The ABC's of ABT with Darci Pernoud - Season 2 Episode 7

Hello, everyone. Welcome to another episode of the No Plateau Podcast. I am your host, Henry Hoffman. I am thrilled to be with you today. We are going to talk about activity-based therapy for spinal cord injury and neurologically impaired populations. Many of us have heard of task-specific training or task-oriented training, but what about ABT or activity-based therapy? So, to help me discuss and digest this topic, I've invited Darcy Pernoud, who is an OT and owner of Back to Independence Rehab in North Carolina. Her clinic is a gym model approach for neuro and spinal cord injury patients, and a big part of her treatment is activity-based therapy. So, we are excited to have her to discuss this topic today. Welcome, Darcy. How are you?

Podcast Transcript

Darcy Pernoud (00:47.366):
Thanks, Henry. Glad to be here.

Henry Hoffman (00:48.64):
Good. I'd like to start off with you sharing with the audience. We have patients and therapists and caregivers listening in. If you could just start off by sharing a little bit about yourself and your professional background. How about we start there?

Darcy Pernoud (01:04.086):
Sure. I've been an OT for over eighteen years. I started out initially and kind of followed the same continuum of care that our newly injured neuro clients do when they have a traumatic injury. So, I started out in inpatient rehab and was in and out of ICU a little bit. I worked through a day program and then in outpatient and did some post-op work and some upper extremity limb lab data collection. Predominantly, most of my clients were spinal cord injured. My first position as an OT, I was the dual diagnosis therapist, so my clients had both a spinal cord injury and a brain injury. So, I cross-trained to work on the brain injury unit, and a lot of our brain-injured client base also could have had a stroke. So, a big background in neuro rehab from the hospital all the way to outpatient. And then my husband's job relocated us away from my therapy family, and I found myself having to find me in the community so that I got more community-integrated, seeing people at their homes in the community. I started networking a little bit with a gym that used to exist in the Charlotte area that was an activity-based therapy gym. Unfortunately, during Covid, they closed, and I pitched the idea to my husband about, "Well, why don't I take this on?" And he surprised me with the speed of return in response, saying, "Sure, do it." So, here we are, two years later, I'm a gym owner.

Henry Hoffman (02:29.64):
Wow.

Darcy Pernoud (02:33.986):
And trying to help the community who've experienced a neuro diagnosis have a community gym, a place of health and wellness, and see how we can help them wherever they are in their recovery journey.

Henry Hoffman (02:45.98):
That is awesome. We're lucky to have folks like you around, so we know neurological injuries are going to continue to occur, and it's important to have the latest information and research available to help these folks. Before we dive into activity-based therapy because, to be honest with you, I was still kind of confused about what exactly it was. I know I primarily focus on stroke, and you typically don't see a lot of articles discussing stroke interventions with activity-based therapy. It's usually mingled in with task-oriented training or task-specific training. But what I'd like to do for the audience, especially the patients and families, is to take a step back. I know a majority of these, from what you said, a majority of these clinics see a lot of spinal cord patients. Just a brief description of spinal cord injury. Some people get confused with what incomplete is, complete, you know, what are the common impairments that you would see? We spend a lot of time on the podcast going over stroke impairments. I think it'd be refreshing just to take a few minutes to talk about spinal cord injury itself, and then we'll dive right into activity-based therapy, if you're okay with that.

Darci Pernoud (03:57.586):
Sure. So, with a spinal cord injury, there's some type of damage to your spinal cord anywhere from the top of your neck down to the base of your spinal cord. A complete injury means that you don't have sensory and motor activity to give your body sensory information and motor response. An incomplete injury, there are different levels of completeness, and people can change their spinal cord categorization, and that can change because of time. There's a lot of swelling around the spinal cord initially, so new injuries usually have a baseline ASIA testing given. Usually, when people go home, they'll do another assessment test, and there's more likelihood with some levels of completeness that it can change over time. But there's such a wide variety of spinal cord injuries. So, there's complete, there's inaccurate information given back to the spinal cord for sensory and motor. There's sensory incomplete, which would be ASIA B, and that means that clients are accurate with their sensory information; their body's interpreting it. Then there's motor incomplete, which means that there's motor function below their level of injury. And then there are two different types of motor incomplete. There's one where you have strength but won't be able to go against gravity as much, which is ASIA C, and then in ASIA D, the amount of motor return below that spinal cord injury is going to be stronger. So, that's going to be someone whom you see walking after a spinal cord injury, more likely. I like to tell my students and my trainers in the gym that no spinal cord injury is alike. Eighteen years out, I'm still seeing so many different unique presentations. It's very important that each individual is treated as an individual because even though I'm going to have twenty people that are gym users that all have a C5 cervical level spinal cord injury, some of those wheelchair or spinal cord injury survivors, they might be walking with a walker, they might be in a power chair, they might be in a manual chair, or they might be kind of splitting up how they function. All those different mobilities have different levels of function, sensory, and motor presentation.

Henry Hoffman (06:21.58):
Got it. Thank you for that description. You mentioned during the acute stage, and then over time, it may change. You know, when I think of this analogous to ischemia and the umbra or the legion area of the brain that dies following a stroke, you know, let's say the stroke is a ten to twelve-hour event, and during that time, the legion area dies off; it's not coming back. And then they have the number of the surrounding area, and that's the area we're focusing on for spontaneous recovery. You know, trying to add blood flow to that area, get rid of edema, and then start the neuronal connectivity to hopefully have a spontaneous recovery. And that takes, according to Dr. Amaric, could take a couple of months. Does that occur in spinal cord injury? Are you ever going to have a spontaneous recovery? And what does that look like? And is it less common than strokes' spontaneous recovery? Because I can tell you that's not too common either. So what can you share about that?

Darci Pernoud (07:28.046):
So with spinal cord injury in general, the old theory or what people are generally taught is usually within two years, you see the most change. But I'm also suspicious as to where is that information coming from. I feel like most people target their recovery within the first two years, and I think that's what insurance helps with within the first two years, and I think that's when most data is allowed to be collected through research is to follow people for two years. I've seen people who've been further out that definitely are making changes and gains, and I think the amount of time and exercise and fitness and access to healthcare professionals to help you progress is going to help you make those changes over time. So that's a very tricky question to answer. Usually, you see the swelling down after the spinal cord injury for a few months. I've seen changes up to a year, and it's been pretty significant with the swelling coming down. That's the medical justification I've heard healthcare providers give people where the changes were coming from and the response.

