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Interviewer: According to the Centers for Disease Control and Prevention, more than two million Americans experience a brain injury each year. While some of these injuries result in relatively short-term impact on a day-to-day function, others can lead to long-term challenges or even a permanent disability.

Today, we'll be speaking with Zoe, a young woman who experienced a traumatic brain injury after an accident and the long journey of her recovery and the daily experience of overcoming the long-term challenges of life after an accident like this.

And to help us better understand the medical side of a traumatic brain injury, joining us is associate professor of neurosurgery at University of Utah Health, Dr. Ramesh Grandhi, the doctor who helped stabilize Zoe after her accident.

Zoe, why don't we start with what kind of led to your traumatic brain injury in the first place? What exactly happened?

Zoe: Yeah. Well, interesting story. I had just moved to Salt Lake City in August of 2020, and this occurred . . . or rather, my accident occurred December 5, 2020. So I had just shy of five months in the state, really.

So I hadn't experienced a lot, but a friend and I really wanted to ski together. I bought a season pass at Alta, was really excited to get up there. And it was day one, in fact, of the ski season that this happened. So really did not get any other skiing in, obviously, but this was day one.

Yeah, I mean, I don't remember a whole lot about the day itself. I have spotty memories of the drive up to Alta, getting to Alta. I actually have some spotty memories of being on the lift up to the first run. After that, I don't remember anything. I remember a bit of skiing, and that's really about it in terms of the day.

And then subsequently, upon waking up, I have absolutely no memory of the remainder of December. My memory is really spotty from about Thanksgiving up to December 5th. So Thanksgiving, I would say, is the last clear memory that I have and everything else is kind of spotty. It appears in my head almost as if I made it all up.

I've had to ask a lot of people, especially family members, "Did this really happen? Can you describe this thing to me or remind me who was at Thanksgiving again?" I never would have guessed something like this when I first started skiing with my dad 10-plus years ago.

And I was maybe 500 yards behind several of my friends, so I was alone during the actual collision. I ran into this group of trees that sat right in the middle of the run that I was on at Alta.

In this tree well, it was icy. I slipped on the snow evidently and collided with some trees in the tree well. What I would assume happened at that point is I was knocked unconscious by the collision and then fell and was hidden by this tree well and this group of trees. And then because I wasn't found until about four hours later, I had become buried or covered by snow by people skiing by, obviously.

Interviewer: Sure. So you're spotty memory-wise from Thanksgiving to . . . When did you start to remember things again?

Zoe: Right. So really, my lucidity, I would say, started to come back right around January 6th, 7th, 8th, right in that area. This is purely what I was told, is that I woke up somewhere mid to end of December. The rest of December went by. I was then transferred to a long-term care facility outside of Salt Lake City. And right around that, again, 6th, 7th, 8th of January is when I have memories that I'm able to go back on and say, "Oh, yeah, that was right in the beginning of January." Before that, though, I have no memories.

Interviewer: Wow. So, Dr. Grandhi, I want to go to you at this point. When did Zoe come into the care of you, your team, the University of Utah Hospital?

Dr. Grandhi: As I recall it, I didn't find out about Zoe until Sunday morning first thing. I know that she presented as a transfer to our hospital, and clearly, she had traumatic injuries. And the first principle of what we do is just stabilize the patient. The trauma surgeons and a number of other services are super important and are our partners in making sure that a patient is appropriately stabilized.

And then my partner was actually on call and received the first call about her. He then got in touch with me. We do a really nice job within our department about communicating about patients with traumatic brain injuries, and specifically, patients with severe traumatic brain injuries.

So I remember that Sunday morning very well because she was downstairs in our surgical ICU. I went and saw her and just looked at her images, and then went out and talked to her dad who was sitting in the waiting room all by himself.

I remember the exact seat he was seated in early on that Sunday morning, probably around 8:00 a.m. or 9:00 a.m. And he was just by himself. I just walked up to him and told him what my assessment was of the situation based on looking at her head CT and things like that.

And at that point, it was just me trying to tell him that we're going to do our best to take care of her, that she presented with what we call a severe traumatic brain injury, and what the principles of managing patients with that are, and also, honestly, giving him hope.

Interviewer: When we talk about traumatic brain injury, is it a lot of skiing injuries, sports injuries? What is the most common type of traumatic brain injury?

Dr. Grandhi: Traumatic brain injury is a significant burden in the Western world. It's the number one cause of death amongst young folks in the Western world.

Traumatic brain injury falls into three buckets: severe traumatic brain injury, moderate traumatic brain injury, and mild traumatic brain injury. And oftentimes, patients with mild traumatic brain injuries don't even come into the hospital. We call it a concussion. And oftentimes, a patient may stay at home after hitting their head, or being involved in a sports injury, or a motor vehicle collision, or falling and hitting their head.

The burden of traumatic brain injury in the United States today is about 2.5 million patients per year. So many patients don't even come into the hospital. Many patients are discharged from the ER.

Interviewer: Zoe and her accident, of those three buckets, what did hers fall into, and why?

Dr. Grandhi: Zoe had a severe traumatic brain injury. And the way we diagnose severe traumatic brain injury is quite simple. We just gauge it in terms of what their neurologic exam is when they come in. So are they able to open their eyes? Are they able to speak? Are they able to follow commands?

Interviewer: And Zoe was unable to do those things?

Dr. Grandhi: Correct.

Interviewer: Wow. Zoe, do you remember any pieces or parts of the story? How did you feel when you were first, I guess, coming out of it?

Zoe: Yeah. Again, like I said before, the first memories I have are really in the long-term care facility that I was transferred to after leaving The U. I think it was sort of a slow realization.

And then since then, I would say I've noticed things that are sort of side effects or fallouts from having a severe traumatic brain injury: getting frustrated much more easily, being able to jump to anger much more easily, having very little patience, amongst many others. So it was very much a slow realization and slow rollout. And then still to this day, new things come up.

So it was much more slow. It wasn't similar to if you broke your arm and someone said, "Oh, you broke your arm," and then they casted it up right then and there. It was much more prolonged than that and slow realization.

My initial thought, honestly, was because I was awake and lucid and conscious, "Oh, my brain is fine. Well, everything is good. I can speak. I can see. I can hear. I can eat. I have my motor functions." And so, initially, I didn't think too much about the effects on my brain, and that did come up much later and still continues to this day.

Interviewer: Dr. Grandhi, when it comes to treatment of a case like Zoe, what was done to help Zoe get from the accident to where she was stabilized and in, I guess, a longer-term facility to kind of monitor her?

Dr. Grandhi: Well, I think we need to kind of dial it back a little bit to understand the management principles of patients with severe traumatic brain injury. And it starts, honestly, in the pre-hospital setting in which those who are on the first line understand how to manage a person, particularly with a pathology as significant as severe traumatic brain injury.

So first things first, getting the patient stabilized in the field, making sure that people are very cognizant of taking care of the patient, immobilizing their neck. Again, we don't know if a patient has had an injury to the cervical spine. Zoe clearly hit trees, so she could have very easily had damage to her neck, to the bones of her neck, spinal cord, etc. So getting a patient stabilized at the point of injury, then making a decision of where the patient goes.

There is data to show improved outcomes in patients who have a severe traumatic brain injury who are taken to Level 1 trauma centers. So understanding where to send the patient when the patient comes in.

Again, we have a huge bevy of services that are there in the ER, in the trauma bay awaiting a patient, because there's pre-hospital notification. And so if a person is coming in as a Level 1 trauma to a Level 1 trauma center, we do have orthopedics right there. Neurosurgery is right there in the trauma bay. Obviously, trauma surgery, the ER doctors, a number of different services and specialties are there awaiting the patient.

Airway management is important, worrying about circulation, blood pressure, ensuring that there's no intra-abdominal injuries. After that, there are a lot of scans that are ordered inclusive of CT scans that are literally performed head to toe to make sure that we're not missing significant injuries that need actionable treatment, such as rushing a patient up to the operating room for an intra-abdominal injury.

That being said, once that is done and there's nothing imminent that needs to be treated emergently, the patient is generally taken up to the ICU. And in Zoe's case and a patient with a severe traumatic brain injury, they're ventilated, and then there's a lot of management that occurs then predicated on blood pressure management, good oxygenation for the patient.

And for patients with severe traumatic brain injury, when we know a patient has a severe traumatic brain injury, we place particular monitors in the patient's brain because we're obligated to make sure that we have good control of intracranial pressure. So we want to make sure that we know what a patient's intracranial pressure is, and we need to keep it below certain thresholds.

We clearly know what the patient's brain perfusion is in terms of what's the state of blood pressure to brain tissue. So we monitor a patient's systemic blood pressure, their body's blood pressure well, and have to get the brain perfusion pressure in a particular range.

That's a quick summation of the management principles of a patient with severe traumatic brain injury. Not every patient requires a big-time operation and removing part of the skull or sucking out blood, but when we do place brain monitors, we do have to drill a small hole in people's skull to place these monitors. We have to remember that brain injury comes in many different flavors, even severe traumatic brain injuries.

Interviewer: So you just keep an eye on all the things that are going on with your monitors and everything to see whether or not there's injury?

Dr. Gandhi: Absolutely. And we use CAT scans liberally to help us understand more about the evolution of the brain injury. Zoe did have blood in her head, no question about it, but we did not feel that this blood would require us to take her to the operating room for an emergent surgery to remove the blood.

Interviewer: It's my understanding that Zoe then was a part of a study dealing with neuromonitoring. So for someone who's listening right now, what exactly is neuromonitoring, and why is it so important that we do research with it?

Dr. Gandhi: Whenever someone is classified as having a severe traumatic brain injury, we know from years of research and guidelines and a lot of work from really experienced, savvy, thoughtful leaders in the field that patients should get particular things monitored.

As I had said, we want to get invasive arterial blood pressure monitoring so that we can get a good second-to-second, moment-to-moment gauge of what a person's blood pressure is not using one of those expandable blood pressure cuffs. So this is something that allows us to know on a moment-to-moment basis what a person's blood pressure is doing.

We also ensure that the patient has adequate ventilation using a breathing tube. We study their intracranial pressure via an intracranial pressure monitor.

