The Difficulty of Diagnosing and Treating a Brain Injury

Every 21 seconds, someone suffers from a traumatic brain injury (TBI) in the United States. Most people don't know about brain injuries until it happens to them or a loved one. The Brain Injury Alliance of Connecticut (BIAC) is a non-profit organization that provides resources and support for individuals suffering from brain injuries, whether mild or severe. BIAC extends that support to family members and caregivers. BIAC's Executive Director Julie Peters and Senior Brain Injury Specialist Victor Darr talk about the difficulties in diagnosing and treating brain injuries and the importance of a proper diagnosis to the recovery process. Most of the services they provide are free of charge. They recognize how essential CT Paid Leave can be to both the individual suffering from a brain injury and their caregivers.  They say it gives people another resource to access that can help them during a difficult time.

If you or someone you love has suffered a brain injury, you can get information from BIAC's Helpline at 860-291-0291 or by email at general@biact.org
For BIAC information go to: Home of Brain Injury Alliance of Connecticut (biact.org)

CT information at the CT Dept. of Health: 36 INJ Traumatic Brain Injury (ct.gov)

For information about CT Paid Leave go to: CT Paid Leave

https://ctpaidleave.org/s/?language=en_US



https://www.facebook.com/CTPaidLeave



https://www.instagram.com/ctpaidleave/



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Transcript

Nancy Barrow: 0:01

Hello, Connecticut and welcome to The Paid Leave podcast. The title basically says it all. I'm Nancy Barrow and I will be delving into this new state program and how it can help you and your family. This podcast will give you information you should know about Connecticut Paid Leave, and maybe just a little bit more. Connecticut Paid Leave brings peace of mind to your home, family and workplace. Welcome to the paid leave podcast. The Federal Center for Disease Control and Prevention estimate that at least 7 million sports and recreation related injuries happen in the United States every year. And more than half of these injuries happen among children youth and young adults aged five to 24 years old. According to results from the 2017 Connecticut School Health Survey, about 17% of high school students reported concussions from injuries and had to seek medical treatment while playing sports, exercising or being physically active during the previous year. The CDC identifies traumatic brain injury known as a TBI as a major cause of death and disability in the United States. TBI is contribute to about 30% of all injury deaths. Every day, 153 people in the United States die from injuries that include TBI. In this podcast, we're going to find out about what a brain injury is, how to get diagnos ed properly, and how it affects you and your family and how to deal with recovery of a brain injury. We'll also talk about how Connecticut Paid Leave can assist with income replacement for people suffering from brain injuries, or a loved one who may be suffering as well. Joining me from the Brain Injury Alliance of Connecticut is Julie Peters, the Executive Director. And Victor Darr who is the Senior brain injury specialist there. Welcome to the podcast, Julie and Victor!

Julie Peters: 1:56

Thanks for having us.

Victor Darr: 1:57

Thanks for having us.

Nancy Barrow: 1:58

What is a brain injury?

Julie Peters: 2:00

A brain injury, we use the term acquired brain injury. So it's an umbrella term which which really means that any injury to the brain that occurs after childbirth, that's not degenerative, hereditary, or chronic. So those so acquired brain injuries can include things like strokes, hypoxia, substance abuse, overdose, those kinds of things are under that umbrella. And under that umbrella is also what people commonly know about, which is TBI's , traumatic brain injuries. So traumatic brain injuries result from a blow or jolt to the head or body. And it can be or blast injury or anything like that. And, and that's a common misconception is that you have to hit your head to have a brain injury you don't. You can if your body is shaped, it is shaped that's not probably a word but are your and your brain goes back and forth in its little shell that can cause brain injuries. So so some of the common ways we sustain traumatic brain injuries, falls are the most common, followed by motor vehicle accidents, assaults, gun violence.

Nancy Barrow: 3:31

I didn't even think really about the gun violence and the domestic violence aspect of it, which Connecticut Paid Leave will also cover up to 12 days for income replacement for someone who is injured so they can go to the hospital, or they can get mental health, or they can do social services or if they need to go to court or if they need to move. So I'm glad that you brought brought that up. Are some brain injuries temporary and are some lifelong brain injuries?