Henry Hoffman (08:38.48):
And why do they do – maybe this is becoming more popular again, this is just because I don't treat spinal cord patients – the ice treatments or what can you do? I remember, I never forget, I'm a Buffalo Bills fan, admittedly and proud of it, and I remember, gosh, it was probably early 2000s, where there was a spinal cord injury on the field with a special teams player, and they treated him with packs of ice. I'm sure there's fancy technology for that now, and it was amazing how that changed the course and the trajectory of his recovery. Are you familiar with the hospital that you worked at or the trauma center? Is that something that's now considered standard practice, or is that if you're lucky enough to be in that zip code, you might get that type of treatment?

Darci Pernoud (09:26.766):
I'm not up to date on the latest research for what happens immediately. More in the rehab world, once clients are medically stable, able to get out of their bed, they've had their spine fusions to help with whatever trauma happened to their spinal cord orthopedically. So I see people afterwards. But I do have to say, what I've learned from my mentors and my therapist friends who've practiced ahead of me is that the amount of incomplete spinal cord injuries and the amount of people recovering has changed a great deal from where we are today than where we were twenty, thirty, forty years ago. There are many more incomplete injuries, more people walking, and I think it has a lot to do with continued research and a continued thought process on how to push people hard. It's a very hot topic, I feel like right now. The rehab world is higher intensity, pushing people harder to help create that change and drive home that neuroplasticity. So, I'm hopeful that the awesome things that you promote in your podcast and with therapy where it is in today's world and research is to help encourage healthcare professionals and people who have experienced injuries to know that it's okay to push themselves hard, and that's actually what they should be doing. It's important that people know to push hard, work on your recovery. If you wait and see, it's not always going to just come together. You need to stimulate your body to create that change, and there are some great tips and ideas and people out there to help facilitate that.

Henry Hoffman (11:01.38):
Absolutely. Thank you very much for that. All right, let's switch gears over to activity-based therapy. Why don't we start off with you, Darcy, just explaining what the heck is this? What is it? What is ABT?

Darci Pernoud (11:16.286):
Activity-based therapy is a way to drive home neuroplasticity, how to help people's bodies heal after some type of damage to the central nervous system. So our central nervous system is our brain and our spinal column. After a spinal cord injury, when there's been trauma to the spinal cord itself, it will have swelling initially. As that goes down, there's our body's ability to reconnect through that damage. We can have collateral sprouting where the spinal cord can connect around that scar tissue and try to reconnect and get parts of our body back on board to help feel and move and function better. So, activity-based therapy has the main principles on how to do that by getting people up in weight-bearing positions. That can be in standing, kneeling, and quadruped, different places to put weight through our body to help stimulate bone development, keep our bones strong, help our muscles co-contract to strengthen for better stability, to lengthen and promote range of motion. I like to tell a lot of people if you think about how we develop as children or as babies, we're going to wiggle around on the floor. We're going to gain head control, work on rolling, come to sit, work towards crawling, and then walking. So a lot of the foundation of therapy and activity-based therapy is treating our bodies as how we're trying to develop through mobility, strengthen, gain bone density, and help teach our body through those movement patterns. So, a lot of activity-based therapy is those weight-bearing positions moving through those different movements, and then also utilizing therapy principles to use eStim to help facilitate neuroeducation of muscles and strengthening and different movement patterns as specific movements. We need lots and lots of repetition to drive home that neuroplasticity, which is teaching our body to be plastic and moldable. We lose that are lost. We need to challenge our body, use our bodies more to create change, reconnection to hopefully get stronger and increase our function.

Henry Hoffman (13:23.26):
Okay, great. So, I was taking some notes because I want to make sure I got it all. Would the main pillars be definitely doing some type of task-specific or task-oriented training, incorporating modalities like electrical stimulation, obviously strength training and weight-bearing? Are those the four main pillars of activity-based therapy? Did I miss something, or is that pretty solid?

Darci Pernoud (13:46.226):
I did miss one. The other one would be locomotor reciprocal movement patterning. So that could be something like walking, getting on a treadmill, using body weight devices to get someone on a treadmill, or sometimes we'll use different positioning or assistive motors to get people in crawling positions to activate that core strength and weight-bearing through a movement pattern, that reciprocal movement with the arms and the legs. They've done research studies where they transacted a spinal cord, put them on a treadmill, and there's something called central pattern generators in our central nervous system, in our brain and our spinal cord, and by getting that reciprocal movement pattern, we can target the innate ability for our bodies to have some stepping movement. So, targeting those plasticity principles, you can make gains.

Henry Hoffman (14:30.48):
Right. Okay, that makes sense.

Henry Hoffman (14:35.36):
Yeah, so yeah, that to me seems like, you know, I'm trying to compare this to traditional concepts back in the '90s and the '80s and the '70s and what were the folks doing for spinal cord, which I do want to... I'm curious to get your opinion on that since you've been doing this a little bit too. Clearly, weight-bearing's important, loading is important. You've got to do that for many reasons, for the joints and bone density and health. You would think strengthening is important. I always used to say, you know, back in the day, Christopher Reeve, he was at our host at Burke when I was there. I remember he was getting eStim in every muscle group, like six hours a day, and it made sense. I mean, if there was ever going to be a cure, you do want to be able to take advantage of that cure, whether it's spinal cord, stroke, you name it. And the last thing you want to be is atrophied and contracted, and then there's this wonderful, beautiful cure wrapped in a bow that you can't take advantage of. And I think that's what Christopher Reeve was preparing for at that time. So, I can see why strengthening is going to be important.

Darci Pernoud (15:28.526):
Hm.

Henry Hoffman (15:35.38):
The eStim is as a catalyst for strengthening, if you will. I think that's evident. Of course, you could also use that for functional electrical stimulation, whether it's for walking or using your arm or hand. And functional electrical stimulation, for the folks listening who are not aware, that's when you time the eStim with a functional task, versus just regular neuromuscular electrical stimulation, which is on for so many minutes or seconds and off for so many seconds. So it's a ramp on, ramp off cycle. And then task training makes a ton of sense because...

Darci Pernoud (15:39.746):
M.

