The Concussion Mom with Jami Uretsky
Show Notes:
Post-concussion syndrome and traumatic brain injuries impact so many more people than just the sufferer. Talking to us today about how she handled the concussion of her 15-year old daughter, is post-concussion advocate Jami Uretsky. Tune in to hear how Jami handled the accident, where she found the inspiration to start blogging, and her realization that this was not going to be a typical injury. We learn about the types of treatment that Jami took her daughter for, and why she feels functional neurology is the key.
We discuss how the standard school environment can be overwhelming for post-concussion sufferers and the stress for both the sufferer and the family around not knowing what is coming. Bella gives examples of how her own family was affected, while Jami gives some great tips on how to come to terms with your new normal. We find out how Jami handled her daughter’s mental health, and why it’s so important to find an outlet for the competitive spirit following injury. Join us for this insightful episode!
Key Points From This Episode:
• An introduction to Jami Uretsky, post-concussion advocate and mother to a concussion sufferer.
• The story behind Jami’s daughter’s concussion.
• How Jami was inspired to start blogging.
• Coming to terms with the fact that life isn’t going to go back to “normal”.
• The types of therapies that helped Jami’s daughter: Jin Shin Do, chiropractors, and functional neurology.
• Why school environments are so overwhelming for post-concussion sufferers.
• The stress of not knowing what’s coming: how it affects sufferers and family members alike.
• How Bella’s family handled her recent adventures.
• Jami’s tips for post-concussion survivors: accepting the new normalcy and letting go of milestones.
• How Jami handled the mental health side of her daughter’s injury.
• The importance of finding an outlet once injured.
• What Jami's daughter is up to now: an Undergrad in Neuroscience and a Masters in Criminal Justice!
Connect with our guest!
Website http://www.concussionmom.com/
Schedule a One-On-One with Bella Paige
Post-Concussion life can be extremely difficult to manage. These one-on-one meetings are not only for survivors but their family and loved ones as well!
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Transcript - Click to Read
[INTRO]
[00:00:05] BP: Hi. I’m your host, Bella Paige. Welcome to the Post Concussion Podcast; all about life after experiencing a concussion. Help us make the invisible injury become visible.
The Post Concussion Podcast is strictly an information podcast about concussions and post-concussion syndrome. It does not provide, nor substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician, or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice, or delay in seeking it because of something you have heard on this podcast. The opinions expressed in this podcast are simply intended to spark discussion about concussions and post-concussion syndrome.
[EPISODE]
[00:01:03] BP: Welcome to today’s episode of the Post Concussion Podcast, with myself, Bella Paige, and today’s guest, Jami Uretsky. Jami went to Delta S Performance due to her daughter’s struggles with a life-altering concussion that she sustained while playing soccer in 2011. After having tried many different types of therapies for her daughter, and feeling hopeless, she stumbled upon Functional Neurology while searching online for help. After three months of work with a functional neurologist, her daughter went from being unable to live the life she wanted due to her many symptoms to moving on to college and living away from home. Jami was a recruiter and executive search consultant for 25 years while being a full-time caretaker to her daughter. Jami became an avid activist in promoting concussion awareness and education.
She has been a guest on numerous podcasts featured in several newspapers, and magazine articles and written a chapter for the book Concussed!: Sports-Related Head Injuries: Prevention, Coping and Real Stories. Jami and her daughter appeared in Overcoming TBI, the documentary about brain injuries. Jami is the founder of Concussion Mum and the host of the Concussion Matters Podcast. Jami consults on return-to-learn protocols and speaks publicly about concussions and concussion safety management. She is a graduate of Salem State University and a certified brain fitness coach. She enjoys watching sports, cooking and spending time with family and friends. Welcome to the show, Jami.
[00:02:24] JU: Thank you for having me on.
[00:02:26] BP: So to start, do you want to tell us a little bit about your background and what made you interested in concussion awareness?
