USA Today article that inspired today’s episode.
Mayo Clinic article regarding long-haulers.
00:00:00] Sarah: You’re Listening to Good Fit Poor Fit. A podcast that explores the interaction between people, design, and activity. Good Fit Poor Fit is part of The Universal Design Project, a nonprofit organization with a vision for every community across the USA to have a surplus of homes and opportunities for social participation that are universally and financially accessible.
[00:00:27] Learn more at universaldesign.org.
[00:00:31] Rebecca: Howdy listeners! We are back with our newest temporary co-host, our student, Lauren, today to talk about an idea that Sarah actually had a long time ago.
[00:00:40] Sarah: Yeah, I’m so glad to have Lauren with us to talk about this as well. But I came across an article several months ago about people who had COVID, who had relatively mild symptoms and some more severe, but they are developing additional and longer lasting symptoms from the virus.
[00:00:58] I can link that article in the show notes, but now that there’s been even more research out there about the effects of COVID on people’s lives, in the short-term and long-term, I wanted to investigate it a bit more plus discuss the all-important topic of making sure our homes are universally accessible.
[00:01:16] I think based on the conversation we’ll have here today, that it’s even more apparent that we can’t take our health or the spaces we live in for granted. Many people are unexpectedly having long-term effects with COVID that directly impact the activities they do in their home every day. Many were relatively healthy people and are now either having to recover from the initial illness at home, in a home that’s not really functional, or having to figure out how to modify their home due to the longer-term effects they’re experiencing. I obviously couldn’t come up with all this content on my own, so my trusty co-hosts are adding to the conversation too. Lauren did some research for this podcast and Rebecca is sharing some input from her OT and engineering brain.
[00:01:59] I also actually did an informal poll of some people on Facebook to share some of their COVID experiences from either the patient side or the healthcare professional side. Many of these folks I talk to, I actually didn’t even know so thank you to my friends who shared my post or reached out to their friends.
[00:02:17] I appreciate your willingness to share your stories with a stranger and allowing me to talk about it on our podcast to promote a good fit between people’s functional needs and their environment. So, Lauren, can you give us a little overview of what you’ve learned about COVID long haulers?
[00:02:34] Lauren: A quick overview for those who maybe heard of COVID long hauler syndrome, but don’t know much about it, it’s now being termed PASC or Post-Acute Sequella of SARS-CoV-2. This new condition can be considered important related to the concept of universal design because it has been showing up in a wide range of individuals, regardless of their age or severity of COVID or pre-existing conditions. So, I was so interested to see this study done by the Mayo clinic on long haulers syndrome and we’ll link this in the show notes. This study found that the vast majority of those with PASC were not hospitalized for COVID, did not have preexisting cardiovascular, respiratory, or psychiatric conditions, and even smaller percentage had fibromyalgia or chronic fatigue. Sarah, what initial symptoms and lingering symptoms have you learned about?
[00:03:30] Sarah: You are exactly right, Lauren, these symptoms definitely impact how someone can use their home and directly links to universal design. So, like I said, I did an informal poll on my Facebook and I received a lot of interesting information. Obviously symptoms varied based on the severity of the infection and other illnesses that some people may have already had, but many people were very healthy prior to having COVID. Most experienced what you hear about on the news for initial symptoms: fatigue, aches, dizziness, fever, heart palpitations, shortness of breath, nasal pressure, weakness, loss of taste and smell, decreased appetite and trouble sleeping.
[00:04:08] Many said they were so tired that everything took more effort. One nurse I talked to said many of the people she was treating, came home with oxygen and she even saw some people who are on trachs and other machines due to respiratory failure. One thing I had actually forgotten to consider, about people returning home with COVID, was also returning home with oxygen and having difficulty managing that around the home, especially with steps. Even recovering at home for people who had these initial onset of symptoms, it would be difficult to go up steps in the home and even take longer walks maybe to their bedroom, the bathroom, or the kitchen.
[00:04:47 ]Lauren: Wow, returning home with oxygen would be such an adjustment. I hadn’t even thought of that.
[00:04:53] Sarah: Right? I actually talked to an OT who was one of our students previously, and she said that she had assisted people in setting up a little station in their bathrooms, outside their shower to store their oxygen tanks while they were showering, because she’s had to encourage them to take really fast showers or their oxygen levels will drop too quickly.
[00:05:14] But Lauren, as far as the topic of long haulers, the folks I talked to did have lingering symptoms: fatigue, and weakness, shortness of breath, vertigo, as well as issues with taste and smell were definitely lingering on for six to eight weeks or longer. One person I talked to said her taste and smell still hasn’t come back even a year later, that must be so difficult.
[00:05:37] She was referred to go to smell therapy in hopes that her brain would recognize different smells and she does smell things, but they’re weird. They smell like dog treats and onions. Some also developed blood clots, renal failure and COVID gangrene, which ended up in amputations in arms, fingers and legs.
