The Concussion Community with Silvie Van de Ree
Show Notes:
Silvie Van de Ree was on her way home on her scooter when another scooter driver hit her. Initially, all she noticed was the whiplash, so she went home and rested. Fast-forward a year, and Silvie was still suffering from the scooter crash. Through her own research, she established that she was suffering from post concussion syndrome. Join us today as we talk to Silvie about what her symptoms were, how her doctor tried (but failed) to help her, and the various treatments she has done with varying success. We hear why it’s so important to trust yourself when you feel a treatment isn’t working (or when you need a break), and how recovery isn’t a straight line. Silvie explains why she founded The Concussion Community in 2021, a platform allowing sufferers to connect, to learn from online courses and classes, and hopefully one day meet for a retreat! Find out what running a community like this entails (and how Bella has had a similar experience with her podcast), and where you can go to join in. For all this, and so much more, press “Play” now.
Key Points From This Episode:
• Welcome to Silvie Van de Ree, post concussion syndrome sufferer and founder of The Concussion Community.
• How Silvie sustained her concussion: a texting scooter driver!
• The long road to recognizing that something wasn’t right.
• The symptoms that Silvie experienced, and the ones that she and Bella shared.
• Exploring the treatments available to Silvie, from glasses to craniosacral therapy and everything in between!
• Why it’s important to trust yourself when you don’t feel a treatment is working.
• Understanding that recovery is not a straight line, and taking a break from treatment when you need to.
• Why Silvie started The Concussion Community, and where you can join!
• What The Concussion Community Platform includes: classes, courses, and support groups.
• The work that goes into running both The Concussion Community and The Post Concussion Podcast.
• Silvie’s plan for The Concussion Community: more courses, more members, and a retreat!
Check Out The Concussion Community
Instagram: https://www.instagram.com/theconcussioncommunity/
Email: info@theconcussioncommunity.com
Schedule a One-On-One with Bella Paige
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Transcript - Click to Read
[INTRODUCTION]
[0:00:05.0] BP: Hi, I’m your host Bella Paige and 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 concussion and post-concussion syndrome.
Welcome to today’s episode of The Post Concussion Podcast with myself, Bella Paige and today’s guest, Silvie Van De Ree. Silvie is 30 years old and living in the Netherlands. In May 2017, she got into a scooter accident, which caused whiplash and a concussion. That day, she went home after the accident, not knowing she just walked into a new life.
She was struggling for years to find the right help and understand what was going on. The regular doctors she visited couldn’t address her symptoms so she wasn’t getting any help from them. Silvie felt misunderstood and lonely during her journey and this is exactly why she created The Concussion Community.
During her journey, Silvie always had the idea of creating a community but had never gotten the chance to. Now after almost four years, she finally felt ready for it and she can’t wait to help others on their journey.
[INTERVIEW]
[0:01:56.7] BP: Welcome to the show Silvie Van De Ree.
[0:01:59.9] SVDR: Thank you.
[0:02:01.6] BP: Do you want to start by telling everyone about how you received your concussion?
[0:02:05.7] SVDR: Yeah, sure. It’s already four and a half years ago, I sustained my concussion while I was driving home on my scooter. I went from the station home and I was driving on the other side of the road and another scooter just didn’t see me, he was on his phone and we bumped into each other and I fell on the floor but I didn’t hit my head so it was more of a whiplash.
I stretched my neck, I went home because I thought, “Okay, I was lucky” that was the first thought I had and I went home, I thought, “Okay, let’s go” it was already evening so let’s go for a good sleep and I hope that I will be fine but the first few days, I was okay, then, after a few days, my symptoms just became worse and yeah, I just didn’t know what to do with it and I just went back to work because this happened — if I’m sure, on a Tuesday and then I went to work the next day and I thought, “Okay, nothing’s going on.” I just tried to act normal but yeah, I felt inside, it wasn’t normal, there was something going on that I just didn’t know what it was because I didn’t fall on my head.
Yeah, this was quite a long time that I just didn’t know what was going on with me and I went to my doctor and he didn’t know either, he just told me, take some rest and that’s it. What I did, I took some rest, I didn’t go to my work for a few weeks and again, after those weeks, I thought, “Okay, I should be better” but I wasn’t. I wasn’t getting worse and then I went back to my doctor again, he just didn’t know what to do, sent me home again and this can take maybe a little bit longer and yeah, I think that my first six months, just really looked like that. I just didn’t get any help. Yeah, I felt really frustrated and lost and I just didn’t know what to do.