Julie Peters: 4:07

Absolutely. So in a brain injury, we have kind of definitions, and so a mild brain injury which I've never really loved that term, but that is the term when there's just a brief change of consciousness or thought or memory. And that's, that's the term that we use to describe concussions. So most concussions are mild brain injuries, and a more severe brain injury are those where you have an extended period of unconsciousness or memory loss. So most TBI's are of that mild category. However mild shouldn't be misconstrued as meaning mild in terms of what you're experiencing. And it's really important because every brain injury is different. And your experience may be anything but mild.

Nancy Barrow: 5:04

Well, and it's interesting, you know, because I think I told you beforehand that I had a concussion from a car accident. And it really affected me. And I was not working at the time it was during the pandemic. And then for two days, it didn't really settle in, and then it really settled in and you're foggy. I couldn't put sentences together. I'm very thankful that I wasn't employed at that point in time, because I honestly don't think I could have worked at the level that I needed to, to be sharp and fast on a radio station. And I went to go see a neurologist, and I was really depressed. I got really depressed because I couldn't find words, and it just took me a long time to put a structure of a sentence together. It still might!

Victor Darr: 5:51

Yeah, you weren't, you weren't working, you weren't doing the thing that you love.

Nancy Barrow: 5:55

I mean, it really altered emotionally, who I was, and everything else. Is that common when you have a concussion or because mine was not a really severe concussion, it was still mild. And it took me about six months to feel like myself again, and is that normal?

Victor Darr: 6:13

So it can certainly speak for the callers that I get. And when I take callers people who have had concussions, it's, it's it's really hard to hear how much it's impacted the life one of the things that's important remember, even though a concussion is a mild brain injury, it doesn't mean it's going to have a little bit of impact on your life. You can have a mild brain injury, and it's going to it can really devastate your life, you know, good example is the worst thing like so if someone's not able to work, because of their concussion, or, you know, persistent symptoms of concussion, then not only is that going to impact their, their sense of self worth, but it impacts their livelihood. And a lot of times people can, you know, their house can be foreclosed on, you know, yeah, you know, those are the calls that I that I get a lot is just how much this has impacted my life. I lost my job. I couldn't pay the car than it impacted my marriage and my relationship and we broke up and I moved in with my crazy on and if those are the kinds of things that I see kind of like on a day to day level, how much something like a concussion can actually impact your life.

Nancy Barrow: 7:33

Yeah you don't think that right? Like you think a traumatic brain injury is something so much more devastating. You know, I never really thought I didn't realize how much a concussion really can affect you until it happened to me and, and my friend who wasn't wearing a helmet, and she got thrown off her horse, and she was unconscious for several minutes, and I called an ambulance and she went and she had a concussion. But she still has lasting effects, which I do not, thankfully. She still gets vertigo every once in a while like she still has lasting remnants of this.

Victor Darr: 8:10

So normally a concussion a person can recover within two to four weeks. That's kind of like the expected time window. But if people aren't doing what they need to do to take care of themselves not to brand heel, one that can get delayed. But there's a couple of things to keep in mind. You know, it's the unrecognized concussions or the undiagnosed concussions, the ones that haven't been treated, the ones that can't be treated easily to this concussion. Those can really impact recovery. Most people know about CTE, which, you know, something that football has made, I think a big banner topic. CTE can have really crippling effects on a person's ability to kind of navigate life.

Nancy Barrow: 9:01

And what does CTE stand for? Again, sorry, didn't mean to interrupt , but what is CTE?

Victor Darr: 9:04

Chronic Traumatic Encephalopathy. And, and, you know, it can be really they say that there's no way to kind of diagnose CTE during the lifetime, but you can go in and you can, you know, open a brand post mortem and identify that this person's had CTE but again, it's it's a real problem. I think most people have heard of CTE. One of the things that people haven't heard about is something called second impact syndrome. And so second impact syndrome is pretty rare phenomenon. But after if I've had a previous concussion, and I sustain another one that that's not been addressed, it can be fatal. It can be severely debilitating. And, but even in a more mundane sense, just post concussion syndrome, a lot of people now call it a persistent post concussive syndrome symptoms, and don't recognize it as a syndrome. But essentially what this means is if I've sustained multiple concussions, and again, I'm not recovering well, that those symptoms can really get prolonged indefinitely. So all of the things that you experienced in your concussion, those things can go a long time. And again, like we talked about, the impact that can have on someone's life is, can be pretty profound.