[00:02:32] JU: Sure. In 2011, actually, October 2011, my daughter was playing in a soccer game. She was not supposed to play that day because she had hurt her leg, and so she promised me she wouldn’t play and it was pouring out. I did not get there early like I usually do, or did. As I was driving there later, I got a call from one of her teammates that she had fallen and hit her head when she was on the sidelines. She seemed okay, but I should try to get there as soon as I could. I was down the street, so it only took me a couple of minutes to get there. Then I got there, and she was sitting on the sidelines and she usually would play a whole game. She looked okay, not great and the athletic trainer came up to find me and he said, she took a pretty big fall. I evaluated her. I think she has a concussion. I think you need to take her to the doctor as soon as possible. That was the beginning of the change of our lives.
[00:03:30] BP: Yeah, and quite the change it can be. I do like that she promised that she wouldn’t do it and she did it anyway, because that sounds like me.
[00:03:39] JU: Yeah, she’s pretty competitive, so I shouldn’t have been surprised.
[00:03:44] BP: It’s crazy how much pain and things like that when you’re competitive, you can just block it out and you just have tunnel vision. But the second you stop, all that pains there. But while you’re in the game, like when I used to ride horses, I never felt the pain while I was riding ever. There was never once where I got a headache while I was on, but the second I’d get off, you’d be like, “Whoa! Okay. I’m in a lot of pain.”
[00:04:06] JU: That’s a very good point, because that’s your adrenaline. You’re just running on adrenaline. And when you’re an athlete, and you have a very competitive nature, you have a lot of adrenaline and that’s how you become good, and why you’re competitive, so I can understand that.
[00:04:21] BP: Yeah. It has positive aspects and very negative ones in regards to concussions, because you can hide it. Being able to hide it, and then also be in pain before and after you do it is a not a really healthy thing to do, but a very common thing with athletes. What is your current role in relation to concussions?
[00:04:42] JU: Once she got hurt, I took her to the emergency room and I figured she’d be okay to go to school the next day. Of course, she didn’t go back to school full-time until the following year. It was a week-by-week thing with her and about three months in after I had taken her to so many different kinds of therapies, which I am sure you can relate to, you’re willing to try anything right? 2011 was when concussions were starting to become more newsworthy. They weren’t really talked about that much before then, and they still weren’t like they are now. I did a lot of research on my own to try to find things to help her. One of my friends said to me, “Why aren’t you blogging about this?” I was like, “You know what? I don’t know. Maybe I should.” I started a blog, and I remember sitting at my kitchen table, and I said, “Well, I have to call it something, and I’m the mum to kid with a concussion, so I’ll just be Concussion Mum.” That’s how it started.
[00:05:37] BP: Yeah. Well, it’s a good way for it to start. It kind of reminds me of how I started. I was trying to figure out how to help people, and it was my brother who went “You love podcasts and you don’t stop talking ever, so why don’t you start a podcast?” It took me a while to actually put it together, but that is what it took, just someone mentioning, why don’t you? That try anything is something that I went through and it was really difficult. What sort of things did you try in the beginning and where she at now?
[00:06:10] JU: I was lucky that her pediatrician, because she was 15 at the time was very well-schooled in concussions. We had to go to her every week. She couldn’t go to school from week to week until she was cleared. After a couple of months, she said, “You know what, it’s time for you to move on and you have to go to a specialist.” We went to a neurosurgeon, a local neurosurgeon and then he evaluated her and he said, “No school.” We started going to craniosacral therapy. I took her to an herbalist. I took her to many, many, many different types of chiropractors. There are people that think a chiropractor just…
[00:06:50] BP: There’s a lot.
[00:06:51] JU: A lot, right? People think they just adjust your back. It goes so much deeper than that. I took her to physical therapy. I took her to someone who did kinesiology, and muscle memory. I took her to nutritionists. She went to speech and language pathology because she had absolutely no short-term memory. Gosh! So many other things. I can’t think of them off the top of my head. But anytime I read anything about anyone with a brain injury, I just went down that road. Took her to a massage therapist who specialized in a certain type of massage for brain injuries called Jin Shin Do. The one thing that helps her the most was a particular type of chiropractor, which was functional neurology.
