thinking about when you've been, when you've had somebody sell something to you and it's felt really good to kind of shift that perception and to reframe that is really helpful as well. So not looking for the reasons to believe selling is icky, slimy, sleazy, smarmy, whatever your words are for it. And, and finding the examples of it being done really well.

Speaker 1 (13:50):

And do you have examples of people doing it like women in particular who are doing it very well?

Speaker 2 (14:00):

So I can share with you the reason why I think women will sell Stu sells really well. So it's about selling is about empathy and that completely gets missed, especially in the online business space, or like as soon as you like flip open an app and there are all these internet marketers swarming about or anything like that, you, you know, you see it in the health, the health and wellness field, it's, it's gross. It's, flat-out gross. The way that people, and I think they just particularly happen to prey on people's pain, specifically women. So we tend to see it as not feeling good. But women are empathetic. Women are fantastic listeners. They ask great questions. These are all the things that being a good salesperson in campuses. Yeah. It's not so

Speaker 1 (14:52):

Much the sort of vomit all over the person. This is what I do, and this is what I can offer. But instead, it's you doing a little less talking and doing a little more listening.

Speaker 2 (15:05):

Exactly. Exactly. So from my perspective, when we have women in the bold profit Academy and we're teaching them how to sell, we're not teaching them how to do anything different than they're already doing. We're teaching them to leverage the things that already come natural to them. And they experience success so much more quickly because we're not actually asking them to change their behavior.

Speaker 1 (15:30):

Right. You're just, you're kind of putting this obviously into a framework, but almost into a, I don't want to say a script, but into an outline, is that the right or no

Speaker 2 (15:46):

Going to correct you slightly. So the way we do things in the bull profit Academy is through frameworks. And the reason why we pick frameworks is because it gives you a guideline and then you can take that and adopt that to itself. So I'm saying to you, energy is important. You, yoga might be it for you or like throwing around heavy weights might be it for you. Or, you know, I love my Peloton, but someone else might do something else. Right. Someone might not choose to do anything physical, you know? So because I love Peloton, I take Tuneday's classes and she always says she has, I'm giving the class of classes, the recipe, and then you season to taste. And so that's why we do frameworks, because like I said, in the beginning, women business owners, any business owner goes into business because they love what they do. Right. And they're passionate about being the expert that they are. And sometimes the business piece doesn't excite them as much. So we give them a lot of frameworks and templates for them to customize in their business to do that heavy lifting

Speaker 1 (16:50):

Yeah. Template. That's the word I was searching for. It was not coming into my head template. Listen, and I will tell you the people who listen to this podcast, we love that kind of stuff. We love that. Having a little structure around things, you know, we're, we're a little more kind of type a like, let, give me some structure and I'll run with it. And so how has this EMS framework, how does it impact daily sales habits for small business owners for these female entrepreneurs?

Speaker 2 (17:22):

Okay. So there's your secret about sales? I'm not one for telling secrets, but there's a secret. The secret to sales is to keep going. So the whole point of the EMS framework is to build resiliency because if you're taking care of your energy and you're looking at your mindset before you take the strategic action, that's resiliency. So when you wake up in the morning and tired and you think, what can I do for my energy to get me to feel good? Right? You're not just rushing into your strategic tasks, feeling like hell and then burning yourself out or, or feeling like poop, right? Like you're, you're actually feeling, you're always feeling good and you're always able to move forward. You're always fueled up and really taking care of yourself so you can keep going. And that consistency is what brings in what brings in the sales and fills your pipeline.

Speaker 1 (18:22):

And I think you hit on something really important and it's that burnout. And I hear that a lot, especially from women who are just starting their business. They're like, I don't, I feel like I'm already burned out and I haven't even started yet. Right. I haven't even gotten out there. I haven't done the sales yet. I haven't. And I'm already burnt out. So how do you coach those women? What do you,

Speaker 2 (18:46):

I'm sure they come to you, but that I just actually posted on Instagram. I want to be, I'm going to host be hosting a free conversation around women and business and what I'm calling a global crisis of fatigue among women. The number one reason why women come to me is fatigue, tired, feeling like poo, whatever it is, right? Because we have been conditioned to jump through every hoop imaginable for our success. Women's sex women and success. It hasn't typically come easy. We're the first ones to raise our hands were the first ones to volunteer. We are the first, you know, we do a tremendous amount of unpaid labor throughout our, throughout our lives. And we're exhausted. And then we get into our business and we think that we don't know anything. We think we're doing it wrong. We think that you know, we should be doing it differently.

Speaker 2 (19:55):

The marketing messages start to come in preying on the fact that women want financial freedom, but have the things like I'm not good enough. I don't see my value. I'm not con right. Like if you, if you really think it's insidious and it's gross. And so what happens is, is there's more hoops. Well, now I need to go take this training and now I need to go take this course. And now I need to go do more. And if it's not happening fast enough, I must not be doing enough. And if it's not right, all the time over and over and over again. And none of that is true.

Speaker 1 (20:28):

And I have thought that all the time, I still think that all the time, Oh, maybe I should take this course, or maybe I should do this, or maybe I should. And yeah, it's, it is. And it is gross, but it is, it's hard to get that out of your head, because like you said, we've been conditioned you and, and you'll find this really interesting as a fellow podcaster. Talking about that sort of conditioning of how we, we just don't think we're good enough. A, a, a physical therapist or a physio from, from Europe said, how come, how come? I don't see a lot of women as guests on podcasts. I don't understand if we're in a profession that's 60, some percent women. How come all the podcasts are men? How come all the podcasts are hosted by men? Where are all the women?

Speaker 1 (21:23):

And, and and so a pod, a male podcaster, I guess, sent she's like, well, we asked 30 women, 20 of them said no, and five never got back to us. And, and so I think to myself, this is a tough nut to crack. Is it exactly what you said? I don't know anything. Is it all, this is it. They don't have time because they're raising kids, they have to do this. They have to work. And then I brought up, well, maybe it's a way they were asked because I will ask people to come on and I have had women sad, and I don't know what I would talk about. And I said, well, I wouldn't ask you to come on the podcast. If I didn't think you had something to talk about. So I coached them through and we work on a podcast together. Right. And, and so, I don't know. What are your thoughts on this? I mean, you're a podcaster.

Speaker 2 (22:11):

So I think, I think that there's, there's a lot of, there's a lot of things that could be at play here. However, what I do know for sure is women who are experts, don't see themselves as experts, right? Women don't see their value, and that's why they struggle to make sales present themselves. And this is whether you're in your own business or whether you're working as a professional in somebody else's business. Right. And so I know that they struggled to see their value and they struggled to see their con like that they're good enough for that contribution. I, myself, when I was first starting out in my business, I turned down oppor opportunities that I was referred for, where people were like, no tower, you need to go and do this consulting gig. And so I do some corporate consulting as well. And I was like, Oh, that company's too big. Or the topic they're asking, I don't feel confident enough on. And you know, I think that's part of, what's keeping women in a, in a financial bracket. That's, that's not sufficient.

Speaker 1 (23:15):

And what do we, what do we do? What do we do? That's the big question, right? What's your best advice on that? What, like, what do you tell your ladies?

Speaker 2 (23:27):

So I think what's important about this is that I started a couple of years ago in the mastermind that I run, where we had a quarterly money date that we just got together and we talked about money and we do this in the bull profit Academy as well. And it's okay to be uncomfortable. It's okay. Just to listen, I have had women sit on these calls, looking like they were going to vomit. That's how uncomfortable they were. But I think you have to have these conversations with the right people who understand all that's there around money. And that it's actually not about your mindset, because that's what people get told that this is, Oh, this is your money mindset. You're in scarcity. Yeah. That's why. Yeah. Right. No, that's a marketing message. I mean, yes. Women feel scarcity, but you know, I think that there's a lot to unpack around how we think about money from a generational standpoint, from a societal standpoint, from a racial standpoint, like there are so many intersections when it comes to money, you know, you know, my dad, my dad, my dad's a business owner too.

Speaker 2 (24:47):

And he laughs at me sometimes when I start to get a little tight fisted, because he's like, you're just being a refugee Tara. This is like the refugee in our family. Like, cause my grandmother fled Poland and it like in 1920 and he's like, you're not in the shuttle anymore, Tara, like you can, you know, and I'm like, that's right. Like they do. I, I, you know, we, we feel that way and it's not always ours that we're carrying, like our parents have passed down messages or grandparents have passed down messages, society. We don't have the language for money. We feel shame around it so much shame around money. Women think that they need to be perfect in order to make money. They think they have to have the perfect family to be successful. They think they have the perfect marriage. They think. I mean they, the stories. Right. And I think that if you can find a safe environment to talk about that so much more and get that support as possible.

Speaker 1 (25:42):

Yeah. I think that's wonderful, wonderful advice for, for people out there and it doesn't have to be formal. I mean, you can have like a group of, of girlfriends or fellow entrepreneurs that you've, that you trust and that you feel, you can talk about these issues with, because it is hard and I'm gen X as well. And it's the same thing. My mom, wasn't working for most of my childhood and then went back to work a little bit later. And, and it is, there is this, Oh, I don't know if I deserve to make that much money or I don't know, Oh, this seems expensive. Or if I run things even by my parents or something like, Ooh, that seems like a lot, Oh, I, how could you charge so much? How could, and so those messages get stuck in the brain, you know? So it, it does take a lot of work to get that unstuck.

Speaker 2 (26:36):

I will also say, this is where profit first comes in really handy because it gives you language for money. And it gives you a system for money that if you just do the steps and you just do the system, it takes a lot of I find any system in any structure calms. My nervous system makes like literally my nervous system calms down. And so having that structure for my money calms my nervous system way down and allows me to approach my money from a much different perspective.

Speaker 1 (27:10):

Yeah. We, in the PT world, we would call that a SIM, which stands for safety in me. So throughout your day, you have Sims, which are safeties in me or dims, which are dangers in me and from a pain science standpoint it is hypothesized that the more dims you have during your day then Sims, you may feel more pain, especially if you're a chronic pain suffer. So we try and have those have more Sims introduced into, into one's life to outpace the dims. That's actually really good.

Speaker 2 (27:40):

Interesting, because I hear from a lot of women that they feel, they don't feel safe with money. They don't feel responsible with money. We were never taught how to make it, manage it, keep it, and use it to for growth reasons. Like those were things that were not, that were not taught to us.

Speaker 1 (27:59):

Yeah. And I, I will say like using profit first using that system, I started using that a couple of years ago and I was like, Oh, I do have money. Oh, I see how it works. Oh, when it comes to paying my taxes, I'm not stressed out. Like I turned my quarterly taxes up, it's right there and I just pay it. And it's so like, I feel like so light and I do have a history of chronic neck pain. And, and I will say, this is for me a big, it's like a super SIM for me, because I don't feel that anxiety and stress and around tax time, because I know it's there, I've already done it. It's true. And, and it just makes such a huge difference, but you're right. There is that conversation needs to be had for women around their safety, with money and with sales and with, with confidence around all of that. It's hard. And the thing that's so

Speaker 2 (29:03):

Interesting about women too, is that they do such a great job suffering in silence. I'm sure you see this.

Speaker 1 (29:09):

Yeah, yeah. Right. Yeah. Right.

Speaker 2 (29:14):

Bring in silence and not asking for help. You know, not wanting to receive support. I know a lot of women that I work with feel like they need to know it all or they need to get it all right.

Speaker 1 (29:27):

Yeah. No, you hit it. You hit the nail on the head before when you said it has to be perfect before I do something. And that was me for years and years, if I'm going to put a program out, it has to be perfect. I have to have, it's all planned out, needs to be perfect. And it doesn't not at all. And it doesn't. And just having, knowing that was very freeing.

Speaker 2 (29:50):

Yeah. I watch I watch women put a lot of obstacles in their way and, and I know I get that. We do that for self protection. Yeah. To feel safe, to, you know, to, to not fail to, you know, not look silly or foolish or whatever our stuff is. And at the same time we really need to get on with that. Yeah. And we need to find a way to be courageous and brave now more than ever

Speaker 1 (30:25):

Agreed. Agreed. It's just, yeah. And what would you say to people who are like, Oh, it's so daunting. I'm just not even going to bother.

Speaker 3 (30:33):

Yeah.

Speaker 2 (30:36):

Well, I mean, we can have a conversation around what's that costing you [inaudible], you know, and, you know, peel back the layers to that because I can guarantee you that, you know, that's affecting you in ways beyond which you're even able to conceptualize because you're, you're shutting it down and you're closed off. I mean, ultimately people have to be willing to do this and which is why, you know, around the work that I do, it's really important to me to always reiterate to people. It's okay. To be scared. It's okay. If a spreadsheet feels intimidating it's it's okay, like, please don't overthink this, please. Don't overcomplicate this. I am giving this to you the way it is so that all you have to do. I do, we do a lot, like a lot of it in the bowl profit Academy, we do a lot of calculators that like just takes all of the, all of that stuff out of it. Right? Like that charge that, all that charge out of it. If I could just remove all of the barriers and all of the obstacles, I will do that.

Speaker 1 (31:50):

Yeah. And that's what I think that's what women need, you know, it's what we need to feel good is to say, how can you take away using the analogy? So before, can you take away some of those hoops?

Speaker 2 (32:04):

Yep. Yeah. Don't don't you dare go into your money without checking on your energy first and your mindset. Do your EMS before you look at your money.