Henry Hoffman (16:05.1):
You're talking about neuroplasticity, some of the therapist listening now, Klein and Jones' article which goes over the ten principles of neuroplasticity, making sure it's meaningful, are also known as salient, repetitive, challenging, all the key critical elements required in your brain. And then, of course, you mentioned locomotor, that reciprocal movement, walking as key. That's why I like, we'll get into it later, but the skeleton devices or the body weight support devices, so now...

Darci Pernoud (16:09.946):
Oh.

Henry Hoffman (16:35.24):
Let's go down memory lane for a second. Now, when did you graduate?

Darci Pernoud (16:40.986):
2005.

Henry Hoffman (16:41.4):
Okay, and 2005, were they doing, and were you, when did you start doing spinal cord patients?

Darci Pernoud (16:46.906):
2006. I graduated in December.

Henry Hoffman (16:48.2):
Were they actively promoting activity-based therapy then?

Darci Pernoud (16:54.166):
I don't know the exact year that it kind of started getting big. It would have been within the next five years because my roots are from Shepherd Center in Atlanta, and they had a gym that they were developing, and they had an activity-based therapy program where they were using the eStim, the FES bikes to help drive home neuroplastic changes and all the benefits that go along with the eStim bikes. There were some other gyms that started popping up, a lot of people wanted more...

Henry Hoffman (17:19.94):
Yeah, I would...

Darci Pernoud (17:24.026):
Of what therapy was able to give them, and so we started noticing these changes of people having this fitness background and extra activity, utilizing some neuro rehab principles. From when I was a new therapist, we just didn't have the time to address it. We had to do function-based things. I was an inpatient. It was one-to-one, and you have this new injury, you have to be prepared for the new normal and also hopefully give some guidelines on how you continue to improve and get stronger and function. But we weren't able to utilize activity-based therapy then. It was kind of a continuum of care down the road if we could include it somewhat inpatient within the timeline that people were allowed to use it, as well as when someone has a new spinal cord injury, most likely it's traumatic. So there is a lot of pain associated with it. People wear neck collars or back braces, so sometimes people just can't do as much as they would otherwise or what people can do after they're out of the hospital, back at home, living on their own, or in a different facility.

Henry Hoffman (18:27.76):
Yep.

Henry Hoffman (18:34.02):
Yeah, I remember when I was at Burke Rehabilitation Hospital, and I worked on the spinal cord unit. You had to go through all the different units as you traversed through your way of your career before you get to outpatients. So I did probably six months on a spinal cord injury unit, and I remember, you know, you had the poles you could do strengthening with wrist cuffs. You had an arm bike. E-Stim was not used as much as it should have been. And there definitely wasn't technology to help them get the walking in that they needed. It was just starting to come out, the robotic technologies. And so I can see that there was probably six percent of activity-based therapy was probably be undone, but not a hundred percent. Now I know that's different, so let's shift gears and actually talk about, well, what is how much, you know, as you go from acute to inpatient, you said Shepherd picked the hospital, were restricted by insurance. So what is considered the guide.

Darci Pernoud (19:15.606):
Hm.

Henry Hoffman (19:33.92):
Lines as of today, how many hours per day of therapy will a spinal cord patient get in a hospital setting? Now, spoiler alert, it's not enough, and they're going to need folks like you. But before we get to the gym outpatient model, what is the current expectation if you suffer a spinal cord injury and you go to the leading spinal cord hospital in the country? What is the best care you're going to get from a standpoint of frequency and duration in time.

Darci Pernoud (20:07.506):
So to be on rehab status, you need to be able to tolerate three hours of therapy. I kind of mentioned in inpatient, some people have had horrible accidents there and a lot of pain. They're dealing mentally with a whole different change of just understanding their physical capabilities are very different. So three hours might just be trying not to pass out and sit up and deal with your blood pressure with pain management. There's a lot of neurogenic found bladder, so a lot of people will feel as well for lots of different reasons. So three hours is the baseline, but for them to physically be able to perform at three hours a day can be challenging, especially if someone's on a ventilator and trying to just work on breathing. That's like trying to train for a marathon and then try to move your limbs at the same time and to be able to breathe and function is a lot. So Shepherd Center does an amazing job. I know everyone can't be a Shepherd Center or a model center. I think a lot of the model centers do amazing work with the time that they're allowed. They can get those three hours. There are extra people who can do extra training. It's been exciting to see how exercise physiologists are being incorporated into the medical models so they can help with the stretching, the range of motion, the strengthening, so the therapists can do more of the reeducation, the physical things to kind of bring another health care professional into the mix in the medical model. So you're saying if we go to the perfect system or my roots, they can get people more than three hours. I know that's not common. And if someone is physically able to tolerate more, I have seen four or five hours a day. And if you have an awesome caregiver who can physically help assist you, they can be doing extra things, helping you push the halls, utilize different equipment the therapist will train them on as they're appropriate. So a minimum of three hours in an ideal perfect setting, they're getting five hours plus, but that's if they're feeling up to it, if pain's not an issue, and everything else.

Henry Hoffman (22:16.42):
Okay. So let me compare this to stroke rehab and let me compare this to stroke for a second. When you think about hospitals, my frustration, if you listen to any of the podcasts or listen to any of my LinkedIn posts or read, rather, one of the common themes that I have, and it's very frustrating, is when the patients get admitted and they're going into therapy, our profession, or OTs, are embracing compensatory strategies. And we're teaching patients to be independent when handed so they can get dressed to improve their score, their performance, because we know that we're gonna see them for two to three weeks. Little do we know that's causing their own cell death because as we continue to ignore their impaired side and focus on their healthy side, the cells start to print away and die, the networks. So it's a very frustrating problem that exists at a lot of facilities. Maybe it's me, but I feel like the spinal cord therapists are in a better position to do science-based treatment, and they're not making these critical mistakes that the stroke therapists are making. Or crazy, and it's happening everywhere. So I guess my question to you is, yeah, if you're at the first a stroke patient, if you to a very top-notch stroke, say the stroke center, you may get me therapy, mental practice, Eastern, you know, forced use. And we're not going to spend a ton of time teaching compensatory strategies. But that's like less than five percent. Can you say the same thing for a spinal cord facility, or for spinal cords, a different story? These therapists know the guidelines. They stick to the guidelines. If you go to a top 50 hospital that treats spinal cord patients, chances are you're not gonna be pulling your hair out because they're doing things that were like 30 years old that are no longer proven effective. Is that, does that occur? Or is it different for spinal cord?

