Living with Spinal Cord Injury - Resilience and Better Health Outcomes

♪

From the Medical University of South Carolina,

this is Science Never Sleeps,

a show that explores the science, the people,

and the stories behind the scenes

of biomedical research happening at MUSC.

I'm Gwen Bouchie.

As the highway for messages between the brain and body,

the spinal cord is key to how we feel sensation

and move our bodies.

An injury to this critical pathway can be life-changing.

Spinal cord injuries can result from damage to vertebrae,

ligaments or disks, or to the spinal cord itself.

These injuries can impact all areas of a person's life,

often causing full or partial paralysis

and a range of complications

from chronic pain to respiratory failure.

At one point, living 40 years with a spinal cord injury

was nearly unheard of, but now, more and more people

are reaching and exceeding that milestone,

making understanding ways to improve the quality of life

even more important.

Our guest today is Dr. James Krause,

distinguished university professor

and the Associate Dean for Research

in the College of Health Professions

at the Medical University of South Carolina.

Motivated by his own spinal cord injury

over 40 years ago at age 16,

he's committed his adult life to understanding

the long-term consequences of neurologic injury

on health, quality of life, employment, and longevity.

Dr. Krause leads research

in a series of interrelated studies

to identify psychological, behavioral,

and economic risk factors

of secondary health conditions and mortality

among people with neurologic injuries,

emphasizing spinal cord injury and traumatic brain injury.

Stay with us.

♪

Dr. Krause, welcome to Science Never Sleeps.

Thank you very much.

So as we get into this conversation today,

I think it's important that we talk about defining

spinal cord injury and what that means.

So can you talk about spinal cord injury a little bit?

A spinal cord injury is literally

an injury to the spinal cord.

And so it typically results in paralysis,

a loss of sensation below the level of injury,

and that can be in varying degrees.

So you will hear terms like incomplete spinal cord injury

or complete spinal cord injury.

So an incomplete spinal cord injury

is when there is some preserved neurologic function

below the level of injury.

So someone with an incomplete injury

may have a cervical injury very high on the spinal cord,

and whereas one person with a complete injury

may be paralyzed even in the arms,

upper extremities,

that individual may have some paralysis in the arms

but still be able to walk.

So the incomplete injuries

are not easily described in terms of a norm.

Now, when there is a complete injury,

the level of function is really,

everything is shut off below that level of injury.

And so, the more severe injuries are the ones that are complete

and that occur higher in the spinal cord.

We do see different patterns.

Younger people, a little more likely

to get injured as a result of activities that they do,

sporting activities and such,

motor vehicle crashes still number one,

and then, as people get older,

injuries sometimes occur among people that are elderly,

and those are more likely to be the result of falls.

You mentioned that young people may experience

these types of injuries,

and I want to bring that to your personal story,

that you are a researcher in this space,

but you're a researcher who this issue

has touched their life very personally.

So would you mind talking about that a little bit

and how it brought you,

how you ultimately found yourself in this space

of looking at spinal cord injury and outcomes?

Sure.

Well, when I was 16 years old--

I'm from Minnesota originally,

if you can't tell from the accent,

it's a little bit of a mixture of Minnesota

with about 30 years of living down South on top of it.

But yeah, I was 16 years old,

I dove in an area that was shallow.

It's actually a fairly common injury

in Minnesota and areas where there are a lot of lakes,

lot of water, and so I was paralyzed.

I have a C4 injury, which is very high up the spine,

so I'm able to use my right arm a little bit enough to drive,

can't use my hand, or no function there.

My left side is no arm function,

and then I'm paralyzed from the shoulders down.

So I've actually been living with the injury

for over 50 years, and, you know,

that's an incredible milestone.

And so, what I like to remind people

that 50 years sounds like a long time,

but that's 18,263 days.

-Oh, wow. -So you think about each day.

Each day, I need help with everything,

everything from getting out of bed, into bed,

food, everything.

And so, for people with spinal cord injury,

it really is a one-day-at-a-time,

but there's never a day off.

There's always, you have to do things right.