Speaker 1 (32:15):

Yeah. And that's, that is good advice because we we've all gone into our bank account when I did it the other day, which has happened. What's just happened here. And, and whether that be good or bad. Right. but, but you're right. You have to use that energy that in order to, to get into the sales process, to make money, to help more people, right. Like you said, women want to get into business so they can help people. Well, guess what, if you don't have a good framework what's going to happen.

Speaker 2 (32:53):

There is nothing more frustrating than wanting to do good work in the world and not having anybody to do that. Good work with her for I have been there. Yeah.

Speaker 1 (33:06):

And it's an, and then that can lead to this sort of demoralizing mindset. The, I failed. I can't do it well. Oh, well, I was, this is, this is, I'm done.

Speaker 2 (33:17):

Well, here's where women, here's where women go. I must be charging too much. Yes. So I'm just going to lower my prices. But the reality is, is we just need to up our skillset.

Speaker 1 (33:31):

Yeah. And, and I I'm guilty of that. I've certainly done that in the past. I'm like, Oh, I'll just, Oh, well maybe I'll just lower the rate. And that will get more people to come in. And it doesn't, it doesn't

Speaker 2 (33:45):

No, because then you're looking at perceived value of what you're selling. Right. People will be like, why is she, so why is she so cheap? Right.

Speaker 1 (33:54):

Yeah, absolutely. Absolutely

Speaker 2 (33:56):

Not know what she's doing. She must not be confident. That's

Speaker 1 (34:00):

So true. And, and I try, and you know, a lot of physical therapists now are, are sort of using an out of network model or a cash based model where the person pays you up front. And, and it is hard for women to raise their rates. Men are like, after six months, I raised my rate by $50. Oh, I raised it again. No problem. No problem. Women are like, so how do you, what do you say to someone who's like, I can't raise my rates.

Speaker 2 (34:29):

All right. So there's like the practical piece complex. I mean, it isn't, it's not, so I think there's a couple of things at play. I think if you think that you can't raise your rates, raising your rates is actually easy. You change the number, you put it on your, your chart or your website, right. I mean like the actual act of raising your rates is easy. Maybe we need to do some talking around like how much should you raise them to and whatever. But the reality is is can you communicate the value and, and not the amount, it's not about the amount, it's about the value. And it's about understanding how to talk to people, have a sales conversation and overcome whatever concerns they have around that. So it's, it's not actually a price issue. It's again, it's are you comfortable with selling issue? Yeah.

Speaker 1 (35:27):

Yeah. And that's like you said, where the listening and the empathy and stuff, that women are so good at any way that they're probably doing naturally, they just don't know it. They just need a framework. They just need a little bit of guidance.

Speaker 2 (35:38):

Think about someone who, who, or something you've just bought recently. And like, you just couldn't wait to buy it or you couldn't wait to give them your money. Right. Like why, what happened? What was that conversation like? And inspect that because someone is, is like excited and can't wait to give you their money, you know? Gosh, if somebody's back is bothering them. Or I had sciatica last year, that was like my worst hell ever. So, you know, I would have paid millions of dollars for someone to make that go away. It wouldn't have even mattered. I wouldn't even cared if you were like, I can help. You'll be like, awesome.

Speaker 1 (36:13):

Yeah. And, and I hear that so many times over and over again from people who are not physical therapist or not health and wellness professionals. And I think it's, I love that you said that because I think it will give the people a little more confidence.

Speaker 2 (36:30):

Yeah. I mean, if you're, if a lot of your audiences like physical therapists and chiropractors, I will tell you that, like I had, I've worked with a couple of chiropractors and they're like, I went to the chiropractor convention, I'm going to be facetious and silly. I went to the chiropractor convention and I came out with this 4,000 page manual on how to run my back office and my front office and all this stuff. And I'm like, great. So what are you going to do to actually stand out? Because the 5,000 other people that went with you got the same 4,000 page manual. And so I find a lot with health practitioners that I work with, they really it's beneficial to get outside of that health practitioner loop and, and, and look to find strategies from other industries talk to people who are outside that industry.

Speaker 1 (37:23):

Yeah. Yeah. Great advice. I

Speaker 2 (37:25):

Mean, that's with any industry, but I just specifically know sometimes that, you know, or, or in health industry too, you, you tend to have a lot of regulations and quote unquote rules. Right. So you'd get very stuck in like, well, the regulation, the regulation, the regulation. And so I sometimes come in and I'm like,

Speaker 4 (37:47):

Is that really the regulation?

Speaker 1 (37:54):

But yeah, it is that, that is true. There are some perimeters from which we have to work around, but you can still work around them and be successful and, and have a better relationship with money, which is all, you know, what we're talking about here today is just to how to have a better relationship with money and how to not be afraid of it and how to move forward with your business, knowing that it's, it's part of business. Yup. Period. When we take it personally, but it's business, it's business. Yeah. It's business. And now before we wrap up, is there anything that maybe I over or that we didn't cover that you're like, Oh, I really want to, I really want the listeners to know this.

Speaker 2 (38:43):

I think we really we really covered a lot. Actually. We talk a lot, we talked a lot about money and sales, which is so exciting to me cause I can talk about that forever and ever and days.

Speaker 1 (38:56):

Well, speaking of which, where can people find out more about you to learn about when you're, when you have events and learn about your programs and follow you on social media and all that fun stuff.

Speaker 2 (39:08):

Okay. So the first thing that I want everybody to do is I have a resource for your crew. So if they go to the bold leadership revolution.com forward slash resources, I have a revenue goal calculator that actually you plug in your personal information, it tells you based on how much you need to make to cover your expenses. It tells you how much revenue you need in your business. And it'll plot it out with profit first. It is nifty

Speaker 1 (39:39):

Amazing. And we'll have that link in the show notes.

Speaker 2 (39:44):

Yup. I like to hang out on Instagram. So I'm at the Tara Newman and I have a podcast, the bold money revolution.

Speaker 1 (39:51):

Awesome. So Tara, last question, knowing where you are now in life and in career, what advice would you give to your younger self?

Speaker 2 (40:03):

Hmm. Don't take yourself so seriously. I'm a serious person. Like I could be super serious. And I think like if I had to do it all over again, just like be weird, you know, be yourself. That's what people want is people buy from people, right? Like you're humans are out there and they want to work with you and they want to know you in all your weirdness and all the things like just be you it's, it's really that simple.

Speaker 1 (40:34):

Yeah. And I remember having this conversation with someone else on the podcast and said, you know, you want to be the Flamingo in a sea of penguins

Speaker 2 (40:45):

For sure.

Speaker 1 (40:46):

Because there's like you said, there's someone out there who's looking for you for you. And if you're like everyone else they're going to miss you.

Speaker 2 (40:54):

They, yes, there are people who are out there. And I think here's the thing when you beat, when you're more, you, you S like other people feel seen. And when you tell your story and you can connect with people, like just super quick, I just had a recent ADHD diagnosis at 44. And I, when I was like, Oh, I think I need to get an evaluation done. I went and we went to listen to the whole bunch of podcasts and I just typed in ADHD. And there were all these women podcasters with ADHD, and I would listen him. And I would cry because I didn't know how to, I was so normalizing what was not normal, but I lived with it my whole life. And I didn't know. And them sharing their story helped me see, like, what was normal, what wasn't normal, what I needed to talk to my doctor about places where I could be releasing guilt that I felt about things. And so I think it's just so important.

Speaker 1 (41:59):

Yeah. And thank you for sharing that. That's so, so powerful for for people to know that there are others out there going through the same thing and that yes, you're seen in your herd. And I think that's a great way to end the podcast. So thank you so much, Tara, for coming on, and I really appreciate it. And I can tell you that all the listeners do too.

Speaker 2 (42:21):

Thank you so much for having me

Speaker 1 (42:23):

And everyone. Thanks so much for listening in today. Have a great week and stay healthy, wealthy and smart.

In this episode, Physical Therapist in Detroit, Ted DeChane, talks about his experience living with Long Covid.

Today, Ted talks about his Long Covid timeline (including attempts to return to baseline, his relapses, and his work), the Long Covid Physio group, and the mental aspect of managing Long Covid. How has Ted adapted his life and work around Long Covid? What is the most common question people ask him about Long Covid?

Hear about the importance of peer support and shared experience, the role of Physio in managing Long Covid, and how cognitive and emotional fatigue can set off Long Covid, and get his advice to his younger self, all on today’s episode of The Healthy, Wealthy & Smart Podcast.

Key Takeaways

• “Long Covid in itself is not caused by anxiety, depression, and those things, but they certainly do exist.”
• “Finding the things that help you get through the day is really important.”
• “If you don’t allow yourself that pacing, that rest, you’re going to be forced into it.”
• “It’s so much more than just the physical aspect of having Covid. Emotional and cognitive overload can cause these physical symptoms as well.”
• “We [physios] can play a huge role in the Long Covid epidemic.”
• “Sometimes these symptoms can come days later.”
• “Helping them [patients] log what’s triggering their relapses is helpful.”
• “If youre interacting with people with Long Covid, just have a little sensitivity around some of these questions. They can be triggering, and they can be stressful, and can be something that can increase symptoms of Long Covid.”
• “10% of people who are diagnosed with Covid may have Long Covid symptoms.”
• “Don’t be so rigid in your box of knowledge. What you learn in PT school is great, but there’s so much more out there. Be open to things you haven’t heard of or things that don’t fit what you’ve heard.”
• “It’s okay to step outside your box and look at something from a different lens. Even if it doesn’t quite make sense yet, be open and willing to learn about something a little different.”

More about Ted DeChane

Ted DeChane is a physical therapist in the Detroit area specializing in pediatric therapy. He covers multiple settings including school-based, outpatient, and acute care. Ted became ill with COVID-19 in March of 2020, and continues to experience persistent symptoms.

As part of the Long Covid Physio group, he has contributed to podcasts, articles, and peer outreach.

Suggested Keywords

Covid, Long Covid, Physical Therapy, Physiotherapy, Recovery, Mental Health, Support, Fatigue, Symptoms, Adaptation, Relapses, Healthy, Wealthy, Smart,

Resources:

Ted - “Living and Working with COVID.”

Uncharted: Patient Experience With Long COVID

Round Table Talks: Round Table Talks

To learn more, follow Ted at:

Website:          https://longcovid.physio

                        https://teddechane.wixsite.com

Twitter:            @TedDeChaneDPT

                        @LongCOVIDPhysio

Instagram:       @longcovid.physio

LinkedIn:         Ted DeChane

Subscribe to Healthy, Wealthy & Smart:

Website:                      https://podcast.healthywealthysmart.com

Apple Podcasts:          https://podcasts.apple.com/us/podcast/healthy-wealthy-smart/id532717264

Spotify:                        https://open.spotify.com/show/6ELmKwE4mSZXBB8TiQvp73

SoundCloud:               https://soundcloud.com/healthywealthysmart

Stitcher:                       https://www.stitcher.com/show/healthy-wealthy-smart

iHeart Radio:               https://www.iheart.com/podcast/263-healthy-wealthy-smart-27628927

Read the full transcript here: 

00:02

Hey, Ted, welcome to the podcast. I am happy to have you on this month as we're talking all about long COVID. So welcome.

00:10

Yeah, thank you for having excited to be able to talk about it. Okay, so

00:15

let's start out with the basic question. What is your interest in long COVID?

00:22

Yeah, unfortunately, it's kind of been thrust upon me, it wasn't something I chose to be a part of. I became ill with COVID symptoms in March of 2020. right at the beginning of the pandemic, I work in an acute care hospital in the Detroit area, which was a early hot spot, so hard to say where how I contracted it. But regardless, I did, and I had the pretty classic textbook COVID-19, acute phase, cough, fever fatigue, lasted about probably two to three weeks, that initial acute phase, and I had recovered mostly so I thought, went back to work back to exercising back to running, living, all those things and just couldn't, couldn't quite get back to where I wanted to be and was pre illness. I had just been suffering from fatigue, and since some heart rate issues, inability to tolerate exercise, and it was beyond the kind of normal deconditioning. You know, I've been in and out of running for years. So I knew that, you know, when you first get back into it, it's not always fun or pleasant. But it wasn't that normal, fun or not fun or not pleasant feeling it was this, just complete debilitation, you know, laying on the couch in a dark room, couldn't even tolerate sitting up kind of thing. And that's when I initially knew that something was wrong and started reaching out to healthcare professionals. My own health care professionals couldn't really give me an answer. It was unheard of at that point, that early on. But I connected through Twitter of all places with some other people who were experiencing nearly identical thing that I was. And that's when we kind of realized that this was a bigger problem than it had seemed to be initially. So that's kind of where we, especially a group of physical therapists got together and kind of began bouncing ideas and symptoms and trial and error off of each other and realized what was working, what wasn't working. And it was through that, that we kind of became this long COVID physio group to try to help each other initially and then realized that we needed to start helping others as well. So that's kind of how I got involved in the long COVID. process.

02:50

And it must have been quite scary in the beginning, because like you said, the doctors didn't know no one knows. So very early on. Do you remember when that diagnosis of long COVID symptoms or you know, being diagnosed with lung COVID? When When did that happen? Like what was the timeline on that?

03:14

Yeah, it's definitely a fuzzy gray area in the beginning, you know, I was sick in March, God, quote, unquote, better April, May. And then June is end of May, early June, is when I really began trying to pick up the running, I was like, Okay, I have to get going. You know, it's time I've been down for a month and a half now. And that's kind of when my gears started turning that it wasn't right. It wasn't until probably October or November that for me the phrase long COVID really hit home and, and I kind of gathered that that's what was going on. So it, it took a long time for me to realize for others to realize that this wasn't right. It's not, you know, expected progression of what we thought was supposed to happen.