Darci Pernoud (24:28.186):
I think there's a combo approach. And I’ll tell you the biggest limiting factor is length of day. There's that quick rush to train people with the knowledge of how to be safe, to be able to live safely and not be rehospitalized. They need to understand how to care for their body with bladder, bladder, with skin needs so they're not going to be rehospitalized. So if you only get three weeks to treat someone, how to totally do everything different? Again, I mentioned if they had a traumatic injury, they're dealing with pain, lots of different medications on board. Some people have a spinal cord and a brain injury. So they're trying just to work on memory, entertaining all the information, dealing with everything else. I think spinal cord therapists do a combo approach. You have to learn what you can use at that time to be functional. So they're going to be teaching functional tasks, how to learn how to take care of yourself before discharge, and training your family members or caregivers to take you home and be safe. And hopefully, with the time that they have, someone and rehab also do the neuroplasticity, neuro-reeducation principles. So I think it's maybe a better blend than what you've kind of experienced in the stroke world, but there is a give-and-take with how much time you're given to address things because there's that kind of ticking clock with how many visits do you keep for someone. And I’ve unfortunately perceived the difference between different hospital settings. I’ve seen people are able to stay longer at certain places than others, and so the therapist's hands are tied with what they're able to teach people and how they can teach them and train them in therapy. So it's a juggle.

Henry Hoffman (26:16.44):
Well, what is the actual length of stay on average for a spinal cord patient? I mean, what do you typically see? I know for stroke, it's like two to three weeks max. I feel like that's not enough time for spinal cord, certainly. So is that the same case?

Darci Pernoud (26:34.066):
I think sometimes a little bit of level of injury can affect the length of stay, how sick someone is, how traumatic their injury was, what their insurance provider is, and I think there are some amazing healthcare providers that are case managers, doctors, there is that will go to bat to ask for more length of stay. I have a family member who was supposed to be discharged after two to three weeks, and her daughter was a high quadriplegic level of injury, had very little arm movement, and the mother did not feel comfortable at being discharged because she didn't know how to manage her bladder, bladder, her skin, how to get her safely in and out of the bed. So she kind of put a big stink up, and I’m so glad that she did. She's an amazing advocate for her family. And so she got two more weeks because it would not have been a smooth transition. And that is something that's helpful for family members to know and that hopefully they're getting the proper training because if you send someone home and doesn't know how to take care of themselves, they're going to be rehospitalized, and skin sores are a very real and scary thing. And so someone's not comfortable with keeping their skin healthy, dry, and intact, they're going to be rehospitalized, and sores can lead to a huge length of stay. So sometimes knowing the right way to advocate for yourself to make sure the insurance provider understands that they're going to be paying out less if they can do a little bit more training and access to therapy for the family members and the client, they're going to be able to hopefully stay a little bit longer. But that's not always the case. But I encourage anyone if they're in those early phases to really make sure they get as much training and be integrated into the rehab, nursing, and therapist world because they're going to kind of have to fill those spaces once they leave.

Henry Hoffman (18:27.76):
Yep.

Henry Hoffman (18:34.02):
Yeah, I remember when I was at Burke Rehab Hospital, and I worked on the spinal cord unit. You had to go through all the different units as you traversed your way through your career before you get to outpatients. So I did probably six months on a spinal cord injury unit, and I remember, you know, you had the poles you could do strengthening with wrist cuffs. You had an arm bike. EStim was not used as much as it should have been, and there definitely wasn't technology to help them get the walking in that they need. It was just starting to come out, the robotic technologies. So I can see that there was probably six percent of activity-based therapy was probably being done, but not a hundred percent. Now I know that's different. So let's shift gears and actually talk about, well, what is how much, as you go from acute to inpatient. You said Shepherd picked the hospital, we're restricted by insurance, so what is considered the guide.

Darci Pernoud (19:15.606):
Hm.

Henry Hoffman (19:33.92):
Lines as of today, how many hours per day of therapy will a spinal cord patient get in a hospital setting? Now, spoiler alert, it's not enough, and they're going to need folks like you. But before we get to the gym outpatient model, what is the current expectation? If you suffer a spinal cord injury and you go to the leading spinal cord hospital in the country, what is the best care you're going to get from a standpoint of frequency and duration in time?

Darci Pernoud (20:07.506):
So to be on rehab status, you need to be able to tolerate three hours of therapy. I kind of mentioned in inpatient, some people have had horrible accidents there, and a lot of pain they're dealing mentally with a whole different change, just understanding their physical capabilities are very different. So three hours might just be trying not to pass out and sit up and deal with your blood pressure with pain management. There's a lot of neurogenic found bladder, so a lot of people will feel as well for lots of different reasons. So three hours is the baseline. But for them to physically be able to perform at three hours a day can be challenging, especially if someone's on a ventilator and trying to just work on breathing. That's like trying to train for a marathon and then try to move your limbs at the same time and to be able to breathe and function is a lot. So Shepherd Center does an amazing job. I know everyone can't be a Shepherd Center or a model center. I think a lot of the model centers do amazing work with the time that they're allowed. They can get those three hours. There are extra people who can do extra training. It's been exciting to see how exercise physiologists are being incorporated into the medical models. So they can help with the stretching, the range of motion, the strengthening, so the therapist can do more of the reeducation, the physical things to kind of bring another healthcare professional into the mix in the medical model. So you're saying if we go to the perfect system or my roots, they can get people more than three hours. I know that's not common, and if someone is physically able to tolerate more, I have seen for five hours a day. And if you have an awesome caregiver who can physically help assist you, they can be doing extra things, helping you push the halls, utilize different equipment the therapist will train them on as they're appropriate. So a minimum of three hours in an ideal perfect setting, they're getting five hours plus, but that's if they're feeling up to it, if pain's not an issue and everything else.

