Episode #2: Speech Pathology for Stroke Survivors

INTRODUCTION

Today’s conversation is with Nadine Nye, a Speech Language Pathologist, She’s licensed to treat a variety of problems arising from damage to the brain. Nadine finished her Clinical Fellowship at Princeton in 1988. Since then she’s helped innumerable individuals, and she’ll share with us her unique perspectives on the challenges that arise after a stroke.

 

DISCLAIMER

Neither Joel, Drew nor Tom are doctors or any other kind of medical provider. We do not and cannot provide any medical advice, diagnosis or treatment. The content provided in the program is for informational purposes only, and is not intended to substitute professional medical advice, diagnosis, or treatment.

Please do not disregard professional medical advice or delay in seeking help because of something you may have heard on this program or any materials referenced in this program. We direct you to seek medical advice from qualified healthcare professionals such as physicians or medical specialists.

 

Transcript: 

Drew Summins:

I am Drew Simmons

 

Joel Fine:

And, I’m Joel Fine.

 

Drew Summins:

Welcome to Stoke Voices.

 

Joel Fine:

We created this show because so many people just wanted to know that they’re not alone.

 

Drew Summins:

It’s important to understand that no two strokes are the same. While strokes are undeniably challenging, there’s always a chance to find something good that comes from the experience. Stroke voices dives into the topics that matter most.

 

Joel Fine:

…diets, therapies, innovations…

 

Drew Summins:

…and conversations that can inspire real change in the lives of stroke patients and their families. We’re thrilled to have you with us on this journey as we navigate the path forward together.

 

Joel Fine:

Thank you for joining us and enjoy the show!

 

Drew Summins:

Today’s conversation is with Nadine Nye, a speech language pathologist. She is licensed to treat a variety of problems arising from damage to the brain. Nadine finished her clinical fellowship at Princeton in 1988. Since then, she’s helped innumerable individuals, and she’ll share with us her unique perspectives on the challenges that arise after a stroke. 

Your profession is so unique. What got you into it? Is this a family thing—like you had a mother or an aunt who did this?  01:21 

 

Nadine Nye:

In high school, I had an interest in sign language. So, I went to Harrisburg Area Community College and took sign language classes. Thought it was really cool and fun. I had planned to be a deaf education teacher. I went to Penn State and Asa Berlin was my professor. Once I got up there, he explained that communication disorders was Penn State’s broader program and that the deaf education world was changing. So, he encouraged me to take some speech pathology classes and I went that direction and loved it—and the rest is history. 

 

Joel Fine:

Wow. And you went to some really good schools, too.  02:20 

 

Nadine Nye:

I did. So, my background is Penn State undergrad in communication disorders and then Rutgers Graduate School for speech pathology. Then I did my externship at Penn in Philadelphia. Then I did a clinical fellowship year, which is required for all speech pathologists, at the Princeton Medical Center. Then I stayed on and worked for Princeton, both at the medical center and their outpatient clinic. Then the core of my younger age career was at Magee Rehab in Philadelphia. I also spent some time, as I was raising my kids—I did more per diem work, worked for Moss Rehab, worked for Genesis. Then when I was helping my parents out, I worked at Penn State, Hershey Rehab. Then for quite a few years now, since being full-time in Utah, I’ve worked for Intermountain Health.

 

Joel Fine:

Nadine, do you interact a lot with others—with like, Stephanie and Christy?  03:22 

 

Nadine Nye:

Absolutely, yes. Speech pathologists are part of a team, particularly in the neuro world.

 

Drew Summins:

You talked about the team. The team is you and other therapists, but it’s focused around the patient. Is that correct?  03:36 

 

Nadine Nye:

Correct. Most traditionally, it’s physical therapy, occupational therapy, and speech therapy. That’s the standard. In some different programs where I’ve worked, things get a little bit more elaborative and you can have recreational therapists, music therapists, case managers/social workers—neuropsychologists.

 

Drew Summins:

So, who decides which of those therapists are appropriate for a given patient?  04:11 

 

Nadine Nye:

Typically the overseeing medical doctor in the rehab world is a physiatrist—physical medicine and rehabilitation, that doctor will put in the orders. It depends what the sequence was. If someone had a stroke that required acute care in a hospital and then  they went to inpatient rehab, all those three disciplines—primary disciplines are going to evaluate a person. Then if they come into the home care and then the outpatient world, typically, all three disciplines—if they were seen acutely, that follows along. Or a team member, let’s say someone might just have physical therapy to start, but then that physical therapist says, Hey, I think I’m seeing some cognitive, or communication, or speech issues. I’m going to put in a request that the doctor order an evaluation for speech.

 

Drew Summins:

When you work as a team, you’ve got the doctor, you’ve got the therapist—do you call it a patient?  05:21 

 

Nadine Nye:

We still do. I think sometimes—now particularly here at Park City Hospital, our neuro clinic is truly a community-based entity. So, I personally tend to prefer client, but in the broad sense of things everybody still uses patient.  

 

Drew Summins:

You’ve got all the therapists, you’ve got the doctor providing input—what about input from the client. Is that part of it?  05:50 

 

Nadine Nye:

Absolutely. I mean, I think I pride myself in trying to be a very functional therapist and needing to know what someone’s communication needs are for who they are.

 

Joel Fine:

Have you ever had a client that you just couldn’t work with and couldn’t help? I mean, it’s too complex or that they were just too far gone, so to speak.  06:13 

 

Nadine Nye:

I would say no, that even someone with profound aphasia—and we can back up a little bit and define some of the terms. But, someone that has a severe communication impairment, we still give it our best shot. There’s augmentative communication that we need to try from a simple handmade board to more sophisticated computers.

 

Joel Fine:

If you want to discuss what you do just go through your job and terms and whatever…   

 

Drew Summins:

…and particularly, through the lens of stroke survivors because the podcast is mainly focused on people who have had strokes.  07:07 

 

Nadine Nye:

Speech language pathologists—so SLPs treat a wide variety of communication disorders. But, in terms of stroke patients, it is primarily aphasia, dysarthria, apraxia, cognitive communication disorders, and swallowing or dysphagia. To back up, aphasia is a broad term for a language-based disorder. It can be receptive. It can be expressive. It can involve reading and writing. Typically all four of those modalities of communication are assessed in an aphasia assessment. 

 

Then with dysarthria, that’s when you actually have weakness in the oral motor structure. Sounds can be distorted—not clear. With apraxia it is a motor speech disorder where there’s a disconnect between the brain and the oral motor functioning. Sometimes we actually call it articulatory groping, where someone’s trying to make a sound and just can’t get to the right spot. So, it ends up coming out somewhat disfluently. 

 

With the aphasia, it tends to be more left hemisphere areas of stroke. Then with right side hemisphere or some frontal strokes, it tends to be more cognitive communication deficits,  meaning attention, memory, problem solving, executive functions, the ability to plan and execute intentions. Swallowing can really be involved with either side, and it tends to be a weakness and a slowed response time of swallowing. So those are all the different areas that we tend to work with with stroke survivors.