04:03

Yeah. And I think Daria echoed a lot of what you just said, in that she was like, I just wanted to get back to running. I'm a PT, so I'm just going to use graded exercise. And that did not work.

04:15

Yeah, it's, it was really kind of a mindset shift. When you when you really get down to it, you know, we as pts we know that we need to go or we think we need to go I should should correct myself. You know, we thought that's what we had to do. And we tried it and we we did not it didn't work. So yeah, that really clued me especially in that, you know, this wasn't right, you know, as pts where we're supposed to be the experts at monitoring Response to Intervention so that I just, you know, it's hard. It's easy to do in when you're monitoring a patient's response to intervention, but when you're kind of monitoring your own, it really was another hurdle to cross to accept that. You know, I Can't do these things right now. So

05:02

and you know, dari and I also talked about that mental aspect aspect of it, and how, gosh, so challenging? So what what have you done around your mental health and the mental aspect of living with long COVID that maybe you can give advice to others?

05:20

Yeah, that's a really important part of it is the mental health aspect. You know, we always stress that there is can be a lot of anxiety, depression, fear over a long coat COVID in general, but especially long COVID diagnosis. But we also want to emphasize that that is usually a secondary issue, you know, you know, long COVID in itself is not caused by anxiety, depression, those things, but they certainly do exist. And it's, it would be remiss to, to not mention them. For me, personally, you know, there was a long time where you kind of get that dark cloud over you, and you think, am I ever going to get better, and I still have those days, to be quite honest. But, you know, I think just focusing, and thinking about the positives, and the gains that I have made, personally, has really helped me. You know, I, I see it a lot on my Twitter and my Facebook history timeline coming up, especially this time, on my runs that I did, and all my failed runs that I did, and you know, even not going to work some days not getting off the couch some days, and those days are less than less than less now. So really looking back where I was, and where I am now is, it's been really important for me, to see that there is progress being made. It's it's not linear, it's not quick, but it's there. So that has helped me personally kind of get through that. But in addition, the peer support has been really instrumental, um, that we've created kind of through long COVID physio, there's a whole group of us who kind of have a very similar mindset, a very similar training, and a very similar experience. So we can all kind of commiserate and, and vent when we need to, but also pick each other up when we need to share resources, those kind of things. So finding that group has really been helpful.

07:09

Excellent. Yeah, finding that having someone who's gone through what you've gone through, or is currently going through, that peer support can be so so helpful. And we'll have a link to long COVID physio in the show notes for this episode for anyone who wants to learn more about what you guys are doing, and maybe they need the support themselves. So we'll have a link to that. And now you said something. Just before about some days, you can go to work, you can't get off the couch. So let's talk about how one can adapt to living with long COVID because we got to do things, right. I mean, most of us have to work or most of us have to do things around the home or with family and friends, etc. So can you talk about adapting all of that while living with long COVID?

08:04

Yeah, initially, that was really tough thing for me to do. And even still, it is a very tough thing to do, especially as pts, we have a very active physical job. Regardless of what setting you work in acute outpatient, you know, I'm in pediatrics, as well as acute care. So there's a lot of up and down moving, running, note taking cognitive, mental, emotional exertion that's going on, and all those things can trigger these long COVID crashes, relapses, post exertional malaise, whatever your name of choice is. So finding the things that help you get through the day is really important. Some of the things that a lot of us have found helpful. pacing is a big one. So you really have to look at your day, how can you chunk it up and kind of take things minute by minute, which is, again, hard to do when there's productivity demands and billing demands, and maybe you're a clinic owner, and you're, you know, relying on that income. So that is a really hard thing to do. But it's so important. And I always say that if you don't allow yourself that pacing, that rest, you're going to be forced into it. So it's better to do your best to plan around it rather than let the kind of disease process do it dictate it for you. So, you know, if I think I'm going to push through this week, and I'm, you know, going to make my productivity while the next week, I might have to take two days off work and then I'm not helping anyone. So, you know, really accepting the fact that you do have to listen to your body and rest when you need to and, and make the accommodations at work, whether it's building in an extra break, or maybe you need to do your charting in a dark room. You know, maybe there's a half hour in the day where you can just lie down on a mat table in a treatment room and have you know, 1520 minutes You know, no stimulation, it's really about finding those things in your day that make make it easier. So you can last, you know, through a day through a week through, you know, a month kind of thing?

10:14

And how would you suggest someone have this conversation with their supervisor, Boss owner of the clinic they work at, because you obviously have to have cooperation with the people that you work for. Now, if you're your own boss, I guess that's a different story, you can probably, you know, kind of set your schedule accordingly, maybe, but what advice do you have for people who maybe have to have these difficult conversations with their employers?

10:42

Yeah, it's, it's a really tough place to be in for the employee, and also the employer, you know, they have a budget to make to, I get why they, you know, set these demands, but at the end of the day, you really just have to be open and honest with them, and your co workers about what's going on, what your needs are, how you how you need the accommodations, you know, that's a struggle a lot of people are having, especially in the US, we don't have a lot of options, as far as you know, paid time off. You know, in the UK, there's, there's union representation, which we don't have in the US, generally speaking as a profession. So it's really important that you can connect with your boss and explain the importance of the, the needs for accommodation. You know, we do know of a few people who have been successful kind of navigating the, you know, short term, Long Term Disability here in the US under like a chronic fatigue type diagnosis. So that may be a route you have to take, if you're finding trouble getting these accommodations, obviously, try to find a, you know, physician who is supportive of your long COVID and the needs for the documentation that you might need for that. You know, but I, I'm fortunate enough that I have, you know, administration who has supported me, and I think that's do a lot in part A to them, thankfully, but also, you know, just to the open and honest dialogue that you have with them, and explaining the needs and how putting in these needs now can save you some time later. You know, so that it's beneficial to everybody.

12:26

Got it? Yeah, great advice. So just being open and honest with your communication with your supervisor, employer, etc, would be your best advice to people who maybe are living with long COVID and don't know how they're going to get through the week.

12:41

Yeah, you know, hopefully, that route works, obviously, there's going to be places where that isn't going to work, where you might need to escalate. In addition, you know, finding co workers who are supportive, you know, maybe you have a close coworker that you can confide in and kind of help you through the process. You know, I kind of had a funny story when I was kind of navigating my own long COVID process. I had a co worker who texted me and she said, Are you feeling okay, today? And I said, Actually, no, you know, how did you know because I thought I was holding it together. And she's like, Well, I can tell whenever you're not feeling well, because your voice gets deeper. And I just thought, Oh, that's really cool that she was able to notice that, because I didn't even notice that. So, so finding a co worker who you can lean on, and maybe they can, you know, help you through things, if you have a difficult patient you need help with or you say, Hey, I have to take the afternoon off, can you help cover some of these patients? So it's not, you know, such a burden on the clinic, kind of thing, just building those relationships, and being open and honest about it.

13:41

Yeah, makes perfect sense. And you sort of touched on something that I want to highlight. And that is when people think of long COVID and they think of pacing, they think of the physical pacing. Right. So moving your body pacing, but you also touched upon and I would love for you to go into a little bit more the cognitive and emotional fatigue that can also set off long COVID So could you explain that for the listeners?

14:11

Yeah, that's a really difficult piece to manage, because it's not as black and white as some of the physical things that happen. But a lot of us, including myself have noticed that with increased cognitive load, you know, we have the same physical symptoms that we would if we were to run a mile you know, just maybe we had a really hard case we needed to critically think through or or, you know, in my case, I was doing a lot of spreadsheets over the summer we were doing some budgeting things and normally that would not have been a problem for me but I just and this was before I even realized what was going on. You know, I was having struggling with these spreadsheets and and that kind of would set me back and and I would have to shut the computer off and and take a step back in a day off and Um, so those things we don't really realize are adding to the stress of our mind and our body. You know, the documentation and screen time, if you're doing a lot of notes on your computer, or you're doing virtual sessions kind of thing that can really fatigue your body and give you a lot of the same symptoms as physical would. Are you muted there, Karen?

15:25

Yep, sorry, I was just saying kind of unbelievable, right? Because it's like, it's so much more than just the physical aspect of having COVID. It's, you know, people talk about brain fog. And they, they talk about fatigue, but knowing that just emotional and cognitive overload can cause these physical symptoms as well. And I think that's something that a lot of people are not aware of.

16:04

Yeah, and I think a lot of people have set themselves back thinking they're doing a great job pacing and not realizing that they're still carrying the emotional load of their patients, or maybe there's something going on at home a relationship issue, you know, family stress, things like that can can add to your total body fatigue, and that's. So when you look at your, your work day or your home day, you also have to include that piece too. So like, for me, one thing that I found difficult was bouncing back between patient care and documentation, just the back and forth was like a lot for me to get my brain switched into like documentation mode, and then back to patient mode. So, you know, for me, what I found helpful is actually kind of, you know, doing a few patients in a row, and then then going and doing a couple notes at a time, rather than where I would normally do you know, a patient, a note, a patient a note. So everyone's different, that might not work for somebody. So it's really finding that balance of how you can navigate doing your job, but also not being a detriment to your own health.

17:15

Yeah, so it sounds like a little bit of trial and error until you kind of find that sweet spot.

17:21

Exactly. And that's kind of what we tried to learn from each other in this peer support group is, hey, what worked for you? Because I might like to try that. So

17:30

make sense. Now, let's talk about the physios role when it comes to long COVID. So where do we fit into this recovery in this puzzle?

17:41

Yeah, I think we can play a huge role in in the long COVID. epidemic, if you want to call it that, because that's what it will become if it isn't already. I am fortunate enough to not have to be treating these patients right now, especially in pediatrics, there is cases of lung COVID. In kids, it's not as prevalent. Unfortunately, I've not had to deal with that. But as physios, we are spending a lot of time with patients, more so than most, any other health care provider, you know, we have the knowledge of pacing and, and monitoring, medical status. And I think we need to use that. So being a part of the pacing process for patients I think would be good because that is a cognitive tool for someone to sit down and plan out their day. So if you can kind of help them be there to guide their day, just as you would a patient who has, you know, hip replacement or cardiac surgery, you would you would be the person to help plan their day out to make them the most efficient. So that's something you could also as a PT, and do for a long COVID patient being the one to help them through that. But But in addition, you know, as I kind of mentioned in my intro, that response to intervention is so important and what sets us apart from other providers is that we we can pay attention to what's going on. You know, and make sure that our treatment isn't a thing that's doing harm and causing the post exertional malaise or symptom exacerbation. And it's really important to look through that through a lens of not immediate either sometimes these symptoms can come days or later. So think of it more like delayed onset muscle soreness, you know, you might do a treatment on Monday, they may be fine Tuesday and Wednesday and then Thursday, all the sudden they flare up. Well, it could have been your treatment on Monday that caused that. So it's important to recognize and do a look back at each session, you know what happened kind of thing to kind of help help the patient progress because if they're going into these crashes, they're not progressing. They're regressing so it's important to progress rather than regress.

19:55

Yeah, so it sounds like it's a lot of on the physios part, certainly education. to the patient. And and I really love how you said you can help them set up their, their pacing schedules, you know, you can be the person, you You said you have the long COVID group to bounce ideas off of, well, you can be this person to help them bounce ideas off of right?

20:16

Yeah, exactly. They might not have a peer support group that they found, you know, or they might be overwhelming for them to go to a peer support group. So for you to be the patient, or the person to say, hey, let's sit down and say, Okay, so the shower is an issue for you. Well, how can we fix that maybe you need to sit down when you shower, maybe you need to shower in the evening, something like that, you know, trialing and airing with them. And you're helping them log what's what's causing and triggering their relapses is super helpful.

20:48

Yeah, I think that is great advice for any physio, who is going to be working with anyone with long COVID to kind of know that it's more than just giving exercise way more.

21:00

Yeah, absolutely. You know, you we have a huge role as far as physical therapists and it goes beyond exercise. You know, that is an important piece of, of our profession, obviously. But there's so much more that we can do and, and step outside of our, you know, musculoskeletal box and kind of really help these patients at the end of the day.

21:21

Yeah, I think that's great. Thanks for sharing that. And now I have a question. What is the most common question people ask you about living with long COVID? Because I'm sure you get questions, even if it's family, friends, if you divulge to your patients, hey, I'm living with long COVID what's what's like the main question you get from people?

21:43

Yeah, there's a lot of questions. You know, the biggest thing could be it could be questions, that's okay. Yeah. Well, the a lot of people always ask about, did you have the vaccine? Did that help you? And my answer is no, that's a big question. A lot of people did find relief from the vaccine I personally didn't. But then a lot of a lot of the times the question I just get is, how are you? And that's a really tough one. Because you never know that they want, you know, I'm fine. How are you? Or do they want the Well, today, I have to lay on the couch for an hour in the darkness. And so that that is a tough question to navigate. It's just the How are you? So if you are asking that question of long COVID of, you know, patient, someone who's living with long COVID, you know, be prepared for a full answer. You're actually intending that. So, because it can be loaded?

22:35

Yeah, absolutely. Yeah. I don't even think about that. How are you? Well, yeah, really want to know, or do you want me to write? Exactly, yeah, yeah, yeah. Yeah. I think that's a great advice for people to what's what's it a question that you wish people would ask you? Or maybe how to phrase that? How are you questions? You know, what I mean?