Henry Hoffman (22:16.42):
Okay, so let me compare this to stroke rehab, and let me compare this to stroke for a second. When you think about hospitals, my frustration, if you listen to any of the podcast or listen to any of my LinkedIn posts or read, rather, one of the common themes that I have, and it's very frustrating, is when the patients get admitted, and they're going into therapy, our profession, or OTs, are embracing compensatory strategies. We're teaching patients to be independent when handed so they can get dressed to improve their score, their performance, because we know that we're going to see them for two to three weeks. Little do we know that's causing their own cell death because as we continue to ignore their impaired side and focus on their healthy side, the cells start to print away and die, the networks. So it's a very frustrating problem that exists at a lot of facilities. Maybe it's me, but I feel like the spinal cord therapists are in a better position to do science-based treatment, and you're not making these critical mistakes that the stroke therapists are making or crazy. And it's happening everywhere. So I guess my question to you is, yeah, if you're at the first, a stroke patient, if you go to a very top-notch stroke center, you may get me therapy, mental practice, e-stim, you know, forced use. And we're not going to spend a ton of time teaching compensatory strategies. But that's like less than five percent. Can you say the same thing for a spinal cord facility or for spinal cords, a different story? These therapists know the guidelines. They stick to the guidelines. If you go to a top fifty hospital that treats spinal cord patients, chances are you're not going to be pulling your hair out because they're doing things that were like thirty years old that are no longer proven effective. Is that does that occur or is it different for spinal cord?

Darci Pernoud (24:28.186):
I think there's a combo approach, and I'll tell you the biggest limiting factor is length of day. There's that quick rush to train people with the knowledge of how to be safe, to be able to live safely and not be rehospitalized. They need to understand how to care for their body with bladder, bladder, with skin needs so they're not going to be rehospitalized. So if you only get three weeks to treat someone, how to totally do everything different. Again, I mentioned if they had a traumatic injury, they're dealing with pain, lots of different medications on board. Some people have a spinal cord and a brain injury, so they're trying just to work on memory, entertaining all the information, dealing with everything else. I think spinal cord therapists do a combo approach. You have to learn what you can use at that time to be functional. So they're going to be teaching functional tasks, how to learn how to take care of yourself before discharge and training your family members or caregivers to take you home and be safe. And hopefully, with the time that they have, someone and re-educate or do the neuroplasticity, neuro-reeducation principles. So I think it's maybe a better blend than what you've kind of experienced in the stroke world, but there is a given take with how much time you're given to address things because there's that kind of ticking clock with how many visits do you keep for someone. And I've unfortunately perceived the difference between different hospital settings. I've seen people are able to stay longer at certain places than others. And so the therapist's hands are tied with what they're able to teach people and how they can teach them and train them in therapy, so it's a juggle.

Henry Hoffman (26:16.44):
Well, what is the actual length of stay on average for a spinal cord patient? I mean, what do you typically see? I know for stroke, it's like two to three weeks max. I feel like that's not enough time for spinal cord, certainly. So is that the same case?

Darci Pernoud (26:34.066):
I think sometimes a little bit of the level of injury can affect the length of stay, how sick someone is, how traumatic their injury was, what their insurance provider is, and I think there are some amazing health care providers that are case managers, doctors, there is that will go to bat to ask for more length of stay. I have a family member who was supposed to be discharged after two, three weeks, and her daughter was a high quadriplegic level of injury, had very little arm movement, and the mother did not feel comfortable at being discharged because she didn't know how to manage her bladder, her skin, how to get her safely in and out of the bed. So she kind of put a big stink up, and I'm so glad that she did. She's an amazing advocate for her family, and so she got two more weeks because it would not have been a smooth transition, and that is something that's helpful for family members to know, and that hopefully they're getting the proper training because if you send someone home and doesn't know how to take care of themselves, they're going to be rehospitalized, and skin sores are a very real and scary thing, and so someone's not comfortable with keeping their skin healthy, dry, and intact, they're going to be rehospitalized, and sores can lead to a huge length of day. So sometimes knowing the right way to advocate for yourself to make sure the insurance provider understands that they're going to be paying out less if they can do a little bit more training and access to therapy for the family members and the client, they're going to be able to hopefully stay a little bit longer, but that's not always the case by you encourage anyone if they're in those early phases to really make sure they get as much training and be integrated into the rehab, nursing, and therapist world because they're going to have to fill those spaces once they leave.

Henry Hoffman (28:14.12):
Yeah, so

Henry Hoffman (28:26.36):
Okay

Henry Hoffman (28:30.36):
So when they leave the inpatient hospital, are they then going typically to home or somewhere else immediately after discharge?

Darci Pernoud (28:41.826):
So if we're saying we're in a perfect world, you're going in a hospital system that has a day program. Those are very limited from what I know of in the country. So for most people, they're going to be going home, hopefully not a nursing home, and their family member has been trained to know how to care for them, and they'll have home health to come out to kind of start the next phase of therapy. Or if the family has transportation abilities, be able to go to that facility that has expertise in spinal cord injury to understand how to help guide someone through the recovery process and understand the specialty of neuro rehab and how to do that. A lot of people are limited because they're now a wheelchair user, and they don't have access to transportation. Depending on where you live, you might have some public transportation in the bigger cities. And then some places, if you have an ideal setup, there's a day program that you can either drive to and commute for therapy during the week, or that you will have transportation, or there are some great places that will provide some housing if you live out of town, so that you can get some day program. A day program is an intensive rehab program where you can be there Monday through Friday, at least three hours a day. If there aren't those day programs, then there's usually outpatient where you can go for PT and OT just for a few hours a week. Might be two or three days a week for so many weeks. But definitely with neuro rehab and neuroplasticity is all about repetition and intensity. So more is better in the therapy world if you can have access to it.

Henry Hoffman (30:20.92):
Right, so with your clinic, back to independent rehab, what is the average onset post-injury for your clients? When do they come to you typically throughout the journey of this recovery process? Is it a couple of months post-injury, or is it typically years when you first get that new admission? How many months, years post-injury are they typically?

Darci Pernoud (30:43.646):
We have a very wide array; ideally, they're here a few months afterwards. Um, I like for our clients to know that we're a community resource because we are health and wellness neuroplasticity training. We are not insurance-based therapy. Um, so I always encourage our clients to maximize their outpatient visits, utilize their insurance benefits, get that awesome skilled care from your therapist, and stay as long as you can. But neuroplasticity and targeting the body's ability to create change for the better, intensity is better. And so activity-based therapy gyms around the country. Um, have been around for quite a while, but we're not hugely widespread. It's a very unique niche. Um, and so because we're not covered by insurance, it does get expensive. And so that's kind of another limiting factor to accessing additional services outside of the insurance-based world. And so our clients can fundraise and utilize some amazing grants around the country to self-pay for additional services. More practice, more repetition is ideal. And I think the big difference between seeing outpatient therapy and activity-based therapy gym is that in therapy, you're held attainable, typically by your third-party payers. Insurance wants to see functional outcomes; they want to see certain measures are being met. And so unfortunately, therapists, again, kind of have their hands tied for how much they can do, how much they can intervene until insurance won't allow any more visits. Um, and they also have to utilize typically like you mentioned before with stroke survivors, teaching people what they have functional and what they're moving more to address in therapy goals where with activity-based therapy, it doesn't matter what's moving or not, what they can actively move. If we're trying to target not only what they can use but what's not working right now, we're addressing below their level of injury. So if they don't have leg movement or trunk activated, we want to see how we can stimulate the body to create that change. Um, and see what maximizes what the body's potential is.