 

Drew Summins:

So, you have to come up with a strategy to work with the client?  09:21 

 

Nadine Nye:

Step one is always evaluation. There are many standardized assessments. One of the true classics is the Boston Diagnostic Aphasia Examination, the BDAE and the Boston Naming Test. Those are very widely used by most speech pathologists. Then on the right side strokes, then things tend to be a little bit more cognitive. The Cognitive Linguistic Quick Test is one that I use a lot. The Repeatable Battery for the Assessment of Neuropsychological Status. RBANS is another one that I use a lot.

 

Joel Fine:

Can you talk in generalities? I mean, are Drew and I very bad cases, or are we okay? I mean, relatively.  10:08 

 

Nadine Nye:

I think you’re both doing great. I read an interesting article. Let me see if I can just find this. In terms of classifying someone mild, moderate or severe. There is some discrepancy. I mean, when you do a standardized test and you calculate the outcome numbers, most of those standardized tests give you a rating. But, I love this sentence. It depends on the degree to which aphasia impairs someone’s ability to communicate at the level demanded by their own personal, social, vocational, educational, and recreational needs.

 

Drew Summins:

That makes sense. So it’s probably more critical for somebody still engaged professionally—earning a living.  11:02 

 

Nadine Nye:

Correct.

 

Drew Summins:

Say one of the people listening to this just had a stroke a month ago. Three weeks ago. When do they start, typically, with speech language pathologists?  11:12 

 

Nadine Nye:

The sooner the better. In terms of actual statistical prognostic indicators, the ones that have withstood the length of time is: the size of the lesion; the size of the damage in the brain; where exactly in the brain; the health of the person; the severity; and then the Time Post Onset. So, the sooner you start, the better your prognosis.

 

Drew Summins:

Okay. And, for somebody who lives in a city, a big city, that’s fairly straightforward. But, if you’re in a rural setting, it’s harder to find—what’s a good resource for people who don’t live in cities to try to find a therapist?  11:55 

 

Nadine Nye:

Well, that’s actually a great, great question. It’s interesting, Park City is even considered rural. It’s quasi-rural, but again, we’re lucky to have such a great program and team here. But, it really only started here, maybe, six years ago. Seven years ago if someone had a stroke they would have had to go down to Salt Lake. 

 

I think telehealth is growing in leaps and bounds. I much prefer in-person, but if someone cannot get to an office, a clinic, a hospital, once evaluation is completed in-person, then I think telehealth can be a really decent option.

 

Drew Summins:

So, you can do your therapy via telehealth?  13:02 

 

Nadine Nye:

Yes. So, right now it is state-dependent. We cannot—because of our unique location, we have a fair number of Wyoming patients, but I cannot have a telehealth session with someone in Nevada or Wyoming. They actually have to go somewhere over the Utah state line, and then I can hold a telehealth.

 

Drew Summins:

That’s a regulatory limitation.

 

Nadine Nye:

Yes, it all has to do with insurance, basically.

 

Drew Summins:

Okay. Makes sense.

 

Nadine Nye:

But let’s go on to the assessment and the diagnosis. So again, a doctor makes the referral. A speech pathologist meets with the person and hopefully a family member, or a support member, or a loved one, a friend. We do both formal and informal assessment, meaning those standardized tests. But, I also do just a conversational assessment meaning, Tell me about you. What are your passions? What is or was your vocation? What are your own personal goals? What is most bothering you about your speech or language, or reading or writing, or your cognition since your stroke? 

 

Then we go through a method of goal development. In the rehab world, most treatments are planned in the outpatient world—are planned for ninety days or three months. Then we do a reassessment and we can continue on. But, a lot of folks, that’s what they need. 

 

Then we launch them. But, not to say that we can’t work with some people for years. Neuro-rehab is based on neuroplasticity, meaning that the brain recovers. I love to use again—because of where we live, but oftentimes a stroke is like an avalanche happened and you can’t take that road. You can’t take that primary road home anymore because the road’s blocked, but you’re going to take a detour and wind your way around and still get home. And, the more you take that detour, the easier it becomes. The faster it becomes, the more familiar it becomes. So, other areas of the brain are able to step up and take over for the area of the brain that was damaged.

 

Drew Summins:

That’s a great analogy. I never heard that. I like that.  

 

Nadine Nye:

Then in terms of how often the person needs to be seen anywhere from one to three times a week, over that three month period. Goals evolve over time. Maybe you achieve one goal and you want to modify it on recovery. A lot of people ask for a prognosis date, and in a very broad sense, most people make their best recovery in a year. But certainly—and I know Doctor Taubin uses a two-year point. That’s not to say that you cannot continue to keep working on things forever.

 

Drew Summins:

Sure. I know anecdotally, I’ve found online quite a few stories of people who, many years after a stroke, find that they’re still improving. 

 

Nadine Nye:

Absolutely.

 

Drew Summins:

So five, six, seven years. I mean, way out. So yeah.  16:43 

 

Nadine Nye:

I totally agree. I’m working with one gentleman now that had intensive speech therapy right after his stroke. He was very aphasic and very apraxic, and made good progress to become functional in a simple social situation. I think he’s five years’ out, six years’ out, and all of a sudden he’s feeling gung ho and wants to try another round of therapy, and he’s doing great. 

 

Drew Summins:

I like that because it suggests to people who are new to this stroke lifestyle that—don’t give up. Right.  

 

Nadine Nye:

Absolutely.

 

Drew Summins:

Yeah. That’s good. Do you engage in the therapy sessions with the family members?  17:26 

 

Nadine Nye:

Always as best as I can. Yeah, I always invite the family members or friends to be a part of it so they know what to support. Sometimes I get better insight, maybe, into a situation by a loved one sharing their own observations. And, it depends too. Like with swallowing, if there’s safety concerns with someone potentially aspirating, meaning that liquid or food is going down the trachea, not the way it’s supposed to go—oftentimes that loved one may need to really be overseeing safe swallowing strategies that a speech therapist has recommended.

 

I’d love the chance to talk about family and caregiver support, too. Back at Magee in Philly, I had founded what was called the Partners Program, and this was more on the brain injury unit—we actually had three units. We had a spinal cord injury unit, a stroke unit, and a brain injury unit. I was the supervisor of speech on the brain injury unit, but this doesn’t mean that this is not also completely applicable to the stroke world. 

 

I would pair someone further out in their recovery to a newer person that had just had a brain injury. So, it was amazing. Talking about giving hope, and just people sharing their experience, their journey. That veteran that was longer out in their recovery became very inspirational to someone that more newly had had a stroke.

 

Drew Summins:

Right. You can see that there’s a potential end point. 

 

Nadine Nye:

Yes.

 

Drew Summins:

Yeah. That’s so awesome.

 

Nadine Nye:

Here at Park City Hospital, I do two support groups. I do a neuro rehab support group, and then I do a Parkinson’s support group. It’s just invaluable. I either find a topic and facilitate a conversation around it, or I bring in outside speakers, but the friendships, the resources that are shared—I just, it’s one of my favorite parts of what I do. 

 

Then in terms of loved ones, caregivers, care partners, depending on what semantics you like, depending on the person’s communication impairment, there can be what’s called communicative burden on the partner. If someone is severely aphasic, but maybe it’s a person that’s been married for forty or fifty years to a person and they can almost know what a facial expression is or what that person is trying to express. That’s where I think we’re seeing spinoffs of my support groups where just the caregivers are getting together, or they find their own caregivers support group to talk about what it’s like on that side.