23:00

Yeah. You know, I don't mind that. How are you question? As long as it's coming with, you know, good intent, and, and all that. So, you know, I think it's okay to ask, but also know that maybe that can be a stressful question for for someone. So, you know, maybe, maybe instead saying, you know, is, you know, how, how are you feeling today? Is there something I can help you with kind of thing, you know, putting a more kind of purposeful spin on it rather than, you know, just kind of, for your own personal curiosity. So,

23:35

yeah, I love it. I love that. How can I help question? I asked that a lot. And it's Yeah. So nice for someone to hear that. Especially. I think people living with long COVID many of you don't look sick. You look fine. I'm sure people have said that to you. Countless times. And it drives me crazy. That's a tough thing to hear. Yeah, you look fine. It's one of those invisible diseases, and it's invisible diagnoses. And I think that can be very stressful. Yeah, you know, you do hear that. Oh, you look good today. Well,

24:15

I did a good job then. Cuz? Because I don't feel good. A lot of days. So yeah. You know, and I get where people are coming from, but it is, it is kind of just something that is a hard thing to hear. Yeah,

24:27

yeah. Yeah. So I think for people, if you're interacting with people with long COVID just have a little sensitivity around some of these questions, you know, because they can be triggering, and I think that they can be stressful and as we just spoke about stress can be something that can increase symptoms of long COVID. So we want to try to minimize that throughout the day, right? Hmm, yeah. Well, Ted, I have to tell you, this is great. I'm so looking forward to Our roundtable discussion at the end of the month with you and Daria and Darren, and maybe a surprise guest in there as well, time will tell. Because I just think, as we discussed before went on the air, it's timely, it's important. If the, if they're modeling out 10% of people who are diagnosed with COVID may have long COVID symptoms, it's a lot of people. And so if you're a physio, odds are you may be seeing someone come into your clinic with long COVID.

25:35

Yeah, and even that 10% number could be conservative. So it's, it's hard to say there are a lot of a lot of people out there and a lot of people who still haven't heard of long COVID, especially outside of the medical community, I've run across a few people who have kind of talked to me. And as they start to tell their story, I kind of have that little thought in the back of my mind that, you know, this was me 15 months ago, I can hear some of the things they're saying in myself. So

26:02

yeah, yeah, well, hopefully things like this will help get the word out to more and more people. So thank you so much for your honesty, and for sharing your own story here on the podcast now, where can people find you if they have some questions?

26:17

Sure. Yeah. So my main social media is my Twitter. It's at TED Duchaine, DPT. And then we also have just started long COVID we have our peer support long COVID physio group, but we also just started a page for people who aren't living with long COVID just for information. So that's on Instagram at lone COVID physio, and also on Facebook and Twitter at the same handle. So

26:45

Excellent. Well, thank you so much. And we'll have links to all of those at podcast out healthy, wealthy, smart, calm under this episode. And last question, knowing where you are now in your life and career. What advice would you give to your younger self? Let's say fresh out of PT school?

27:03

Sure, yeah. I would say don't be, don't be so rigid and you're in your box of knowledge, what you learn in PT school is great, but there's so much more out there be open to things that you haven't heard of, or things that don't fit what you've heard. You know, I can honestly say that have had I not been living with long COVID I would have had that little squint in my eye that a lot of pts probably have right about now listening to this. And, and that's totally normal, but it's okay to step outside your box and, and look at something from a different lens, even if it doesn't quite make sense yet. Be open and willing to learn about something a little different.

27:46

I think that is great advice. Thank you so much for that. And thank you for coming on today. It was pleasure. Yeah, thank you, and everyone. Thanks so much for listening. Be sure to catch us for our roundtable talk, and have a great couple of days and stay healthy, wealthy and smart.

In this episode, Physical Therapist at Pro-Activity, Dr. Daria Oller, talks about living with Long Covid.

Today, Daria talks about the signs, symptoms, and causes of Long Covid, how to implement #StopRestPace, and how wearables can help guide your decisions. What are the considerations for athletes wanting to return to sport post-Covid-19 infection?

Hear about the role of social media when it comes to Covid, the many mental health aspects of Covid, and get Daria’s advice, all on today’s episode of The Healthy, Wealthy & Smart Podcast.

Key Takeaways

• “Long Covid comes after an acute Covid-19 infection. The current definition is ‘prolonged symptoms after 4 weeks.’”
• “It’s multisystemic… Two people don’t present the same.”
• “We’re not in a lab. We can’t control for every possible thing. Just tweak one little thing and see what happens.”
• “Our energy is very finite.”
• “Learn how to pull back, do what’s really essential first, and find opportunities to rest when you can.”
• “Work with where you are that day.”
• “With any athlete who has had a Covid infection, you just need to be aware and monitoring for possible red flags… The fact that they’re able to keep going doesn’t necessarily mean that it’s safe.”
• “There are people who are committing suicide from Long Covid.”
• “There are lots of great peer support groups. Even if you’re not getting professional help, you at least have other people you can relate to.”
• “Looking for those little wins and victories, even if they’re small, even if they don’t seem like much, it helps.”
• “Do not try to push through symptoms… Stopping, resting, and pacing makes a really big difference.”
• “You don’t have to push so hard all the time. Things will be there. You know yourself, you know what you’re capable of doing, but resting is as important as pushing hard.”

More about Daria Oller

Daria Oller is a physical therapist at Pro-Activity in Lebanon, New Jersey in both an outpatient clinic and on-site with employer clients. She specializes in working with dancers and athletes and in prevention and health promotion. She is also an athletic trainer, having worked in clinical, research, and education settings.

She served as the PI for a study describing the injury and illness experience of youth campers at university-sponsored summer sport camp program.

Daria contracted COVID-19 in March 2020. It continues to affect her daily life, including her ability to participate in and pursue her passions for dance and running. She is one of the founding members of Long COVID Physio, and has been sharing her lived experience on social media.

Suggested Keywords

Covid, Physiotherapy, Recovery, Long Covid, Healthy, Wealthy, Smart, Symptoms, Relief, Pacing, Resting, Support, Energy, Mental Health, Sport,

To learn more, follow Daria at:

Website:          https://www.pro-activity.com

                        https://longcovid.physio

Facebook:       @LongCOVIDPhysio

                        Daria Oller

Instagram:       @ontapphysio

                        @proactivityus

                        @longcovid.physio

Twitter:            @ontapphysio2

                        @LongCovidPhysio

LinkedIn:         Daria Oller

YouTube:        Long Covid Physio

Twitter Accounts to Follow for more info on Long Covid: 

Subscribe to Healthy, Wealthy & Smart:

Website:                      https://podcast.healthywealthysmart.com

Apple Podcasts:          https://podcasts.apple.com/us/podcast/healthy-wealthy-smart/id532717264

Spotify:                        https://open.spotify.com/show/6ELmKwE4mSZXBB8TiQvp73

SoundCloud:               https://soundcloud.com/healthywealthysmart

Stitcher:                       https://www.stitcher.com/show/healthy-wealthy-smart

iHeart Radio:               https://www.iheart.com/podcast/263-healthy-wealthy-smart-27628927

Read the full transcript here: 

Speaker 1 (00:03):

Hey Daria. Welcome to the podcast. Happy to have you on this month, where we are talking all about long COVID symptoms and rehabilitation. So welcome.

Speaker 2 (00:13):

Thank you for having me.

Speaker 1 (00:15):

And now what's your interest in long. COVID let the, let the listeners know if they don't follow you on

Speaker 2 (00:21):

Twitter. It's a very public about this. I got sick with COVID last year in middle of March, 2020, and the symptoms never went away. And early on, we were told people recover in two weeks and after two weeks, I said, I'm not better yet. And I was young and healthy. I'm a distance runner, I'm a dancer, pretty fit, and I just wasn't getting better. And I didn't know anything about post viral illnesses at all. So being the good PT that I am, I just pushed exercise and pushed and pushed because that's what we do. And it made everything a lot worse. And then through Twitter some of the PTs who specialize in myalgic encephalomyelitis and chronic fatigue syndrome reached out to me when they saw my tweets and said, this is bad. You need to stop. We're gonna help you. So then it just snowballed from there.

Speaker 2 (01:07):

I started learning about chronic fatigue and the similarities that were coming up with long COVID. And so besides that, like just personally affects me, cause it really drastically effected my life and thinking if I wasn't aware of this and I'd been a clinician for 15 years, like how many other people don't know about this? Because it seemed like just as all the PTs with long COVID started finding each other. So many of us had no idea, and this is across all different specialties and settings, different ages. And we just didn't know, unless you somehow happened to wind up in the chronic, the peak space already. We had no idea and it seems really easy not only to make mistakes with ourselves, which many of us who got sick in the first wave did, but to then make mistakes for patients because you're going to do great at exercise. That's what we do. You're going to encourage patients to push a little bit, to push through all the symptoms and it's really dangerous. So I want to make sure, you know, that people are learning, that we're educating our colleagues and even they're trying to reach out to patients to and teach them how to advocate for themselves, teach them some of the basic information that's out. So yeah. So in addition to just affecting me personally, I've seen professionally how important it is to help educate and advocate.

Speaker 1 (02:10):

And can you, Darren and I spoke about this last week, but I feel like we can never say it enough. Can you define what is long COVID and what are some common signs and symptoms?

Speaker 2 (02:26):

Yes. So long COVID comes after an acute COVID-19 infection. So it basically, you don't clear the symptoms. You continue to have symptoms and they can change what the acute symptoms are in those first couple of weeks can be drastically different. What happens weeks and even months later, people are reporting new symptoms. So right now the current definition definition is prolonged symptoms. After four weeks, there are people who have it just for a couple of months. Many of us are on month, 15 month, 16, and some of the common signs and symptoms. Some like for me, example, seem to have carried over from the acute having shortness of breath, chest tightness, chest pain, all different kinds of chest pain. Dysautonomia is really common now. So we're seeing people who have really funky things happening with their heart rate, with their blood pressure, heat and tolerance, just a really poor tolerance to exercise.

Speaker 2 (03:14):

And so taking a term from chronic fatigue syndrome, there's post exertion mollies, or we've been saying post exertional symptom exacerbation. So whenever you can do not only exertion like exercise, heavy exercise, but just general physical exertion, you know, walking to the corner could have cognitive exertion, like going to work or emotional exertion that can set off a whole cascade and worsened symptoms. And that can range from just get small exacerbation to people, get fevers for me personally, like I can't get up off the couch. I can't speak really well. And it's multi-systemic so it's really interesting because two people don't present the same. Some people can have more neurological, some could be more cardio, some could be more cognitive respiratory. There can be a whole mix. We're seeing people who have mass cell activation syndrome and you're seeing allergic type things and rashes and changes in food tolerance and GI disturbances. It is really, really across the board. So there's no one set. This is what long COVID looks like. But if there are symptoms that are just continuing for weeks to months after the acute infection, terrible, terrible.

Speaker 1 (04:18):

And let's talk about from, so your physical therapist, athletic trainer, let's talk about the, some of the treatment parameters around people living with long COVID. So you had said, when you talked about why you're interested in long COVID it's because you are someone living with that and you said, I'm just going to exercise. I'm going to go harder. I'm going to put in a graded exercise program and that's going to get me all better because that's what we do. So tell me now, what should therapists or trainers be trying to implement into your patients or, or even you, if you are

Speaker 2 (04:57):

Someone living with them? Yeah. So it's, it can be such a different approach. I'll start with, there are some people that starting with the light exercise program can be appropriate, but there are things that you really need to monitor for. And nobody's like red flags. So looking at somebody has its own an again, seeing their heart rate blood pressure changes, just poor tolerance to even just moving from supine, to sitting upright, to standing poor tolerance to the heat, that trying to get that under control first so that it could be just working on breathing in their sessions, working in diaphragmatic, breathing, trying to get out of that, like very accessory breathing pattern because many of us hyperventilate and just don't even realize that we had adapted that pattern. I look at this tooth, I have one patient right now with it. I'm teaching people how to manage their symptoms, that these things are going to happen.

Speaker 2 (05:45):

And it tends to be very unpredictable and episodic. And that's, what's really frustrating. It's not that, oh, I just let me not do this. And then I'll be okay if I avoid this. Cause you could do something one day and be fine. And the next day it sets off a horrible crash. So teaching patients how to start recognizing those signs and symptoms and sort of like you can sort of tell sometimes and things are starting to go in a bad direction and what do you need to do if you're home, teaching them how to lie down, go through the diaphragmatic breathing. I've been sitting with my patient going through her day and like, where are there opportunities to rest? So this is very different than here's your theoretics program. It's where can you rest in your day? Where are, what are the things you absolutely need to do?

Speaker 2 (06:21):

Like eat, prepare food, order food, something like that. What are the things that, you know, are good you'd like to do with maybe aren't, you know, priority. And one of the stuff that like just don't even, it's not worth exertion that can set stuff off. So that's a really big part for me with the sessions is teaching people sorta how to figure out how to live with it. It's not a set plan. Like this is what you do, but here. So here's your life. Like I explained to my patient today, like we're not in a lab, we can't control for every possible thing and just tweak one little thing and see what happens. So here's your life? What do you need to do? And then how can we best set up to get you like that you're able to function that you were able to within reason control the symptoms. Like as an example, you know, right now it is incredibly hot in New Jersey, New York city. So we know that that can trigger symptoms. All right. So maybe we figure out if you have to have food shopping going early in the day, not going at noon when it's going to be really hot out. So there's not necessarily something set, but I look at it as helping people figure out how to live their lives right now while managing the symptoms.