[00:05:57] I actually had no idea there was such thing called COVID gangrene.
[00:06:02] Rebecca: Yeah, neither did I. What I will say though, is that amputation can make it really tricky for people to function optimally at home. I think about clients who’ve lost fingers and limbs, and it’s a huge adjustment to get back home. Mundane things like filling a heavy pot with water, doing dishes, even applying deodorant or squeezing a toothpaste tube can become really tricky. This is where people have to get creative in the ways that they set up their home environments to support what are often new found needs.
[00:06:30] Sarah: Definitely. Especially if there’s been an amputation with someone’s legs, balance and moving around becomes another thing to consider. Some also had lingering things like lung scarring, which contributed to decreased ability to breathe and difficulty with her endurance. Even just extreme tiredness was common. One described it as more than just an afternoon slump. It was like she needed to go lay down or her body was going to fall over. It was like a panic of tiredness, how she described it. Another big one that was mentioned was brain fog and decreased ability to remember things and details that once she was able to keep straight.
[00:07:07] Many are also developing mental health conditions, such as post-traumatic stress disorder and depression a combination from this life altering experience and loss of independence that has followed.
[00:07:19] Lauren: Some of the symptoms you mentioned, Sarah, are the most common symptoms I’ve heard about such as fatigue, exercise intolerance, chest pain, palpitations, and difficulty breathing. A term I learned in school, dysautonomia, makes me think about similar physical symptoms that long hauler patients may be experiencing. These individuals will go from one room to another and their heart rate will increase rapidly, making not only exercise, but even just functional movement around their home increasingly difficult.
[00:07:48] Rebecca: Yeah. I think that this example of increasing heart rate is one that OTs work on with clients a lot. I think a lot about things like energy conservation techniques when I hear this.
[00:07:58] Sarah: Yeah, I agree. I think energy conservation is something that can easily be discussed here. Many of the people I spoke with who had COVID still struggle with things like walking, balance, meal prep and showering due to decreased endurance and strength. Finding ways to conserve energy while doing these tasks is key in making sure they’re able to complete the things that they need to do throughout the day. Many people were also going home with devices to manage their pulse, monitor their oxygen and many therapists were providing them packets with breathing exercises and cognitive activities to reduce delirium. I think that the design of a home and changing the way people perform tasks can easily help here. What sorts of things were you thinking in regard to energy conservation, Rebecca?
[00:08:44] Rebecca: So, in order to conserve energy, there’s no magical pill or machine that someone can use to do that. Actually it’s often simple things like moving frequently used objects to easier spots that don’t require a lot of reach or breaking up tasks, like cooking into segments. Maybe chopping the food in the morning, cooking it in the afternoon and cleaning it up at night. These types of things can really work wonders for people who have a limited energy capacity.
[00:09:10] Sarah: Good point. If these tasks are still taxing, one of the nurses I talked to on my Facebook poll discussed how social workers were figuring out community resources to help people with daily tasks, such as cleaning or even meals on wheels so food was delivered and then they didn’t have to spend time doing those tasks and saving their energy for other things.
[00:09:31] People were also reaching out to friends and family. That’s been very common as well. Many spouses and friends are also picking up duties helping the kids, helping with transportation and cleaning.
[00:09:42] Rebecca: Yeah, for sure, that makes sense. Another tip for this that I actually use on my own is when making my bed in the morning. For a lot of people, this can be really tiring, especially if they’re having challenges conserving their energy or becoming short of breath. Basically, I make my bed while I’m still in it. Before I stand up and get out of bed, I prop the pillows up behind me and I just pull the blankets up as high and as smooth as I can. Then I carefully slide out and just kind of straighten everything up. This can be really useful for people when they’re trying to conserve energy. So they don’t have to walk all the way around the bed numerous times to get everything set.
[00:10:21] Sarah: Huh? Well, Rebecca that is such a neat tip. I might have to start trying that to actually make my bed. These are great task modifications, but I know when we’ve had discussions in our design team about how to make the design of spaces more functional, many things come up in regard to having a place for people to sit to do some of these daily tasks, if needed.
[00:10:42] So the ability for someone to sit in the shower or by the stove or the microwave. Even for someone to sit at the sink to wash dishes in the kitchen or to do grooming tasks in the bathroom. There’s also a lot to be said for looking at how people perform tasks. So, making sure they don’t have to walk across the entire room to get things from their refrigerator to an easy prep space to prepare the meal and making sure it’s possible to keep things in close reach in storage that pulls out to you. I’ve heard a cart with wheels is also a great energy saving tip, not having to carry heavy things from place to place. Anything within the design to make a task easier is fair game here. A few other things I was thinking of are, of course, installing grab bars for safety, helping people in sitting, standing and transferring, plus not having to navigate steps in and out of the house or around the home is always going to help. Unfortunately, many people still have lots of steps to navigate in their homes and many of the healthcare professionals I polled are definitely having to recommend that their COVID patients rearrange their home environment by putting a bed on the main floor, because these bedrooms are mostly upstairs, and recommending ramps to get in and out of the home as well.