Even people that don't need others' assistance,

they are very vulnerable or more vulnerable

than if they did not have the cord injury,

and it requires a lot of vigilance in what they do

to make sure they're shifting weight,

you know, drinking the right amount of fluids,

just sort of everyday things

that are different for the average person.

The average person can have a bad day

and do a lot of bad things in a day

and not have results beyond the next day,

and that's just different for us.

So to that point, as people are living longer

with spinal cord injury,

I imagine we're beginning to think more

about how people can live really satisfying lives,

thriving despite the injury that they may have.

Can you talk a little bit about what that looks like?

How can people survive and thrive

with spinal cord injury?

Well, the first part is the survival.

So the first part is, again,

if you think of a pyramid, people talk about a pyramid

of hierarchy of things, needs,

and again, food and water and those sorts of things

are most basic,

and so you really have to meet your basic needs

before you can get to the other life needs.

And so, for people with cord injury,

the things that we need to do

are really, in many ways, the same.

We're looking for complete lives,

we want to work, we want to participate,

and so we see this, with people through our research

and through the people that we know,

is that the goals are very similar

but the process by which we get there

and the barriers are significantly different.

So there are a lot more barriers even beyond what's physical.

There are architectural.

Certainly, we face a lot of added things within society

where it's very difficult to do things like travel,

more difficult than it needs to be,

and there are just some very basic accommodations

that are hard to get.

And so, those things are challenging.

And I think that's a voice that we're hearing even more

as the disability community comes forward and advocates

for those--the things that the community needs

in order to live a full life

that extend beyond even what may have been provided

in the Americans with Disabilities Act.

So, the ADA was a really great thing,

it was very important.

There's not always a lot of enforcement,

and the things that, oftentimes, people with a cord injury

or other disability face

are things that most people wouldn't believe.

They wouldn't believe the simplicity

of going to the mall

and not being able to get tested for glasses

without getting out of a wheelchair

and not having a place where you can really even get

into the chair to get eyes tested.

Something as simple as that,

and I'm going from personal experience.

Traveling.

People will say, well, they can't take your chair

on the plane, you can't sit in your chair.

We have to go through processes of transfers, the equipment is--

It's not a matter of if your equipment

will get damaged, it's when, how many--

If you fly five times--

I haven't flown in over ten years,

and this is a lot of the reason why--

but the experience is very difficult

to get your wheelchair in and out

without it getting damaged,

a lot of people get injured having to transfer.

Even hotels, they've gone to pedestal beds.

So a lot of times, people think it's really fancy equipment

people need, or it's really expensive,

but I could go to any mattress store in the city

and I could get a Hoyer lift under any of those beds.

It's just standard frames, but hotels have gone,

even in their accessible rooms, quote-unquote "accessible,"

and there's a pedestal frame.

You can't call a hotel and ask them.

They don't give you the right answer.

You often can't get a hold of anybody at the hotel,

so it's late at night, you have a handicapped room,

and it's on a pedestal frame.

You can't get just a typical Hoyer lift under it.

So it's really the little things.

I don't think most people would think,

"Gee, I can't go to the mall and get my eyes tested?

That doesn't make sense."

And a lot of it, you know, just doesn't make sense.

It's not, again, for a lot of people,

it's not having a bathroom that goes through a ton of code,

it's very simple things,

and often you just can't get through the front door.

So, and if you can,

a lot of times you just can't get

even the simplest services,

and that's what I would want people to know.

It's not, again, all the huge, expensive things,

it's just the things that they would never think of

that shouldn't be that way.

Dr. Krause, tell us what your research

is focusing on in the space of spinal cord injury.

Okay.

We focus--and I say "we," we have a team of people,

great people, working on the research.

We rely on our participants, literally thousands of people,

to respond and help us with the research.

I feel like it's a partnership,

and we focus on what the outcomes are

in the community, what happens to people,

what the difference is between--for people

that go through and have limited health complications

versus those that have more.

We try to identify those factors that make a difference

so that we can raise awareness and teach people,

both professionals and stakeholders

with SCI or their families, some of the things

that are important if they're going to survive.

So it's not so much documenting what happens

as trying to find out why things happen,

and then providing the information

and resources that are needed to make a difference.