Finally, one of the things that has been important recently in the care of patients with severe traumatic brain injuries is the concept of whether brain tissue oxygenation can help guide therapy for a patient with a severe traumatic brain injury.

So historically, many university centers across the world, many experienced Level 1trauma centers have been using brain tissue oxygenation monitoring, basically almost as though you had a pulse oximeter of brain tissue. Many folks around the world have used brain tissue oxygenation monitoring as another way to help manage their patients with severe traumatic brain injury.

Here at the University of Utah and also many sites throughout this country and across the world in a separate study have decided to do a randomized controlled trial on this and understanding whether it will bear out in a huge patient population of improving outcomes. And Zoe was enrolled in that trial, and the trial is called BOOST-3.

Interviewer: So what exactly is BOOST-3 looking to do?

Dr. Grandhi: What we're looking for in the BOOST-3 trial is to determine whether using brain tissue oxygenation monitoring in the care of patients with severe traumatic brain injury improves outcomes at six months.

This is over and above using traditional monitoring techniques such as intracranial pressure monitoring and cerebral perfusion pressure monitoring that are already used commonly as part of guidelines that have been established in taking care of patients like Zoe.

Interviewer: So, Zoe, we've been talking a lot about kind of the medical side of things. I want to go back to you. What was it like when you first had Dr. Grandhi or any of the other specialists kind of explain the condition to you and what was going to be expected moving forward?

Zoe: I think in all the research that I've done and the people around me have done and then my discussions with Dr. Grandhi initially and shortly thereafter, and from what I gather from all of that, is that it's largely unexpected. The results and the things that come of it are known and yet unknown, right? It's things that they know come from a severe traumatic brain injury and then there are things that you don't really know will come up until they come up and until you experience them.

So from what I've been able to dissect from this injury is kind of pick apart, or notice rather, the moments in my own life where the thought comes into my head saying, "No, this isn't really you. This isn't really the Zoe that has made it to this point." "This is the TBI speaking," I guess, for lack of a better term or phrase.

An example would be if I'm feeling really, really agitated one day or even one hour and then the next hour I'm back to feeling normal again. So it's really quite a rollercoaster, I would say.

Interviewer: But what did it feel like to kind of hear that? I mean, as an outsider, as someone who's never experienced this kind of thing, that sounds kind of scary to me.

Zoe: Well, I would say more jarring than frightening. As the patient or as the person with a severe TBI, you don't necessarily . . . or I didn't, at least, necessarily believe the things that were being told to me. Not that I would think, "Oh, Dr. Grandhi is a liar," but I didn't necessarily believe it until those things started to show up for me in my own life later on and as time went on.

So months later, it's coming up on a year, so a full year later, I notice things that they told me initially that I might feel or that may come up. And at the time, I was thinking, "Well, I feel fine now, so we're good. We're all good here. Have a nice day." So it wasn't until up to this point that I think, "Oh, okay. I see what they mean by this progression and regression of things that may come and go," and things that I might feel that I didn't think I would feel at the time.

So it was definitely helpful to hear that then, and thinking about it now, "Oh, okay. They were right all along. They know what they're talking about."

Dr. Grandhi: I think it's really important to understand that while we as physicians, particularly as neurosurgeons who take care of patients with severe traumatic brain injury, I look at Zoe, and we raise our hands and we run a victory lap saying that she is a success.

And first things first is just in the acute setting, there's more research coming out that shows that if you are able to get a patient through the acute brain injury setting and manage them correctly and take care of them, we should not be nihilistic about where they will be one year later.

There's new research using big data sets that show that patients such as Zoe who come in with severe traumatic brain injury can have favorable outcomes at one year. Part of this data set also shows that 20% of patients can perhaps have no disability at one year.

But that being said, Zoe's experience alludes to the fact that we cannot forget about our patients. They still sometimes experience some sequalae that are hard to just kind of put a finger on. Like Zoe talks about, just agitation, maybe irritability, maybe memory issues.

So this is a process, an evolution, and it's really important for us to be able to support our patients, get them the correct resources, and really kind of steer them and continue to shepherd them through the process, which may take many more years.

Again, the concept of neuromonitoring for patients with traumatic brain injury only pertains to patients with severe traumatic brain injury, patients who are in a coma, patients who come into a hospital in a comatose state.

And I think we're going to learn a lot through this study as well as over the next years of how to really target various treatment thresholds and really tailor a patient's care to perhaps the type of pathology that they're coming in with.

So this is really important to patients with severe traumatic brain injury, but for the audience out there who is interested in traumatic brain injury in general, because most of the patients who experience a traumatic brain injury don't come in like Zoe in a coma, we're learning a lot about traumatic brain injury in general.

We're learning that there are so many different components to living with a traumatic brain injury. We are understanding that there are perhaps new ways of diagnosing patients and understanding what's called biomarkers and their role and understanding whether they're different symptoms, sequalae, or phenotypes that people experience after a traumatic brain injury.

Finally, it's really, again, very important to support our patients because it's not just the acute recovery stage. One of the people who trained me told me the biggest misnomer in patients who come in with mild traumatic brain injury, which is sometimes called a concussion, is there's nothing mild about it if you experience headaches two months after the fact, or if you have problems with staring at your computer screen if you're a person who works on computers and have eye strain after that, or have problems with balance. There's nothing mild about it.

And now the question is, "How can we support our patients better and get them the needed resources they need to get back on their feet and get their life back in order?"

Interviewer: So, Zoe, you're 25 now. It's been a year since the initial incident. How have you felt along the process? And how do you mark your own success and, I guess, healing from this particular incident?

Zoe: It actually took quite a while for me to recognize my own success, my own progress. It's really been just recently, actually, that I've been able to think to myself, "Oh, okay. You can actually do that thing now that you weren't able to do three months ago, four months ago."

It's more so just the ability to recognize those things. And I wasn't able to recognize those things previously. So it's been really difficult to measure my own progress based on what that looks like or what that has looked like in the past year.

I mean, highs, overall, I would say the ability to remember. Honestly, my short-term memory was completely restarted, completely obliterated in the beginning, and I wasn't able to hold a memory for several minutes. I would forget the thing before. So my working memory and my short-term memory have improved significantly.

Luckily, nothing really ever happened to my long-term memory, so I was able to remember years past. I could tell you where exactly I was and who I was with, especially right in the early beginning.

One of the most difficult things, but probably does not top the list, that I've experienced from the fallout, if you will, is the changing of relationships in my life. Friendships and various other things that have been really difficult to not only maintain, but to offer my lived experience as it is and as I see it and as I experience it. It's extremely difficult to explain the mindset that I have and where my brain is at on any given day.

And luckily, some of them have had extreme understanding and extreme patience with me. And that's really all I ask of the people in my life now, is, "Please be patient with me and my progress and the things you likely don't see on a day-to-day basis." On hour-by-hour basis even.

I've told the people closest to me, "This could be a years-long journey process, if you will, for my mental state, so the patience is so appreciated."

And then the highs . . . To be quite frank, I think the highs for me personally, they've been recognized by the people in my life for a while now, for the last year, but I personally have not been able to see or really process or digest those highs.

So it's really just been very recent in the last few months that I've been able to look at myself and say, "Wow, you can do that now after being completely immobile for nearly two months," or, "Wow, you can move that way again," or, "You can stretch that way again."

I used to and would eventually like to get back to very, very involved in hot yoga. I used to do hot yoga frequently. And before that, I was a gymnast and a dancer. So in the beginning, it was very excruciating for me to, say, not even touch my toes. And that was a huge blow more so to my ego than anything else, but a huge blow nonetheless.

And so I think the highs now are being able to recognize that, "Hey, I am able to touch my toes," and I stretch, and I exercise, and I do all these things every single day to better myself.

Initially, it was very much like, "Wow, you aren't able to do this? What happened?" And then it was up to a few months ago that I started telling myself, "No, you have to be much more patient to yourself, much more kind to yourself," than the completely and constant berating myself for why I'm not able to do something, or accomplish something, or say something in the way that I want to say it, etc.

Dr. Gandhi: I think that was just incredible to hear. As I said before, we run laps when we look at Zoe, but to hear her personal experience and understand that this is not over for her and understand what she goes through and also understand what defines us is the little things that make us who we are. Zoe touching her toes, doing hot yoga, it's incredible. It makes us really take a step back and understand this as a human experience, understand this as a personal experience.

The privilege of being able to be involved in Zoe's care and the care of others is not lost when you hear these things. The story of Zoe and patients like Zoe is not done in December 2021. It's an experience that she's going to live through and get through for the rest of her life.

She's sitting 10 feet away from me right now and her mom is right here as well. She's going to get there, and we just have to do everything we can to support her. She's just incredible. And to just hear Zoe, hear her voice come through in this experience is just profound for us. As many times as I've seen Zoe, I've never known these little things about Zoe, and it's amazing to hear.

Interviewer: To find out more about traumatic brain injury as well as the services offered through the brain injury program at the Craig H. Neilsen Rehabilitation Hospital, visit the link in the episode description.

Interviewer: According to the Centers for Disease Control and Prevention, more than two million Americans experience a brain injury each year. While some of these injuries result in relatively short-term impact on a day-to-day function, others can lead to long-term challenges or even a permanent disability.

Today, we'll be speaking with Zoe, a young woman who experienced a traumatic brain injury after an accident and the long journey of her recovery and the daily experience of overcoming the long-term challenges of life after an accident like this.

And to help us better understand the medical side of a traumatic brain injury, joining us is associate professor of neurosurgery at University of Utah Health, Dr. Ramesh Grandhi, the doctor who helped stabilize Zoe after her accident.

Zoe, why don't we start with what kind of led to your traumatic brain injury in the first place? What exactly happened?

Zoe: Yeah. Well, interesting story. I had just moved to Salt Lake City in August of 2020, and this occurred . . . or rather, my accident occurred December 5, 2020. So I had just shy of five months in the state, really.

So I hadn't experienced a lot, but a friend and I really wanted to ski together. I bought a season pass at Alta, was really excited to get up there. And it was day one, in fact, of the ski season that this happened. So really did not get any other skiing in, obviously, but this was day one.