[00:07:31] BP: Yeah, we’ve talked about functional neurology, and we’ve had quite a few functional neurologists on the show, actually. I liked that you got well-schooled in concussions. It’s something that my parents did themselves, but didn’t have support elsewhere, really? I know we went to — I can’t count how many doctor’s appointments, but the only time they would ever talk to them was if they talk to them over me. Does that make sense? Like if they were asking them, like they would ask my mum how I really was when I would say I was fine kind of thing. There was lots of those kinds of incidences. When they told your daughter not to go to school, did she not go?
[00:08:09] JU: Correct, she did not go.
[00:08:11] BP: Okay. So she followed. See, I didn’t do that.
[00:08:14] JU: But she didn’t have a choice. She was bedridden, so she didn’t even go away around my house.
[00:08:19] BP: Yeah, it was probably a good decision. I went once a day for one class, and I would rotate throughout the week and then I was in bed for the other 20 hours a day. That was only if I made it to the stairs. I sometimes think I probably should have taken a break, but I’m not great at taking breaks. It takes a lot for me to like take a step back from something. Do you want to tell us what the emotions were when you went through that as a parent of a concussion survivor?
[00:08:49] JU: Sure. Also, to your point about going to school, and having to go home and rest, things that you don’t realize that happen at school is walking on the floor. That’s hard, right? You can feel it right up from the bottom of your foot up into your head. When the bell rings in between classes, all of that stuff is really — it really increases your symptoms, and people just think of it as — that’s what happens every day in life. You just walked down the hall or the bell rings, it’s — you don’t realize how it affects your head.
[00:09:17] BP: And the lights were a big problem for me. Not even just the loud noises, like the bell ringing, just conversation. Because I lost that ability to like block out the noise, right? You lose that ability to kind of focus. Instead of just hearing your teacher, you’re hearing every whisper, and everybody talking, and every pen tapping and every chair rocking so you get overstimulated really, really easily when you have a concussion. Like going into the cafeteria was like a definite no, because I would just cause like excruciating pain because all my symptoms would just flare up even more when they were already about as bad as they could get at that time.
[00:09:57] JU: Right? Yep. People don’t realize it.
[00:09:59] BP: No. People didn’t realize I was struggling a lot when I was at school either, because I didn’t really look any different than anybody else there. I look like a high school student.
[00:10:09] JU: Yeah. The invisible injury. Yeah, for sure.
[00:10:12] BP: Those emotions as a parent, how was that?
[00:10:15] JU: In the beginning, I was okay because I did not know what was ahead of me. I took it kind of day by day thinking, “Oh! She’ll be fine in a couple of days type of thing”. And then I realized, “Okay. A couple of days, that’s probably now going to be a couple of weeks”. It happened in October, and she was supposed to get her license in December. I’m thinking, “Okay, that could be our next hurdle, right?” She can get her license in December, and we’ll take it from there. Well, of course, she didn’t get her license in December. And then, there was like a prom type of a thing, like little milestones like that, that would be my next thing. She missed all of them. After a while, it took a few months. But after a few months, I was like, “You know what, I can’t believe what’s happening.” She is missing out on her entire high school experience and it’s very upsetting. She’s very athletic. She played four sports a year and she couldn’t do any of them.
When you’re in high school, your identity is you’re an athlete, you’re a student. She couldn’t do anything. She was home with me, she couldn’t socialize, because she couldn’t use her computer or her phone, because it up her symptoms so badly. It was very upsetting as a parent to watch your child go through this and see them miss out on all the fun that all of their friends were having.
[00:11:33] BP: Yeah. I never thought of the “Didn’t know what was coming” side of it, but it’s really important, because I think that’s what happens to a lot of us. That’s what happened to me when I ignored it for eight months, but I kind of on the inside knew what was coming. But I don’t think my parents realized that this was going to — it uprooted my whole entire life. For me, it uprooted my life essentially, forever. My whole entire life had to change course, because of my multiple concussions. There was no end date. We still haven’t hit that end date, actually. I think sometimes, it’s exhausting for parents too, and I remember feeling bad for them, even though I was the one that was ill. Like my mum always would ask — she was that like, how are you feeling kind of mum, always checking in, always asking me in weird ways to try to get me to answer and not just say fine.