Henry Hoffman (33:04.02):
Right, so it sounds like everyone meets the criteria for activity-based therapy unless you don't have the cognitive ability. I mean, if you have the cognitive ability to follow commands, let's say it's a brain injury/spinal cord patient, there are still some things you can be doing under the umbrella of activity-based therapy with them. So it seems like everyone qualifies. Um, all right, so we talked about activity-based therapy as far as what it is. What are some of the ultimate benefits, or maybe a better way to say this, can you give us an example?

Darci Pernoud (33:23.326):
Definitely, yes.

Henry Hoffman (33:33.82):
All of a classic positive testimony, all of one of your patients who came in and described what you did with them to get those results, just so the audience understands. Okay, look, if you go to a clinic or a gym where there is an occupational therapist and a team, here are the things that this person is going to be going through, and here are the outcomes that one may be able to receive if you can share that would be great.

Darci Pernoud (33:59.146):
Yeah, well just to kind of review, um, we all need to be exercising as human beings. We need to be active to live healthier, to live better, to live longer. And so for just the typical person, Henry, do you know how much we should be exercising a week?

Henry Hoffman (34:17.56):
Um, per day or per total per week or percentage per week and hours. I want to try to nail this one in hours or percentage. Okay, hours. So okay, my waking hours, let's say twelve hours. Let's say seven, probably six, seven, five. I'm gonna say thirty-five hours.

Darci Pernoud (34:22.165):
Per week, per week.

Darci Pernoud (34:29.266):
Okay, hours, minutes.

Darci Pernoud (34:45.326):
So we want to get at least a hundred and fifty minutes a week of cardiovascular training. So, uh, you have a chance, yeah. Well, and so we also want to look at the intensity, so we want to ideally be doing a hundred and fifty minutes of moderate to vigorous intensive work out to get a heart rate up, to help with circulation, um, to help be at our best for respiratory training, to help increase our metabolism so that's what we want to do.

Henry Hoffman (34:49.54):
Oh geez, that's it. So I have a chance.

Henry Hoffman (34:55.4):
I was thinking it's gonna be like a boot-camp style.

Darci Pernoud (35:15.086):
Cardiovascular. And then we need to be doing resistance training at least two or three times a week, at least thirty minutes or more to target the major muscle groups in our body to be strong, to have better posture, um, to maximize what we're doing to live better, feel better, um, and function better and live longer. So with that hundred fifty minutes of cardiovascular training and resistance training a week, that's for able-bodied people who haven't had an injury or.

Henry Hoffman (35:19.4):
Okay.

Henry Hoffman (35:44.44):
Right.

Darci Pernoud (35:45.386):
Some type of medical need. Now, Henry, do you know how much someone with a disability needs to be exercising?

Henry Hoffman (35:52.22):
Probably five times as much because you're sitting all day. Yes, exactly. My brain is always geared towards thousands and thousands and thousands.

Darci Pernoud (35:56.826):
To drive neuroplasticity, you and I would probably say yes.

Darci Pernoud (36:04.546):
Yes, I love it. So no matter what your abilities are, everyone needs to be working out the same amount, and that is by the recommendations from the Center of our disease, the CDC, the World Health Organization. Um, no matter what your abilities are, you still need to have cardiovascular health. You need to have resistance training to target your muscular strength, and that's going to help us live longer, live better, and function better. And so with our clients and our community members, no matter after a stroke, after spinal cord injury, they need to be working out just like anyone else. Now their abilities to work out and to get the cardiovascular training or to challenge their resistance training is going to be unique to everybody. And so sometimes it takes more professional or unique equipment for them to be able to do that. Um, so with activity-based therapy, I kind of wanted to back up just to drive home how much people need working out, no matter who they are. And then the benefits with that exercise training with activity-based therapy, getting people out of their chairs, getting them active, getting them weight-bearing, driving home cardiovascular training is going to have better respiratory function, better cardiovascular function, better circulation, better bone density. It's very common for a lot of our wheelchair users to maybe miss a doorway or have a foot twisted, and then they have a broken leg or maybe they perform a transfer and they fall on the ground. Well, if they're not maintaining their bone density, it's very likely that they can fracture a limb. That's going to slow them down; it's going to keep them in bed. And as we know, as therapists, being stuck in bed is not good for anyone. You're going to atrophy; you're going to get weaker, your mental health is going to go down; um, you're not able to socialize. So your quality of life is greatly changed. And so by applying activity-based therapy principles that include our health and wellness exercise measures, it's getting bone density where it needs to be, it's getting our cardiovascular training where it is, it's getting our muscles stronger for resistance training, which is going to help with postures; it's going to help people look better. The benefits of exercise: getting circulation, getting all the right hormones, the growth factors, everything on a cellular level is going to be improved. So people are going to feel better; their mental health is going to be better; that's going to affect their quality of life. And then also being in a place of community and activity.

Darci Pernoud (38:34.326):
If there be gym, there's going to be per support, whether it's for the participants that are working out in the gym, but also their family members or caregivers that come. I love when I have family members that are either talking to each other, sharing resources, starting friendships, talking about different services that they found helpful. And I even have clients who will talk to. I have a client that was talking to a mother of one of my teenagers, and so she's been dealing being a mom of a teenager and having to deal with the onset of paralysis with her teenager, how she's raising her hand; it's a new disability for all of them. But having her talk to a gentleman who's also gone through a spinal cord injury, he was kind of commiserating and sharing his stories and encouragement. That's what I love most; it makes my OT heart so happy to hear people share resources, gain some relationships. Um, and people don't have to be best friends with other people with disabilities and other wheelchair users, but I think there's such a wealth of shared knowledge, shared experiences, and just to support each other and cheer each other on. So I think anyone can find a place of community; there's such benefit in that. And also outside of the peer support, just the camaraderie; there's no stigma to coming in here with a leg bag to drain your bladder. A lot of our clients have neurogenic bladder, so passing gas when you can't control it doesn't matter; if we just roll with it, that's the norm. Someone takes a little bit longer in the bathroom, or they need to cancel a session because they're having some other challenges, that's the norm here. We understand it. So there's not a fear of embarrassment after people get to know us, and we can say, "Hey, that's normal, not a problem." And our clients can talk about it with other people. And so I think having a place of community for the peer support, the mental health, the common understanding, and our know-how to keep people healthy, we understand the skin sensory deficit that can come along with it. So we're going to be careful with how we're adjusting and putting people in equipment, or strapping on different and Velcro devices or putting people in equipment to make sure that they're staying healthy while we're promoting their neurological recovery and health and wellness benefits.