Nancy Barrow: 10:30

How does one get diagnosed? I know that when I went into the emergency room like they they did a CAT scan, and is that usually the way that they find out about concussions? Or do they not even have kind of a diagnostic tool to use for for concussions.

Victor Darr: 10:45

What I can tell you is that imagery is not usually very valuable, sometimes it's used. But essentially, a lot of people think of concussion, like a bruise on the brain. Yeah. And technically speaking, it's not, you know, a bruise would be, you know, internal bleeding inside the brain. And that's something that's a little bit more severe than Concussion. Concussion, really, by definition is something that happens at the cellular level, it's a disruption of the neuro chemicals. And, and it's not something you're going to see on an imaging device, though, imagery sometimes is used to kind of rule out other things important. You can, you can also look for other types of injuries. But what you're going to do to really determine if someone has a concussion, one, there's a physical exam, you know, so a doctor can do a test to kind of see if someone's strengths and their coordination, their balance, if those things have been affected. The other thing that you can do is kind of a functional exam, you can test someone's memory, and look at their ability to remember to respond, their mental acuity, those types of things can be tested, one of the most valuable way for doctors to kind of recognize this concussion is a post clinical observation. And so family members reporting, listen, I know he's telling you everything's okay. But he wasn't making any sense this morning. And in his mind, it's perfect, perfectly logical, but you know, that type of information can be really valuable to doctors, but it's really key for people to make sure that it is identified, to get the help that they can do. So initially, you know, if I was a student in school, I'd be told not to be studying. So even something like reading, or playing video games, those things can, you know, they tax the brain. And so as the brain is being taxed, it's not being able to heal itself properly. And so that's what's really, really key. And again, a lot of times people aren't aware they've had a concussion, they, they no one said, hey, you know, you look like you are seeing stars, something's not right here, go, go get help a lot of things get in the way of that. A lot of times people are afraid to like, I don't want to miss work, or my coach isn't going to play me again, if I if I just tell them how I've been feeling. Those kinds of things, people have to find a way around them. Because again, if you don't recognize and identify the help that you need, things can get really ugly, quick. And so you know, that's our big push here at BIAC is trying to get people you know, into an ER or to their their doctor, not waste time. Yeah.

Julie Peters: 13:38

And I think that that one of the things that you indicated is this, that there's no real way to diagnose a concussion and that so oftentimes, so I had my own experience a couple years ago, where I fell on the sidewalk outside my house fell very hard. bruised up my face, cracked my elbow, went to the the emergency room. And I, I know I had a concussion, but not once was that even mentioned, and here I am in the brain injury field, not once they were worried about my arm, and that's what's happened so much with any brain injury that a lot of times, it's not just, that's not the only thing that's that's hurt, right? So we're concentrating on a broken bone or this or that, and it's just not diagnosed. And so the biggest problem we have is that, you know, the vast majority, I would say of concussions, go undiagnosed, because there isn't that. But the other thing I think it's important to, to remember is we're talking about more like the outliers. So the vast majority of concussions will y ou know, will resolve themselves with rest. And that's something that the Connecticut Paid Leave, can really help. So when you're talking about someone who they may just need a couple of months off work or a few weeks, or whatever that is, to be able to rest. That's the message I'd like to get out is that, you know, it, you know, if you have one, and even if it's, if it's not resolving right away, to take a look at that as an opportunity to really let your brain rest and heal.

Nancy Barrow: 15:34

And thank you for saying that, because I think that that's a perfect example, right? And if if, if a child gets injured, like, the parent would be a caregiver, and they, instead of choosing between, am I going to take care of my kid or am I going to quit my job, it would be wonderful if they know that this is around for them for up to 12 weeks in a calendar year. And like you said, if it's a chronic condition, you know, they can apply every year. So if it's something that they need, it would be there for them in a chronic situation.