I know once in a while when I would say how bad I was feeling, or when I really would crash, which at the beginning was very often. I could drive a little while after all of it started. I know there was times where I would just call my mum from the hospital. I would just probably — if it was my child, I’d really freak.
[00:12:46] JU: You drove yourself to the hospital?
[00:12:49] BP: Yeah, if I had like a really bad headache, and I was like out doing things, I would just go to the hospital. I just like call here an hour later and be like, “Oh by the way! I’m in the hospital” or — I have a few siblings and I text them and be like, “By the way, can someone tell mum or tell dad that I’m in the hospital because I don’t really want to tell them again” and then they would do it for me. Usually, my older sister would do it. I put that on her too, like that’s a lot of things to deal with emotionally, to have your little sister tell you that she’s back in the hospital because she’s in so much pain. But I’ve been in so much pain, I couldn’t function and I didn’t know what else to do. Being at home with it wasn’t very fun. If I went to the hospital, for the first two years, I kept thinking maybe they will come up with something to get rid of this pain.
Usually when I went, they could get rid of it temporarily, which is also why I went because stronger medications and things like that. They would continue to do scans and I had issues breathing for a long time during all this and all these other things kind of went wrong. But I remember every time I would tell my mum how I was feeling. I could just see it, like her face, she would hold really strong, but her eyes would just completely change instantly. Just knowing that her daughter was still struggling.
[00:14:05] JU: Yep, I can relate. It’s very upsetting. It also affects the siblings, like you said, their lives change too.
[00:14:12] BP: Absolutely. That’s why I started the podcast. It’s for a lot of those things, because no one thought about my sisters, my brother, my parents while I was going through all this. But they’ve went through it just as much as me, and actually, an episode a few weeks ago. I talked about how — so I’m an adrenaline junkie. I went ice racing on dirt bikes, and my little sister freaked out when I told her I was going, like so mad, so angry that I was risking getting a head injury. I was talking about how I sometimes forget that she still remembers it all, where I blocked a lot of it out. I don’t really think if somebody asked me about high school, I don’t remember. I couldn’t tell you what I did, couldn’t tell you what I didn’t do. Because like two years of high school and then two years after, about four years of that are just blank. I’ve accepted what happened, and I just moved on from it and I don’t think about it a lot. But I think she thinks about it more than I do. The thought that I could be going back just like — she just shut it down like so.
[00:15:18] JU: Did your parents know you went ice racing?
[00:15:21] BP: Yes, they did. My parents were big into motorcycles when I was growing up, so I think they were a little better. Then I was going with my aunt and uncle, so I was doing it safely. They also have learned, we’ve talked about it before. That my mental health at this point is a little bit more important than my physical health and they have to accept that. That’s what I’ve accepted. Those types of things are what help my mental health, and so that’s how I’m going to live my life. We’ve had a few discussions about it. I know sometimes, they wish I would just be bubble wrapped everywhere I went and then leave a box. That’s just not me.
[00:16:02] JU: Right. The mental health component is side by side to the physical.
[00:16:06] BP: Speaking of that mental health, we are going to talk about that next. But with that, let’s take a quick break.
[BREAK]
[00:16:16] BP: Wow! I can’t believe it’s been one year, the support from everyone has been truly amazing. Due to reaching our one-year anniversary, you can now book one-hour sessions with myself Bella Paige. I offer help with understanding loved ones, finding your new normal, and finding specialists near you. Find the work with Bella link in our episode description. I am looking forward to another great year.
[INTERVIEW CONTINUES]
[00:16:47] BP: Welcome back to the Post Concussion Podcast with myself, Bella Paige and today’s guest, Jami Uretsky. I wanted to get a little bit into mental health, but first, I just wanted to ask if you had any tips for parents of concussion survivors.
[00:17:02] JU: I would say that the biggest thing that I learned during the journey was that I had to accept what was happening, hoping to reach milestones and wishing for them was not a good way to handle things. And just accepting the fact that these things are not going to happen and I have to take care of what I have at hand on a daily basis. Accept the fact that she’s not going to be playing soccer, or hockey or running track. I’m not going to be socializing with my friends at those games. That’s over until she can return to play. That was difficult, but very important for me.