 

Drew Summins:

Caregivers support group. That’s awesome because I know the burden is huge on the family. I’ve talked to Trin about our situation, especially right after the stroke—is massive. It took all of her time. My son’s also incredible. The cost of the family was huge. Yeah, we’re still tight. Luckily we were tight going in. We’re even tighter coming out of the hard part. So that’s good that there’s a support group just for the family. The caregiver. Yeah.  20:46 

 

Nadine Nye:

Because, I don’t mean it to sound cliche, but if that person isn’t taking care of themselves, they can’t necessarily give their best to their loved one.

 

Drew Summins:

Right.

 

Nadine Nye:

And some people have to be convinced to go and do a little self-care, or just relax and have some time to themselves, and not feel guilty about it, that they need to reboot so they can give the best support they can.

 

Drew Summins:

Sure. Right.

 

Nadine Nye:

Then I think you guys had a question about some technology and tools. Obviously the tech world is rapidly changing. It’s not my forte. [laughter] But, we’re lucky here we have the Utah Assistive Technology Center. They’re based out of Salt Lake, but I can make a referral regarding a client and they will send a specialist up, bringing different augmentative communication tools or apps. 

 

In the past year, I’ve had the guys from there come up twice and help someone that was severely aphasic put a program on an iPad to better be able to communicate her basic needs to her family. That was exciting, and then we have a gentleman that is losing his speech through a very rare diagnosis, and he’s using a text-to-speech app on his phone.

 

Drew Summins:

Okay.

 

Nadine Nye:

We spend our time then—once that specialist tells me what app or what program might best fit this client, then it’s my job as the speech therapist to keep practicing it and make it more and more functional, user-friendly, and successful.

 

Joel Fine:

Are there some patients that you just can’t help at all because they’re so bad or they don’t want help.  23:13 

 

Nadine Nye:

There are those that don’t necessarily want to do the therapy and I can offer, or I should speak in a general sense, a speech pathologist can offer services, but sometimes a person just doesn’t want it. Or sometimes, the personalities maybe don’t jive, and you can recommend that they try a different therapist.

 

Joel Fine:

You know what? What I’m hearing is one, don’t give up. You may make small improvements and you may get better altogether. I mean, but the key is to have patience and time is on your side. Is that correct?  23:45 

 

Nadine Nye:

Yes. Yeah. So, I’ve done some private practice over the years. I had a gentleman that was running his own construction company and had a pretty severe right hemisphere stroke, but I worked with him privately for a good year and a half, maybe close to two years, and even going into his home office, running the construction company and trying to make modifications, and make sure that everything was as streamlined and organized for him, that he could then continue to run his business.

 

I love the community side of things—back when I worked at Magee, we actually had what was called a community reentry program, and I ran that for a while. After someone finished, like a traditional outpatient program, but needed to go back to work or to school, I and some other staff members, would work as the liaisons if we needed to meet with someone’s boss, if we needed to meet with someone’s professor and advocate for accommodations, and just providing that education sometimes, again, oftentimes a stroke or a brain injury, it’s an absolutely invisible condition. So the public, or bosses, or professors place demands on someone thinking that there’s absolutely nothing challenging this person, and that’s not the case.

 

Joel Fine:

Do you ever find clients or patients that just say, Screw it, I’m tired of this. And really it’s terrible…  25:46 

 

Nadine Nye:

No, Joe, I don’t do that. That is not professionalism. I work with someone as long as they want to work, and as long as they’re still making progress.

 

Joel Fine:

Okay. Thank you. Yeah. Like I said, I wasn’t trying to put you on the spot, but I mean, some people just don’t give a flying patoot. I mean, that concerns me.     26:08 

 

Nadine Nye:

Everybody’s an individual. But, you know, for the most part, people are motivated to continue to improve. I know one of your other questions was about practice outside of structured therapy?

 

Drew Summins:

Home stuff to do. Yeah.  26:40 

 

Nadine Nye:

There’s actually a program called Constant Therapy where a speech pathologist can oversee via email and the Constant Therapy Program that someone’s working on their iPad or their computer at home. That’s a pretty cool system, and that can give people a lot of practice. 

 

From a cognitive standpoint, there are apps called Elevate and Luminosity that give you building blocks to just keep working on memory and attention and problem-solving and things like that. So, huge fan of the New York Times games, like Letter Boxed…

 

Drew Summins:

I do those every day, yeah.

 

Nadine Nye:

…for word retrieval and the crossword and connections. So, I encourage people to do what they already did or to build upon that if, Oh, well, I used to do a crossword puzzle a day. Keep doing it. That is great word stimulation, word retrieval. 

 

But I do think some things that I’ve watched over my thirty-five-plus-year career are folks with a good sense of humor, and those that actually carry out what’s advised to do at home in the community have the best success. But humor is huge. I think that it comes with positivity. Folks that have—I always say it this way: acceptance is empowering. You suffered a tragedy, but accepting what skills you have and capitalizing on those becomes very empowering and allows people to get back to things that they’re passionate about.

 

Joel Fine:

Can you comment on the issue of changes in personality? Do you see that quite a bit?  28:38 

 

Nadine Nye:

I’m going to say from a stroke standpoint personality does not typically change. When you get into cognitive impairment from brain injury, or if you get into the true dementias, then you see more personality change. 

 

One of your items was about encouragement and hope. I could go on for hours about success stories, but there was one woman, this was back in Hershey—severe stroke and severe, both aphasia and apraxia. At the very beginning she could not speak. Then we start at the very basics, just getting the brain and body to coordinate again—that you have control over your breath. It would be something as simple as blowing bubbles like a cause and effect. You’re controlling your breath, which you need to do for voice and speech, but you’re blowing, just blowing bubbles. 

 

Well, she had the most delightful personality, just so fun and so rapidly progressed from not being able to speak or control motor movements, to blowing bubbles, to making sounds, to making words and then becoming conversational again. That was quite a few years ago. I still like to talk to her once or twice a year on the phone just to see how she’s doing. She is traveling again and just doing great.

 

Drew Summins:

At this point, when you talk to her, other than the fact that you know that she had a stroke,  is she so far beyond problems, speech problems that the average person would not recognize that she had a stroke?  30:39

 

Nadine Nye:

I think the average person would still know that she has to pause to find her words. And then sometimes the sound is not the accurate production that she’s hoping for, but she certainly makes her point.

 

Drew Summins:

Gotcha.

 

Nadine Nye:

…and, can ask questions, and provide humor, and opinion, and live life.

 

Drew Summins:

Live life—yeah.

 

Nadine Nye:

Yes, absolutely.

 

Joel Fine:

Thank you very much.

 

Drew Summins:

And thank you for your time.

 

Nadine Nye:

Have a good rest of the day.

 

Drew Summins:

You too.

 

Nadine Nye:

All right. Well, I’m just thrilled that this is ongoing. And again, keep me in the loop. If I can do anything else let me know. It’s all good.