Speaker 1 (07:19):

And that kind of takes me to the concept of pacing, which I think maybe a lot of people don't quite understand. So can you talk about what pacing is and how that differs from a graded exercise program?

Speaker 2 (07:31):

Yes. Hazing is so difficult. It sounds easy and it's not. So, and this is pacing, like say I'm a distance runner. So I understand how to pace, you know, over running, but to pace in your life is so challenging. So it might mean breaking something up. Pts will understand this. Some, some of us can sit at a computer for a few hours just to go through those notes, get them done. I can't anymore. So it's like maybe set a little chunk of time and then maybe you need to rest. Maybe you just need to get up and take a break. It might be cleaning your house that you can't do it all in one shot that you need to maybe do some in the morning and some at night, some today, some tomorrow is I look at it as like finding opportunities to slow down and opportunities to rest and something I've noticed as the world doesn't really set up for that.

Speaker 2 (08:14):

It is really, really challenging. You do your best and there are certain things, you know, you won't necessarily be able to pace with, but when you can just trying to spread it out because our energy is very finite and this is like literally at the cellular level, the energy is just not there. So you can't necessarily push through it. You could try, but that's going to affect you tomorrow. And then you'll be at a deficit for the next day and the next day. So it's learning how to pull back. Do what's really essential first, like really prioritize and finding opportunities to rest when you can,

Speaker 1 (08:48):

Yeah. Much, much different than a graded approach to activity or a graded approach to exercise is every time you do something, you increase it a lot, a little

Speaker 2 (08:57):

Bit more. And that's, what's interesting too, because yeah, that's just, that's what we do, but because symptoms can be unpredictable just because like, I'll use an example just because I could pick up five pounds one day doesn't mean I could do five or six pounds the next day. It might be the next day one pound. So it's really, really hard. You have to really listen to the patient and just go off of how they are feeling that day and let them know too that they're not doing worse because they can't do the same amount of whatever it is that they could do the day before. I mean, that's a hard thing. You look at it. You're like, but I just did this two days ago. Why can't I do the, why am I so tired today? It's so complicated. So yeah, it's trying to avoid that a little bit more the next day, a little bit more, a little bit more and just work with where you are that day, wherever your symptoms are at let's work from there,

Speaker 1 (09:41):

It's a much different mindset than what we're used to. And now, as, as we talk about that, I think that there's something important that we have to mention and that's athletes living with long COVID. So with athletes, we have to get them ready to get back onto the field, which means they have to be able to do a little bit more, a little bit more, a little bit more because they need to be able to compete. They need to be able to perform. So what are some specific considerations for athletes returning to sport post COVID infection or athletes with long COVID?

Speaker 2 (10:19):

Yeah. I look at this as with any athlete who has had a COVID infection and you just need to be aware and just be monitoring for possible little red flags that they might be going along COVID direction, because for anybody it's not always immediate, there are people who are doing okay in a couple months later, I had a flare up and we know with athletes in general. And I say this as one we push, you know, there are athletes who have plead while they have broken bones and concussions and all kinds of things. So the fact that they're able to keep going doesn't necessarily mean that it's safe. And an example for me, like I ran 10 and a half miles, two months after I got sick, which is insane, but I pushed and I did it. And then you could look at my heart rate and see why it was bad.

Speaker 2 (10:58):

So you're monitoring for, especially that post exertion L symptom exacerbation, if after they're working out, they're doing their practice, even watching film the cognitive demand for that, if it's a sport that has filmed, are they crashing? Not just the normal you know, you're a little fatigued or maybe have some dorms or something like that, but they're just completely done. It's really important to educate them and let them know because they might just think that it's just deconditioning. You need to get back in shape really important to monitor their heart rates too, because then they're going to push, especially getting back now after, after not being able to play sports from the pandemic, everyone's gonna be excited and have big adrenaline rushes and be able to push. And it's great to be able to look at some vital signs, to look at their heart rate, look at their blood pressure and see what it's doing, because they might not always be aware of what's going on to report it, but we know what you could look at as something objective like a heart rate and see, this is not the normal response from like what we would expect.

Speaker 2 (11:50):

So I know in the literature there's been some emphasis on clearing them for cardiac conditions, obviously super important. We see myocarditis and all kinds of things that is very important, but we're seeing many people in general on COVID whose basic lab work imaging is negative. But that doesn't mean that they're necessarily. Okay. So it was looking for the dysautonomia, particularly with sport, looking for the post exertional symptoms, symptom leaves after their playing, after their conditioning, again, after even cognitive exertion to see how they're doing monitoring for months, you know, don't assume because they were okay in the beginning because they're able to push through a couple of things that they're okay. Cause athletes will push through some pretty dangerous things to play.

Speaker 1 (12:27):

And can you just for the audience give a specific definition to the post-exercise malaise or post-exercise symptom exacerbation. Cause I really want people to understand that it's not just like, I'm a little tired and I just need to rest. So can you explain what that means?

Speaker 2 (12:47):

Yeah, it is. That looks like yes, it is actually physiologic reaction. So people will report an increase of flare up, increase in severity of their symptoms and you will actually see like physical, sick symptoms, like a fever is I think a really great example because no matter how hard you push exercising, a fever is not normally you know, response to that. And it is, it is so hard to explain when she experienced it, how crippling the fatigue is. It is something you cannot push through. Like you cannot get up. It sounds like I'm exaggerating, but I'm not. And I was talking to PT, Todd Davenport about this. And he, with his work in chronic fatigue was saying like, it's literally two energy demanding to talk like the amount of energy it takes for what we're doing right now is not there. So, and again, it can vary too.

Speaker 2 (13:38):

There are crashes. That's what I've kind of called them. Some other people too, that can be a little minor is not the right word, but not as severe. And some that are, people are literally bedbound and are unable to get up and it can vary to where the post exertional symptom exacerbation, those crashes can last for a few hours. They can last for days, weeks. Some of us, it takes us months to be able to bounce back from one. And even that, we're just trying to get back to that baseline of where we were when the crash happened. Not like a true, like pre-illness baseline. Got it. Yep.

Speaker 1 (14:10):

Thank you for that because I think it's really important to make that distinction for the listeners. Now let's talk about let's talk about the rule of social media when it comes to long COVID or COVID in general. I mean, we all know that social media is full of misinformation. As a matter of fact, I was reading an article where they said the long COVID misinformation, 80 or 80, some percent of the long COVID misinformation and misinformation on vaccine surrounding lung COVID was coming from 12 accounts.

Speaker 3 (14:46):

Can you imagine

Speaker 1 (14:47):

They just happen to have like a really, really strong presence and a really large following on social media. So what is the role of social media with long

Speaker 2 (14:56):

COVID? This has been fascinating. So we all people with on COVID found each other on social media pretty early. This part I didn't find initially, but body politic, they found each other really early in starting this whole launch. The patient led is another group too, but so this patient led movements. So people just coming together and saying, we're not better. We don't necessarily know what this is, but this isn't right. This isn't the two week recovery that we're hearing about. And at the same time people with chronic fatigue were jumping and they had been sounding alarms from the start of the pandemic. We didn't know about it. Cause you know, we weren't in that space. And then, so it's the people with lung COVID who named it. We gave it a name when we, you know, we weren't being heard initially because things, you know, being New York city, things were so severe that the focus was on the acute.

Speaker 2 (15:40):

We severely sick hospitalized people. So we on our own kind of came together and gave it a name and have gone from there. So that's social media has allowed for peer support groups and we have long COVID physio specifically for PTs, PTs, other allied health care professionals with it. I'm in a group for endurance athletes with long COVID. I'm sure there's plenty of other like specific groups where you can relate to each other because when you try to explain this to people who don't have it, they look at you like you're crazy because it just sounds so ridiculous. It doesn't sound like it's real, especially for those of us who were young and healthy and fit, you know, prior to COVID and then it's allowed us to get information out really fast where, you know, it takes a while to publish. It takes a while to do a study, but all of us, you know, we've been our little ends of one, like I'm going to report what I'm going through.

Speaker 2 (16:23):

You know, PT, Twitter was great. Encouraging me from the beginning, just report where you have. Cause that's, you know, that's one example we'll learn from. So we've been able to get that information out and papers have gone out very quickly. We have had some amazing webinars and just things that are, people are just producing so quickly and on their own, sometimes it was faster than having to go through a whole, you know, association and, you know, with the journal and everything. So that's been amazing and we find each other and I know which are the accounts that are going to put out like the peer reviewed articles when they're there. I know, which are the accounts that are going to have the great webinars and all the free things that are available on YouTube to watch. I know which are the counselors patient share and their stories. So you kind of find to what fits with, with what you need to know and whether you're at the, just the patient level or you're a clinician who needs information

Speaker 1 (17:08):

And can you, what are some of the accounts or, or if you want, you can send them to me and people listening can just that way you don't have to rattle through land accounts that no, one's not going to re no, one's going to remember anyway. So if you can send me some of the accounts of individuals and groups that people, if they're listening have long COVID, they know who to follow on where to get accurate information

Speaker 2 (17:32):

From. Yeah. Yeah. That's a great point that accurate that's been for better or for worse having clinicians and researchers with long COVID gives you people who know what they're talking about that you can follow them and I'll add for what you said. Cause I went, oh no, because one of the things that happens with long COVID is brain fog which is a broad term. And it sounds like not much, but the symptoms, the cognitive symptoms really, really range. And you'll see some of us just kind of get stuck finding words or trying to remember something, or I can picture people's Twitter profile photos. Couldn't tell you what the handle is on the list. Like actually see it, that's been a really challenging thing. I've been trying to kind of figure out how to work so I can send you yeah. Cause that's great. It is, it is so great to have other people to follow who are in the same boat or what we're calling, you know, allies, people who are sharing, they might not have it, but they're in a clinical space or research based to help.

Speaker 1 (18:21):

Yeah. Fabulous. Yes. So for all of you listening, Daria will send them to me. You can go to podcast dot healthy, wealthy, smart.com click on this episode and then you will click on whichever of those links you would like to follow. That would be much easier. Okay. So now let's talk about just this'll be well, we'll sort of finish up our conversation on a light note. Let's talk about the mental health considerations of those

Speaker 2 (18:50):

Living with Ms. Oh yeah. This is a whole big topic. So I'll start with it was pretty early on from when I had symptoms that somebody had first mentioned anxiety in me kind of implying that might be what the cause of my symptoms were. And I just say for me personally, I'm not an anxious person at all. So on one end, we're, you know, we're trying to say that it is virus driven. People can have mental health aspects a lot to get into, but that's not the root cause. So it's really important to tease out because people are told and I'm learning all about this from other people, chronic illness going in that direction and say, no, but psychological interventions can help, but that is not the underlying cause. But that alone, when people are telling you you're anxious, you're depressed when that's not what's driving.

Speaker 2 (19:34):

It is really frustrating. But because of all these symptoms, having this new chronic illness during a pandemic that has been politicized with false information is really hard because you'll talk to people who don't believe in the science of what this is, and they don't know that you have long content and you're just so that's really, really difficult. And it changes your life. You know, it's a complete change in your identity for all of us, particularly who are really active, whether it's exercise or as PTs, if physically demanding jobs. And you have to like figure out who you are now, if you can't do all the things you used to be able to do, you know, who are you? And then say for me, like running and dancing, that was my stress relief. That's my outlet. That's how I express myself, particularly with dancing. And now, you know, I'm not able to do that.

Speaker 2 (20:23):

Like I was before and it takes a toll and you're trying to find, well, what can I do then? What, what am I able to do to try to help cope with these symptoms is it is so frustrating. You are trying to figure out how to live with symptoms that are unpredictable and episodic. And like I mentioned before, you know, the world isn't adapting to what's going on in the world, just going on, like it was before the pandemic. So having the peer support has really, really invaluable to have other people to talk to that, understand it. And you can not only explain the symptoms, but you can be going through the symptoms and you know, they understand when you forget your word, when you stumble, when you're just too tired to sit up. So you're on a zoom, lying down. There's so many things like that.

Speaker 2 (21:06):

When you have people that to just, just to vent to or who, you know, they just understand what you're going through. That's been really big because the first for me, the first few months, I didn't know anybody else with it. And I obviously, there's plenty of great PTs who I was talking to, trying to help and my friends. But when you have people to talk to who understand that makes such a difference. It's just like, there's weight off of your shoulders. And like, oh, you understand you get it. I've met people. When we work with employer clients for my job who have long COVID and they start to explain the symptoms to me and I could see them kind of hesitating when they say that, it's like, no, no, I understand. I understand that you get really sweaty all the time. You're not crazy.

Speaker 2 (21:41):

That's a real symptom. That is a thing we can talk about that because this is something I didn't appreciate earlier. I work in orthopedics and it is, you know, there, there is a mental health aspect to it, but this is a whole other world there wasn't aware of. Yeah. As a PT, it's making sure you're listening to the patients that you're validating their experience and not say maybe if you're not familiar with this thing, well, that's weird. You know, that, that can't be right, that you're really listening to them. And that when you're, as you're listening, if you're hearing some of those red flags that maybe as a results of long COVID, or maybe they had anxiety and depression already, and this is exacerbating, it know that you're listening, you're ready to provide resources. If that's appropriate. And then now we're even taking a sad turn, but there are people who are committing suicide from long COVID.