Victor Darr: 16:04

Another thing that Julie and I were talking about before this interview was how even external circumstances when else and they change the way they impact someone's brain injury can be really significant. I was talking to her about one of the clients that I've worked with who had received a traumatic brain injury when she was 16. She went on to to graduate from college, get a degree in landscape architecture, she ran her own business, and did this for many, many years until COVID hit and then the way COVID hit, all of a sudden, she realized why I can't do anything. And and then she stepped back and she looked at and she realized she had kind of faked her way, through life, never really getting the right kind of care and attention she needed for her brain injury. And realized, oh, wait, I need support. So she kind of sought us out through our navigator service. And we've been able to help her. And I think one of the things that is really valuable is is when it says recognize when someone you're sitting across from someone who can say, I see it, I feel you I And I hear how this has impacted your life. Like again, that's a it's not a sensation that, you know, brain injury survivors get very often they get kind of looks and stares. It's invisible. So a lot of times people aren't kind of seeing how it's going to impact someone's life.

Nancy Barrow: 17:34

Yeah, that's so very interesting. And maybe this would be a great point to talk about BIAC and what you do for people with brain injury. So tell me a little bit about what BIAC is. Sure.

Julie Peters: 17:46

So we started in the 1980s. It was basically a support group for families and caregivers of loved ones who had sustained a brain injury. Back at that time, most people didn't survive brain injuries. And when they did survive, there were very, very few resources supports very little for anyone so so we kind of started as a support group, and we grew from there. So what what does bIack do? First of all, we're the only organization in the state that provides free services and supports to individuals with brain injury their family members, the caregivers, the professionals who support them. What does that mean? We have a helpline that's staffed by brain injury specialists like Victor, who answer calls from people at all stages of sustaining brain injuries, it might be a family whose loved one has just sustained a brain damage, no idea where to go, what to do, what questions to ask the doctors, it might be a discharge planner from a hospital who has individual ready to go out into the community and they need to know what supports are available to them. It may be an individual with a brain injury. And we have a few I've been here 22 years. And they we have a few individuals who call us and have called us since since I was first here who just need check in every once in a while and need someone to listen to them and and hear and maybe guide them to a resource or support. So, we are kind of a connection of people to those supports and resources in the communities that that can help them. And then the second thing that we have is our support groups. And these are facilitated by generally individuals with brain injury or a family member and to professional and in COVID They used to be all in person of course and in COVID, we had to change all that, I thought it would be a real loss. But actually, for many people, it was easier to get to support group meetings because they didn't have to get transportation, they could be it on Zoom they could. So people actually liked the opportunity to have that. So our groups are now some of them are hybrid, some of them are just that. And that's an opportunity to just share with people who are going through the same thing as you are. And we have ones for caregivers and families specifically, for we have one for spouses, specifically, because your relationship with your spouse is a lot different than your relationship with other family members. And so we kind of like to call it a care partner with that, we do a tremendous amount of professional education and training. There's a certification for people in the field of brain injury called the certified brain injury specialist. And we are the one of the only ones that provide training to take that exam. And we've trained about 100 people over the years in terms of being able to take that exam, to improve their professionalism. We have a big conferences coming up this month, that trains about 250 people on kind of the newest and what's going on in brain injury right now in terms of research and supports. So we and we go out into the community, and talk to people about prevention. It's, as we've said, for many years, and it continues to be prevention is the only cure for a brain injury. So it's really important to help people understand, you know, healthy practices in terms of everything from wearing seat belts and helmets, to how we go about sports and that kind of thing. So we do that kind of work. We have legislative advocacy, where we will work to support legislation that may support people with brain injuries may support prevention initiatives, and that type of thing. So our services are free, as I said, and the biggest thing that we need to get out is that people can call us and contact us and find out about that, we also have one fee for service, which is a more in depth service. So there's some people who are falling through the cracks who need more than just connection to resources, they really need someone to work with them on an individual basis for some of their needs. And so we do have that, as well, for people who may need a little bit more support.