Henry Hoffman (40:54.24):
Well, that's awesome, that's a great description, and um, sounds like you know anyone who's in the Charlotte area definitely needs to look you up for sure. Speaking of these gyms, how popular are these gyms nationwide? Is this something that if there's someone listening right now that has a family member who suffered a spinal cord injury, what are the odds of them in a ninety-mile radius finding a gym like yours?

Darci Pernoud (41:20.726):
If they're in a major city, their chances are going to be higher. There are some therapy practices with wellness models, so if there's a therapy practice that has neuro, they might have a wellness model that they could potentially utilize. There is a website, spinalcord.com, and if you search that website for activity-based therapy, they do have a map of different places around the country that offer activity-based therapy that they've kind of gotten to know and approved and kind of give them the stamp of approval in order to help people access facilities and gain knowledge of where they can be found. There's a lot in Florida; there's a lot in California; there's a good handful in Texas. But outside of those states, you're usually kind of in a major city; otherwise, they're hard to find. It is not uncommon for people to drive quite a distance for these facilities. I have a gentleman that comes twice a week from two hours away just to work out, so he understands the benefits, has good family support and funding to be able to continue to access a specialty gym. But if you're not in a major city, it can be very challenging. There are several gyms that offer different travel programs where you can come work out for a week or two, or even like a trainer, they will train a family member or a community member to come out, have the skill set to know how to help guide someone in activity-based therapy principles and then take it home. And that's how a lot of these gyms have started; a lot of people would train the trainer, take someone back to their community, and then they wanted to share that new experience and expertise to other people in the community for all the wonderful benefits and continued recovery training.

Henry Hoffman (43:07.42):
So my head is going to go down the Telerehab remote model in a second, but before I get there, one thing I forgot to ask you is the equipment. You know, if you're an OT or PT and you want to start doing activity-based therapy, what are the common pieces of technology or equipment you really should have to make this successful? What stands out for you?

Darci Pernoud (43:33.486):
Uh, definitely some type of standing device like a table or a standing frame. Um, and so it's very common in a therapy world, but you're not going to find it outside of a rehab setting unless it's an activity-based therapy center. Um, and that's another important aspect of an activity-based therapy center; we're going to have equipment or unique equipment to get people out of their wheelchairs, to put them in different positions to challenge their body, um, to see what kind of gains and maximize the physical potential of their bodies. So if I was starting something from scratch and, of course, unfortunately, cost factor goes in, but a standing frame or tilt table of sorts to get people upright is always awesome. And then really just a gym mat or mat on the floor to get people out of their chairs, so there you can do all the gross motor rolling, moving, stretching, activating, trying to tap into their body with different movement patterns. Very helpful. And then all the use of e-stim; you can get a small e-stim unit for fairly inexpensive so people can come up with their own activity-based therapy program to implement when they don't have a local facility. I think guidance of someone to not re-invent the wheel would be awesome. So the use of telehealth to access a professional to do the right principles is always going to be helpful; you're not re-inventing the wheel. So you can start grass roots and if you had the budget and funding, there's amazing rehab equipment that sometimes people have access to in rehab but you only have it for a limited point. Some activity-based therapy gyms have a lot of the equipment. I've seen some with exoskeletons; I've seen some with some great body weight support treadmill training. Having access to a body weight support treadmill system is amazing because it can help people maximize what they can do, adjust the weight that they can put on their feet or even just promote that stepping pattern to tap into neuroplastic principles. It's very important, but in a rehab setting, we're only able to put people who have insurance coverage and enough strength to get on those pieces of equipment. But at an ABT gym, even if you can't actively move your legs, being upright is important; it's going to help you with your circulation, your blood flow, with bladder function, maintain your bone density. There are so many great reasons why to get someone up.

Darci Pernoud (46:03.286):
And on a treadmill, even if they can't actively move their legs, but they need to be safely facilitated in that. So it does take an expert provider to be able to facilitate that, which is where these gyms are and how beneficial they are for people to utilize. I kind of went from small grass roots equipment and then went big because there's such an extreme amount of equipment, and equipment is the big shiny thing that people always want. Equipment is amazing, but I think really if you have the right.

Henry Hoffman (46:18.92):
Yeah, no, no.

Darci Pernoud (46:33.366):
In the right person to teach you how to do things, you don't always need the big fancy exoskeleton and equipment. It never hurts, but I think a lot of the whole community in the recovery journey can still utilize activity-based therapy principles without the big shiny, fancy, expensive equipment.

Henry Hoffman (46:51.92):
You know, with stroke survivors, they're always hoping to get their hand back; with spinal cord patients, they're hoping to walk. So is, you know, you're up to date more than I am with the research. I mean, is it still a pipe dream to think that with the new invasive stimulation devices and what's coming down the pike, can that actually, are we seeing progress where there might be a chance? Because where I'm going at is, in a perfect world, why the heck wouldn't you want to.

Darci Pernoud (46:59.466):
Yeah.

Henry Hoffman (47:21.84):
Use an exoskeleton or a robotic device for that reciprocal gait pattern training? It's not like you're going to get it if you only have a mat; it's not you're going to get it there unless you have a pool or something else that's going to de-weight the client. So with stroke survivors, they still want their hand back, we still know neuroplasticity is the way to get it back, and we still know it's a very tough road.

Darci Pernoud (47:28.646):
Hm.

Henry Hoffman (47:46.42):
Are we seeing progress with spinal cord patients with potentially walking if they are not contracted, not fully atrophied, or are we still in the same situation we were ten, fifteen, twenty years ago when it comes to, if you have an incomplete injury, you know, chances are if you're in a wheelchair year one, you're probably going to be in a wheelchair year five.