Speaker 2 (22:26):

There was just a big case in the news because the woman was a writer. There's somebody who owned a chain of restaurants, it was pretty famous that had committed suicide. And there's more that are in the news, but that's really big too. And it's something that, again, I didn't necessarily appreciate until I was going through not only chronic symptoms in general, but symptoms where there's not a cure or treatment necessarily. So it's a whole new, a whole new world to learn about this. So as a PT, it's just really listening to the patients and under trying to, you know, understand, be open to what they're going through. That it's not just physical symptoms, but it's going to affect their entire being.

Speaker 1 (23:02):

Yeah. And you know, in Darren and I were talking about this, I said, you know, it reminds me or it makes me think of people with a headache, chronic headaches, migraines, maybe neck pain, back pain, where, you know, you're not walking with an assistive device. You don't have a limp. You're, you know, you don't have the symptoms of someone who's quote unquote sick. So it's one of those sort of silent silent diseases, if you will, or, or silent symptoms for a lot of people. And to have to explain to people why you can't meet them for dinner or why you kept it, it can just be, so how do you deal with that? Oh,

Speaker 2 (23:49):

This has taken a long time because I'm someone where you can look at me and assume I'm high functioning. Cause I go to work every day, you know, I, to a degree, kept up with dancing. But I'll explain to people and they're not getting it that they don't see what it takes for me to be able to do those things. The resting that I have to do, as soon as I get home from work or dance or something draining, I lie down I'm supine. That is like, if, as long as my schedule lets me do that, that's the first thing I do when I walk in the door. If I have to dry for a while, if I can I sit down when I get done or lie down even better. So there's a lot of strategies like that, that go on that you wouldn't see unless you're next to me.

Speaker 2 (24:24):

So I'll tell people about that. You know, I might look okay, but there are symptoms that are going on and I'll explain to a particular thing because I dance, you know, and the show must go on. I'm accustomed to ignoring symptoms and smiling and getting out on stage and spurt, you know, pretend everything's okay. So that's something that I've learned. It's not the greatest treat to have with long COVID because again, people, it just looks like, you know, we're okay. But it's, it's explaining, you know, what it takes to be able to just do basic things like food shopping. And what advice do you have for

Speaker 1 (24:56):

For people living with long COVID when it comes to their mental health? I think the advice that you just gave for therapists to really listen to your patients, not only listen, believe them. But what advice do you have for people living with long COVID? If they are kind of suffering their mental health is suffering.

Speaker 2 (25:17):

Yeah. A big thing is like, we've already talked about social media. If you can find, there are lots of great peer support groups. There are just general long COVID groups on Facebook. And then, you know, there's specific ones targeting you know, very specific populations. So at least even if it's not, you're not, you're not getting professional help you at least have other people you can relate to because I know that with long COVID clinics that are, that are starting on their wait lists. So trying to go through that referral system, you know, to try to get to somebody to help can be a little challenging. And I know for me and other people it's been having to just kind of accept that this is a thing going on and that it's, you can't push through it. You can't just kind of wish it away.

Speaker 2 (25:59):

You can't ignore it, it's there and you can, you can try to ignore it, but it won't let you, you're not going to get very far. And is this so much easier, seven number, just trying to accept the, how uncertain it is and just being able to kind of roll with it and know, you know, you might plan, have plans for a certain day and you wake up and say, Nope, that's not today. That's not going to happen. You know, I wanted to go to the pride parade on Sunday in the city and it was 90, whatever degrees, obviously very crowded. A lot of stimuluses Nope, this is, this is not a good idea. It would have been great to do, but not safe. So it's being able to, you know, recognize your limitations and something. I can't remember who told me this, but it's not only acknowledging the things you can't do because that is important to recognize certain things that are not right now, but something you did do that day.

Speaker 2 (26:45):

Like maybe I wasn't able to go food shopping, cause it was too much, but I didn't crash. I got through the day without a crash. So that's a positive thing. And it's hard again because it's not always in our control, but I that's something I've been trying to do as frustrated as I get, because there's so many things I can't do right now or I could, but I shouldn't because I've learned the things I shouldn't do. Just also recognizing there are still things that are not control maybe even on the worst day and you're not able to really get up and do much look at your heart rate and say, Hey, but I was able to keep my heart rate at a fairly low level because I understood that I was supposed to stay in bed. So looking for those little wins and victories, even if they're small and if they don't seem like much, if you're accustomed to doing a lot, it helps. It gives you just like a little bit incentive. So you can kind of look at the big picture and see that if you aren't making progress.

Speaker 1 (27:30):

Yeah. That's such great advice. And you know, Louis Giffords called that, looking for the pink flags. So looking for those, you know, cause we got red flags, yellow flags looking for those pink flags, which are those, those exactly what you just said those times where you're like, you know, I still have back pain, but Hey, I was able to sit through a movie, right. Or, oh, I was, I wasn't able to get out, but I was able to, to do some stretching. Right? So it's like, these are, you're really looking for those pink flags, those things that give hope that give a sense of accomplishment, however, small or big it might be. So I think that's really important.

Speaker 2 (28:14):

So now, so it's helpful two, because you don't know from day to day, what's going to happen. Which is just makes it so hard. That is the really frustrating part. And like you really have no idea. I can't remember. There's so many things that I've read. I always forget who, where I read what, but there was a physician who said with long COVID, it's like putting your hand in a bag of symptoms and pulling them out and say, this is me today, which is very accurate. That is a hundred percent accurate. So yeah, when you can say, all right, well today didn't turn out as planned, but I did something or at least, you know, things didn't get worse. Sometimes literally the accomplishment is that things didn't get worse and we're able to sort of manage it. It just really changes your perspective on how you look at things. But it's knowing that we don't know what's going to happen. We don't have a predictable, rough timeline on what to expect. We don't know that, oh, if you're in this age range, you're more likely to have this. Or if you were healthier, you're because we're seeing people who had no comorbidities I'm like, you know, with the severe acute infections. So just looking for those little wins can make a difference. Yeah.

Speaker 1 (29:16):

And, and living with that uncertainty certainly not easy. But if you have support groups, you have friends, family, peers, professional help. I'm sure that all of those things can help you kind of manage your life and manage where you are at this moment.

Speaker 2 (29:37):

Yes. I was explaining to my patients today that I, because she was, she was explaining friends who aren't understanding it and if it's going to happen and this, as soon as you have to, I think of the Mr. Rogers quote about finding the helpers. And in that case, you know, I had a friend who visited that hadn't seen our literally two years, but I knew she would understand. And there was a couple hours, one day I just had to lay down and I knew that would be a non-issue for her. She'd either take a nap or find something else to do. So I was looking for that, like knowing who the people are in your life that they'll understand. If you have to cancel last minute, that's fine. If you need to sit down last minute or, you know, slow down, you can do it, but that they will understand. And that's not going to be everybody not everybody's going to get it, which is fine. It's frustrating. But you know, it is what it is. But looking for those helpers who even if they can't directly help you, you know, cause they're not in healthcare, they at least will understand. They at least will listen to you. And they'll at least say, no, that's fine. This is who you are today. So we'll work with that.

Speaker 1 (30:31):

Yeah. That's so great. I think that does sound something like very Mr. Rogers E write something he would say. So now what would you really like for the listeners to kind of take away from

Speaker 2 (30:45):

This episode? A couple of things is the one is with anyone with long COVID, whether are living with it, or you have patients with it to not try to push through symptoms. I cannot stress that enough. You can use me as the example of why you should not push through symptoms. I have tons of data available from my garment and heart and crazy heart rate things. And it is just not something you can push through and it's not a failure on somebody's part. It's not that they're not trying hard enough. It's not that you're not strong enough. It's just physiologically. This is where you are right now and really doing your best to embrace. It's hashtag stop, rest pace, which is from the chronic fatigue community to really, really try to do that while there's, you know, like I said, there's no set treatment or cure.

Speaker 2 (31:31):

We know that that that helps it. Doesn't magically fix everything and everybody's different with how you implement it in your life. But the stopping resting and pacing makes a really, really big difference. And like as a PT, you just need to be open to the paradigm shift. It is so different than what we are taught from, you know, my mindset like so many people's it was, I gotta move. My dad's a respiratory therapist. He's retired now. But when I got sick last year in March, he said, knowing me, you know, you need to wait two weeks until you don't have symptoms before you start running is like, that's crazy. No, I got to move. And here's all the reasons why I can't be sedentary. Here's all the health reasons. And now I've had to like shift that in my brain a lot and say, okay, I know there's risks with bone health and cardiac disease and all these things, but the priority right now is trying to get the symptoms under control and really trying to prevent crashes as much as possible. So just being open to that, and yes, there are concerns about being sedentary, but right now preventing the crashes, supersedes that.

Speaker 1 (32:23):

Got it. Excellent advice. Now, where can people find you on social media,

Speaker 2 (32:28):

On Twitter? I'm on Twitter often. And I would say you can tell when I'm lying down resting, cause that's when I'm tweeting. Well, good to know it's at on tap physio two, number two, that is the best place to reach me on Instagram. I'm ONTAP physio. Excellent. It's on Twitter often. Yeah. Yes

Speaker 1 (32:45):

You are. And you get spread a lot of really, really good advice and, and we all appreciate your being there and being a voice of truth for people living with lung COVID and for clinicians who want to learn more. So we all thank you for that. Now last question I ask everybody this, where what advice not, where, what advice would you give to your younger self knowing where you are now in your life and

Speaker 2 (33:15):

In your career? I'm laughing because to not push so hard, which is crazy as a physical therapist or someone in healthcare in general, but to not push so hard. You know, I learned at my very type a all girls high school to push, like we just push you work as hard as you can. You grind got that in undergrad. And I was at the other training student, obviously I was in PT school and after that, and it has been to my detriment now that we're, you know, we look at that drive that that's such a great thing to have and look how resilient you are, look how antifragile you are looking all these great things, but we're seeing with not just lung COVID, but other post viral illnesses that can actually really harm you life in general. Yes. Yeah. And we get accustomed to not sleeping and illustrating caffeine and all that. So it sounds crazy to be saying to myself, knowing how I am, but it's to learn, like you don't have to push so hard all the time that things will be there. You know, you, you know yourself, you know what you're capable of doing, but resting actually resting, not doing things just resting is really, is as important as pushing hard and pushing hard can lead to all kinds of fun trouble.

Speaker 1 (34:30):

Absolutely. I think that is great advice. And one that I think any, certainly any PT should, should take and should live by. So thank you for that. And thank you for your honesty and being so candid during this conversation, because I think it will help a lot of people. So thank you so much for coming

Speaker 2 (34:48):

On. Well, thank you for having, like I said, finding the helpers, you are one helping to get all the information out to people on your, you have such an incredible platform where it's so important that we're reaching people wherever they are, and podcasts are definitely a way to do it. So thank you.

Speaker 1 (35:03):

I am happy to do it and I am learning more and more myself throughout this whole month. So thank you again and everyone. Thank you so much for listening. Have a great couple of days and stay healthy, wealthy and smart.

In this episode the chair of Long Covid Physio, Darren Brown discusses the World Physiotherapy briefing paper on safe rehabilitation approaches for people living with Long COVID. 

Today Darren talk about the Key messages for Safe rehabilitation from the briefing paper: 

" • Post-Exertional Symptom Exacerbation: before recommending physical activity (including exercise or sport) as rehabilitation interventions for people living with Long COVID, individuals should be screened for post-exertional symptom exacerbation through careful monitoring of signs and symptoms both during and in the days following increased physical activity, with continued monitoring in response to any physical activity interventions.

• Cardiac Impairment: exclude cardiac impairment before using physical activity (including exercise or sport) as rehabilitation interventions for people living with Long COVID, with continued monitoring for potential delayed development of cardiac dysfunction when physical activity interventions are commenced.

• Exertional Oxygen Desaturation: exclude exertional oxygen desaturation before using physical activity (including exercise or sport) as rehabilitation interventions for people living with Long COVID, with continued monitoring for signs of reduced oxygen saturation in response to physical activity interventions.

• Autonomic Dysfunction and Orthostatic Intolerances: Before recommending physical activity (including exercise or sport) as rehabilitation interventions for people living with Long COVID, individuals should be screened for autonomic nervous system dysfunction, with continued monitoring for signs and symptoms of orthostatic intolerance in response to physical activity interventions."

More about Darren: 

Darren Brown is a cis-gendered (pronouns he/him), gay, white man, of English and Irish heritage, living in London, UK. He is a clinical and academic Physiotherapist specialising in HIV, disability and rehabilitation. Darren leads the HIV rehabilitation service at Chelsea and Westminster Hospital NHS Foundation Trust; Europe's Largest HIV centre. He is the Vice-Chair of Rehabilitation in HIV Association(RHIVA), HIV/AIDS coordinator of World Physiotherapy subgroup IPT-HOPE, and steering committee member of Canada International HIV Rehabilitation Research Collaborative (CIHRRC). Darren was awarded an NIHR funded Masters of Clinical Research (MRes) in 2019 and continues to conduct both quantitative and qualitative research about disability and rehabilitation among people living with HIV in the U and internationally. Darren contributes to national and international programmes focusing on disability inclusion across all responses to HIV. Darren contracted COVID-19 in March 2020 and continues to live with Long COVID. He is a patient advocate for Long COVID healthcare and research, calling for the greater involvement and meaningful engagement of people living with Long COVID in all responses to COVID-19. Darren founded Long COVID Physio in November 2020, an international peer support, education and advocacy group of physiotherapists living with Long COVID. Darren is an invited expert contributing to World Health Organization Guideline Development Group on COVID-19.