[00:11:54] Rebecca: Yeah, I think that’s a really good point that you make Sarah. So often when people are discharged from the hospital, whether it’s COVID related or not, they’re told to put a bed on that main floor. This can actually be really challenging in certain home setups. Maybe the only full bathrooms are upstairs. Maybe there isn’t room for a full bed with privacy on the lower level. I think this really speaks to the value of universally or at least, flexibly, designed homes that can be ready for changes. For example, having a full bath on a lower level is a safe call for many people.
[00:12:29] Lauren: I think all of those suggestions sound like they make recovering at home so much easier for someone with long haulers. I also see these concepts being of great use to those with amyotrophic lateral sclerosis also known as ALS or Lou Gehrig’s disease, which is a progressive nervous system disease that weakens muscles and impacts physical function.
[00:12:51] Additionally, these universal design elements could benefit so many others, impairment or not.
[00:12:57] Sarah: That’s a really good point, Lauren, these things can really benefit so many different people and that is the beauty of universal design.
[00:13:04 ]Lauren: Yes. I’m glad you brought up specific tasks that someone may need to do while seated. A couple of weeks ago, I had the opportunity to attend the virtual Livable Environment Conference and learned so much about home design and the awareness that COVID has shed on some of the less functional aspects of current home design.
[00:13:24] So, to your point, Sarah, all of the featured kitchen and bathrooms were designed with the possibility of completing daily tasks while seated with leg room under the appliance. The sinks did not have cabinetry below in either the bathroom or kitchen, so someone could wash dishes or brush their teeth while in their wheelchair or in a chair.
[00:13:45] Also, although a pricier option, having a range separate from their oven so that they can sit an angle closer to the front of the stove top was also mentioned. So as we wrap up, I know we talked a lot about energy conservation and changes to the home environment, but besides fatigue, Sarah, you brought up brain fog, which is an interesting aspect I’ ve heard about as a long hauler symptom, as well. To reference a term used in our last podcast, tolerance for error is a UD principle that would be important to consider in home design. This could mean having a stove monitoring device, which shuts off their stove after a period of inactivity and also step free entries or curb free shower to prevent tripping or falls. What other great tolerance for error home design concepts am I missing?
[00:14:34] Rebecca: One that Sarah and I had talked about in a previous episode is actually related to in-home safety. So having alarms and alerts in the home that self test are really useful because that way, even if you forget to check the batteries on your smoke detector or your alarm, you can rest assured knowing that it’s still working and will let you know if it’s running low on power or if there’s any sort of problem.
[00:14:56] Sarah: Yeah, that’s a really good one. One of the folks that I talked to in my Facebook poll, discussed that with brain fog, she had to continually set reminders right away on her phone or make lists, or she would forget. I think utilizing smart technology by having your phone or even Alexa or Google home, remind you visually and audibly is helpful.
[00:15:17] Or, if you’re old school, post-it notes or even a whiteboard in common locations to alert you of reminders can be a helpful tool, as well. The person I talked to about this said that these symptoms were pretty shocking to her, that they were creeping up after having COVID because this normally wasn’t an issue for her at all.
[00:15:35] Lauren: Yes, those are great points. If you’ve listened to our other podcast or are more familiar with UD and are thinking ‘all of this sounds pretty familiar, it’s because all of these home design considerations have previously been discussed. That’s what makes universally designed homes so universal. Even with emerging diagnoses or new needs of a changing population, the home design stays relatively the same. Long hauler syndrome, or PASC may have been an eye-opening experience for individuals who didn’t expect to have difficulty navigating around their home when they considered themselves young or healthy.
[00:16:12] But how great would it have been if we already adopted the principles of UD in the design of homes and these individuals were able to focus on their recovery in a home that supported their accessibility needs instead of being an added obstacle.
[00:16:27] Rebecca: Excellent point, Lauren, way to really zoom us back out and give us the big picture. I can tell that you’re getting the hang of all of this universal design stuff very quickly. That about wraps it up for today, ladies. And again, listeners, we hope you enjoyed stay well, and we’ll talk again real soon.
[00:16:43] Sarah: Thanks for listening to Good Fit Poor Fit. I’m your host Sarah Pruett, Program Director and Occupational Therapist at The Universal Design Project. Learn more about our work at universaldesign.org, and find more episodes and links to subscribe at goodfitpoorfit.com If you have questions or topics you’d like to discuss, email us at [email protected]
[00:17:10] Thanks for fitting us into your day!
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