And so, along those lines, there are some differences

in the approach and the rationale

that you've taken that's kind of necessitated

by studying newly injured versus folks

who have been living with injury for many years.

What does that difference look like?

Well, we actually...

If they have a spinal cord injury

and we're able to identify people,

we look at the entire time frame.

So we have a study in South Carolina,

South Carolina statewide database,

where we try to contact everybody,

we do contact everybody for whom we get good information

on where we can locate them,

and we identify what happens to them

within the first, you know, about two years after injury,

and then we follow them thereafter,

particularly during the first five years,

and then we have studies that,

one that has gone on for literally 50 years.

It was started by my mentor in Minnesota.

So the issues are different to transitioning to the community.

People are learning about their spinal cord injuries.

They're trying to do things like get fundamental services.

Attendant care is extremely important

for a lot of people, very underfunded,

but also hard, especially in the current labor market,

to get people to do things

that literally can save people's lives.

As you go through time,

people face different challenges.

If they're able to obtain employment,

then they're trying to retain it,

and like everyone else, they want to go up a ladder.

They don't want to just go, do a job that's minimum wage

that they can do a few hours and maintain their benefits.

They want to improve throughout their lives,

and those things are going to make a big difference

as to how long they survive and how well they do.

And thinking about long survival,

one of the things you specifically

have been looking at is longevity,

and what are the things that can encourage longevity

but also may impact longevity negatively?

What are some of the things that you've discovered

through your research?

Well, not surprisingly,

we find that they're doing things that are risky,

frequently going out drinking.

Five or more drinks is sort of the research cutoff,

but if people are going out drinking a lot on occasion,

they're going to raise their risk

of further injury, new events,

and if they're taking a lot of prescription medication

for a lot of things like pain and sleep

and even their affect

for, you know, avoiding depression or anxiety,

if they're taking a lot of things

and they're kind of doped up, their risk of injury,

risk of other things would increase.

So those things carry over to mortality and survival.

So if you can understand what affects people's survival,

where you can't survive if you're doing these things long,

then you can learn about many things along the way.

And so, when people particularly are young,

those factors are important,

and then as people get older,

it seems that there are other sets of factors

that become more prominent,

so, at least those factors that I'll mention

are prominent later within the longevity process,

and those are things like earning a good income,

high education, being employed.

Those things relate to how well or how often

people get out, staying active,

so it's an entire lifestyle chain of events.

So if you think about all the barriers to employment,

then those are things that can hold people back

for their longevity.

A lot of people do work after a spinal cord injury.

I will say one of the most interesting things

to me about the COVID pandemic, and this is not specific to SCI,

but the employment rate for people

across disabling conditions is higher than it's ever been.

So, at a time when we're having trouble retaining workers,

people have left the labor force,

I think it was the Great Retirement

or whatever it's been called,

it's created opportunities in people with disabilities

who have never gotten the opportunity,

are now working at a higher rate than ever previously,

and that's very well documented.

So those sorts of things are very important.

And we might think, "Sure, that makes sense,"

because these are things that lots of people want,

to be able to be successful in a career

or to be connected to community,

but if we think back to what you were talking about before,

there are a tremendous number of barriers that exist

for folks who are disabled

in order to access those kinds of things

that can help them live longer, healthier, happier lives.

There really are, and so, some of the barriers

are inherent to the spinal cord injury

or disability, but a lot of them aren't.

And so, for people with spinal cord injury,

because they need some medical care,

for the most part,

certainly people that have attendant care,

they run into the issues

of financial and medical disincentives,

and what those are, if somebody goes and works

beyond a certain number of hours

or a certain--excuse me-- I would say income level,

then they start losing their benefits.

So, the benefits are critical.

People need attendant care.

If you need that, then that's the number one priority.

People will end up working a certain level,

but they'll never get to what we study,

which is quality employment,

quality employment throughout the work-life cycle.

So it's not going to a fast food restaurant

and working at that job

without the opportunity for improvement.

So that's what I think everybody in life wants.

We want to improve and maximize what we're doing

or at least continue to do something meaningful,

and a lot of the opportunities for people with disabilities

and spinal cord injury are really at a level

where it's part-time employment, needing to keep the benefits,

and that really is a problem.