Yeah, I didn’t go back to work, I tried many times but it’s just — I wasn’t able to do that because I had to watch the screen for eight hours and the office is really noisy because there were so many people over there and yeah, it just felt like, I just didn’t know what was going on with me and no one else just knew what to do so I felt really lost and lonely and yeah, that is what happens. Yeah, just a scooter accident and then it changed everything in my life.
[0:04:40.2] BP: It is amazing how just one incident, actually, just the other day, I had an Instagram post about how long people have had PCS for and some of them were 20 years and I thought I was a long time. It’s been over 10 and I started asking people if they had had received more head injuries within those years because it seemed like such a long time to be going through it and a lot of them hadn’t. A lot of them, it was just one injury and that’s what started it all and it just lasted for a really long time.
[0:05:12.2] SVDR: Yeah.
[0:05:13.0] BP: I can honestly say, I never thought of texting on a scooter but I guess it could also be dangerous. It’s amazing the whiplash injury, how a lot of people don’t realize how severe it is. It happens in car accidents a lot, people are in a car accident, nothing really goes that wrong, a fender bender and then all of a sudden, like you said, you just feel off, like something is wrong but you don’t know what’s wrong I find is how it usually starts.
It’s like, “Well, I’m going to work but I can’t work and I don’t really know why” and then you got that recommendation that I got which is the worst recommendation as we’ve learned through a lot of research to just go home and do nothing. To just, yeah, sit there.
[0:06:02.0] SVDR: I think that is the hardest part because you just want to get better and just don’t know how and many of the doctors don’t know it either, you feel like if even my doctor don’t know what to do, how should I suppose to know what to do because yeah, you want to trust your doctor, if he has no clue what to do, if we’re so lost and people are asking questions.
For example, my boss, he was asking, “Okay, when are you coming back? Do you already feel better?” and I just didn’t know what to say because I didn’t feel better. I didn’t know when I would feel better. Yeah, it makes it so hard and even that I didn’t know what was going on, okay, I knew the word whiplash but whiplash is more of a neck injury and not concussions.
It took me a year to find out that I had a concussion and not just a whiplash and my own doctor, he never mentioned it to me and yeah, I think there is just a lack of awareness around this.
[0:07:02.2] BP: Yeah, there certainly is and what type of symptoms did you experience in that first year?
[0:07:08.1] SVDR: Well, it started with that I felt overwhelmed every day but just a little things, I just started to get feel overwhelmed. For example, just having a simple conversation was so hard for me to pay attention, especially when there was that crowd noise, things like this, certain noise and light sensitivity. My eyes were a big problem, I had a hard time watching screens, reading and also this feeling of like a pressure behind my eyes, I had it all the time.
Also, with the pressure in my head, it felt like there was like a band around my head. I felt more emotional, I could cry just without any reason. I just — when I sit on the couch and then I just started crying out of nowhere, so I didn’t have any control of my emotions. I felt more tired, every day, in the first year, I think in the first two years, I needed a nap after lunch time. I had some cognitive issues, fatigue. I think all of the symptoms that…
[0:08:21.1] BP: Yeah, all of them, the whole list. Yeah. I get the pressure part, I always used to — like when I started dealing with this, I was in high school and I remember begging my parents to cut half my brain off. I said, just cut my skull and let it swell, my brain is trying to escape and it has nowhere to go but it feels like it’s going to explode and I remember getting so upset and I’d be like, “Just do it, let’s just go, you know where they drill holes in your head, let’s just go do that.” They’re like, “That’s not what you need” I’m like, “That’s what it felt like.” It felt like my head was going to explode which was…
[0:09:03.1] SVDR: Yeah, same, it just felt like I had to release this pressure, I didn’t know how and felt like I was wearing a hat that is too tight but you just can’t take it off, that’s the feeling, yeah.
[0:09:17.2] BP: Was your head really sensitive? Mine was.
[0:09:20.2] SVDR: Yeah, same, yeah. I also went with some movement as well. For example, I always worked out a lot before my accident but after my accident, I couldn’t even walk normally without my head getting hurt.
[0:09:37.1] BP: Oh yeah.
[0:09:37.2] SVDR: It was sensitive, yeah.
[0:09:39.0] BP: That lack of emotional control is something a lot of people tend to deal with. I had a lot of trouble, I would just be crying randomly. I would be at an event or — you know how people cry during commercials, well, I would cry during conversation and just feel like tears streaming down my face and I’d be like, “Oh I’m really not that upset” but they’re like, “Well, you’re crying.” I was like, “Well I know that but I’m really not, that’s not how I feel, it’s just my brain crying, not me.”