Nancy Barrow: 22:54

WelI I wanted to give you a compliment on your on your website, because the video that you have on there, it's just really powerful to see people who are struggling or who have had strokes and who are really doing much better, because they got the services from BIAC that they needed.

Victor Darr: 23:11

One of my favorite stories I told some recently was about this woman who called us her son had been struck by a car. And she recognized that she had to get the right specialized treatment for him right away. She wanted to get into good rehab, she knew a place and the minutia around getting her getting him into that place was incredible. And so a lot of times this is about waitlists for these rehab centers are really, really long sometimes. Sometimes, it's about getting out of rehab, so they won't take you into rehab if they don't feel like they can transition you out. Because possession is nine tenths of a law. A lot of times it's about insurance. So long story short, she was saying Help me. And I, you know, I can tell you that a lot of times I can't help people, I can't guarantee I can get them into rehab. But I've got a bag full of tricks. And so what I did was poured out my bag of tricks and gave her lots of tips and advice, how to talk to doctors how to collaborate, how to read those records, how to ask the right questions, then, you know, she kind of like took it past that. And she started asking me so do you know of a lawyer who would talk to me just to hear my case? And I said, Actually, I do. Let me give you his number. And she said Do you know of anyone who was in the rehab process or system that it can talk to me from their point of view and I gave that number? And then she said do you do you know of a family member who has been in my shoes who has tried to help their loved one and it also hit me that I had worked with this woman who was in the same situation and and told me after I helped her get her husband into rehab. Basically she said anyone you know, I was looking for advice in them to make. And so long story short there, it's sometimes it takes a village. It always takes a village. But it's, it's, it's really rewarding to kind of hear how people kind of can get to these situations, a lot of times they are impossible. But if there's any light, we can shed, we're happy to do it.

Nancy Barrow: 25:22

And the treatment portion of it is pretty interesting. Right? So is it occupational therapy? Is it physical therapy? Is it both? Is it mental health services? Where do you direct people with with a brain injury? That's an interesting topic?

Victor Darr: 25:35

Yeah so the best place to go if you're just trying to find information and trying to figure out what types of help are available? Yes, physical therapy can be really important occupational therapy, speech therapy can be really critical in recovery. A lot of times what gets overlooked is the motional therapy, or behavioral therapy, a lot of times people aren't realizing that's a really critical area to get addressed. There's a there's a lot of different places that one can go to get the help they need. The key is to make sure that you look for and that you you know where to look, or you know, what questions to ask.

Nancy Barrow: 26:16

Yeah, and I think Connecticut Paid Leave is great with that, too, because we do cover behavioral health, we do cover occupational, we do cover all these treatments. So I think that's also a really good resource is just knowing that you might be able to take a little time away from work if you need to, and get some income replacement. And you're you're not going to be worried about finances, you know, or paying your bills. And that's a big stress with someone who's just had a head injury. So I think it's one of the really nice benefits of this, that we do cover addiction services, we do cover behavioral health, those are really important to know.

Victor Darr: 26:55

And remember too there's a big overlap, there's a lot of comorbidity between behavioral health issues and brain injury, also to substance abuse. A lot of times, if I've sustained a brain injury, my likelihood of developing an addiction or having a mental health disorder will go up. But a lot of times, those things might lead to brain injury, super high correlation between all of these things, and when they overlap, the way that that impairs a person gets very, very significant. So I'm someone with a mental health issue and brain injury, and substance abuse, substance addiction issue, those kinds of things can be really debilitating.

Nancy Barrow: 27:36

I just wanted to touch on you being a veteran, and thank you for your service. Connecticut Paid Leave has two military family types of leave and one is family caregiver leaves so they can take care of someone who has been injured in the line of active duty. And the other is for exigency when they're called to active duty, you know, for veterans who are still employed, like they can obviously use Connecticut Paid Leave if they ever got any kind of concussion at some point. And I just wanted to let you know that I really think it's important that we talk about this little known fact about Connecticut Paid Leave that we do help military family members.

