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.
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.
Covid, Long Covid, Physical Therapy, Physiotherapy, Recovery, Mental Health, Support, Fatigue, Symptoms, Adaptation, Relapses, Healthy, Wealthy, Smart,
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Read the full transcript here:
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.
Yeah, thank you for having excited to be able to talk about it. Okay, so
let's start out with the basic question. What is your interest in long COVID?
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.
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?
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.
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.
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
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?
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.
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?
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?
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?
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.
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.
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.
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?
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?
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.
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.
Yeah, so it sounds like a little bit of trial and error until you kind of find that sweet spot.
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
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?
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.
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?
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.
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.
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.
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?
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?
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?
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,
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,
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,
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.
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
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?
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
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?
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.
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.