So when you are able to identify the things

that are positive drivers for longevity,

what is the next step in order to make an impact?

That's an excellent question and very difficult.

It's very difficult to impact outcomes

such as longevity.

What we do is we develop tools,

people can use one of our online calculators

and they can enter what they do behaviorally,

certain things, and they can see their risk of things

like unintentional injuries,

they can see their risk that they may need

a certain sort of medical treatment

like hospitalization.

So we educate professionals as to what these factors are

and how they relate to the adverse outcomes,

and we're talking about mortality

or enhancing longevity,

but it's really avoiding hospitalizations,

not repeatedly needing to go to emergency departments,

avoiding unintentional injuries.

It's a whole series of things that we look to improve,

so we do that by educating and training professionals,

we do it through sharing information with stakeholders,

putting information where they can get it,

and we've developed some tools

where someone can enter their characteristics

and see the risk of certain outcomes,

and then they can re-enter

if they were doing different things,

how would it change the risk?

And then it's just, at that point,

up to them as an individual.

They can weigh the risks of different things

and decide what they want to do, but there's no single answer.

We always hope policymakers will pick up our results

and see the relationships between things like employment

and longevity and say, you know,

if you can double someone's longevity,

which we literally have seen differences in longevity

based on economic characteristics

that are doubled, then that's worthwhile,

that's important.

So we use longevity as a bit of a window to other things too.

Because it's encompassing of so many characteristics,

risks, these kinds of things.

I would imagine it does give you a pretty good glimpse

of what's going on.

It does.

So we've talked about employment,

and employment's very important,

but what I really feel is important

with a spinal cord injury, really for most people

just in life and applies to cord injury,

is that people need to find purpose in their life.

So, for one person, it may be going to work

every day or doing-- maximizing their employment.

For another person, it may be marriage,

it may be children, family.

For another person, it may be something spiritual.

It may be faith-based.

Or it may be volunteer activities.

But having something that drives people,

that gets them sort of out of bed,

out of the house,

or gets them engaged in something

is very important.

There are so many things that your research has identified

as potential risk factors,

including emergency department visits,

hospitalizations,

unintentional injuries.

But what I'd like to ask you about

is pain medication and opioid use,

because I think that's also another big conversation

that's happening nationally

just around the use of opioids generally.

So I'd love to hear how opioid use

affects people with disabilities

who might be utilizing those for pain management,

and what your research has yielded about them.

So we actually have a major project

on opioid use and related problems right now.

So that's the good news.

The bad news is that we are in the middle of it.

We don't have a lot of data

from that project specifically yet.

So we're excited to get to where we get enough data

where we can look at those results,

and we'll be doing that shortly.

But I would say with opioids and disability,

it's complicated.

So the complication is that

we see things, like in our focus groups,

where someone that's had a long list of problems

will say, "You know, they throw them at you."

That was a direct quote.

So with spinal cord injury,

if you go to get care,

and you don't have a specialty hospital,

if you don't have someone that's knowledgeable

of spinal cord injury,

sometimes I think they want to give you something,

and you know, opioids can be a simple way

of treating people.

"Well, I don't know what else to do,

so I'll prescribe opioids."

So we see that.

It's complicated because people have had complications.

We've studied the unintentional deaths

due to drug poisoning, which is basically

prescription overdose.

People, you know, literally dying,

that's been observed in the general population.

We see those same high-risk factors,

that certain people are more prone to that,

and there are folks that are usually

doing the riskier behaviors.

But there's also the problem that spinal cord injury

is associated with a lot of pain for a lot of people.

So,

I'm not an expert on pain,

and so if I give technical terms,

I always mispronounce it, but basically

there's the type of pain that most people think of.

You know, it's joint pain, muscle pain.

You know, it's basically--

you know, whether it's overuse

or something's been-- you know, a muscle pull,

whatever those things are.

Typical back pain.

But with a spinal cord injury,

you get neuropathic pain.

What neuropathic pain is,

again, without a technical definition,

but you know, it's a burning.