Yeah, I mean, I don't remember a whole lot about the day itself. I have spotty memories of the drive up to Alta, getting to Alta. I actually have some spotty memories of being on the lift up to the first run. After that, I don't remember anything. I remember a bit of skiing, and that's really about it in terms of the day.

And then subsequently, upon waking up, I have absolutely no memory of the remainder of December. My memory is really spotty from about Thanksgiving up to December 5th. So Thanksgiving, I would say, is the last clear memory that I have and everything else is kind of spotty. It appears in my head almost as if I made it all up.

I've had to ask a lot of people, especially family members, "Did this really happen? Can you describe this thing to me or remind me who was at Thanksgiving again?" I never would have guessed something like this when I first started skiing with my dad 10-plus years ago.

And I was maybe 500 yards behind several of my friends, so I was alone during the actual collision. I ran into this group of trees that sat right in the middle of the run that I was on at Alta.

In this tree well, it was icy. I slipped on the snow evidently and collided with some trees in the tree well. What I would assume happened at that point is I was knocked unconscious by the collision and then fell and was hidden by this tree well and this group of trees. And then because I wasn't found until about four hours later, I had become buried or covered by snow by people skiing by, obviously.

Interviewer: Sure. So you're spotty memory-wise from Thanksgiving to . . . When did you start to remember things again?

Zoe: Right. So really, my lucidity, I would say, started to come back right around January 6th, 7th, 8th, right in that area. This is purely what I was told, is that I woke up somewhere mid to end of December. The rest of December went by. I was then transferred to a long-term care facility outside of Salt Lake City. And right around that, again, 6th, 7th, 8th of January is when I have memories that I'm able to go back on and say, "Oh, yeah, that was right in the beginning of January." Before that, though, I have no memories.

Interviewer: Wow. So, Dr. Grandhi, I want to go to you at this point. When did Zoe come into the care of you, your team, the University of Utah Hospital?

Dr. Grandhi: As I recall it, I didn't find out about Zoe until Sunday morning first thing. I know that she presented as a transfer to our hospital, and clearly, she had traumatic injuries. And the first principle of what we do is just stabilize the patient. The trauma surgeons and a number of other services are super important and are our partners in making sure that a patient is appropriately stabilized.

And then my partner was actually on call and received the first call about her. He then got in touch with me. We do a really nice job within our department about communicating about patients with traumatic brain injuries, and specifically, patients with severe traumatic brain injuries.

So I remember that Sunday morning very well because she was downstairs in our surgical ICU. I went and saw her and just looked at her images, and then went out and talked to her dad who was sitting in the waiting room all by himself.

I remember the exact seat he was seated in early on that Sunday morning, probably around 8:00 a.m. or 9:00 a.m. And he was just by himself. I just walked up to him and told him what my assessment was of the situation based on looking at her head CT and things like that.

And at that point, it was just me trying to tell him that we're going to do our best to take care of her, that she presented with what we call a severe traumatic brain injury, and what the principles of managing patients with that are, and also, honestly, giving him hope.

Interviewer: When we talk about traumatic brain injury, is it a lot of skiing injuries, sports injuries? What is the most common type of traumatic brain injury?

Dr. Grandhi: Traumatic brain injury is a significant burden in the Western world. It's the number one cause of death amongst young folks in the Western world.

Traumatic brain injury falls into three buckets: severe traumatic brain injury, moderate traumatic brain injury, and mild traumatic brain injury. And oftentimes, patients with mild traumatic brain injuries don't even come into the hospital. We call it a concussion. And oftentimes, a patient may stay at home after hitting their head, or being involved in a sports injury, or a motor vehicle collision, or falling and hitting their head.

The burden of traumatic brain injury in the United States today is about 2.5 million patients per year. So many patients don't even come into the hospital. Many patients are discharged from the ER.

Interviewer: Zoe and her accident, of those three buckets, what did hers fall into, and why?

Dr. Grandhi: Zoe had a severe traumatic brain injury. And the way we diagnose severe traumatic brain injury is quite simple. We just gauge it in terms of what their neurologic exam is when they come in. So are they able to open their eyes? Are they able to speak? Are they able to follow commands?

Interviewer: And Zoe was unable to do those things?

Dr. Grandhi: Correct.

Interviewer: Wow. Zoe, do you remember any pieces or parts of the story? How did you feel when you were first, I guess, coming out of it?

Zoe: Yeah. Again, like I said before, the first memories I have are really in the long-term care facility that I was transferred to after leaving The U. I think it was sort of a slow realization.

And then since then, I would say I've noticed things that are sort of side effects or fallouts from having a severe traumatic brain injury: getting frustrated much more easily, being able to jump to anger much more easily, having very little patience, amongst many others. So it was very much a slow realization and slow rollout. And then still to this day, new things come up.

So it was much more slow. It wasn't similar to if you broke your arm and someone said, "Oh, you broke your arm," and then they casted it up right then and there. It was much more prolonged than that and slow realization.

My initial thought, honestly, was because I was awake and lucid and conscious, "Oh, my brain is fine. Well, everything is good. I can speak. I can see. I can hear. I can eat. I have my motor functions." And so, initially, I didn't think too much about the effects on my brain, and that did come up much later and still continues to this day.

Interviewer: Dr. Grandhi, when it comes to treatment of a case like Zoe, what was done to help Zoe get from the accident to where she was stabilized and in, I guess, a longer-term facility to kind of monitor her?

Dr. Grandhi: Well, I think we need to kind of dial it back a little bit to understand the management principles of patients with severe traumatic brain injury. And it starts, honestly, in the pre-hospital setting in which those who are on the first line understand how to manage a person, particularly with a pathology as significant as severe traumatic brain injury.

So first things first, getting the patient stabilized in the field, making sure that people are very cognizant of taking care of the patient, immobilizing their neck. Again, we don't know if a patient has had an injury to the cervical spine. Zoe clearly hit trees, so she could have very easily had damage to her neck, to the bones of her neck, spinal cord, etc. So getting a patient stabilized at the point of injury, then making a decision of where the patient goes.

There is data to show improved outcomes in patients who have a severe traumatic brain injury who are taken to Level 1 trauma centers. So understanding where to send the patient when the patient comes in.

Again, we have a huge bevy of services that are there in the ER, in the trauma bay awaiting a patient, because there's pre-hospital notification. And so if a person is coming in as a Level 1 trauma to a Level 1 trauma center, we do have orthopedics right there. Neurosurgery is right there in the trauma bay. Obviously, trauma surgery, the ER doctors, a number of different services and specialties are there awaiting the patient.

Airway management is important, worrying about circulation, blood pressure, ensuring that there's no intra-abdominal injuries. After that, there are a lot of scans that are ordered inclusive of CT scans that are literally performed head to toe to make sure that we're not missing significant injuries that need actionable treatment, such as rushing a patient up to the operating room for an intra-abdominal injury.

That being said, once that is done and there's nothing imminent that needs to be treated emergently, the patient is generally taken up to the ICU. And in Zoe's case and a patient with a severe traumatic brain injury, they're ventilated, and then there's a lot of management that occurs then predicated on blood pressure management, good oxygenation for the patient.

And for patients with severe traumatic brain injury, when we know a patient has a severe traumatic brain injury, we place particular monitors in the patient's brain because we're obligated to make sure that we have good control of intracranial pressure. So we want to make sure that we know what a patient's intracranial pressure is, and we need to keep it below certain thresholds.

We clearly know what the patient's brain perfusion is in terms of what's the state of blood pressure to brain tissue. So we monitor a patient's systemic blood pressure, their body's blood pressure well, and have to get the brain perfusion pressure in a particular range.

That's a quick summation of the management principles of a patient with severe traumatic brain injury. Not every patient requires a big-time operation and removing part of the skull or sucking out blood, but when we do place brain monitors, we do have to drill a small hole in people's skull to place these monitors. We have to remember that brain injury comes in many different flavors, even severe traumatic brain injuries.

Interviewer: So you just keep an eye on all the things that are going on with your monitors and everything to see whether or not there's injury?

Dr. Gandhi: Absolutely. And we use CAT scans liberally to help us understand more about the evolution of the brain injury. Zoe did have blood in her head, no question about it, but we did not feel that this blood would require us to take her to the operating room for an emergent surgery to remove the blood.

Interviewer: It's my understanding that Zoe then was a part of a study dealing with neuromonitoring. So for someone who's listening right now, what exactly is neuromonitoring, and why is it so important that we do research with it?

Dr. Gandhi: Whenever someone is classified as having a severe traumatic brain injury, we know from years of research and guidelines and a lot of work from really experienced, savvy, thoughtful leaders in the field that patients should get particular things monitored.

As I had said, we want to get invasive arterial blood pressure monitoring so that we can get a good second-to-second, moment-to-moment gauge of what a person's blood pressure is not using one of those expandable blood pressure cuffs. So this is something that allows us to know on a moment-to-moment basis what a person's blood pressure is doing.

We also ensure that the patient has adequate ventilation using a breathing tube. We study their intracranial pressure via an intracranial pressure monitor.

Finally, one of the things that has been important recently in the care of patients with severe traumatic brain injuries is the concept of whether brain tissue oxygenation can help guide therapy for a patient with a severe traumatic brain injury.

So historically, many university centers across the world, many experienced Level 1trauma centers have been using brain tissue oxygenation monitoring, basically almost as though you had a pulse oximeter of brain tissue. Many folks around the world have used brain tissue oxygenation monitoring as another way to help manage their patients with severe traumatic brain injury.

Here at the University of Utah and also many sites throughout this country and across the world in a separate study have decided to do a randomized controlled trial on this and understanding whether it will bear out in a huge patient population of improving outcomes. And Zoe was enrolled in that trial, and the trial is called BOOST-3.

Interviewer: So what exactly is BOOST-3 looking to do?

Dr. Grandhi: What we're looking for in the BOOST-3 trial is to determine whether using brain tissue oxygenation monitoring in the care of patients with severe traumatic brain injury improves outcomes at six months.

This is over and above using traditional monitoring techniques such as intracranial pressure monitoring and cerebral perfusion pressure monitoring that are already used commonly as part of guidelines that have been established in taking care of patients like Zoe.