[0:10:11.2] SVDR: Yeah, its’ so hard to explain, right?
[0:10:13.8] BP: It is, yeah.
[0:10:14.1] SVDR: Some people ask, “What’s going on?” I said, “There is nothing, there is just… I need to let go.”
[0:10:20.2] BP: Just tears, yeah.
[0:10:23.0] SVDR: It’s really hard to explain to someone who is not really getting this, yeah.
[0:10:28.1] BP: What type of treatments and therapy have you tried? I know you’ve been sharing a lot about prism glasses that you’ve tried?
[0:10:35.1] SVDR: Yes. Well, in my first two years, I didn’t try that much because first year, I was just going to my own doctor and he told me that and I thought, “Okay, I need to rest” and that’s it but I did try some things. I went to this craniosacral therapy. I felt more balanced but it felt like it was more temporary for me. I loved the treatments and I felt like really calm afterwards but the next day was gone.
Yeah, it felt more like when you go to a massage or something, you feel really relaxed but yeah, I did like eight sessions and then I thought, “Okay, it’s really expensive” and I didn’t have that much money just to continue with the sessions. I started to try something else and I went to a chiropractor and to really help me with my neck but still, that wasn’t my biggest issue.
My biggest issue was my concussion and all those symptoms from overwhelming eyes and everything and this was more focused on my muscles in my neck and it did help a bit but yeah, it felt like for me, I felt like I needed help for all the other issues and not just my neck.
[0:11:52.1] BP: For sure.
[0:11:53.1] SVDR: Yeah, I did like I think 10 sessions with them and then I thought, “Okay, move on to the next treatment” and then I started neurofeedback and first of all, I didn’t felt anything after 10 sessions and then I thought, “Okay, this is not helping me” but they told me, “Okay, you need to continue maybe after 15 sessions you will feel different” but still, I did 10 more sessions so 20 in total and I didn’t feel anything.
It cost me a lot of money and then I thought, “Okay, this is not working for me” and maybe it’s working for someone else because I heard some people who are — it’s really helped but for me, it wasn’t and yeah, I just didn’t want to waste all my money and it felt like, especially the first year, it felt like I spent a lot of money to things that didn’t even work and it’s just hard to find something and because you didn’t, you don’t get any guarantees, right? That makes it really hard.
[0:12:53.1] BP: It definitely does and I like the craniosacral that you mentioned was actually one of my favorite things I’ve gotten done and — but like you said, it only lasts a short while but it was a really good feeling right after. I could sleep, I could live like I was a normal person, I’m functioning, having a good day and the neurofeedback, I’ve heard very mixed things. It’s actually something I’ve never tried but your experience reminds me of what I did laser therapy and red light therapy.
When I did those, they showed me all these miracle videos for it and then when I tried it, I just got no results and I just kept going and kept going and it’s like, “Okay, I think…” I remember having the conversation with my dad, I was like, “I think we should probably stop because like number one, like you said, it’s expensive and my results, I’m not seeing anything” but that’s how these injuries work because everyone’s brain is different so something different is going to work for everyone.
[0:13:56.0] SVDR: Yeah, that’s so true. I always started to look for new treatments and also, my second year, I went to cognitive FX in Utah, it’s a concussion clinic for people who don’t know the name and it’s really helped me, it was in 2019 and yeah, it’s like a five-day treatment where you get a special scan in the beginning and in the end of the treatment and yeah, you do a lot of cognitive exercises combine the lead into interval training. Yeah, I think my fourth day I felt, I don’t know how to describe the feeling but it was a feeling of feeling this sparkling water in your head. I started to feel something happening in my head and yeah, it really helped me to move forward and I started to continue doing exercises at home after the treatment and I also started the same year with vision therapy in the Netherlands because my eyes were the biggest problem and yeah, I think I did this for a year.
I did symphonics, the light therapy and so eye exercises, I did them for a year almost every day and I think after one year I thought, “Okay, maybe this isn’t working anymore” because I already did everything for a year, so I decided after a year to stop the treatment and oh yeah and I wore the prism glasses for a couple of months. That really helped but I also felt like, “Okay, I just reached the line of improvement” and yeah after a year, I just thought, “Okay, this is enough” and I maybe need something else to move forward.
Yeah, I think that’s my last thing I tried in the Netherlands and at the moment I am wearing the glasses from Mind Eye, yeah, I am really curious about what it will do for my eyes. Maybe it is a bit too early to say that I already feel something but yeah, I’m really curious.