It's like--

(stammering)

I heard it compared to an amputee

that can feel the limb that's gone,

and there is a tangling

as if you can feel the limbs,

and as if you had sensation, but you don't.

So it can get very extreme for people

and it's difficult to treat.

So one of the things with cord injuries,

and other disabling conditions,

is people have a lot of complications,

so simply taking away opioids

in and of itself

is not necessarily going to lead the individual

to have a higher quality of life.

So my perspective always is

that we need to educate people,

and then at some point,

they're going to decide.

They're the only ones that can weigh--

that know what's going on with them.

They're the only ones that, you know, feel the pain.

So, you know, while as a society we are trying

to decrease reliance on opioids

and all the problems we're all aware of,

and we see that maybe in magnification

with cord injury.

You know, I would also say that,

you know, there's a lot of people

that are like, "Hey,

don't take my opioids away."

Mhm.

It's not necessarily that they're not well adjusted,

but it is complicated,

and there aren't a lot of good treatments

for some of the things people with cord injury face.

Right.

The clarification about pain is important as well

because for folks

who might not consider this quite often,

you would think with spinal cord injury

we're talking about paralysis,

therefore we're talking about not feeling anything.

But as you were just saying, that's often not the case.

There is something that may be felt there

and it can be intensely uncomfortable,

if not very painful.

That's exactly right.

So you know, can affect sleep.

There are a lot of complications with it.

We do see--

I would point out within our research,

I remember doing a graph at one point,

and this was from our study

of people here in South Carolina,

where we classified people according to

the level of pain they said they had,

and then we looked at depression scores.

At least in the one analysis,

at one time we've collected more data,

I remember literally there being nobody depressed

in the no pain--

essentially no pain group.

It was really profound to see the relationship

of pain and depression.

So I actually think,

if I sat back and I thought about it long,

I might think of other things,

but pain when it exists

in its extreme

is so debilitating for people

that we really see where people just,

you know, can't do many things

when it's in its extreme.

So, and it is, again--

It's hard to give a prevalence estimate.

Prevalence is just what portion of the people

have pain at a certain level,

but it is very prevalent.

We do see higher levels of depression,

not uniform, not always super high,

but more than you'd expect in the general population.

Mhm.

When pain is there, that's a huge factor,

and that's why we're doing the study

we're now still in the early stages of.

Well, we'll have to have you back

when you've got some results from that

and we can talk about it,

because I'm sure it's going to be

not only telling, but hopefully will also have

some application to, again,

your, you know, longevity work

and helping folks live better.

I believe it will.

It's--different issues come up over time,

and this clearly is one that's caught society off guard.

Mhm.

We talked about pain management,

but are there other health conditions

that often result in the long term

from spinal cord injury?

I would imagine these are things that we're continuously

trying to understand, if not work towards prevention?

That's a great question.

So I'm going to put it within the context of pain.

So first of all, when you think of pain

that is a chronic condition--

you know, it's something like chronic fatigue,

it's something that occurs regularly,

but it's not life threatening.

With spinal cord injury,

what we really have a concern about

is what we call secondary health conditions.

I conceptualize them

maybe a little differently than other people.

Pain would be consider a secondary health condition.

But I differentiate acute versus chronic.

So an acute secondary health condition

is something that can develop any time,

can happen very short term,

and it can lead people to be in the--

to the ED hospital,

or you know, it takes a lot of lives.

Those things that we see are--

the main one that we see are pressure ulcers.

Pressure ulcers, in any prevention...

...course, or something that would be taught

in rehabilitation, that's always number one.

Pressure ulcers typically result from,

well, pressure.

There's sometimes now-- I guess we use the language

"pressure injuries."

The language changes over time.

But someone sits too long,

they need to move,

they need blood to flow differently.

They oftentimes can't feel it,

so they don't know they're getting pressure.

Once it starts, it can get pretty ugly.

It can go all the way.

There are four grades of pressure ulcer,

from very superficial to all the way to the bone.

So what we see with acute secondary health conditions,

urinary tract infections are another example.

Really any kind of infection.

Something that can escalate quickly.

So those are of great concern,

both to quality of life and to longevity.