Interviewer: So, Zoe, we've been talking a lot about kind of the medical side of things. I want to go back to you. What was it like when you first had Dr. Grandhi or any of the other specialists kind of explain the condition to you and what was going to be expected moving forward?

Zoe: I think in all the research that I've done and the people around me have done and then my discussions with Dr. Grandhi initially and shortly thereafter, and from what I gather from all of that, is that it's largely unexpected. The results and the things that come of it are known and yet unknown, right? It's things that they know come from a severe traumatic brain injury and then there are things that you don't really know will come up until they come up and until you experience them.

So from what I've been able to dissect from this injury is kind of pick apart, or notice rather, the moments in my own life where the thought comes into my head saying, "No, this isn't really you. This isn't really the Zoe that has made it to this point." "This is the TBI speaking," I guess, for lack of a better term or phrase.

An example would be if I'm feeling really, really agitated one day or even one hour and then the next hour I'm back to feeling normal again. So it's really quite a rollercoaster, I would say.

Interviewer: But what did it feel like to kind of hear that? I mean, as an outsider, as someone who's never experienced this kind of thing, that sounds kind of scary to me.

Zoe: Well, I would say more jarring than frightening. As the patient or as the person with a severe TBI, you don't necessarily . . . or I didn't, at least, necessarily believe the things that were being told to me. Not that I would think, "Oh, Dr. Grandhi is a liar," but I didn't necessarily believe it until those things started to show up for me in my own life later on and as time went on.

So months later, it's coming up on a year, so a full year later, I notice things that they told me initially that I might feel or that may come up. And at the time, I was thinking, "Well, I feel fine now, so we're good. We're all good here. Have a nice day." So it wasn't until up to this point that I think, "Oh, okay. I see what they mean by this progression and regression of things that may come and go," and things that I might feel that I didn't think I would feel at the time.

So it was definitely helpful to hear that then, and thinking about it now, "Oh, okay. They were right all along. They know what they're talking about."

Dr. Grandhi: I think it's really important to understand that while we as physicians, particularly as neurosurgeons who take care of patients with severe traumatic brain injury, I look at Zoe, and we raise our hands and we run a victory lap saying that she is a success.

And first things first is just in the acute setting, there's more research coming out that shows that if you are able to get a patient through the acute brain injury setting and manage them correctly and take care of them, we should not be nihilistic about where they will be one year later.

There's new research using big data sets that show that patients such as Zoe who come in with severe traumatic brain injury can have favorable outcomes at one year. Part of this data set also shows that 20% of patients can perhaps have no disability at one year.

But that being said, Zoe's experience alludes to the fact that we cannot forget about our patients. They still sometimes experience some sequalae that are hard to just kind of put a finger on. Like Zoe talks about, just agitation, maybe irritability, maybe memory issues.

So this is a process, an evolution, and it's really important for us to be able to support our patients, get them the correct resources, and really kind of steer them and continue to shepherd them through the process, which may take many more years.

Again, the concept of neuromonitoring for patients with traumatic brain injury only pertains to patients with severe traumatic brain injury, patients who are in a coma, patients who come into a hospital in a comatose state.

And I think we're going to learn a lot through this study as well as over the next years of how to really target various treatment thresholds and really tailor a patient's care to perhaps the type of pathology that they're coming in with.

So this is really important to patients with severe traumatic brain injury, but for the audience out there who is interested in traumatic brain injury in general, because most of the patients who experience a traumatic brain injury don't come in like Zoe in a coma, we're learning a lot about traumatic brain injury in general.

We're learning that there are so many different components to living with a traumatic brain injury. We are understanding that there are perhaps new ways of diagnosing patients and understanding what's called biomarkers and their role and understanding whether they're different symptoms, sequalae, or phenotypes that people experience after a traumatic brain injury.

Finally, it's really, again, very important to support our patients because it's not just the acute recovery stage. One of the people who trained me told me the biggest misnomer in patients who come in with mild traumatic brain injury, which is sometimes called a concussion, is there's nothing mild about it if you experience headaches two months after the fact, or if you have problems with staring at your computer screen if you're a person who works on computers and have eye strain after that, or have problems with balance. There's nothing mild about it.

And now the question is, "How can we support our patients better and get them the needed resources they need to get back on their feet and get their life back in order?"

Interviewer: So, Zoe, you're 25 now. It's been a year since the initial incident. How have you felt along the process? And how do you mark your own success and, I guess, healing from this particular incident?

Zoe: It actually took quite a while for me to recognize my own success, my own progress. It's really been just recently, actually, that I've been able to think to myself, "Oh, okay. You can actually do that thing now that you weren't able to do three months ago, four months ago."

It's more so just the ability to recognize those things. And I wasn't able to recognize those things previously. So it's been really difficult to measure my own progress based on what that looks like or what that has looked like in the past year.

I mean, highs, overall, I would say the ability to remember. Honestly, my short-term memory was completely restarted, completely obliterated in the beginning, and I wasn't able to hold a memory for several minutes. I would forget the thing before. So my working memory and my short-term memory have improved significantly.

Luckily, nothing really ever happened to my long-term memory, so I was able to remember years past. I could tell you where exactly I was and who I was with, especially right in the early beginning.

One of the most difficult things, but probably does not top the list, that I've experienced from the fallout, if you will, is the changing of relationships in my life. Friendships and various other things that have been really difficult to not only maintain, but to offer my lived experience as it is and as I see it and as I experience it. It's extremely difficult to explain the mindset that I have and where my brain is at on any given day.

And luckily, some of them have had extreme understanding and extreme patience with me. And that's really all I ask of the people in my life now, is, "Please be patient with me and my progress and the things you likely don't see on a day-to-day basis." On hour-by-hour basis even.

I've told the people closest to me, "This could be a years-long journey process, if you will, for my mental state, so the patience is so appreciated."

And then the highs . . . To be quite frank, I think the highs for me personally, they've been recognized by the people in my life for a while now, for the last year, but I personally have not been able to see or really process or digest those highs.

So it's really just been very recent in the last few months that I've been able to look at myself and say, "Wow, you can do that now after being completely immobile for nearly two months," or, "Wow, you can move that way again," or, "You can stretch that way again."

I used to and would eventually like to get back to very, very involved in hot yoga. I used to do hot yoga frequently. And before that, I was a gymnast and a dancer. So in the beginning, it was very excruciating for me to, say, not even touch my toes. And that was a huge blow more so to my ego than anything else, but a huge blow nonetheless.

And so I think the highs now are being able to recognize that, "Hey, I am able to touch my toes," and I stretch, and I exercise, and I do all these things every single day to better myself.

Initially, it was very much like, "Wow, you aren't able to do this? What happened?" And then it was up to a few months ago that I started telling myself, "No, you have to be much more patient to yourself, much more kind to yourself," than the completely and constant berating myself for why I'm not able to do something, or accomplish something, or say something in the way that I want to say it, etc.

Dr. Gandhi: I think that was just incredible to hear. As I said before, we run laps when we look at Zoe, but to hear her personal experience and understand that this is not over for her and understand what she goes through and also understand what defines us is the little things that make us who we are. Zoe touching her toes, doing hot yoga, it's incredible. It makes us really take a step back and understand this as a human experience, understand this as a personal experience.

The privilege of being able to be involved in Zoe's care and the care of others is not lost when you hear these things. The story of Zoe and patients like Zoe is not done in December 2021. It's an experience that she's going to live through and get through for the rest of her life.

She's sitting 10 feet away from me right now and her mom is right here as well. She's going to get there, and we just have to do everything we can to support her. She's just incredible. And to just hear Zoe, hear her voice come through in this experience is just profound for us. As many times as I've seen Zoe, I've never known these little things about Zoe, and it's amazing to hear.

Interviewer: To find out more about traumatic brain injury as well as the services offered through the brain injury program at the Craig H. Neilsen Rehabilitation Hospital, visit the link in the episode description.

Interviewer: For patients who have lost a limb, phantom limb pain is a very real and very painful condition. And what exactly is it, and how is it treated?

Today, we're joined by two specialists who really treat this kind of condition. Dr. Colby Hansen is Director of Amputee Program at the Craig H. Neilsen Rehabilitation Hospital, and Spencer Thompson, a doctor of physical therapy and a board-certified specialist in neurological physical therapy specializing in the treatment of amputees.

Now, when we're starting to first kind of understand what phantom limb pain is, why don't we go with that question to begin with? Dr. Hansen, what exactly is phantom pain?

Dr. Hansen: Phantom pain is the perception of pain in a limb that has been amputated. For someone who has lost their leg, they may still feel painful sensations as if they are coming from the missing leg, the missing foot, the missing ankle, etc.

Interviewer: What exactly causes that? And correct me if I'm wrong, there are no nerves there to be creating that pain, are there?

Dr. Hansen: Well, it's a good question. Pain signals obviously have to originate from the site of pain, and then travel through the nervous system up to the spinal cord, and then up to the brain.

And in our brain, we have essentially a map that represents signals that pertain to every part of our body. And so, even though we may have lost a limb, we haven't lost that map in our brain. And so it can still perceive signals going to that part of the brain, which may be then perceived as coming from the missing part of the body.

In addition to that, the residual nerve in the remaining part of the limb that would have gone to that part of the limb is still there, and it can also send signals originating from there up to the brain which can be perceived as pain.

Interviewer: And how severe is this pain?

Dr. Hansen: It's very different from person to person. There are some people who may not feel pain, but they may feel the sensation of their limb. We call that phantom limb sensation. And then there are people who may have very severe phantom limb pain, and then there are going to be those who have perhaps only very mild or very intermittent phantom pain experiences.

Interviewer: I want to shift over to Spencer Thompson. Spencer, when you work with these patients, as an outsider, it's a little confusing, right? If someone has a twisted ankle, a physical therapist works on that twisted ankle, right? In this situation, it seems more that there is a neurological almost perceptual type pain happening. How exactly as a physical therapist do you help patients with this condition?

Dr. Thompson: I think understanding first how frequent it's happening for them gives understanding to how to best treat it. But one of the ways that I've found that's an easy way, that's not medication so it doesn't really have any systemic effects on the patient, is something called mirror therapy.