[0:16:04.0] BP: Yeah, you seem to do the treatments a lot like me. You’re like, “Okay, well I have been doing it for a while” and it’s hard to be like, “Okay, now I’m going to try something else” because I don’t know but we talk about this a lot. They talk about concussion recovery like this up and down. It’s like straight up and then straight down and it’s constant but it is more like straight up and then a really long plateau and then you go down a bit then you go back up.
There is lots of flat spots in recovery, like right now where I’m at, I always say that I am in this adaptive lifestyle that is probably as negative as it sounds never really kind of go away. It is just where I'm at. I am sensitive to some lights, some noise, I get headaches if I push myself too much, too much sugar causes headaches. I actually wear a glucose monitor that helps a lot with I have night terrors and things like that so it helps me regulate those.
It is interesting because you kind of just feel like you’re like, “Okay, this is where I’m at” and that’s okay if you feel comfortable where you’re at. I still do therapies and try different things when they come up but right now where I am, it’s been ten years of therapies. It’s a long time and eventually, sometimes you also get tired of doing them. I know I do, like you said you did the eye therapy for a year almost every day.
I did eye therapy a few times but I think every time, I’ve only lasted about three to six months because after six months I’m like, “Oh this is really tiring to do every day.”
[0:17:38.0] SVDR: I understand, yeah and I had the same feeling after doing them for a year and then I thought, “Okay, I am so done doing any treatments” so I didn’t do anything for a year and it was stay where I am and I am trying to focus on the acceptance and everything and not looking all the time for new treatment. I didn’t do anything for almost a year and then I thought, “Okay, maybe I feel more ready now to try something else” and yeah, I think you just can’t rush your recovery but of course, there is always things to try.
Sometimes you just get tired of it and tired of the disappointments because not everything is helping and yeah.
[0:18:17.1] BP: No, it’s true and so we’re going to take a short break. Silvie runs something called The Concussion Community, which we’re going to talk about next and you could learn more about The Concussion Community at theconcussioncommunity.com but you can also find it on our shownotes but with that, we’re going to take a quick break.
[BREAK]
[0:18:36.2] 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 specialist near you. Find the “Work with Bella” link in our episode description. I am looking forward to another great year.
[INTERVIEW CONTINUED]
[0:19:06.1] BP: Welcome back to The Post Concussion Podcast with myself, Bella Paige and today’s guest, Silvie. We’re going to get onto The Concussion Community, so do you want to tell us a little bit about that?
[0:19:16.0] SVDR: Yes, so I started The Concussion Community last April in 2021. I started this because I felt really lost in my journey especially during the first two years because I felt really overwhelmed. For example, when you go and Google and type in “How to recover from a concussion” you get so many results and just don’t know what will help. I started to feel overwhelmed every time I try to find something.
On the other side, I felt really lonely because I didn’t know that there were more people out there having exactly the same symptoms and who are on the same journey as me because in my direct environment, there were no people experiencing the same things and I didn’t know at the time that there were support groups online. Maybe there were but I wasn’t aware of it, so I always kept the idea in my head, “Okay, if I feel better, if I feel ready, I really want to start something where I can find somewhere people can find help from professionals but also connect with people in the same situation.”
To have both of them just in one place that was something that I really wanted to create. It took me a while because I already had this idea of the two years after my injury but I started it four years after my injury.
[0:20:37.1] BP: That’s okay.
[0:20:38.1] SVDR: Yeah, so it took some time to feel ready and then I thought, “Okay, let’s…” I felt ready last year so I thought, “Okay, let’s start it now” and it sounds really easy in my head but it is a lot of work but I really love doing it and now there are in this community online there are — well, there is a free Facebook group for everyone but there is an Instagram account of course and there is this platform of The Concussion Community.
On the platform, people can join there and you can get access to classes, to courses, to the private community. Yeah, so that’s basically the platform and yeah, I am still learning myself what’s best for people and what their needs and yeah, I will learn overtime and maybe make some changes in the future but yeah, I’m really excited about it because it is growing every month and yeah, people are really sending me messages that it is really helping them.
Yeah, I think that is my biggest goal to help them in their journey and to make them feel better and not feeling that lost. That is how I felt in the beginning, I just reached out to no one, so yeah.
[0:21:53.2] BP: I think it’s amazing. I think it’s so wonderful, the more concussion awareness and support there is out there, the better in my opinion because I still believe there isn’t enough. There is a huge gap in what we need for survivors and their families as well. The Concussion Community that you’ve created, family members could also use it because you can learn about what someone else is going through or maybe how to help if you’re a parent, it could be really important if you have a teenager who is really struggling.