 

Drew Summins:

This concludes our episode. Thanks for listening. Neither Joel, Drew, nor Tom are doctors or any other kind of medical provider. We do not and cannot provide medical advice, diagnosis, or treatment. The content provided in the program is for informational purposes only and is not intended to substitute for professional medical advice, diagnosis or treatment. Please do not disregard professional medical advice or delay in seeking help because of something you may have heard on this program, or any materials referenced in this program. We direct you to seek medical advice from qualified health care professionals, such as physicians or medical specialists.

 

Episode #1: Neuro Physical Therapist

Welcome to the Stroke Voice Podcast! Today, we’re thrilled to have Stephanie, a seasoned neuro-physical therapist with 23 years of experience, joining us. In this episode, Stephanie shares her expert insights on neuroplasticity—the brain’s incredible ability to adapt and grow. She’ll also dive into best practices for fostering new brain connections, tips for managing recovery expectations, and so much more. Get ready to be inspired and informed. Enjoy the show!

 


New Definitions:

Physiatrist: A medical doctor who specializes in physical medicine and rehabilitation. They help people recover from strokes, injuries, or other conditions that affect movement and daily functioning.

ADL (Activities of Daily Living): Basic tasks you do every day to care for yourself, such as eating, bathing, dressing, and using the bathroom. Stroke rehabilitation often focuses on helping you regain these abilities.

Restorative Therapy: Therapies designed to help you recover strength, movement, and independence after a stroke. This can include physical therapy, occupational therapy, and speech therapy.

Hemorrhagic Stroke: A type of stroke that occurs when a blood vessel in the brain bursts, causing bleeding (hemorrhage) in or around the brain.

Motivational Interviewing: A counseling technique where a therapist helps you explore and resolve feelings about change. This can help stroke survivors stay motivated to engage in therapy and achieve goals.

Pruning: A process in the brain where unused synapses (connections between brain cells) are eliminated. This helps the brain work more efficiently by strengthening the connections that are actively used.

Transcranial Magnetic Stimulation (TMS): A non-invasive treatment that uses magnetic fields to stimulate specific areas of the brain. It may help improve movement, mood, or other brain functions after a stroke.

University-Affiliated Medical Centers: Hospitals or clinics connected to a university. These centers often have access to the latest research, technologies, and specialized stroke rehabilitation programs.

Neurophysiological Events: Changes or activities in the brain and nervous system, like those that happen during recovery after a stroke.

Neurological Incidents: Events that affect the nervous system, such as a stroke or brain injury. Recovery from these events is often gradual.

“Track Where You Are Now and Where You’ve Been”: A strategy used in stroke recovery to measure progress. Keeping track of milestones helps motivate and guide the rehabilitation process.


Top Quotes: 
  • “The person who has had the stroke really needs to take control.”
  • “Our brains are never static; they are always changing depending on the input we provide.”
  • “Movement is huge.”
  • “The more steps you take, and the higher level of intensity you work at, the better your outcome will be.”
  • “Get your heart rate up.”
  • “The research shows that if someone participates at a 60% exertion level compared to a 75% exertion level, there’s a difference in their brain. Sixty percent is not quite enough to produce neurotrophic factors that promote new growth, but 75% to 85% is enough.”
  • “If someone is constantly failing, the brain will actually inhibit change.”
  • “Improvement is always gradual.”


Best Practices:
  • Sleep and rest.
  • Movement helps.
  • Avoid engaging too much in social activities.
  • Allow for breaks and pacing.
  • Use a treadmill for steps and repetitions to drive repetition.
  • Games or gamification can release dopamine, supporting new nerve connections and synapse connectivity.
  • Failure can hurt the brain’s malleability.
  • Introducing autonomy helps.
  • Visual imagery is effective and activates the brain in the same way as physical activity.
  • Avoid constantly putting the brain in overload.
  • Be aware of the effects of inactivity.
  • Track where you are now and where you’ve been to help you continue progressing.

Online resources:

Full Transcript

Welcome to the Stroke Voice Podcast! Today we’re thrilled to have Stephanie, a seasoned Neuro-physical Therapist with twenty-three years of experience joining us. In this episode Stephanie shares her expert insights on neuroplasticity—the brain’s incredible ability to adapt and grow. She’ll also dive into best practices for fostering new brain connections, tips for managing recovery expectations, and so much more. Get ready to be inspired. Enjoy the show!

 

Drew Summins: 

Question #1: Stephanie, talk to me about what you do and why you started doing it.  How hard was it to make this life decision to devote yourself to doing this kind of stuff, and what did it take to get to where you are today?  00:04 

 

Stephanie:

I started—well, gosh, it goes way back, right? My mother paid for me to go to massage therapy school. She paid the tuition for that when I was eighteen—pretty young. I did that and then used that to put myself through school. I enjoyed massage. I enjoyed helping people, but I felt like they were reliant on me and it was a passive intervention. I found that I loved doing that, but I wanted to do more. 

 

About the same time that I was exploring that, my husband—who was not yet my husband, quit his job as a loan underwriter and went back to school. He was exploring the medical field and looked at physical therapy. I actually thought, Wow, that sounds like the exact thing I’m looking for. I love teaching people the skills and the strategies to be able to help themselves.

 

Drew Summins: 

Question #2:  Being a physical therapist is not quite as much hands on, is that correct? It’s more demonstrating what to do?  01:28 

 

Stephanie:

It depends on what role you have as a physical therapist. There are many types of therapy and specialists. In the neuro world it has typically—I’ve been doing it for twenty-eight years, it has typically been very hands-on, but what we’re finding in the last five to ten years is that we’re too hands on, we’re too supportive. We need to allow people, especially people who have experienced strokes, to explore their movement and allow them to make mistakes and not create this perfect environment, but allow people to explore movement.

 

Drew Summins: 

Question #3:  You know, Stephanie, that strikes a chord with me because I’ve even said that at therapy, where you guys work—I’ve said to Kiki, Let me do—just let me do this. I said at home, Trina wants to help me all the time, Trina, just let me try. Let me try to do this. So it rings, yeah, I get that. 

 

I got to prove to myself. Just before we started this, I was up on a stepladder—being by myself at home, being on a stepladder, but I just got to try it. The other thing I learned—tell me if this makes sense. I’ve learned that if my brain goes into alarm mode, and we’ll talk more about this, it’s good. It means the brain is trying to figure out what to do. So hopefully it’s creating new pathways. I don’t shy away from things that make my brain go into alarm mode. So anyway, stroke recovery specifically—do you have a unique approach to that as a physical therapist?  02:13 

 

Stephanie:

Not unique, but because what I try to do is implement what the evidence is showing. As a therapist, twenty-eight years into this, in the last five to ten years, what has really gotten me excited is that there’s a lot more evidence that shows what works. Twenty years ago, we thought we knew what worked. We did our best, but we have far more research now that’s much more robust that’s showing what we should be doing. That, for me, is terribly exciting because I can be confident when I do things with people.

 

Drew Summins: 

Question #4:  Can you elaborate on what works?  03:47 

 

Stephanie:

For instance, high-intensity exercise—high-intensity training. It can be high-intensity gait training. What we mean by that is from the start—from inpatient rehab, from acute care, we need to get people moving and on their feet. One of the things they found is that not strengthening at that stage, strengthening or balance training or working on transfer training, that isn’t as effective as getting somebody up and walking—even if you need two people to do it, even if you need an overhead bodyweight support on a harness and a treadmill to do it. Getting those steps in and getting upright and moving and working our brains promotes neuroplasticity and recovery.