We did a study of negative health spirals,

and we have a lot of fancy terminology

we developed from it,

but the notion, and it's really important,

is something bad happens.

Doesn't have to be terrible,

but something really bad happens.

Somebody takes a fall, maybe fractures a bone,

or they're using their wheelchair,

they're transferring.

They may be something like pulling a muscle,

damaging a rotator cuff.

But something affects their routine,

and then they don't do things quite the same.

So they have this injury

or they have something that's occurred, a fracture,

or it can be something like

the start of a pressure injury.

Then as that's healing,

they may now--they're-- maybe they're in bed

because they can't move around the same,

or they're doing--

Again, bed rest is common with pressure injuries,

but there's something next in the sequence.

So while they're healing one thing,

something else occurs.

Infection can develop.

Somebody can have respiratory complications

from the inactivity.

So what you end up with is a person

that started at one place with one thing happening,

and now there's a sequence of events

that are happening over time.

That health cycle that they were originally on,

what it would take for that initial condition

to go away,

-they're past that. -Right.

But here they are with other things,

and it can just go on and on.

Actually I'll quote my research coordinator,

Kristian Manley, who did a lot of the interviews,

and his analogy is that people--

it's like a rip tide,

that they're fighting that and they're getting

just about their head out of the water,

and they're just about there,

and it comes and pulls them down again,

and then they're fighting to try and get to the top,

and pulls them down.

We see just a nasty, nasty process.

So a lot of our prevention efforts--

there's primary prevention.

You want to prevent that first thing from happening.

But we also talk about containment.

You want to contain it once it happens.

Don't let it go from one thing to another.

So then you're trying to prevent the other things,

because their risk increases

after the first event.

You could literally see people that will go years.

You could see people that die.

But you see people get amputations.

The get what-- either a life-threatening

or life-changing event,

and "life changing" meaning

sometimes they never get back to that level

where they started,

and that's what concerns us.

It really brings the conversation back

full circle, I think,

to the need for education

around stakeholders for understanding

the interconnectedness of all of this,

that maybe there are certain things

that can be provided in the front end

that could maybe help reduce or even eliminate

some secondary health conditions.

"Interconnectedness" is a fantastic word.

It really is.

That's a lot of what--

you know, that encompasses a lot of what we see.

You know, all these things relate to each other.

So again, that's why people need to be so vigilant

in their self-care.

Now we do see some people never get to specialty care.

So I would be remiss if I didn't talk about

disparities in treatment,

where if someone is not--

You know, we see people

with lower economic resources

just don't get the same level of treatment.

We see people based on race

fall through the cracks sometimes,

and even sometimes age and type of injury.

So everybody thinks that walking is great,

you know, that's--

When somebody gets a cord injury,

that's the first thing:

"Well, I want to walk again."

Some people are able to walk,

but ironically people that are able to walk,

depending on the quality

of that ability to ambulate,

they have their own set of problems,

so they're not as likely to get pressure ulcers.

They usually have good sensation.

But they experience a lot of loss of mobility.

They're at high risk for falls,

and you know, we see a lot of falls

among ambulatory spinal cord injury.

So the needs of somebody

that falls in that group level severity

are very different than someone such as mine,

where, you know, it's a high cervical injury.

Then we see, over time,

people lose some of their ADL activities

of living, is what "ADL" refers to,

and it's simply things being like

ability to dress yourself,

bathe, those things,

-walk, wheelchair use. -Mhm.

There just is a general decline over time...

-Mhm. -...as you'd expect with aging.

So there is a real need for service.

It is hard

to get funded services.

You know, people are out there

and there's a real need.

So I always would say

that people who choose to do attendant care,

home health care for people in need care,

it's a very important thing that they do,

and it's very life changing

for people who have someone

that does that sort of quality care.

So, but there are so many factors,

but a lot of it starts with, "What is--?

You know, what's funded for people?

What can they do?"

Even vocational training.

I said "even," but that is huge

if people are able,

if they get the support they need

so that they can go be retrained

-and work, you know? -Mhm.

It's an important goal for a lot of people.