[00:17:41] BP: Yeah. I really like that, I talk to a lot of people about that. I do like one-on-one sessions with survivors and their family members. Something recently, I was talking to a girl about whatever decision and choice she made about going to school or not. She had to be able to accept that and there wasn’t a wrong choice. If she wanted to push harder and go to school, that was fine. And if she didn’t, that was okay too. But not to beat yourself up about either choice. Acceptance is a huge part about a lot of this. It’s really important when it comes to what’s happened to you. A lot of people talk about going back to their old self, and it’s a lot easier if you start thinking about creating a new you. Because trying to go backwards, you’ve changed as a person, that’s what this injury does. No matter what, you’re not going to be the same person. So trying to go backwards isn’t going to help you, but trying to figure out who you are now can really help and accepting what’s happened can really help. But it’s not easy, it doesn’t happen overnight and it doesn’t even happen in a year for most people.
[00:18:47] JU: Right, and you’re absolutely right. You have to accept that there’s a new normalcy to your life, and that’s what your normal is going to be for the foreseeable future. I mean, so I did that. I’ve never gone back to that old way of life. But as you know, you meet a lot of people on this journey, who can impact your life in really wonderful ways.
[00:19:08] BP: That new normal is like what I call your adaptive lifestyle. You can have a happy, great lifestyle with symptoms. You just have to create an adaptive one that works for you. We have a lot of tips on how to do that on the show, and it can take a while to figure out, but you can figure it out and then things improve significantly after that.
[00:19:30] JU: You’re absolutely right.
[00:19:32] BP: Yeah. Mental health, as everyone knows, is my favourite topic because it was my missing piece of my puzzle when going through this. I’m just going to let you start [inaudible 00:19:44] actually.
[00:19:43] JU: Okay. I do think that’s — like you said, it’s kind of an overlooked part of this injury, so concerned with the physical pain and various symptoms that go along with just the pain. For example, the sensitivity to noise, sensitivity to light, the balance issues. There’s a whole host of physical issues, aside from the pain, and then there’s the mental health issue. As a 15-year-old athlete, my daughter was really, really competitive. All of a sudden now, nothing. She was a very good student, very competitive in her schoolwork. Now, nothing. I had read that depression was a very big problem with concussions, because you lose what you know as your life. At age 15, I mean, it’s very difficult at any age, but at age 15, you’re not really mature enough to understand that fully.
I looked for a therapist for her, and I went back and forth between finding her a therapist for a teenager, or a therapist for brain injury. I decided on a therapist for brain injury, because although she was a teenager, the problem is the brain injury. I took her to one, and she was fantastic. She took me aside afterwards and she said, “Your daughter is extremely competitive, she’s an athlete. That’s sort of her identity and her competitiveness is not gone. Although she has a brain injury, she’s still that competitive person and that competitive energy has to be put somewhere, it just doesn’t go away. You’re going to have to figure out what to do with her to keep that competitive spirit alive”. What we did was we turned to advocacy, and she became a concussion advocate herself, all through her high school and college years.
[00:21:31] BP: Yeah, I really love it and I really like the perspective on it, of putting that energy elsewhere. I think that was a lot of my problem. That a lot of my problem was I wouldn’t give up on the sport, like at all, but I really didn’t have any other plans. When you get told it’s your career at 14, it’s really hard to let go. But that competitive energy does have to get put somewhere else. Actually, one of my first guests told me a lot about that and he taught me about how — I told him about how being an athlete was a really big part of me. I was having trouble still even then, knowing what to do next. Who was I going to be now without that part of me? Who was I? All of your friends, who are all those? My whole world was there. Paul Bosworth, which was episode four told me, “Well, why don’t you just be part of the Concussion Olympics? You’re going to create something that you can help so many people with, and put all your energy into.” And it’s funny how that one conversation I had, I guess, over a year ago now kind of set me off. And yeah, I could do that. This is what I could do, I could really get into this, and I could really help people. Now that’s all I think about every day and it’s kind of crazy. How much drive it can give you and how many hours you can put into it. Because I probably put like 60 to 100 every week. It’s probably close. It’s about 80 hours a week I put into this, into helping people.