Victor Darr: 28:17

Well I think it's really important too because Julie and I were discussing earlier today that it's really interesting that we don't get very many calls from people in the military people looking for help around a brain injury within the military, we we get some veterans, but not very, not very many. They really amount to a very small portion of our calls. And so I think one of the things is important to remember is that there may be lots of reasons why I think some of that may be related to kind of fear. If I'm in the military, I was it's going to impact my job. Sometimes it's related to stigma around brain injury. There's really a whole host of reasons. One of the things that I want to emphasize is that it's important that you get help. So even if you are in a bubble, if you're in the military, and you feel like I don't know who I should be talking to, if you're afraid to ask a question, you need to ask the question, you need to go somewhere where someone can help you do that, you know, we at BIAC we don't have to report your call to anyone. So you can call us and tell us what you're concerned about. We can give you advice and information. But it's important to go somewhere. But I think that's the most important message is that if you're in the military and you feel like you need time off from work or you're just looking for support you're looking for someone understand is that you speak up it's really key and if you are a family person or a friend who see someone not getting help, the best thing that you can do is encourage them to do that. I've worked in this field helping people with all types of disabilities whether it's mental health or substance abuse or intellectual, developmental disabilities, and for me, the key has always been about empathy is about figuring out how do I channel my empathy? And how do I get other people to be empathy. But one of the things I've always found interesting about brain injury, it really is a lot easier for people to develop empathy. Because imagine this, you're in your car, driving home tonight, and you hit a truck. And that's you, you will suddenly be that person with that disability. And, you know, I encourage people to kind of think on that, when you're when you're working with some of the brain injury, this could be you and what would you want? How would you want people to talk to you? What kind of help would you need? How how difficult might life be the other thing I encourage people to do is talk to those survivors is really listen to their stories. Because if you listen, you dial in it, you know, it'll change your perspective, if you let it.

Nancy Barrow: 30:58

How do you think programs like Connecticut Paid Leave can help your clients and your patients and people that you come in contact with.

Julie Peters: 31:06

So there are many ways and it's and I'm thrilled that we have this in Connecticut and I if you're someone who's working, and you've sustained a mild brain injury or concussion, you can access this, I love the fact that it doesn't have to be all in one lump right?

Nancy Barrow: 31:29

You can do Block intermittent or it can be reduced schedule from from work.

Julie Peters: 31:35

So it can be all of that it can be. And that it because we know, brain injury is a chronic condition that it can be it can take place over, you can use that 12 weeks, over multiple years. And also for the I think the big thing is for the caregivers. And so the caregiver who in the beginning while their loved one is in the hospital, they may need it, they may need it when they're trying to get care down the line there. And all of that kind of they may need it for support. And, and again, we've talked a little bit about domestic violence and individual could have sustained a brain injury through that. And this may help them so I think it's a wonderful resource for people not to lose that income that they depend on so much and to be able to have some of that replaced through the Connecticut Paid Leave while they are caring for a loved one or while they're recovering themselves.

Victor Darr: 32:44

Yeah, and if I can add to that I, you know, I think one it's a wonderful thing. I think it's fantastic that Connecticut has taken this on, just for people in general, but for the person with a brain injury. Again, their life is so beset with so many obstacles and so many difficulties. This is just one more avenue to make their life's a little bit easier. And I really do hope that there's someone out there who's listening to this someone with a brain injury or is a family member or caregiver to really think hard about using this because it can literally change everything. You know, just it's it's super!

Nancy Barrow: 33:21

Julie and Victor, thank you so much for being on The Paid Leave podcast! paid. You were both wonderful, and there's so much information. So I appreciate everything that we talked about today.

Julie Peters: 33:31

And thank you so much for having us and helping us spread the word!

Nancy Barrow: 33:34

And I hope that March is big for you guys. For more information or to apply for benefits go to CTP leave.org. This has been another edition of The Paid Leave podcast. Please like and subscribe so you'll be notified about new podcasts that become available. Connecticut Paid Leave is a public act with a personal purpose. I'm Nancy Barrow and thanks for listening!