 

Drew Summins: 

Question #5:  Gotcha. I like that term neuroplasticity. Can you summarize what that means in two sentences?  04:40 

 

Stephanie:

Oh my heavens. [laughter] Neuroplasticity refers to—think of plastic. That’s where the name comes from. Plastic brain. It means you can mold it. You can change it. That’s what that means.

 

Drew Summins: 

Question #6: So you talked about acute intervention is key. What about people who don’t get acute intervention?  05:01 

 

Stephanie:

That is a key component at the acute or subacute stage on inpatient rehab, but it persists into more of the subacute and more chronic stroke phases.

 

Joel Fine: 

Question #7:  Stephanie, it’s Joel, question for you. Do you have a bachelor’s degree? Do you have an associate’s degree? What’s your education?  05:21 

 

Stephanie:

That’s a great story. I’ve been doing this for so long that—I was actually in the last graduating class, bachelor’s class of physical therapy school at the University of Utah. Since then, or that following year, for about five or six years, it became a master’s program. Now all of the physical therapy programs are doctorates. It’s much more commensurate with the level of work and the medical care we provide. It was an appropriate shift, but that also means my education was a lot cheaper than the doctorates that come out now.  

 

Drew Summins: 

Question #8:   So what is your official title? What’s an appropriate title for you?  06:10 

 

Stephanie:

I am a physical therapist. I am not a DPT, which is a Doctor of Physical Therapy. But what I did do is a Board Certification in Neurology. So I’ve been board-certified in Neuro Physical Therapy since 2003. We repeat the testing and all the certification requirements.


Joel Fine: 

Question #9:  You don’t have to tell me the amount, but you can make a living being a physical therapist?  06:37 

 

Stephanie:

Well, that’s an interesting question because I have students all the time that go through the doctorate program. I had a student once who went to USC and came out with $250,000 of debt.

 

Drew Summins: 

Ouch

 

Stephanie:

And, the yearly starting salary for a physical therapist doesn’t put a dent in that—paying back those school loans. It’s a tricky thing. People are very passionate about being a physical therapist and really want to do it. You can make a living, yes, but it can take a few years to get established. The private service, or the private section of physical therapy tends to make more, especially in the orthopedic setting. They see a lot more patients than a neuro rehab therapist does. For instance, I’ll see a patient for a full hour, sometimes two hours, whereas orthopedic counterparts in a private setting may see four to six patients in that hour. 

 

Drew Summins: 

Question #10:   How do you get anything quality done?  07:44 

 

Stephanie:

Well, I don’t know, but not all orthopedic clinics are like that. The hospital I work in—the orthopedic therapists spend one-on-one time for 45 to 60 minutes. 

 

Drew Summins: 

Question #11:   Hey, Stephanie. The name of the podcast is Stroke Voices. So specifically, somebody who has a stroke is going to work with therapists. There are two kinds—well, three, speech and language pathologists; occupational and physical. Can you briefly explain the differences?  07:59 

 

Stephanie:

We overlap a lot, and I feel like a good team—I’ve always been a part of an interdisciplinary team. I value that because we each have different training and perspective that we bring towards the patient care we provide. The most important thing to me is that there aren’t boundaries in what we do as therapists.

 

An occupational therapist typically will be looking at things like ADLs, which are activities of daily living, or IDALs, which could be like driving, or the things that allow us to branch out into the community, and upper extremity function, but not exclusively—vision, etc. Physical therapists—if you were to separate a body, the OT would have the hands, the arm, the PT would have the legs, the trunk, and the speech therapist would have the brain and the verbalization—things like swallow, cognition, things like that. But our team overlaps a lot. I’ll talk to the speech therapist about what they’re working on for cognition and implement that into physical therapy. And the same for OT.

 

Drew Summins: 

Question #12:  It’s like an integrated approach.  09:26 

 

Stephanie:

Very much so.

 

Drew Summins: 

Question #13: Okay, and then you have a medical doctor overseeing the team of therapists?  09:31 

 

Stephanie:

 A physiatrist—physical medicine and rehabilitation physician will usually oversee that. And we have folks that come to us from Intermountain or the University of Utah—their inpatient rehab centers. We have physiatrists that will work with them as well, but Doctor Taubin happens to be our physiatrist.

 

Joel Fine:

Question #14: Do most people in your specialty work for one hospital, office or whatever, or do they work for multiple?  09:56 

 

Stephanie:

Most of the time in one location.

 

Drew Summins: 

Question #15: When you get a new patient, Stephanie, like a doctor do you have to establish rapport and a relationship? Does it include goal setting, or is it just assumed that, Hey, we’re going to try to get as much back as we can of lost function?  10:09 

 

Stephanie:

That’s always in the back of my mind as restorative therapy, but it is driven by the person in front of me—what they are experiencing and what is valuable to them. Because, one of the things we know about stroke rehabilitation, or rehabilitation in general, is that the service needs to provide the instruction towards what that individual’s goals are.

 

Everyone’s goals are unique. I mean, I will hear common threads, I want to be back to normal. I want to drive. I want to be independent. Sometimes we’ll have people say, I don’t need to be independent. I’m fine with just this piece. I want to help make sure my spouse doesn’t have to work too hard. So, I want to get better at getting out of bed, but I don’t need to leave my house—I don’t care to. So, it can range greatly. 

 

If I’ve superimposed my goals, or what I think someone’s potential could be onto them we’re going to have a disconnect and we’re not going to work very well together. Sometimes I may use—if I feel like someone has a lot of potential, but they are not expressing goals that work towards their potential, I’ll sit back a little bit and develop that rapport on a more ongoing basis and sprinkle in educational components throughout our interventions to show them.

 

Drew Summins: 

Question #16:  Do you enlist the help of family members?  11:58 

 

Stephanie:

Always. It’s a team. The person who’s had the stroke is the team leader. They’re in charge. The therapists are here to support that individual and their family, or their social structure to obtain their goals. Everyone’s voice is important. 

 

Drew Summins:  

Question #17:  That’s an interesting statement that the person who has the stroke really needs to take control.  12:19 

 

Stephanie:

As an outpatient therapist, that’s particularly true. I have a little spiel the first time I meet someone—my goal for them, as their therapist, is to empty everything I know into their brain so that they can become their own rehabilitation therapist. So they’re not reliant on me, and that they know all the little things they do every day that could make a difference and help their recovery. That matters more than anything.

 

Joel Fine:

Question #18:  Question for you—are your patients of all ages, from a couple of years old to 80 years old, or what?  12:54 

 

Stephanie:

I treat adults, but I do see individuals, teenagers, and I have had patients who are adults who had a stroke as infants. So a stroke can happen across the age range and is very different depending on when that happens.

 

Joel Fine:

Question #19:  So no two strokes are the same, right?  13:28 

 

Stephanie:

Someone will come into the clinic and they will have imaging that says that they had a middle cerebral artery stroke, an MCA stroke–left side. That comes with certain generalized features, but the extent and the level of recovery is very individualized. Even within each of those types of strokes or areas. There are patterns as to how a stroke will affect someone from different areas. As you know with your cerebellum, that has a different pattern than the middle cerebral artery or the posterior cerebral artery may exhibit.