Like Dr. Hansen talked about, that pathway, that map is already in their brain, and sometimes that system gets ramped up where it feels like . . . sometimes people feel like their foot is twisted or contorted in a certain position, or they get those zaps of pain. Because that part of their leg is missing, what we want to do is train the brain in the sense that that part of their limb actually can move without pain. And the way we do that is with the mirror.

Interviewer: Is it a special mirror?

Dr. Thompson: No. I tell people to just buy a door mirror at Walmart for $15 or whatever. What you do is you put that mirror in between your legs. And you can do this with an arm as well, right? But you want to in a sense block your amputated side. And the mirror is going to show the reflection of the intact limb, whether that's the arm or whether that's the leg.

When I teach this to patients, what I tell them to do is their whole focus needs to be on the reflection of that intact leg, so that reflection is covering the leg, their amputated side. It looks like when they're looking over there . . . Say the left leg is amputated, I have the mirror on that left side, but it's showing the reflection of my right leg in that mirror, so when I'm looking in the mirror, it looks like that's actually my left leg, if that makes sense.

Interviewer: Oh, wow. Okay.

Dr. Thompson: Then, what I do, or what we tell patients . . . I work a lot with more lower limb, so I'll just describe what you do for lower limb, but it could be the same for upper limb type of thing.

I tell them, "I want you to keep your whole focus on that mirror, of that reflection of the intact limb, because we want to train your brain that is there, that it can move without pain." And then I teach them to move that ankle up and down, move it in and out, move it through circles in all directions, spell the alphabet with that ankle, kick the leg in and out, move the hip up and down, in and out. Any type of movement like that that can be moved through a pain-free movement, you're sending signals to the brain that that leg can move without pain.

Interviewer: The leg that is not there?

Dr. Thompson: The leg that is not there, but by looking at that reflection, you're sending input into the brain telling the brain that that leg can move without pain.

You can try it yourself, even if you're not an amputee. It's a little trippy at first. When the patients try it, they're like, "That feels so weird." But it's cool.

The biggest kicker with it is it takes consistency. Any time you're training the brain for something, it takes a lot of repetition, it takes consistency, it takes effort.

There's research out there. There are more research studies that need to be done to continue to prove efficacy of this, but protocols that I recommend is doing it for 5 or 10 minutes every day for 4 to 6 weeks.

And people that I've seen that have committed to that, there's a variety of results. Some people, it doesn't work. Some people, it does.

Some people feel like the edge of their phantom pain is taken off. We call it telescoping. The phantom pain may be on the distal end of their leg, in their foot. But sometimes that pain travels up, so it's not necessarily in their foot. It kind of travels up a little bit, and it's not as intense.

And some people, it helps out quite a bit. Or if they have an intense phantom pain session, they do it, and it just kinds of melts that pain away.

But biggest thing I would say is . . . I talk to people, and I'm like, "Have you tried mirror therapy?" They're like, "Yeah. I tried it, but it didn't work." When I kind of explore a little bit more, I find out that they haven't really done it on a consistent basis. They've tried it four or five times and it didn't really maybe have the effect they wanted, and so they stopped doing it.

And so my biggest thing was if you really want to see if it works, give it a shot, but be consistent with it. Shoot for every day. Put a timer on your phone for five minutes and be consistent with it and see what happens.

Interviewer: Now, Dr. Hansen, I guess I'm just a bit of a layperson here, but a $15 mirror that you can get at a big box store can significantly help with your pain. What exactly is happening, I guess, in the brain, in the nerves, with this therapy to have it work?

Dr. Hansen: Yeah, it's a good question. I think the simplest way to maybe try to conceptualize what's going on here is we have obviously five senses, right? Touch, smell, taste. Vision is one of our strongest senses and drives some of that pathway to that part of the brain represented by that missing limb. I think we can start to replace some of those pain signals going there with healthy, normal-feeling normal movement type of signals going there.

When we can have this visual input that's looking as if we're looking at our missing limb and that it's there, and if we can harness that input, which is very strong, to then do some of those things that Spencer was mentioning, move the phantom limb through the mirror in these different ways and not reconnect but sort of drive some of that pathway to that part of the brain represented by that missing limb, I think we can start to replace some of those pain signals going there with healthy, normal-feeling, normal movement type of signals going there.

Interviewer: Dr. Hansen, say there is a listener who either they themselves have an amputated limb or there's a loved one with an amputated limb, and they are dealing with some of these phantom sensations, phantom pain. Where do they start? Is it a general practitioner, is it a specialist, is it a physical therapist? If they need some help, where do they go?

Dr. Hansen: Good question. I would say the place to go is a high-level rehabilitation center that sees a lot of these complex types of patients. There may be some sort of small community rehab centers that don't see this very often. Usually at bigger centers, not just academic medical centers, although most academic medical centers should have the expertise. I am a rehabilitation physician, but not all rehabilitation physicians do amputee care. Sometimes orthopedic surgeons may do amputee care and do a very good job.

But I would say you start by looking for a large medical center that sees and treats complex rehabilitation types of patients, and then likely you'd be plugged into hopefully an amputee clinic at our institution run by myself as a rehabilitation doctor, but also that incorporates other expertise, like physical therapy or rehabilitation psychology, etc.

Interviewer: Spencer, for a patient who might be dealing with this kind of pain, what is something that you tell either them or their loved ones about what they can expect with working with a physical therapist to treat this condition?

Dr. Thompson: PTs, I think sometimes people think we're just mean people, that we just like to . . . We have this tagline that's "PT stands for pain and torture." I mean, yes, it does take work and sometimes pain, just like working through anything to improve, but we're here as huge advocates for you. We're on your team. PTs, our goal is to help improve your daily function and mobility and to get you back to living life to its fullest.

I would say for patients, give yourself some grace, some compassion. You've been through a lot. Your body has been through some significant changes. Just take a minute and breathe and just acknowledge all that you've been through and all the . . .

I tell all patients that I think the media sometimes does the amputee population a disservice in some aspects, because we see all these Olympians that are doing these amazing things, which is awesome that they are, but people sometimes have this expectation of, "Once I get my prosthetic limb, I'm going to be out running, doing all these amazing things." But the media doesn't also show the phantom limb pain that people experience or just the different trials that they do experience.

And so don't compare yourself to what's shown in the media. Just take it a day at a time. You're going to have good days, you're going to have days that are harder, but just be patient with yourself and just know that day-by-day, it's going to get better.

There is hope. There's help out there. There are great resources. We run an amputee support group here through the University of Utah that I run. There's a company called the Amputee Coalition. There's support out there. You're not alone in this. Talk to other people that get it, talk to professionals that understand, and I think just build your team around you that can help support you, and be patient and give yourself grace in this healing process.

Interviewer: For patients that have survived a stroke, there could be some worry that they might be at risk for a second stroke.

Dr. Steven Edgley is the Director of Stroke Rehabilitation at University of Utah Health. Dr. Edgley, what can people who have suffered a stroke do to minimize their chances of having another one?

Dr. Edgley: The most robust way to prevent another stroke or heart disease is to control hypertension. If we put these three things into three buckets, controlling hypertension, its own bucket. It's so important. The second bucket is controlling things like cholesterol or diabetes or if you have AFib, which is an abnormal heart rhythm. So these are other medical factors that lead to an increased risk of stroke and heart disease. And so I mentioned three, the three major factors, but everyone should go to their own and primary care physician to outline and identify their personal risk factors.

The third bucket is lifestyle factors. And we can break those into diet, exercise, and what I would call avoidance of smoking, drugs, controlling your alcohol intake, things like that. So lifestyle factors, away from the doctor's office, things that you would do at home.

Interviewer: How do you best control hypertension? Let's go back to that first bucket. Is that diet and exercise? Is that usually some sort of medication?

Dr. Edgley: Both. Usually, medication works best. But diet and exercise play a role in controlling high blood pressure.

Interviewer: Generally, does a stroke, a person who's had their first stroke, do they have the hypertension that would more likely need medications to control as opposed to lifestyle?

Dr. Edgley: Both are truly important. So, certainly, if you have had a stroke due to hypertension, you need to be on some medication for that.

Interviewer: And then the second bucket, cholesterol, diabetes, AFib, or other medical factors you'd be discussing with your primary care physician. Again, is that medication generally to help control those things, or we do know that diet and exercise, again, can control those factors as well?

Dr. Edgley: Yes. So I'm talking about going to your primary care physician and getting on the appropriate medications. And I think of that third bucket, so it does influence a lot of risk factors. But I think of it as its own bucket, diet, exercise, and avoidance of harmful behaviors and substances.

Interviewer: So when we get to that third bucket with lifestyle behaviors, is it more difficult for somebody who's had a stroke to manage and control their diet and exercise? Is that a little bit more of a challenge?

Dr. Edgley: It is. They may have physical impairments that make exercise really difficult. And they may have physical mobility issues that make activity more difficult and leading to the problem of obesity. And so every one of us is on either an upward spiral or a downward spiral. And it's very, very important to, if you are on a downward spiral, to break that cycle. And a downward spiral means, you know, inactivity, leads to overweight, leads to poor muscle strength, leads to more inactivity and down and down we go. And patients can break that cycle, but it's got to be a conscious choice and an active choice.

Interviewer: So in a lot of ways, what you do, which is help stroke survivors with physical rehabilitation, is really important in breaking that downward spiral. I mean, I can speak from my experience, as somebody who has not had a stroke, I know it all comes out of exercise for me. If I'm exercising, then I tend to eat better. I tend to sleep better. I tend to do all those things. And I don't know if that's the case for everybody, but I would imagine that that physical activity component is pretty important.

Dr. Edgley: Yes. And that's true. And what we really try to do, we can't be everywhere for everyone, but we can set them out on a positive course. And so the most important thing is to be on the right uphill track and not a downward track.

Interviewer: For a patient who has experienced any sort of traumatic brain injury, recovery can be something that might seem a little scary. How long is it going to last? What can you expect, etc.?