Suggested Keywords: 

Covid, Physiotherapy, Recovery, Long Covid, Healthy, Wealthy, Smart, Symptoms, Relief, Pacing, Resting, Support, Energy, Mental Health, Sport

To learn more follow Darren at: 

Twitter

https://www.hiv.physio/

https://longcovid.physio/

Long Covid Briefing Paper

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Read the full transcript here: 

Speaker 1 (00:02):

Hey, Darren, welcome to the podcast. I'm thrilled to have you on today. Thanks so much.

Speaker 2 (00:07):

Hello. And thank you for having me. My

Speaker 1 (00:09):

Pleasure. So this month we are talking all about long COVID. So people living with the long COVID symptoms and also what long COVID is at least what we know now, what we know at this present time. But before we get into all of that, and before we talk about the the world physio therapy briefing paper nine, which we will have a link to in the podcast notes I would love for you to let the listeners know a little bit more about you and why you are part of that paper and, and part of this world.

Speaker 2 (00:48):

Yeah. So thank you very much for having me today. So my name is Darren brown. I'm a, cis-gendered gay white man. I've mixed English and Irish heritage. I live in London in the UK. Hence my accent for anyone that's not where I am. I am both a clinical and an academic physiotherapist, and my background is in the area of HIV, disability, and rehabilitation, so specialized in that for a decade. So I'm kind of used to the chronic implications of viral diseases. And I also happen to be a person living with long COVID. So I contracted a coronavirus acutely in March, 2020. So as I sit here today, I'm of my 15th month after acute coronavirus and I am currently sitting here today in a really stable, good place with my long COVID I predominantly symptom free.

Speaker 2 (01:45):

However, it's been a 15 month journey and it's been a very episodic and up and down journey which I'll be very happy to summarize for you if you thought that was useful. So I, as I said, I contracted coronavirus last year. I went back to work pretty quickly actually, and I ended up working full time for six months, switched, included being redeployed to various sectors, including intensive care in response to the pandemic. Had some ongoing symptoms, but in September last year I crashed. And I ended up being off work for two months and the crash lasted for about six months where at my most disabled I was bed bound and flat bound and walking with a walking stick. And my symptoms were multi-dimensional episodic and unpredictable in their nature with profound exhaustion, fatigue, brain fog I've had some respiratory symptoms.

Speaker 2 (02:37):

I've had cardiovascular symptoms. I've had urological symptoms are neurological symptoms and I'm under all of those physicians for investigation still. I then had my vaccination, my first dose in January. I got better. I returned back to work. And then I was getting so much better. I started to do a bit more and unfortunately I had second crash. But then I had my second vaccination felt a bit better. And I've been continuing that journey since. So yeah it's been a very episodic journey but I'm also a co-founder of a group called long COVID physio. So long COVID physio was born out of the need for peer support amongst physiotherapists, living with long COVID, both in the UK and the United States, but now it's evolved, it's now a global peer support group that also provides education in the context of a long COVID disability and rehabilitation. And also acts as an on an advocacy level which kind of brings us round to where the briefing paper came in really. Because it was born out of a need for education and advocacy led by people living with long COVID.

Speaker 1 (03:54):

And you know, I think we spoke about this before we started recording, but your background working with HIV that has multi-system whole systemic bodily implications, you said, well, with these, the code, the symptoms of long COVID, you weren't, it wasn't like out of the blue, it wasn't a huge surprise for you, but is it safe to say it was a huge surprise to a lot of other people in healthcare and out?

Speaker 2 (04:26):

So in the context of HIV, we know that HIV can be controlled with medicines antiretroviral therapy. And when a person is undetectable, meaning you can't detect the virus in the blood because the medicines are working that well, people are on transmittable, meaning you can't pass it on. And when people are undetectable and they've been taking the medicines, people can live a normal life expectancy. But what we know with that is that people are growing older with HIV and the developing other complications and people living with well controlled HIV, still experience issues, including episodic disability. So when this pandemic came out, there was quite a few of us at work in the world of HIV, disability, and rehab that were kind of anticipating well, if people recover, there may be a risk that people will develop long-term consequences. So it wasn't surprising. I think what was surprising was that I was one of them and actually how severe the disability was.

Speaker 2 (05:19):

There are other groups of people that also were anticipating a post viral manifestation, particularly groups of people living with Emmy or my LJ can. And my lightest also known as chronic fatigue syndrome. And other people that have been living with post viral complications probably were anticipating there was going to be some form of complications after acute Corona virus. But I think mostly the world has been caught off guard by this. And maybe it hasn't been prepared for the critical mass of people globally that are going to be living with ongoing consequences after acute coronavirus, which is now commonly referred to as long COVID.

Speaker 1 (06:00):

Yes. And so now I think that leads us right into the briefing paper. So like I said, there'll be a link to this in the podcast notes, but when you look at this briefing paper, there are a lot of contributors to this. So before we get into the meat of the paper, can you give can you explain how you got all of these people together in order to write this paper?

Speaker 2 (06:22):

Yeah. So this brief briefing paper was specifically brought together communities of people from different experiences. So the idea started with myself and a few other people that had expressed some concerns that maybe there was lacking guidance and policies and standards around the utilization of physical activity, witching of all types, including exercise and sports in the rehabilitation of people who may have been recovering from coronavirus or living with long COVID. And so initial conversations were between some people that had already connected pretty much through social media. And when we got the kind of green light with world physiotherapy, that this might be something that we could work towards. We started to snowball our collective groups. It, this, this briefing paper is brought together over 50 different people from different geographical regions in the world, so that all of the five corners of the global four, four corners, but, you know, five weld, physiotherapy regions have been represented here.

Speaker 2 (07:29):

So we've got people from Europe, north America, south America. We've got people from Africa, Asia, and Asia specific. So we, we have huge diversity, not only in where people are from, but also in that backgrounds. We've got people living with long COVID. We've got physiotherapists, we've got physicians, doctors that specialize in a range of different things, including physical and medical rehabilitation. Also known as physiatrists. We've got occupational therapists, psychologists. We've got people living with M E the list goes on and we've got such diversity because what was needed was a consensus here. What was needed was a diversity of thought experience, both lived clinical and academic, but also geographical to come together to say non COVID is not just affecting one place in the world. And this experience is not singular to two groups of people or people in certain locations. This is actually a unifying global issue and the long-term consequences after acute coronavirus and affect people around the world. And that's why it was so important that we have that diversity, if the people that were contributing, but also diversity of experiences and thoughts, because not everybody comes from the same background with the same beliefs about all of this. And so we needed to bring that consensus together. And that's how we was able to develop the paper, though. It was not only recommending caution, but was also what can be done and also where rehabilitation is successful.

Speaker 1 (09:00):

Yeah. And I think, you know, for a whole systemic disease, that COVID is, and it being global, it is important to have a whole systemic group of people working on this. So I just wanted the listeners to know it's not only physical therapists or it's not only physicians, if this was a real collaborative world effort. So that being said, let's talk about what some of those key messages are, especially when it comes to safe rehabilitation of people with long COVID. So I'll hand it over to you.

Speaker 2 (09:33):

Yeah. So the, the way the briefing paper was written was to introduce T considerations when rehabilitation specific to physical activity in all of its forms. As I said, including exercise and sports, when those key considerations need to be taken from a safety perspective before we prescribe exercise and physical activity. And I purposeful in my terminology there because we are health professionals that do prescribe our interventions. And so therefore we do need to have safety at the core of what we do. We know that there is currently not enough evidence or any evidence on the safety and effectiveness of physical activity and exercises and intervention for people living with long COVID, but there's loads of indirect evidence. And there's also enough evidence in long COVID to give us the signals and clues as to which direction we could be traveling in. And so there was four key messages that came out in this.

Speaker 2 (10:31):

So the first was before recommending physical activity, as a rehabilitation intervention for people living with non COVID individuals should be screened for post exertional symptom exacerbation. Now, this is a term that's called different things. So post exertional symptom exacerbation is something that I quite like, but it's also used by other groups sometimes more commonly known as post exertional malaise, but can also be known as post exertional neuro immune exhaustion, basically, in a nutshell, when you exert yourself, whether that be physical, cognitive or social exertion, your symptoms get worse. So obviously before you get people to exercise, it would be quite useful to know whether they've got that because you can't exercise your way out of a symptom, which is made worse by exemption

Speaker 1 (11:21):

And, and from a physical therapy. Cause we're both physios from that physiotherapy perspective, how do we screen for that? Is it a simple questionnaire?

Speaker 2 (11:33):

So this is where the briefing papers really quite useful because obviously that's the first key message. And the way the briefing paper is designed is that you have the key message and the rationale for that key message. So if anyone's now going, why they brought that key message out in the briefing paper, there is an evidence based rationale for that. And then off the back of that, there's an action. So each key message has an action point where clinicians and also communities of people living with an effected by long COVID can utilize these action points. So as you rightly said, there are ways of screening for post exertion or symptom exacerbation. Now, one of the best ways of doing that is actually a narrative approach, which is having a effective communication between clinician and the person accessing the clinicians care. So one of the nice things about this briefing paper is it's also included the whole context of person centered rehabilitation and the therapeutic Alliance or relationship and how that's going to be an integral part of ensuring that safe rehabilitation is provided. Because if you can use a narrative approach to hear that people are experiencing this symptom, then it's a really good starting point. There are other tools though.

Speaker 1 (12:47):

So are you saying that we actually have to make the time in our evaluation to speak with our, the person in front of us to really get to know them and to ask more narrative questions, motivational interviewing, not just yes and no, and typing into a computer

Speaker 2 (13:06):

Now that's that's yes, that's leading, right? So, but you know, the average person probably listening to this, he's probably going, of course, I listened to my patients. Of course I communicate with my patients, but, but, but I think what it is, it's about providing space for people to feel safe, to provide the information that they can engage in. So if person centered care is going to be a key pillar of rehabilitation, we must make sure that our patients feel safe to open the engage in rehabilitation with meaningful connections that are established with the clinicians knowledge, but also the patient's belief and knowledge of their own lived experience. And I think this isn't new to many people, but I think it's a really vital skill that we can harness in terms of delivering safe rehabilitation.

Speaker 1 (13:56):

Yeah. And everyone deserves to be heard and acknowledged and seen and given the space to do that. So as physiotherapists, we should obviously be doing this with every patient. But when you're seeing patients who are living with long COVID, I think it behooves you to give them some extra space because I'm sure they have experienced people, not believing them. Like you said, just exercise your way out of it. You'll be fine. And because a lot of people with long COVID, unless you maybe are walking with an assistive device, they may come in and look, okay. Yeah.

Speaker 2 (14:40):

Th that's that's the key point, isn't it, you know, a long COVID could be classified for many people as an invisible disability. And certainly it's something that's experienced as, as not only, but also episodic in its nature and also unpredictable. So someone may look okay, one moment, but not another. And this is something that I've talked about from the lived experience of having the symptom of post exertional symptom exacerbation, which is that it's, it's wholly invisible to the majority of people because when I'm out and about, and I'm doing okay, people see that I'm doing okay, well, they don't see as the repercussions of that a day or two later where I'm laid up in bed because no, one's around me when I'm laid up in bed and no one can see that. So it is truly an invisible symptom and that's where people need to feel safe to talk about that.

Speaker 2 (15:26):

Because a lot of people may not understand it themselves and may be very confused by this because my experience was, I was totally confused as to what was going on with my body, when this was going on. And I was very lucky that people were able to guide me through what the symptom was and to understand it better. Yeah. And you're in the biz. So just people who aren't. Right. Yeah. I have a head, I have a level of health literacy that is probably different to the general population. And I didn't have a Scooby-Doo what was going on with my body. I thought I was doing the right things to try and rehabilitate myself by gradually increasing my activities. What I thought was dependent on my symptoms, but I had zero clue what was symptoms were doing because they were all over the show, but there are some tools to screen for this as well.

Speaker 2 (16:14):

And that's within the briefing paper. So there is a range of different questionnaires. And actually specifically within the, the, the briefing paper, there is a a box which actually has these 10 items that you can use. And it tells you how to score it, how it links it to the evidence-based research, which comes from Emmy and CFS. Hasn't been validated in long COVID, I'm sure that work will happen, but it's a tool that could be useful. There has been some research already that's come out of Calgary in Canada, which has used this tool specifically along COVID. And actually that was published as a pre-print literally the day after this was published. So it's not included in the briefing paper and that's a sign of how fast this research is moving, but a very high percentage of people are scoring as the threshold for experiencing post exertional symptom exacerbation when living with long COVID.

Speaker 2 (17:07):

So it's there, it's prevalent. It's an important consideration because what we know is that a graded exercise therapy program, which is incrementally increasing the amount of activity you do, irrespective of your symptoms has been shown to cause harm in other populations of people, particularly MEFs that experience post exertional malaise, and at our heart of what we do rehabilitation should be there to support people. It should be nourishing. It should be improving functioning, and it should not be causing harm. And that's where that narrative approach is useful because when we provide interventions, we need to provide the safe spaces for people to tell us that it might not be working and not allow people to feel that it's their fault that it's not working because they've got this symptom.