Darci Pernoud (48:10.166):
I think there's amazing things out there right now with research, and unfortunately, research has to be so safe; it's just a very slow process. I think it's really exciting where we're coming with exoskeletons, like you said; it's driving home that neuroplasticity principle. It's just, and they're out there, people can get them, but it's to be able to afford them, how do you fund them? Everything is so expensive in that neuro-rehab realm, but there, there's huge changes, they're doing lots of different implant systems, there's stem cell research, there's so much going on. It's exciting to see where people can get. I do have many spinal cord injury survivors who do walk, and the ability to walk is such an extreme; maybe they're just walking at home, maybe they're just standing at the counter in the bathroom at their sink, maybe they're not just not going to walk through the airport. But then I have clients that come through our doors, and you have no idea that they're a spinal cord injury survivor, and they're really just working on how we can safely get them to the next level, maybe how they want to get back into running a 5K or there's a type of spinal cord injury which affects your arms more than your legs. So I have a client, she's actually a spinal cord stroke though, so it's more rare, but people can have a stroke at their spinal cord level, and so it presents like a spinal cord injury. And so with spinal cord stroke, it affects usually your arms more than your legs. So she's hiking on the weekends with her boyfriend, and you would have no idea that she's a spinal cord injury survivor, but her arms are weaker, and so we work a lot on how to integrate arm recovery, fine motor work so that she could be more functional and independent. So all these different injuries, I think walking is such an exciting time; it's just people are having to wait for the right answer to see what kind of spinal cord stimulators are coming through the pipeline of research and what can either help get their bodies healing and working better or use it as a compensatory strategy with maybe they would need an exoskeleton. But it's keeping them upright with all the other benefits to being upright and moving and not being limited to a wheelchair as a mobility device. I definitely say there's exciting things with research; I don't know how.

Darci Pernoud (50:40.146):
We're going to see things accessible because as we know everything is limited by funding and research for access.

Henry Hoffman (50:46.08):
Yeah, I get it. I mentioned telerehab earlier, and I quickly make a point there. It's hard to do stroke rehab remotely because you want, you want you have to put your hands on them to either put a device on, get the electrodes in the right spot, maybe you want to stretch the shoulder, maybe they have some pain. On the hands-off therapist, but there are times you're gonna need to physically be there to put an apparatus on, whether fitting them with an orthotic like a disable flex to get your extension assist, and then let them go. The key is letting them go so they can do their movements. How realistic is doing activity-based therapy virtually? You know, clearly you need some equipment. Is that successful, or does it have to be more of a hybrid, which is during a trainer that person comes to visit and can get them to purchase some equipment, then they go to a local gym, and it's a whole process, or can you just sign someone up for twelve visits, and they can be in their living room, and do, I mean, they can probably do a modified activity-based therapy. Maybe talk two seconds about modified. What's your thoughts on virtual? Does it even exist, and what would that even look like?

Darci Pernoud (51:56.546):
I think it exists. I think it totally depends on the person and how much they're going to benefit from it. If distance is going to be a limiting factor, I think the amazing thing about technology and telehealth is you can access the right healthcare professional to give you guidance and help facilitate where your goals are and how to address them. It would not be my first pick. I'm a very hands-on therapist, so I think you just have to look at what can you pick up and can you move somewhere to access the healthcare professional? Can you afford housing, a caregiver if you need it to have the right care to facilitate your goals, or is telehealth going to be a better option? So I think the good thing is there's options, and then kind of look where is it going to fit for that person. If someone really can't get the movement that you want them to do, you need to have someone who's going to be able to verbally guide you and instruct. So it comes down to the person on each end of their abilities to be able to follow instruction, and I'm sure you're familiar, Henry, with neuro reeducation. Sometimes your body doesn't want to move like you want it to move, so you need someone to be hands-on, facilitate, feel the movement, connect to the movement, get the visual feedback - what's your body doing. A lot of people think they're moving a certain way, and they're not. So those will be limiting factors to a health option. I have some amazing lifelong athletes, people that were active as children, adults, and I can show them what to do, and they can do it. So I think it also depends on the person's ability and their body to connect to certain movements. So I think telehealth can be an option. It may not be a great option for everyone, but it's something to consider.

Henry Hoffman (53:45.2):
Yeah, absolutely. And a point of clarification, I am hands-off for stroke rehab, but I could certainly see why I need to be hands-on for spinal cord patients as much as possible. Wow, this was a lot of information you unpacked, Darci, and it's only Tuesday. Now I got to exercise 35 hours a week. So I got a lot going on. And by the way, I think I should just do activity-based therapy by myself because who doesn't want to weight bear, strengthen, functional task. I mean, think about occupational sitting disease. We're sitting, I'm sitting at this desk, and we already know if you sit for six to eight hours a day, it's like equivalent to smoking two packs of cigarettes. It's that bad. So you got to get up, you got to move. And clearly, that's some of the things that activity-based therapy is doing. So last parting words from Darci. This was a lot of information. Hopefully, the therapists and the patients and the families have found this helpful. If people want to learn more about activity-based therapy, as well as learn more about you, what can you, where can you point them to?

Darci Pernoud (54:53.886):
Yeah, we have a website, backtoindependencerehab.com. We also call ourselves BTI rehab because that's less of a mouthful to spell out, so you can find us at BTIRehab.com. We also have a Facebook and Instagram page. We try to post different videos and images of what we do with clients in the gym. And I spoke of my husband, and he said, you know what, he knows what we do, but he's like, I don't always understand that these are always people that may be a majority of the time in a wheelchair. So looking at it, I want people to understand it's not just doing gym workouts. All of these clients have had some type of neurological injury, disease, something that's affected them, but we're pushing them hard to be able to create that change and challenge their body to make neuroplastic changes. So you can find us online, and all of our contact info should be found on an internet search.

Henry Hoffman (55:50.72):
Awesome. Well, you're a wonderful OT. Proud to know you, and definitely going to recommend folks your way that are needing your services. Thank you so much for joining the plateau podcast today. I'm sure the audience is going to eat this up, so thank you all right. Thanks, guys, until next time, have a good week.

Darci Pernoud (55:55.166):
Thanks, Henry.

Darci Pernoud (56:05.186):
Thanks for having me.

Darci Pernoud (56:09.286):
Thank you.

Henry Hoffman (56:13.94):
All right, perfect.