So to answer some of these questions, we are here with Dr. John Speed. He is a professor in the division of Physical Medicine and Rehabilitation and practices at the University of Utah Health. Now, Dr. Speed, when we talk about a traumatic brain injury, that's a pretty big term. What kind of patients are we talking about here?

Dr. Speed: We're talking about a huge spectrum of people, from an individual that may have sustained a concussion heading a soccer ball all the way to someone that's been in a catastrophic car accident and sustained a brain injury that's left them in a coma for a prolonged period of time.

Interviewer: And what kind of patients do you see the most getting these types of injuries?

Dr. Speed: Well, the most common type of brain injury really is the concussion or mild brain injury that might be seen in the emergency room and sent home. But here at the Craig H. Neilsen Rehabilitation Hospital, we take care of patients in the hospital that have sustained more severe injuries that are perhaps comatose or have much more significant problems that last for a longer period of time.

Interviewer: So someone comes into say the hospital, the emergency room, this particular center with a brain injury, what's the first things that you guys are going to do to, you know, make sure that they're okay?

Dr. Speed: Well, that piece of it really falls to my neurosurgical and emergency room colleagues. They'll do any necessary surgical intervention to, say, remove a blood clot that may have formed. Possibly they'll do a procedure to remove a piece of skull to allow for brain swelling, which can be incredibly frightening for family members because obviously it looks very awful. But then once the person has recovered from a neurosurgical standpoint and they're ready for rehabilitation, they'll transfer over to the Craig H. Neilsen Rehabilitation Hospital and they'll have inpatient rehabilitation here working on all of the problems that they may have as a result of their brain injury.

Interviewer: And what are some of the problems that a patient like this might be experiencing?

Dr. Speed: Well, the brain is awfully complex and it does everything. So it could be emotional problems. It could be cognitive problems. It could be paralysis of one or both sides of the body, swallowing problems, speech problems, visual difficulties, you name it.

Interviewer: So when we talk about emotional or cognitive, what kind of things are we experiencing? Like a change in mood and behavior, lack of memory, what are some of those things?

Dr. Speed: Well, early on a person may still be in what we call post-traumatic amnesia. They have no idea where they are. They have no idea what's going on. They can't process information. They can't make sense of their environment. And I make the analogy that it's somewhat like living inside a kaleidoscope. They're just presented with all of the sensory input that they can't make any sense of. And so, of course, that's a very frightening experience, and oftentimes the reaction is one of thrashing around, being agitated, yelling, screaming, because it's a very frightening and disorienting experience. But as a person continues to recover, that orientation improves and the person can make sense of their environment again and that agitation will eventually settle down.

Interviewer: That sounds like a kind of situation that could cause some anxiety for both a patient and for, say, the loved ones that are looking on. What can, you know, doctors like you or someone at a center like the Craig H. Neilsen Center do to help relieve these kinds of symptoms and get the person, you know, closer to normal?

Dr. Speed: Well, the first thing we do is have the person in a low stimulation environment because the less sensory input coming in, the low light, low sound, the TV is off, blinds are down, etc., and minimize the stimulation. And then if necessary, we may use a person's music that they're familiar with, that they enjoy. That can be calming for lots of people. And interestingly, I had patient years ago, who was a young man who was into head banging heavy metal and that was something that was very calming for him. It was very disturbing for the staff, but it worked to help him feel more comfortable and relaxed.

Interviewer: So after a patient has gone through that post-traumatic amnesia, what are some of the steps that come next, and how long can a patient and their loved ones be expecting the recovery to take?

Dr. Speed: Well, of course, the recovery is incredibly variable, and it depends on the severity of the injury, it depends on the type of injury or injuries, and it also depends to some extent on what the person had in terms of life experience prior to the injury. But once the typical sort of sequence of events is the person will proceed out of post-traumatic amnesia. So they'll be oriented, they'll know where they are, they'll know what year it is, and so forth. They'll know that they're in the hospital and why they're in the hospital.

And our therapists are excellent at working with people to regain physical function, balance coordination, mobility. Our occupational therapists will work on what are called activities of daily living. How does a person get dressed? How do they bathe themselves? And those sound pretty basic, but, you know, if a person has had a brain injury, they may not be able to dress themselves. They may put their pants on and then put the underpants on outside because they just don't know the sequence of events that are necessary and they can't process that. So occupational therapists will work on those kinds of things. And then we also have speech therapists that will work on cognition, memory, and also address any language problems that might exist and also any swallowing difficulties that might result from the brain injury.

Interviewer: So what are the expected outcomes for the types of treatment regardless of what kind of brain injury this individual is having and comes to a center like the Craig H. Neilsen Rehab Center?

Dr. Speed: Well, outcomes, of course, are incredibly variable, but we're very proud of the outcomes that we do achieve here. And more than 80% of the people that we admit to the Craig H. Neilsen Rehab Hospital with brain injury are discharged to home. And that doesn't mean the rehab therapies are finished at that time, but people do go home and continue their therapies in some fashion after discharge to home.

Interviewer: And how long are they typically at a center like the Neilsen Center?

Dr. Speed: Well, our typical length of stay for someone with a brain injury that's admitted here is somewhere between two and three weeks.

Interviewer: Wow. So I guess one of the messages maybe that, you know, with the right help and the right medical assistance, there is hope for someone after a traumatic brain injury.

Dr. Speed: Oh, absolutely. For sure.

Interviewer: Harnessing the power of physical therapy for stroke recovery, Dr. Steven Edgley is the stroke rehabilitation medical director at University of Utah Health.

Dr. Edgley, just first off, what is the importance of physical therapy for stroke recovery?

Dr. Edgley: The reason why physical therapy is so important, and walking specifically, is that physical therapy will facilitate better walking. Better walking will facilitate better function in the home and the community, and better function will facilitate a better quality of life. And that's what we're really after. It's very important to the individual patient to regain walking and moving around capabilities.

Interviewer: Dr. Edgley, in the past few years, from what I understand, the technology or the ways that you help people recovering from a stroke start to walk again has actually changed quite a bit and improved. Tell me more about that.

Dr. Edgley: Over 15 years ago, so many stroke patients did not get the therapy they needed because it was too labor-intensive. Now we are able to use advanced techniques like bodyweight-supported harnesses.

Interviewer: Tell me what that harness does.

Dr. Edgley: Early on in the recovery process, we used to use three and four therapists. Now we can use one, maybe two therapists with the bodyweight-supported training.

We actually have in the new Neilsen Rehab Hospital have the longest what's called the ZeroG track in the world. Also possible is unweighting the body through using a pool therapy, and we now have a treadmill on the bottom of a pool that partially unweights the body. And that is actually going along with the same concept of partially unweighting of the body for increased reps and practice.

Interviewer: What I'm hearing is walking is just that important. That should be your goal, just to get out and do it. It might not necessarily be pretty at first. You've just got to go through the motions. And if you go through the motions, it will get better and your recovery will get better. Is that a fair assessment?

Dr. Edgley: To be able to effectively walk, you typically need to compile a lot of repetitions. And typically, starting from square zero, a lot of people don't really get out of bed and stay in bed for months to years. And so we find it's critically important to ambulate early and often use these advanced techniques to help in the process.

Interviewer: Dr. Edgley, if an individual recovering from a stroke doesn't have access to a ZeroG track or the treadmill that's underwater like you talked about to help them get in those reps necessary for regaining their ability to walk, what would you recommend for that individual?

Dr. Edgley: Everyone should have access to a physical therapy gym or location. Encourage your therapists to actually walk with you. And it may be that you have to have four hands on deck to fully walk safely at first, but that is what it sometimes takes.

Interviewer: I feel like if there is just one thing that somebody should take away from this is just if you've had a stroke, you've just got to start walking and figure out how to make that happen. And if you have access to great technology like the ZeroG track at University of Utah Health . . . and by all means, if you can take advantage of that, great. If not, have those people help you walk on the treadmill that has the sidebars. You've just got to get those legs moving to get that brain muscle reconnection going again and those repetitions. That's what really matters.

Do you have a story that illustrates just how important walking is, getting those repetitions in is, to stroke recovery?

Dr. Edgley: I'm thinking of one young stroke patient who was despondent and discouraged, so discouraged that she really did not walk and put forward the effort that is necessary for recovery. And that went on for months. Couple of years actually.

And when she started to be more receptive to these therapy techniques, her whole life changed as she began to be more able to walk, more able to get outdoors, and more socially active. And now she is married and chasing a toddler around. So it can have very, very wide-ranging impacts.

Announcer: Need reliable health and wellness information? Don't listen to the guy in the cube next to you. Get it from a trusted source, straight from the doctor's mouth. Here's this week's listener question on The Scope.

Interviewer: All right, it is time for our listener question. Today, the listener question is from Renee. Her dad just had a stroke and he's going through physical therapy, and she wants to be sure that she's doing the right things to help him recover. She understands how important physical therapy is and she wants to know what to do, how to help. So we brought in an expert, Randy Carson. He is a new neuro clinical specialist in physical therapy. What can she do to help her dad?

Randy: One of the first things that we talk to people about, families especially, is to actually take care of themselves because they definitely need to be in a position where they could be helpful. So after somebody's had a stroke, they may need help with things like walking around the house, getting in a bed, and doing things like that. And while they're in rehab with us, they're in good care. So this would be the time for them to do things like get their house in order, make sure they've got the time when their dad goes home so that they can actually be in a good position to be helpful.

We do a lot of training with families right before somebody goes home to show them really great body mechanics and things like that so they don't get injured, a lot of good safety things that we teach them about how to assist, in her case her father, so that he wouldn't have a fall or put himself in more harm's way, and definitely, a lot of education on prevention of secondary risk factors so that you don't end up back in the hospital too.

Interviewer: Yeah. That surprised me a little bit. I guess I didn't see that answer coming. I thought your answer is going to be more along the lines of, "While he's doing his exercises, you can do this, this, and this."

Randy: People make tremendous progress while they're in the hospital. So if they're involved a lot and really early on, for one, they usually burn out by the end of the stay if they're there three or four weeks, because that's a long time to be on you're A-game the whole time. And then, the other thing is they're overwhelmed because who they see on the first day in rehab is going to be dramatically different on the person that they take home.