I think connecting individuals

who've experienced spinal cord injury

is probably a big part of staying connected

and advocating

for your own service and the things that you need.

So are there any groups in South Carolina

that are helping to keep people connected

and to connect with resources?

South Carolina, we're fortunate,

we have a strong state Spinal Cord Injury Association

in Columbia.

There are groups that are support groups

around the state,

and the support groups meet a lot.

It's a way of connecting with people.

It's more of a social network.

It's not a bunch of people that get around,

usually talk about their problems.

-Mhm. -Although they talk

practically about them.

You know, what the resources are.

There's a lot of sharing of information,

but yeah, the South Carolina Spinal Cord Injury Association

is a very strong self-help group.

I want to mention also Dr. Susan Newman

at the Medical University

just had a newly funded grant

to study peer support.

So peer support is a common thing

among newly injured people in specialty care,

where someone with a cord injury will go in.

They're not an expert in anything other than

their own lived experience and that they, you know,

share it with somebody.

So Susan is doing work in that area,

so that's important.

I think it's underutilized among people

that have lived a long time with cord injury.

They get out in the community and they get more isolated,

and they can get more and more isolated over time.

Is there anything else that you would want to share

with our audience about spinal cord injury

that we haven't touched on yet today?

That's a really good question and I have to think about

everything we've talked about.

I think you actually said, "The interconnectedness."

So the interconnectedness of participation.

The community participation,

getting out, being active,

having friends, employment.

We all who are employed, or at least I know

certainly from me, most of my friends,

most of my network is from work.

So that's very important.

Those things relate to maintaining health

and prevention.

I really, again, want to emphasize

the importance of environmental barriers,

that a lot of what holds people back

are environmental,

and sometimes attitudinal barriers,

where they're simple things.

They're simple things most people wouldn't realize.

Again, they hear "disability"

and they think "regulation."

Mhm.

I've thought of--you know,

I see some restaurants that will open.

I live on James Island.

You'd think a new restaurant would have to be accessible.

A lot of them are not.

So you know, I think there's this crazy mindset of,

"Oh, well, we dodged that regulation

because we're grandfathered in."

They're not thinking, "Well,

geez, that person comes in--"

You know, like, we have team get-togethers.

We go where it's accessible,

and sometimes people will go back.

So they may only see that wheelchair once,

but, you know, they're hurting their own business.

Our money's just as green as anybody else's,

but yet you see--

So I think that's some of the downside

of the ADA,

or people's perception of it.

They think everything has to be perfect,

a lot of regulation,

rather than just thinking common sense.

-Mhm. -Again,

I could go and stay in somebody's home,

your average person, I could get--

You know, bring my Hoyer Lift in

and comfortably get in those beds,

but I can't do it in hotels.

-That just doesn't make sense. -Mhm.

You know, it's not the complicated things,

it's just the simple things.

You know, you think about Downtown Charleston.

How many places have steps?

Just kind of go next time down--

For anybody, go Downtown,

take a look around just when you're going in there.

Are there steps?

What's probably hardest for people with a disability,

or it certainly is for me,

when I see a half a step

and it's just big enough to affect

-whether I can get in there. -Mhm, mhm.

-So easy. -Right.

You know, it'd be so easy for places to accommodate,

and some accommodate, but they don't have it

where you can see a wheelchair access

or any directions.

So that's why you don't see more wheelchairs Downtown.

-You'll see them elsewhere. -Mhm.

If you go to Columbia, it's more accessible.

You'll see more there, I believe.

I haven't spent that much time in Columbia,

but where I have it seemed to be a little more user friendly.

-Mhm. -But those are the things

that I would point out.

Dr. Krause, thank you for joining us

on Science Never Sleeps.

Thank you and I hope it's interesting

to folks listening.

-I'm sure it will be. -Thank you.

We've been talking to Dr. James Krause

about his research on outcomes

for people living with spinal cord injury.

Have an idea for a future episode

of Science Never Sleeps?

Click on the link in the show notes

to share with us.

Science Never Sleeps is produced by

the Office of the Vice President for Research

at the Medical University of South Carolina.

Special thanks to the Office of Instructional Technology

for support on this episode.

♪

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