 

Joel Fine: 

Question #20:   Now there are how many different types of strokes? There are ischemic and something else, right?  14:20 

 

Stephanie:

There’s ischemic and there’s hemorrhagic. A hemorrhagic stroke is when there’s a bleed in the brain. An ischemic stroke is when there is lack of blood flow, when an artery is blocked. The recovery is different between those two strokes. 

 

Initially, a hemorrhagic stroke will need more rest acutely and typically have a faster recovery once that rest period—once that blood’s been resorbed and the physiologic response to that insult has started to improve, then we’ll see quicker recovery than someone who might have an ischemic stroke. 

 

But one of the best things, Drew—you gave me a list of questions, and one of your questions you gave me was, What am I most excited about in stroke recovery? I have to say, outside of neuroplasticity and understanding that better, is tPa—the ability, medically, to provide clot buster within the first three to four hours after a stroke. That will dramatically change. I can’t believe how much better I see people and outpatients coming in who have had the opportunity to have tPa who knew what to look for, and got into care quickly.

 

Drew Summins: 

Question #21:  Is that standard for emergency medical teams now?  15:49 

 

Stephanie:

It is. There are rigorous protocols, and Intermountain has a fairly robust program for that.

 

Drew Summins:   

Question #22:  And that’s an intravenous application or just an injection?  16:01 

 

Stephanie:

I believe it’s intravenous.

 

Drew Summins:   

Okay.

 

Joel Fine: 

Question #23: Stephanie, do you ever go to the emergency rooms, or to where the patients are, or do they all come to you as a physical therapist?  16:12 

 

Stephanie:

There is a bigger presence of physical therapists within the emergency room. That’s been a recent trend in my profession over the last few years. They’re looking at addressing things like back issues and vestibular issues, so dizziness will often bring a therapist in and they’ll evaluate that individual and recommend triaging. It’s an exciting time for a physical therapist to be able to contribute in that role. As a Neuro Outpatient Therapist, I do not participate in the ER visits.

 

Joel Fine:  

All right. Thank you.  

 

Drew Summins:  

Question #24:  So, Stephanie, you talked about the plastic brain. It seems to me when I first had my stroke that the general thought process was if it doesn’t happen in the first year, you’re done. There’s no more improvement to happen, but has that changed?  17:00 

 

Stephanie:

Yes, and that message depending on who you talk to may be different. There may be different medical providers that provide a message that may not be consistent across the board at this point, but I think it’s becoming more so. But if you think about it, our brains are never static. They’re always changing from the moment we’re born to the moment we die. Our brains are changing. It’s depending on the input and stimulus we provide. Stroke recovery is no different from that. Ten years later we can see change, it might not be as dramatic or as drastic as you’ll see, for instance, in the first three months after a stroke, because of the neurophysiologic events and what’s happening in the brain. But we will see, and can see change ten years later if the input and stimulus is correct or appropriate, and the area of the brain that you’re—the tricky part to that is that if you come in and say, I want to be able to type with the hand that has not been able to type, for instance, for ten years, there’s some movement patterns that are more complex and more challenging to get recovery, but you can get general recovery. 

 

Joel Fine:

Question #25:  Have you ever been surprised by the recovery of some of your patients—they’re in terrible shape, but by a miracle or whatever, they just improve like crazy?  18:43 

 

Stephanie:

I will say that what usually surprises me the most is when I do a medical chart review and I read about the extent of damage, and I look at the imaging for some of my patients before I meet them. What surprises me the most is I expect, sometimes, based on how that medical report looked—how someone will present. I always try to prepare myself for, How is this person going to come in here? Are they going to be in a wheelchair? Are they going to be walking? What level of assistance are they likely to need at this point, given this medical history? 

 

I can’t tell you how many times I’ve been surprised about how much better someone’s doing, even with dramatic levels of damage than what I expected. That doesn’t happen as often once I’ve seen someone and their evaluation. What can happen? There are a lot of prognostic indicators on how someone will recover after a stroke. What can happen is that with the hemorrhagic strokes, we can see a lot more variability in timing of recovery and amount. That can be very pleasing and pleasantly surprising to see when someone comes in very impaired and starts resolving.

 

Drew Summins: 

Question #26:  You mentioned that this is clearly a biochemical, what’s going on in the brain? Can diets affect the recovery, or chemicals in the brain affect the recovery?  20:29 

 

Stephanie:

I am not an expert on nutrition. I know enough to know that we need to support the neurochemicals in our brain appropriately, and not introduce more inflammatory types of diets into our bodies when we’re trying to fight an inflammatory process. But I couldn’t speak to recommendations on a specific diet.

 

Drew Summins: 

Question #27:  What about those feelings of euphoria you get from exercising? Is that good or bad—stuff like that? Can we do stuff in our daily lives that would promote brain healing?  21:07 

 

Stephanie:

Absolutely, 100% we can.

 

Drew Summins: 

For instance, what?

 

Stephanie:

[laughter] You’re speaking my language now.

 

Drew Summins: 

Alright, cool. Awesome.

 

Stephanie:

There’s a lot we can do to stimulate that. One of the things, initially, is sleep and rest. Our brains need recovery time and rest. We need to be able to identify one of the hard things that happens for people when they leave the hospital—they start to engage more with families and friends, and social environments. That stimulation in that environment can be very challenging and fatiguing. 

 

So, being responsive to that and allowing yourself the grace of recognizing that your brain is trying to recover and doing things in a much harder way than it ever did before. Allowing breaks and pacing can be a really important component to recovery, but then also how much stimulus you provide the brain, or what kind of stimulus–not too much and not too little.

 

Drew Summins: 

Question #28:   What kind of stimulus are you talking about?  22:26 

 

Stephanie:

Primarily—movement is huge. In order to promote that plasticity or that remodeling of the brain, we have to stimulate it. We’ve found, for instance, if someone is recovering the ability to walk after a stroke, the more steps they take and the higher level of intensity that they work at it, the better their outcome will be. That’s where, sometimes, the treadmill comes in as a really effective way to get more steps and more repetitions to drive that change that you’re looking for. 

 

The upper extremity functions a little differently than return of gait. There are a lot of studies that look at things like high-repetition upper-extremity movement, but that’s goal oriented or/and personalized. There’s new stuff all the time about gamification or games, and the role that games can play in promoting a positive neurologic recovery with the environment of releasing what’s called dopamine, or neurotransmitters that are supportive of nerve connections, new blood vessel growth, and faster synapse or connectivity—all comes with use and intensity. There’s components of that too. 

 

One of the things that we found is high-intensity aerobic exercise—getting your heart rate up promotes that neuroplasticity and actually releases some chemicals in your brain that allow new nerves to grow, new blood vessels to grow, and faster connections.

 

Drew Summins: 

Question #29:  So there’s a physiological response to the emotion?  24:26 

 

Stephanie:

…to movement and aerobic exercise. The research shows that if someone participates at a 60% exertion level, compared to a 75% exertion level. There’s a difference in their brain. 60% isn’t quite enough to produce these factors, these neurotrophic factors that promote new growth, but 75 to 80% is enough. That’s why we call it high-intensity.