Speaker 1 (17:57):

Yeah. So, so, so important. We don't want to place the blame on someone for something which they have no control over. Right. And, and I think as, as physiotherapists, we have to check our biases. We have to understand that when this person comes in, I mean, we all have biases. We were, that's how we are, you know, maybe not as a four year old child, but certainly as you grow up, you acquire these biases and you have to know as the practitioner to be able to recognize that bias and push it aside, right.

Speaker 2 (18:36):

That's such an important point about implicit bias as well and unconscious bias. Because I think actually wholly as a profession physiotherapy has an unconscious bias, which is that the mantra exercise is medicine is within our bones. And I think as a profession, it's quite hard to hear that exercise can't cure everything

Speaker 1 (18:58):

Well. And, but I think you kind of said this earlier is exercise is prescribed. So we need to prescribe it just like you would prescribe a medication by dose. Right. So, and sometimes guess what that dose is zero, right? Sometimes it's zero, you're prescribing it. So again, it's that exercise is medicine. Yes, it's a thing. But you have to know enough about the person in front of you to know how to prescribe it. Exactly.

Speaker 2 (19:29):

And that's where physio therapists are. So ideally placed to take on board these messages, there's key message of screening for post exertional symptom exacerbation, because we all are good at prescribing physical activity and exercise interventions that are based within a rehabilitation model. And we are also good at knowing when not to prescribe. And I think that if we're given the tools to be able to identify the symptom, recognize that there might be an adapted approach that's needed that works with individuals and potentially takes a stop rest and pace approach because pacing is not easy to do. I'll say that from lived experience you know, there's, there's so much that can be done beyond the scope of just prescribing physical activity and exercise interventions. And I think that physiotherapists are so ideally placed to be working along those lines and working with our multidisciplinary team colleagues. And this is where the big shout out to the OTs go because pacing is their bread and butter.

Speaker 1 (20:28):

Yeah. Yeah. For sure. Absolutely. Okay. So we've got one key message is screening.

Speaker 3 (20:38):

Cause there were four, right? So what's number two, we

Speaker 2 (20:42):

Went on a topic, but it's important.

Speaker 4 (20:47):

[Inaudible]

Speaker 1 (20:47):

The most important part is to be able to screen and know the person in front of you. Yeah,

Speaker 2 (20:53):

Yeah, absolutely. So the second is about cardiac impairment. So what we know is that before we prescribe physical activity, interventions, including exercise or sport, we need to exclude cardiac impairments. Now there is enough evidence to demonstrate that's people that have had coronavirus and people that are living with the long-term consequences are long COVID can have cardiac impairment. And that can include things like pericarditis, myocarditis, even at mild levels. Now we know the opposite. There's a favoring for excluding exercise interventions for people that do have perio myocarditis for the safety implications. So reducing morbidity and mortality. Now, obviously this is a safety message. We don't have enough evidence yet to say what the true prevalence of cardiac impairment is amongst people living with long COVID what the safety implications are. But this key message is we must make sure that we are conscious of this because the evidence is indicating there's a risk and we need to be mindful of that risk.

Speaker 1 (21:58):

Right? So as a physiotherapist, if someone is coming to us with long COVID, who has not seen a physician has not seen a cardiologist has not had a cardiac workup, it would behoove us to say, Hey, listen I think your next stop should be, let's get you to a cardiologist to evaluate your cardiac function,

Speaker 2 (22:18):

But depending on symptoms, certainly. So, you know, people are having it disproportionate tachycardias on exertion. They are having strange cardiac symptoms, including changes to heart rate and blood pressure. They have chest pain, they have desaturations, you know, the classic cardiac symptoms that you'd expect. You're not going to try and push them through an exercise program. You're going to encourage them to see a physician first. And I think that there is going to be many people living with lung COVID that might not be going through specialist services for people designed for people living with non COVID. And there may be many that come through the doors of physical therapists and physiotherapists around the world first. And so this message is there because we need to make sure that we are aware that there is a risk.

Speaker 1 (23:06):

Perfect. Okay. What's number three. So

Speaker 2 (23:09):

We know that third one is around excluding exertional oxygen desaturation. So what we know is that COVID-19 can cause interstitial pneumonias. And so we have seen this in other diseases. So, you know, it can be things like pneumocystis, pneumonia, or PCPs. You see it in things like interstitial lung disease or idiopathic lung fibrosis with these they can cause these saturations on exertion basically, and as the most safest thing, you want to make sure that your patient is not hypoxic when you try to exert them. So it's a simple thing, but what we know is that this is often something that may have happened to people during acute COVID, but it doesn't mean that they can't have it ongoing. And we are seeing people that are having pulmonary impairments and sometimes these pulmonary impairments can manifest slightly later on as well. So it's just to be mindful of this.

Speaker 2 (24:04):

So the world health organization does recommend, you know, the pulse oximetry is used to measure that's and certainly in terms of long COVID services. So I'm based in England. So the long COVID services that are here do often utilize functional performance measures to determine if someone is exertion de-saturated and they might use something like a sit to stand test or a 40 step test to see if somebody is exertional desaturation, or having disproportionate successional tachycardias as well. But that needs to be finely balanced with point number one about posted exertional symptom exacerbation. Because obviously you don't want to put somebody through a test to determine if their exertion de-saturated, if it's going to cause them to end up in bed for a bit.

Speaker 1 (24:49):

Yeah, absolutely. Again, why point number one was so important. Let's go on to point number four.

Speaker 2 (24:56):

So point number four is about autonomic dysfunction and orthostatic intolerances. So many physiotherapists might not be aware of some of these conditions. So for example, there's something called pots or postural orthostatic tachycardia syndrome which is where people change posture. They go from lying to upright there, their heart rates go really, really high. And with that, they can have symptoms of presyncope or even syncope. And also other orthostatic intolerance is exists where people can have really significant drops in their blood pressure again, causing issues with precinct pain syncope. So these dysautonomia is, are actually being seen to be quite prevalent in many people post virally, potentially. When they're living with long COVID, I said potentially there, because we don't really know what's going on with long COVID. So so we are seeing there's a higher amount of that and the American autonomic association has already published some guidance on that specific to long COVID.

Speaker 2 (26:00):

So the key message with this is if you've got somebody who, when they change position may have a disproportionate dropping their blood pressure or a disproportionate increase in their heart rate, you probably don't want to be getting them doing a downward facing dog or sitting on an upright bike because the likelihood is they could find, or they could have a heart rate of 220. So we need to think about that. Now there are lots of existing research prior to even COVID existing about dysautonomia is including pots and there was all these protocols that existed. And actually some of the work that's come out of Mount Sinai in New York has been looking at adapting those protocols to develop something called autonomic conditioning therapy which that developed in the context of long COVID. But it's really important that we're aware of this because if we're going to be looking at whether a physical activity intervention, including exercise or sports is going to be safe and effective for our individuals sat in front of us in the absence of evidence, guidance, and policies and standards. We need to be aware that these things are happening and people are having strange symptoms including changes to their blood pressure and heart rates with changes in postures. And the, the briefing paper is really clear on what it is what can cause it, how to measure it and what to do if it's there.

Speaker 1 (27:26):

And so we've got those four key messages. We're not going to dissect every bit of this briefing paper, because that would be a whole weekend course, I think, but for people that are listening, what, you know, as being one of the authors of this paper contributors to this paper, what, what is that, that group's hope for people upon reading this paper?

Speaker 2 (27:53):

So I don't know that I can speak for everybody that was contributing to this, but I would imagine that the majority of people have the same opinion as me. It's the lead author of this which is that we hope that this supports firstly, communities of people living with an effected by long COVID when they are accessing care, which is they have a resource that they can take with them to their health care providers and have these open conversations and dialogues about what may or may not be right for me. I also think that collectively, we all really hope that this is going to support clinicians that are going to be providing care for people living with and affected by non COVID. Because we know that at the moment, a lot of people are looking for information and there's, there's a lot of information that's either direct or indirect, and sometimes it can be difficult to see the wood for the trees when there's that much information.

Speaker 2 (28:48):

And so we're really hoping that this has consolidated over 180 citations into one document and every single citation has got a PDF link. So you can access that literature yourself. You can do your own research around it, should you want to, but we're hoping thirdly, that this will be a starting point. We're hoping this is going to be a starting point for hopefully international collaborations to work on these messages, to develop guidelines, standards, and policies around that as the evidence continues to emerge, but also to guide the research agendas, because obviously there are going to be some people where exercise will work for them, but we need to know who they are. And we need to make sure that whilst we're doing that research, that we have the safety messages at the heart of delivering that research too. So this crosses communities, clinical practice policy and also research.

Speaker 2 (29:46):

So I think the hope is that this has wide reaching impact. Obviously we need to see how that is, but this isn't the end of the journey. This is going to have further interest iterations. This is a live document. This will be updated as more research comes out, but we hope as well that people will work with us as things move forward and looking at international collaborations because we know that it's interprofessional, but also multi-sectorial collaborations that meaningfully engage and increasingly include people living with an effected by the health condition that leads to much more positive responses in all of the responses to that health condition.

Speaker 1 (30:25):

Yeah. And, and last thing I'll, I'll touch on here. And that's, I think what you were getting at at that last little bit is really looking at the social determinants of health and of the people who are affected by long COVID. I know I can say here in the United States that we know that African-Americans and Hispanics within the United States much more effected by COVID than other other folks. And so can, might, might this also be with this international collaboration across a lot of different professions, a way to really look at our social determinants of health and what can we do as healthcare providers and researchers, and so on down the line to make sense of this and to to address this, even in, in a small way, I know it's opening a whole can

Speaker 3 (31:25):

Of worms, but you know what I'm saying? Yeah, I

Speaker 2 (31:28):

Do. And I think it's, it's a can of worms I'm prepared to go into. So so yes, we know that in different parts of the world obviously the people that are affected more by acute Corona virus has been disproportionately people of different ethnic groups. So for example, here in the UK, we are seeing it more amongst black, Asian, and minority ethnicity groups. And we're also seeing it amongst different populations of people in terms of employments, but also in terms of socioeconomic status. So we know that health workers and teachers are more likely and people that drive buses, people from black, Asian, and minority ethnicity groups and people that live in deprived areas in the UK. But what's really interesting is we're not seeing that same demographic appear in terms of who's presenting in terms of the demographics of people that we are collecting data on in terms of long COVID.

Speaker 2 (32:16):

So what we're seeing in the UK so with the office for national city plastics, which is probably the most representative and largest epidemiological studies on long COVID to date globally, it's actually disproportionately young white women that are have relatively different social economic. So I think the aims of maybe an unintended aim, but hopefully a positive unintended outcome is that if more people are aware of some of these key indications of awareness, maybe some greater awareness of lung, COVID the people that are probably more likely to get COVID are probably going to also be more likely to get long COVID, but we're not seeing that come out in the data or the people presenting to those services. So we need to think about health inequalities in terms of the candidacy of people to access these services, how permeable are they to access?

Speaker 2 (33:19):

How, how is the adjudication between the individual and the health care providers to be referred to that? What's the individual's candidacy to raise their voice, to say I deserve to access these services. And at the moment we know that structural racism exists, health inequalities exist, and people that experience structural racism often experience healthcare incredibly different to other groups such as white people. And so it's probably likely that many of these people may also be living with long COVID and not presenting to health services and not being counted. And this is a particular issue globally, which is that we're still not effectively counting on COVID. And so we don't know the proportionality of people affected by it and the need globally. So if this briefing paper has any way in contributing to more clinicians, more people being aware of some of the signs and symptoms of lung COVID and particularly those key recommendations in terms of safety, if they can say, well, maybe you do have long COVID. It might be a way of identifying people that are more at risk, but also are more vulnerable to not accessing services.

Speaker 1 (34:21):

Yeah. Perfectly said, I am in awe of your of your ability to succinctly and efficiently get big ideas across that allows people to understand better. So thank you very much for that. That was wonderful. Now, before we sign off here, where can people find you? They have questions. They want to know what's up. I love

Speaker 2 (34:44):

A bit of Twitter, so I'm on Twitter, I'm at Darren brown. Also we've got our long COVID physio group at long COVID physio on Twitter. We've also got a website long covid.physio. So they're probably the best way he's very responsible on Twitter. So yeah, I won't give out my email address, no need,

Speaker 1 (35:02):

No need to, no need to get that personal. But I do have one personal question before. So knowing where you are now in your life and career, what advice would you give to your younger self? Oh

Speaker 2 (35:13):

My God. So you warned me about this earlier, didn't you and I get to repeat what I said earlier. I was like, oh my God, this is like, RuPaul's drag race. Isn't it. There's going to be a picture of a five-year old Darren big helicopter. What would you say to baby Darren? Do you know what I would actually say? Whether I was on RuPaul's drag race or dot is the diversities of people bring out the strengths in others and I'm a man, and I know that Mo and I'm now a person living with an episodic disability. Those things have made me a better person and enabled me to have conversations with my patients and the people that come and access my care in a completely different way that because of the lens that I've seen society and life. So if I was seeing myself as a younger Damron, I would have said, be proud of who you are, be accepting of who you are and know that your diversity, your differences, your quirks, your geekiness, your diff, your things that make you unique are going to truly make you unique when you're older and give you advantages in terms of how you navigate life, society and your job.

Speaker 1 (36:23):

I love it. Thank you so much. That was so perfect. What a great way to end this podcast, Darren, thank you so much for coming on. Thank you for your time. I really appreciate it. Thank you for having me and everyone. Thanks so much for listening. Have a great couple of days and stay healthy, wealthy and smart.