So we don't do a lot of training in the beginning, because that's when they're at their worst. They might need a lot of lifting assistance, they might be a super high risk for fall, and that's the best time to let us take care of them and try to improve them to a point where they can be very manageable to take home.

Announcer: Have a question? Ask it. Send your listener question to hello@thescoperadio.com.

Dr. Majersik: Hi, I'm Dr. Jennifer Majersik. I'm a stroke neurologist at the University of Utah Health Care and the Director of the Stroke Center. My guest today is Dr. Alex Terrill. She's a rehabilitation psychologist in the Division of Occupational Therapy at the University of Utah Health Care. So, Alex, I've been very excited about this topic since I take care of stroke patients and when patients come in, I find we talk all about their high blood pressure and whether they're taking aspirin.

But actually, it's difficult for us to talk about the partnership between the two of them and I can see, although I'm not experienced to this, I can see that there's maybe difficulties between them, but I don't always know how to deal with that with the partners. What have you seen that are some of the problems that happen between couples?

Dr. Terrill: They follow and there are some different broader categories. I'm going to focus more on the psychology or emotion-based problems because that's my area of expertise. But one of the big changes for a certain are changes in mood. So post-stroke depression or apathy is extremely common. It occurs in about a third of stroke survivors. But it's also extremely common and some suggest that it's actually more common in caregivers, up to about 50% of caregivers who experienced depression after stroke. And so these changes in mood, they not only affect the individual but it's been shown that there's a reciprocal effect.

So it's very interconnected. When one person isn't doing well emotionally, the other person isn't doing as well either. And so, for example, if you have a caregiver who is depressed, they will have a harder time doing some of the caregiving, having hard taking care of themselves on their own needs and this can actually increase the likelihood that the person who had the stroke will be hospitalized.

Dr. Majersik: I've also seen data saying that the caregivers health themselves is compromised and I somewhat assume that this is because they stopped going to appointments for a breast cancer screening or to get their own cholesterol checked and they're not out socializing as much.

Dr. Terrill: Yes.

Dr. Majersik: Sometimes, I do talk to my patients' spouses about that. "Are you taking care of yourself?" because I worry and I can tell that they probably aren't.

Dr. Terrill: That's great, yeah. We see that all the time and it's something that the message that we are trying to spread is that, again, the caregiver kind of . . . everything focuses on the patient and, of course, they are too and they want to help. Sometimes they don't know what to do, but it's exhausting and they often neglect their own needs in terms of taking care of their health. Just socializing, getting some social support and we believe that that also contributes to depression is that their social circle shrinks because they're not able to get out or will not get out.

Dr. Majersik: So if a spouse is looking for more help in trying to understand his or her new role, where should they go? Should they go to the usual caregiving sources of support or is there something else that they should do?

Dr. Terrill: That's a good question and I think it's very individually based. I mean, certainly, getting resources for caregivers in general could help with some of the more general issues that come up. How do you find time to do some stress management or take care of yourself? And there are some resources out there. There are caregiver support groups specifically. But there's relatively little that's out there for stroke caregivers, per se, and one of the things that is unique or there are actually several things that are very unique to caregivers for stroke survivors that might not be the case in other things like old-timers or spinal cord injury, for example, along with maybe some physical changes that might happen after stroke.

You do have kind of that emotional piece, the emotional component, changes in cognitions. So the way that you're thinking changes the way that you communicate. And if you think about couples talking to each other, and if one of those partners in the couple isn't able to communicate effectively, how difficult that is. And that's a fairly unique thing, I would say, to partners of stroke survivors.

The other thing is that it does happen very suddenly and, often times, I would argue that practically no one is prepared for something like that when it does happen. And so you have that sudden transition to where you're taking on that role and whereas initially, you might have people rallying in helping you, social support at the hospital, once you're back out there, there's few and far between. Things drop off and it's good to know where to go.

Dr. Majersik: What are you doing now to try to help the situation? It sounds like an area that you're obviously very interested in and I'm hoping we're going to learn more in the next few years about how to help spouses and caregivers.

Dr. Terrill: Yes, so one of the things that I'm working on is actually creating an intervention that is done by both partners in the couple. And rather than just focusing on kind of educational pieces for a caregiver, which is something that's more traditionally done, we actually have them both participating in activities on their own and the activities that they do together. So we like for them to have that shared experience and we have them do positive psychology-based activity. So things like expressing gratitude, working on relationships, acts of kindness, savoring. I mean there are all kinds of things that they can work on. And it really kind of helps to give that structure to ways that they can interact and share some positive moments, make that time.

And that's something that we're hearing quite a bit is that after stroke happens, you kind of flail. You just survive and you want to help each other, but you don't know how and you stop interacting altogether. So and that's really a shame because your partner can be one of your biggest sources of strength and resilience and that's mutual, for both the person who have the stroke and the caregiver.

updated: July 29, 2020
originally published: January 20, 2016

Announcer: Medical news and research from University of Utah physicians and specialists you can use for a happier and healthier life. You're listening to The Scope.

Amy: From stretcher to skiing, for a podcast focusing on some physical challenge patients may encounter when recovering from a stroke. This is a topic I am all too familiar with after suffering a stroke on New Years Eve of 2012. So, the first question I have for you, Stacy, is what advice do you give stroke patients on setting realistic physical therapy goals?

Stacey: I think it's really important to individualize the care for each patient and really tap into what motivates them in getting back to their new lives.

Amy: How important is it for the physical therapist and stroke patient to work together?

Stacey: I truly believe it's the only way to have a successful therapy outcome and a successful relationship with your patient. I think that making goals together and individualizing their care and getting them back up on their feet is what makes the rehab process really important and very fun and unique as a therapist.

Amy: What are realistic goals for someone who has had a stroke?

Stacey: That's a huge question, but I think it depends on the person's age. It depends on what they enjoyed doing beforehand. If they want to lie on the couch, we can definitely get you back to lying on the couch. If you want to ski, we can get you back to skiing. So, it's really important to make sure that you're taking your patient's needs and wants and desires into your plan of care and adjusting those as needed.

Amy: I want to return to a previous question. When it comes to physical therapy after someone has had a stroke, I'm thinking one shoe does not fit all.

Stacey: Correct.

Amy: So how do you individualize a patient's plan of care?

Stacey: Again, I think it's vital to their participation. I use family members if communication is a barrier at first. I say, "What makes Amy, Amy? What makes her tick?" And trying to pull those pieces into their rehab is really important. And it's a team approach. We have an occupational therapist. We have a speech therapist that work with our people who are recovering from a stroke. We work together to make sure you're able to get out into the community, because that's a huge, scary barrier for someone who has suffered a stroke. It's something that's very important to us as a team to get everybody on the same page, especially with the patient's goals being the center of the focus.

Amy: Many stroke patients have uncovered either major or minor setbacks. And what words of wisdom do you give them on coping with that setback?

Stacey: I think it's very individualized, but I think, it sounds clichÈ, but keep going. Just keep swimming. Just keep doing. Don't stop moving. Motion is life. Find what motivates you. It's going to look different than it did before quite possibly, but trying to find some peace and some enjoyment in what your new activity is or what the new adaptation is. Or really just trying to cope with what the difference is that you're now facing after you've recovered from your stroke or recovering from your stroke.

Amy: Speaking of noticing a huge difference, I recently this winter went skiing at Alta.

Stacey: That's amazing.

Amy: And that was quite challenging, but I was amazed at how naturally it came back to me. I still, favored my right side, but it was amazing how naturally it came back.

Stacey: I think that's why we do our job, is to hear stories like that. In in-patient rehab, we don't get to see you get out on the slopes, but we get to give you a little push and hope that one day, that's the story that we're hearing is, "I'm getting back to skiing, I'm getting back to biking, I'm getting back to walking, I'm getting back to..." whatever it is that, again, makes Amy, Amy. That's the true joy of being a physical therapist.

Amy: And one final question, what advice do you give stroke patients on their first day in the rehab unit.

Stacey: It's going to be a long day. It's going to get easier every day from here on out. You're going to keep getting stronger. You're going to keep seeing improvements but you're going to do this, and we're here with you to help you do the best that you can.

Amy: And so, in ICU and acute care both, I was worried if I would be able to go for hikes, swim laps, or ride my bike again. All that changed when I met you, Stacey, in the rehab unit. I will be forever grateful for your patience, encouragement, and saying, "You can do this." But most importantly, I am thankful to you for your friendship.

Stacey: Thank you, Amy. You've been a true gem to work with, and I'm honored to watch you go from stretcher to skiing. It's amazing.

Announcer: TheScopeRadio.com is University of Utah Health Sciences Radio. If you like what you heard, be sure to get our latest content by following us on Facebook. Just click on the Facebook icon at TheScopeRadio.com.

Amy: This is Amy Steinbreck talking with Dr. Steven Edgely, the director of stroke rehabilitation at the University of Utah Health. What do you think is helpful to promote a helpful recovery with a stroke victim?

Dr. Edgley: A lot of recovery happens, initially, without the patient doing that much. We try to facilitate optimal recovery in the first couple of months. Those brain circuits come back to function.

Amy: So, the first couple of months are the most important, in a stroke victim's recovery, would you say Dr. Edgely?

Dr. Edgley: I would not say that.

Amy: Okay.

Dr. Edgley: Because stroke recovery can happen even years down the road. But the rate of improvement typically is fastest at the early months.

Amy: Okay.

Dr. Edgley: That's due to a number of factors, specific to what's going on in the brain and [retraining] the brain cells to function. After about three to six months, it becomes somewhat more difficult to see those marked improvements, but the potential for recovery is still present. It takes the patient to challenge him/herself to do things in a way that's comfortable for them, in a way that's still challenging to them. Simple tasks around the home, using their hands or arms for simple tasks. In time, the brain will change slowly to accommodate for those new tasks and ease of movement.

Amy: It's all part of the brain, reworking those connections and reforming those connections, I assume?

Dr. Edgley: Yes, that's exactly right, and, with time, the brain will be able to lay down new connections, new circuits, and be able to find an effective work around. The main point is the patient has to keep challenging themselves, to do more and go slightly beyond their comfort zone to facilitate those changes in the brain.