 

Drew Summins: 

Question #30:  So what about the frustrations? Somebody has a stroke and they’re like, Whoa, this is terrible. My therapist wants me to do this—I can’t do it, and they get frustrated. Is that good or bad?  25:00 

 

Stephanie:

It’s challenging. Part of the role of the therapist is to understand and come to that individual and where their frustration level lies, and support them to move beyond that, or maybe show success initially. That’s where, also, that dopamine and the sense of success promotes neuroplasticity. If someone is constantly failing, the brain will actually inhibit change and positive change. Constant failure is not good for the recovering brain. Success is good, but within that success there has to be challenge. 

 

A therapist’s role is to understand the cognitive abilities and levels of the person in front of them, and understand how to maximize that individual’s challenge point and know when they’ve gone too far to back off. Oftentimes, a really skilled therapist will use motivational interviewing, or self-efficacy strategies, allowing the individual some control and autonomy, and that will produce more success as well.

 

Drew Summins: 

Question #31:  So it’s custom for each individual?  26:35 

 

Stephanie:

Very much so, and adjusting, and a moving target we hope. Right. As someone gains more success and more confidence and more self-efficacy, we can increase that challenge level. We can ask the person in front of us, our stroke patient, what they think they can do. The more we can bring that piece in, that autonomy, the better we’re going to serve that process of neuroplasticity.

 

Drew Summins: 

Question #32: So as a stroke patient, is there any efficacy to visualizing?  27:05 

 

Stephanie:

There is evidence about visual imagery. Primarily we see a lot of research in sports medicine arenas on that. But there has been some evidence that can facilitate some portions of the brain and stroke recovery. I ran across an article where it talked about when that’s most effective and it seems to be most effective earlier on, but it can still be useful as a tool or a strategy. If someone’s got a huge barrier to achieve a specific movement or to participate in something to help the confidence. It seems to light up the areas of the brain in a similar way as the actual activity when someone really learns how to use visual imagery effectively.

 

Joel Fine:

Question #33:  Is there anything that really frustrates you? As far as I mean— patience. Patience can be a pain in the ass, I understand that, but I mean, is there anything that frustrates you as a therapist?  28:03 

 

Stephanie:

I think the hardest thing for me as a therapist is when I work with an individual who I can see their potential, but they cannot. I can’t quite reach them at that stage of their recovery, or their coping, or their grief for their loss of their role and identity. I may not be able to reach everyone at every stage of that, and I need to give people time to be ready to adapt and be resilient. It’s hard when I know what someone might be capable of, but not have the motivation or the ability to work at it. That’s probably one of the hardest things.

 

But as far as just what promotes the best outcome for someone, if I were to look at what environment can provide an individual with the best possible chance of greatest recovery—and there are a lot of contributing factors to that—where the stroke was, how big the stroke was, other comorbidities. Then personal factors play a role there too, like what’s the environment someone lives in? If someone lives in a five-story home with stairs everywhere, they’re going to be isolated into one area and lose independence, which then is a barrier to their restoration recovery because they can’t do as much for themselves. 

 

Environment can play a role in that. The support, the social support people have, that’s a hard one. If I see someone with a lot of potential, but the social support doesn’t provide them with the environment to be able to maximize their potential. It’s quite sad because I know what other people have been able to achieve with a supportive environment.

 

Drew Summins: 

Question #34:  I imagine there’s only so much you can do with respect to that.  30:20 

 

Stephanie:

There’s a lot of education and training, and we often invite caregivers to participate. If I understand what the barrier is with this specific caregiver, or a specific individual or relationship, we may be able to navigate that together or problem-solve as a group what that could look like to eliminate that barrier, but there are many barriers we cannot. So,  social, demographic and economic barriers are so hard to see.

 

Drew Summins: 

Question #35:  What do you expect from your stroke patients as a therapist? It is obviously participation—but hours of the day spent doing exercise, let’s say?  30:57 

 

Stephanie: 

Well, here’s what I tell people—this is part of my spiel when I first meet people on your question. The other part of that is that their recovery depends on what they do. Not coming to therapy for an hour or three hours a week. What their recovery looks like will depend on what they do all day long. It’s a transition because a lot of times someone with a stroke is coming into outpatient therapy from the hospital where they’ve had a lot of support, a lot of nursing care, or a lot of therapy. 

 

The therapy has been three hours a day. It’s intense and they feel pumped because they’ve made great changes because they’ve worked so hard. Then they go to outpatient therapy and they’re at home, which is very exciting, but things tend to slow down a little bit, or it’s not as intense. That can be really frustrating for someone. What we try to do is, again, build that self-efficacy and make sure they’re getting lots of repetitions of movement in. 

 

As far as an amount of time, it’s so variable depending on the person. Some people come in and they may be doing too much. I may have to pull them back a little bit because they’re constantly putting their brains in overload. Some people find it so hard to get up from a chair that you don’t want to do that, it’s exhausting. Then most people, many, many people, one of the biggest complaints that I hear after a stroke is fatigue. That is very debilitating, because you don’t feel like you have the energy to be able to get up and do the things you want to do. So working through that and encouraging people that if they can work through that and get to the other side of that, there may still be fatigue, but by exercising and being active, they’re less likely to have a lot of the secondary effects that come with inactivity and deconditioning that promote more fatigue.

 

Drew Summins: 

Question #36:  You know, as far as managing expectations for people who have strokes. Are you going to see like, Wow, all of a sudden my arm works. Is it going to be instant or gradual, typically?  33:10 

 

Stephanie: 

That is a lovely question. It is always gradual, and very difficult and frustrating for individuals. One of the things we know physiologically after a stroke is that at about three months, the neurophysiology changes slows down a little bit. At about six months we actually see the brain involved in what’s called pruning, which means it has tried to grow new connections, and now it’s kind of peeling them back a little bit and taking away the ones that aren’t getting used. 

 

I have had some people come to me at six months and say, Why am I not doing as well as I was three months ago? It may be because they may not be as active and doing as much as they could be to get the repetitions in that they still need to do, but it’s hard to sustain that energy level for six months or a year. It’s really hard to sustain that level of dedication to your rehab. You want to just be normal and live again.

 

Drew Summins: 

Question #37:  I’m going to move on. Do you have strategies or suggestions for people to understand that they’re getting better, because with gradual changes, gradual improvements, sometimes it’s hard to recognize that there’s any improvement at all?  34:37 

 

Stephanie: 

There are. I tell people I work with all the time that you live with this every second of every day, and every day of the week. I come into your life an hour here and there and can observe from a perspective that you don’t always have. That’s why we use testing also, to help. There are balance tests, walking tests that we use—short-distance speed walking. There’s dual task tests we use where someone is timed to get up from a chair, walk around a cone, come back and sit down. Then you can add a cognitive task to that. 

 

So, there’s all these tests we do as therapists that tell us what people need, but also help give feedback to the individual on, Look where you started and look where you are now. I often tell people that video, or journaling is always a good idea—caregiver’s videos of where you’ve been and where you are, can really help.

 

Drew Summins: 

Question #38:  Personally, I can’t journal. I just—I don’t have the discipline to do that. It doesn’t interest me, but my wife has taken videos for the past three years and that’s eye-opening to me. Absolutely eye-opening.  35:59 

 

Stephanie: 

And you’re going to get frustrated, right? If you’re not where you want to be. It’s hard to get up every day and keep fighting that fight if you don’t feel like you’re where you want to be. If there are times when you feel like, Am I any better? To be able to have that feedback with an objective test, or a video is very powerful to keep you engaged and say, Okay— perspective here, I can do this again.