[00:23:09] JU: You’re a very, very high-level competitive athlete. That was not going away. Him telling you that was fantastic, because it changes the course of your energy.
[00:23:21] BP: It did.
[00:23:22] JU: Into something very productive, that you’re really helping a lot of people.
[00:23:26] BP: Yeah. I would have been doing horses for 18 hours a day between riding, and physical fitness, and eating plans and all those types of things when you’re a high-level athlete. Now, I put that into all this, and it’s good to have that outlet. Because if you don’t have it, all of that energy just kind of builds and my mental health just tanked all the time. Because I just felt like I couldn’t do anything. I remember talking with my mum and I still have bad days. When I do have really bad days, I had one a few months ago. I just told her, I was like, “I’m kind of just done.” I was like, “I’m done living this life.” She’s like, “Well, no, no, you’re not.” I’m like, “Yeah. Yeah.” We’re like arguing eventually like I’d be good, but I still get those moments where, “Okay. I’m in so much pain. I’ve pushed myself way too hard, because I do that a lot still. It can be really tough to get over that mental health part of it. But once you understand mental health a lot more, that really helped me. Like now I know. I probably will have a few bad days this year, but that doesn’t mean the rest of them are going to be bad like that.
[00:24:35] JU: Right? Like you said, you have to leave your past in the past and focus on now what you can do.
[00:24:42] BP: Yeah, like I am not Bella the showjumper. I am Bella the concussion advocate, and mental health, it’s hard. I find like you said, as a teenager, it’s hard. I think that can be a really big problem because when you are a teenager as most parents know, and most people know, you’re really stubborn. You don’t really know where you’re going, because your life is — you’re kind of getting pulled in all the different directions. Your hormones are through the roof, and you’re going through all these changes and then you add a concussion in the mix, so it’s a lot to go through.
[00:25:16] JU: It certainly is. I know, people ask me sometimes, what was it like dealing with a teenager? I always say, “You know what, I don’t know, because she did not have a normal teenage high school experience. She didn’t do all the things that her friends did, so I didn’t have that experience with her.”
[00:25:34] BP: What is your daughter up to now?
[00:25:36] JU: Since she got hurt, she graduated in high school that she graduated from college. She was a neuroscience major, which was not something she would have considered before her injury. She got a master’s degree, and she works at the CTE Center at Boston University.
[00:25:54] BP: I think that’s amazing. I love how she went into something related to concussions, because I think that’s how we get a lot of people in this field, is that something either had happened to them or someone close to them, and it kind of sparks a light that gets them really interested in it, and then it helps so many people.
[00:26:12] JU: Right, absolutely. As I told you, she put her energy into advocacy. All through high school and college, she would go speak at businesses and at conferences, and she was looking for an internship while she was in college. She went to college in Boston, she sent her resume and an email to someone at the CTE Center. They had her come in, and she said she wanted a tour. That was all she wanted, was she wanted to go for a tour. They had her come in, and then they told her that she had the internship. She was like, “What internship? That’s how it started. She worked there fine while she was in college, but it was because of that advocacy that someone had seen her speak and knew her story.
[00:26:55] BP: I think that’s amazing. Everyone out there who is working towards this invisible illness, which we really don’t know that much about yet is making a huge difference. Is there anything else you would like to add before we end today’s episode?
[00:27:10] JU: I don’t think so. I think we covered everything. Mental Health, the competitiveness, the new normal.
[00:27:17] BP: Yes, for sure. Well, thank you so much for joining us today and sharing your special experience with post-concussion life.
[00:27:25] JU: Thank you for having me. I really had a good time talking with you.
[END OF EPISODE]
[00:27:32] BP: Support the podcast. If you truly love the podcast, please consider supporting us through our tip jar. Find the support the podcast link in our episode description. All tips are greatly appreciated.
Has your life been affected by concussions? Join our podcast by getting in touch. Thank you so much for listening to the Post Concussion Podcast and be sure to help us educate the world about the reality of concussions by giving us a share. To learn more, don’t forget to subscribe.
[END]
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