Amy: Do a lot of patients find that frustrating? I know, Dr. Edgley, that I sure found that frustrating.

Dr. Edgley: It's frustrating at times, but I like to promote people training for a triathlon. Not necessarily frustrated, just challenged. Training need not be frustrating. Frustrating things are mostly a product of their own emotions. The patients are less frustrated when they see progress towards goals that are meaningful to them.

Amy: I remember in the hospital when I was just learning to walk and they had me in the wheelchair, with the railing, you know, the guided walking path.

Dr. Edgley: Yep.

Amy: I found that very frustrating. But eventually, I was able to walk with a cane, then a gait belt, and now look at me, you know?

Dr. Edgley: Yeah.

Amy: Twenty-four months later.

Dr. Edgley: Yes.

Amy: Yeah.

Dr. Edgley: Yeah so, your situation was not unique.

Amy: So, Dr. Edgley, what factors do you think in the young stroke patient, are optimal influencers on promoting a strong prognosis for a recovery?

Dr. Edgley: Setting long term goals, and those goals should be something that the patient has to reach a great deal for, like 6 to 12 months, or beyond. Then teaming up with a group of people that can help you on the process.

Amy: I would say from a personal experience, a strong support network of family and friends to push you to your limit is important.

Dr. Edgley: Yes, so, pushing people to their limits is good to a point. Sometimes people, all people just need a break in knowing what your limits are, is also important. One of the unique things about changes in the brain, in improvements is, for example, if you played the piano and worked for hundreds of hours to perfect a piece, you don't sense necessarily the brain changing to make it easier to perform the task of being able to play that piece perfectly. You may perceive the completion of that perfect piece, but the brain does not have this building, built in system to signal when you're improving. So, you actually have to look at milestones, recognize the milestones, because it's not natural to do so and give yourself credit.

Amy: The self recognition, and giving yourself a pat on the back.

Dr. Edgley: Yes.

Amy: Is often important.

Dr. Edgley: Yep.

Amy: And recognizing that the milestones and the path people will take are all different. There is different milestones and different paths.

Dr. Edgley: Absolutely. Absolutely.

updated: November 3, 2021
originally published: May 6, 2015

Amy: This is Amy Steinbrech talking with Dr. Steven Edgley, the director of stroke rehabilitation at the University of Utah Health Care.

Dr. Edgley, thank you for joining me so much in studio for a podcast on stroke recovery.

Dr. Edgley: My pleasure.

Amy: Every year, more than 795,000 people in the United States suffer a stroke. Strokes are becoming more common among young adults in the prime of their life. I'm wondering if you could tell me a little bit about stroke recovery process in the young stroke survivor.

Dr. Edgley: It's true that about 10% of stroke patients are under the age of 50. This population represents a special population in terms of the unique challenges they face that are generally in the crux of their career and raising families, and this life event is very hard for most people. I find that all stroke patients who have a loss of function, they go through certain stages of mourning or loss.
We talk about the Kubler-Ross stages of mourning, which entails denial, bargaining, things like anger, and, ultimately, acceptance. I find that especially in the young stroke patient, meaning younger than, say, 50, these patients need to be guided towards things that will improve their chances for recovery before they reach the level of acceptance. Oftentimes stroke patients don't fully realize their own potential.

Amy: So this is somewhat pushing the stroke patient to their potential and making them realize their potential?

Dr. Edgley: Exactly. It takes a lot of guidance and someone actually, a whole team of people to guide them through the barriers that they encounter, medical, physical, emotional, everything.

Amy: Right. So I guess one way to look at a stroke is it's a process from beginning to end. Stroke recovery is truly a process.

Dr. Edgley: That's exactly right. A process that takes a lot of support. For many people that are young, they have the potential to get back to high level things like driving, or returning to work. They just need a little guidance and the resources and a team of people to help them along.

Amy: Young adults are often faced with this different set of circumstances than elderly stroke patients. They have a long life expectancy in front of them.

Dr. Edgley: I think it's critical to set the patient on the right course for their next future decades. And getting them set up with the things that will truly provide quality of life, like being able to access the community, like being able to recreate and like being able to form meaningful relationships with friends and family. And for some people, like being able to return to their former employment, or at least do some service, activities, which is helpful to their overall quality of life.

Amy: Remaining engaged with community and family I'm sure is a big part of that.

Dr. Edgley: Yes. Yes.

Amy: How do young patients sell themselves short oftentimes?

Dr. Edgley: You know, when patients have a stroke, it's a really traumatic life event. They probably don't see their friends and family going through and succeeding without the process of recovery. They don't know what to expect. They don't know how to get themselves out of this black pit. I think many patients come to a certain level of comfort and realize that things will be okay in their life in terms of their basic needs, but don't really have an idea what to reach for. Many times the limits of people are limits that they put on themselves.

Amy: Self imposed. Yeah.

Dr. Edgley: Now, that's not to say that every stroke patient has the potential to get that back to 100%, the way their life was in the past. Certainly reaching and striving to get as much quality of life, and be as independent in the community is really important.

Amy: Recognizing your potential.

Dr. Edgley: Yes.

Amy: Have you experienced other people putting limits on stroke patients?

Dr. Edgley: I do see occasionally some people around the stroke patient who, based on misinformation, have some assumptions what the stroke patient's potential is. We commonly deal with this in therapy. For example, the patient's family member tries to do everything for the patient without giving them the chance to learn how to do the activities themselves. That's a common occurrence, and a simple matter of just educating the family members to let's try to promote as much independence as possible. And the way to do that is you learn by doing.

Amy: Right. Most often finding that balance, that perfect balance between independence and dependence.

Dr. Edgley: Yes.

Amy: What are some of the barriers, Dr. Edgley, do young stroke patients face in recognizing their potential?

Dr. Edgley: I would say, again, a stroke is a major life event and it requires a major life adjustment. Some people are able to adjust better than others on their own.

Amy: Right.

Dr. Edgley: Most people are able to adjust more effectively with a broad network of support, including family, friends, and rehab specialists. With time we like to promote higher level goals, like return to work if possible. For that to occur, you have generally got to have a supportive employer who is willing to take a chance. Stroke patients have the potential to be superb employees.

Amy: Dr. Edgley, what advice or tips do you have for the young stroke patient?

Dr. Edgley: Accept yourself and where you are. But don't accept the limitations that you perceive or that other people put on you.

updated: April 7, 2021
originally published: December 10, 2014

Dr. Miller: How to get your strut back after a stroke. That's next on Scope Radio.

Hi, I'm here today with Dr. Stephen Edgley. He is an associate professor in the department of physical medicine and rehabilitation in the University of Utah. Steve, a patient has had a stroke and is having difficulty walking. What do they need to do, to be able to get back on their feet again and get around?

Dr. Edgley: This is an extremely critical point that so many patients, months in, actually years in, after struggling with a stroke. The typical stroke patients are by and large...

Dr. Miller: Now, we are talking about a stroke patient where one side of the body, one leg is affected. Am I right about thinking that?

Dr. Edgley: Usually.

Dr. Miller: Usually, Okay. It's not usually both, it's in one side.

Dr. Edgley: So usually one side is weak. I'm going to stress how the importance of being as active as possible and this carries huge health consequences. We know that the insistence of heart disease, diabetes, major risk factors can actually lead to death is much greater when you're inactive.

Dr. Miller: Getting back on your feet is important for more than one reason.

Dr. Edgley: Yes, also the quality of life reasons being able to [inaudible 00:01:46] the community is also an important factor. We have a lot of research that clearly shows that if a stroke patient is able to achieve a good speed, walking speed of just 1.8 miles per hour, they will most likely an predictably be able to ask us the community, walking in the community rather than just walking and hobbling around the home.

Dr. Miller: So the need to do the physical therapy is one thing but these patients also have not just weakness sometimes but pain, spasticity of the affected side. Is that right Steve?

Dr. Edgley: Yes, That's another critical point. These patients typically need an intervention by a specialist in rehab to overcome the barriers to achieve better walking speed. Those barriers are typically things like spasticity of muscle tying their leg up, inhibiting fast walking. Things like pain and low endurance.

Dr. Miller: How often would pain occur in someone with a stroke?

Dr. Edgley: Well it depends, pain syndromes are typically exacerbated by the hemiparetic gait. So the gait mechanics being a little all off counter leads patients be more susceptible to common things like joint arthritis. There are some specific pain syndromes that occur as a result of stroke sometimes.

Dr. Miller: I would guess that the post-stroke patient who has suffered weakness to the leg is not getting this team approach that the physiatrist supplies, that their recovery is going to be delayed or really impaired.

Dr. Edgley: I see patients that have gone on for years being restricted to the home environment with little intervention and attention to these barriers can often achieve great results even to the extent of a much greater quality of life.

Dr. Miller: So what are the barriers to maybe walking faster than the 1.8 miles an hour. Can they eventually build up to a pace that is faster than that?

Dr. Edgley: Well, it depends on a lot of variables. We approach it like this, first try to break down as many barriers to walking speed as possible. And then get them into an aggressive physical therapy program. And then reevaluate the situation.

Typically if the patient can walk a limited distance at home, we can influence the situation to enable the patient to be somewhat effective at walking in the community by breaking down these barriers in a more specialized and team-oriented therapy approach.

Dr. Miller: So a patient with this stroke problem where they can't walk, once they get into therapy are we actually teaching another part of the brain to help take over?

Dr. Edgley: Often we are, the brain has significant potential to do, adapt, and change, even years after a stroke. What we are really doing in therapy, especially months and years after, a stroke is trying to capitalize on the brain's ability to be plastic and adapt. Teaching them the [inaudible 00:06:23] strategies for faster walking and more functional movement.

Dr. Miller: So, it's not just the walking? What you pointed out, is that patients after a stroke, who walk, are able to get going. As opposed to those who don't, do better in the long run, live better, and live healthier. It seems like such a simple thing, yet it has remarkable consequences.

Dr. Edgley: Indeed, it is an extremely critical and some people we now consider walking speed to be the fifth vital sign. It's something we measure in our clinic as an objective measure of how they're doing overall and how they're doing physically.

updated: July 15, 2020
originally published: August 5, 2014