 

Joel Fine:

Question #39:  Do me a favor and talk about caregivers. I think they have a pretty important role.  36:41 

 

Stephanie: 

They do, and it’s individual. Just like every person’s stroke is different—their situation and their social support, or caregiving experience is different, and their relationships are different. I could give you some general thoughts about the caregiving role in recovery of a stroke and what’s effective and what’s not, but it would be very general because there are every level of variation in an individual’s relationships. I will say that the care partners, the support people, the caregivers that can adjust their expectations as people progress, do better than someone who comes into it expecting one thing and is not very flexible about how things are going to change. 

 

For instance, oftentimes caregivers are quite traumatized by the experience that their spouse or care partner has experienced. Sometimes we’re not sure if someone is going to survive their stroke. Sometimes I’ll see caregivers who are overprotective and do too much for an individual, which doesn’t allow that person to explore and progress, but promotes an environment of learned dependence which is not effective, or helpful for the best recovery possible, and those situations are tricky. Oftentimes I will bring those caregivers into the treatments, constantly, to show them what needs to happen for this individual, what they can do and what their capacity is. Then there can be every variation on that, and beyond. 

 

The role has changed for both individuals. If there’s a spouse situation with a partner, the individual who has had the stroke may not be the same person that they married or initially fell in love with, and there could be pretty drastic changes in that relationship, and those roles and those are very challenging. I think people who are open to counseling and can get some support together… 

 

Drew Summins: 

Question #40: When you say counseling both the patient and the caregiver?  39:23 

 

Stephanie: 

Yeah, I think both could benefit. Sometimes separate, sometimes together. I’m not an expert in that area, but that’s not always the case. Some people navigate without counseling beautifully. Some people, I think, need a little bit of help to redirect their expectations of what their situation is and how to adapt or cope with it. It’s a grieving process for everyone.

 

Drew Summins: 

Question #41:   Yeah, it is not easy for sure. So, Stephanie, what do you see coming down the road in the future? What are you hoping to see—medicine or therapy or something? Is there anything on the horizon that you’re crazy excited about?  39:52 

 

Stephanie: 

There’s a lot, a lot going on right now with transcranial magnetic, or direct cranial magnetic resonance. There’s a lot of treatment interventions that are showing some promise, but they’re not available across the board. They’re more available within the research world than they are in real life. I’m hopeful that we can find ways to stimulate those neurotrophic factors faster and sooner, but we are a ways away from that.

 

Drew Summins: 

Question #42:  So if someone who had a stroke wants to get involved in experimental therapy, how would they do that? Are there resources available?  40:48 

 

Stephanie: 

There are. I usually just Google and get online, or contact—the University of Utah has a very research-oriented hospital and has a lot…

 

Drew Summins: 

Question #43:  Let’s say, anywhere in the US?  41:09 

 

Stephanie:  

A lot of times university-affiliated medical centers will have more research available to them. I would connect with a stroke center and see what research they’re doing.

 

Drew Summins: 

Question #44:   Is that also a good way just to find therapists? Let’s say you’re in rural America somewhere. You’ve had a stroke, but you want to find good quality PT, OT, SLP.  How do you do that?  41:28 

 

Stephanie:  

That’s tricky in a rural setting. Living in Utah, there are a lot of people that live an hour and a half away from a hospital or two hours away from a hospital. The therapist’s role in those communities is a generalized role. You don’t see as many specialists within the therapist world in those communities.

 

I would contact the clinic and ask if I could interview the therapists. If there are therapists available, and I would be looking for, How many stroke people do you see, and what type of treatment strategies do you use? What do you know about high-intensity training? What do you know about aerobic exercise and stroke? I know enough to ask those questions.

 

Drew Summins: 

Question #45:  Yeah, you know, when a stroke happens it’s shocking. You don’t know where to go. It’s a new pathway that’s been laid at your feet. You don’t know what to do, where to go. I’m just trying to—if people listen to this, where can they start?  42:29 

 

Stephanie:  

I think people who are discharged from an inpatient rehab facility have a lot more support than someone with a less acute, less dramatic stroke in terms of—usually you’re discharged from the hospital with follow-up care with a physiatrist, or a physical medicine and rehab doc. Usually. In the experiences I’ve had, that’s the case. Those physicians will be looking out for what kind of therapy you’re getting and who those therapists are. They may be able to direct you towards the right care where someone who was in a hospital with an acute stroke, but not bad enough that they required an inpatient stay but are able to go right home, may have deficits and frequently do, but don’t have the support from a physiatrist. They just have their primary care physician who is out of their element—that’s not their specialty. I actually see quite a few people with more mild strokes who still have deficits, who don’t get the care they need.

 

Drew Summins: 

Question #46:  Online resources. Do you know any offhand?  43:49 

 

Stephanie:  

The American Stroke Association is a good one.

 

Drew Summins: 

Oh, okay.

 

Stephanie:  

I think the online resources for stroke are a little more dispersed than some of the other areas I work with in neurologic rehab, for instance, since Parkinson’s has a huge online presence, stroke is more kind of broad, and I’m not familiar with as many resources in the stroke arena.

 

Drew Summins: 

Question #47:  But in the general sense, this is neurologic rehab—what you just mentioned—for strokes. 44:22 

 

Stephanie:  

Yeah. We came out of COVID with some very interesting experiences, but one of the things as a physical therapist I fall back on is YouTube videos for exercise. Some amazing things that came out of COVID that people can do in their own homes that follow—at any level, from a chair to standing, to high-intensity can be more engaging and interactive than a list of exercises to do, that can promote a little bit of moderate to high-intensity cardio, or some agility and coordination, or general strength. Some of those kinds of things are great resources to look into.

 

Drew Summins: 

Yeah. I’ve personally, I found YouTube to be an incredible value.  

 

Stephanie:  

It can be overwhelming. For some people it is. We all have a different comfort level with technology.

 

Drew Summins: 

Question #48: This talk has been absolutely incredible. I can’t thank you enough. Anything else you want to add?  45:28 

 

Stephanie:   

I’m so excited that you both are putting this podcast together and your voices…I’m looking forward to hearing more from your voices and the voices of others who have so much to share. We can all learn so much from each other, and I think the more open we are to a variety of experiences, the better we can all be together to work towards better care and better outcomes. I’m just grateful to you both for doing this project.

 

Joel Fine:

If you feel that you want to come back on and say more, that’s not an issue at all. 

 

Stephanie:

Okay. 

 

Joel Fine:

We’d love to have you to impart your knowledge and your experiences.

 

Stephanie:

We could dive deep…

 

Drew Summins: 

We could ask more technical questions and put you on the spot more.

 

Stephanie:   

Or we could dive deep into neuroplasticity if we wanted. This is a lovely platform. You both are amazing, and I’m grateful to be able to share the little bit of knowledge I have.

 

Drew Summins: 

Fantastic, Stephanie.

 

Joel Fine:

You have quite a bit of knowledge. You really do. 

 

 

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