Maybe you need help to understand them and you need to talk to others to understand what they are going through because when I was a teenager, I wasn’t telling you what was going on because you don’t know how to explain it as a teenager or even as an adult, so a lot of people don’t know how to explain what’s going on. That is where these spaces can help you so much and like you said, the loneliness is a real thing.
I really felt that, I remember I talked about it on the podcast before. I was an athlete and I had to retire early and I used to be so angry and so upset because a lot of my friends that had head injuries and they were fine and they were talking about athletes retiring and they had had 40 concussions or an uncountable amount and that’s why they were finally retiring and that is like, “Well, I’ve only had like eight or six at this point, why can’t I function?”
The loneliness is a real thing for sure, so communities like that can make a world of a difference and I get when you said it’s a lot of work. It’s like the podcast and all of that like I help people one-on-one a lot and sometimes I’m like, “Whoa, okay I need to slow down for a few days” because my calendar is booked from seven in the morning until almost midnight because time-changes so it’s a lot to handle for sure.
[0:23:49.1] SVDR: Yeah, same, yeah. I felt really overwhelmed in the beginning when I just stared because it sounds so easy in my head and then I got to say, “Well, how difficult is it going to be? Just finding some people and make some classes” but there is so much more because for example, when you start an Instagram account of course you need content for it to post on it, so that’s one thing and then find people to host the classes.
I had to make calls with them, find some topics to talk about and also the technology of a platform, it was all new for me so I had to learn everything just before I started this and then also just the daily task like my email, social media, the Facebook group, just to manage everything that sometimes it took me two hours a day just to do those things and then…
[0:24:40.2] BP: Oh yeah.
[0:24:41.2] SVDR: Yeah and then I still had to find new people for class and everything make a timetable, it was a lot going on but now, I am able to manage it a bit better, so yeah.
[0:24:55.1] BP: Yeah, no, it can be a lot like you said, the messages you get. I get so many and they are amazing. A lot of them make me cry and that part is wonderful but some days the amount of messages and emails, there is some days where like, “Okay, I am dealing with emails at the end of the day” I am not touching these today because like you said, I do pre-interviews. That’s a lot of guest, decide if they should come on this show.
Preparing for a show, getting a show edited, posting it, that is only one aspect of all of this and that probably takes a few days a week.
[0:25:29.2] SVDR: I know, I know.
[0:25:30.0] BP: Yeah.
[0:25:30.3] SVDR: Yeah.
[0:25:31.2] BP: So what is your future plan for The Concussion Community? I know you’ve been adding a lot of courses, which I thought was really interesting to the platform.
[0:25:39.1] SVDR: Yeah, that is one of my biggest goals, to make more courses, find more people and just offer more things online. There will be like a big library of different kind of classes but also more courses, maybe longer courses as well and yeah, just to grow bigger so that people are more interacting with each other and also when there are more people in the community, I am able to add some more host as well because of course, I have to pay all of those, all their courses and everything.
I just want to invest more and make it bigger and bigger and yeah, I hope that I can reach that goal and also one of my dreams is in the future and the pandemic is over, I love to make those offline events. To meet somewhere in the world and organize retreats for people with post-concussion. Just to pick a place somewhere onwards and for example, for people who know those silent retreats, so a really cool place where people can just chill.
Have their own room to just recharge and do some yoga, do meditation but also connect to each other just to not feel alone and to see people in real life, that’s one of my dreams.
[0:26:53.1] BP: Yeah and then I understand the dream thing. I have a book actually. It has a big I on it and I call it my idea book and it’s full of things that are like for the future and I always have to go like, “Okay, so I have to regroup for this month and focus on one thing” because if you focus on all of it, it’s way too much but…
[0:27:13.0] SVDR: Yeah, I know.
[0:27:13.2] BP: The retreat thing sounds great and if you could incorporate like concussion recovery classes into that I am sure it will be amazing and so is there anything else you would like to add to today’s episode?
[0:27:25.1] SVDR: Well, I think for everyone who is feeling lost or lonely or just hopeless in their journey, I just want them to know that things will get better and I get that you don’t feel it right now because I’ve been there too but things will get easier and better and yeah, just ask for help if you feel alone because you don’t have to do it alone. That’s what I want to say to them, yeah.
[0:27:52.1] BP: Yeah, well thank you and thank you so much for joining us today to share your work and all of your story post-concussion.
[0:28:01.1] SVDR: Yes, thanks for having me.
[END OF INTERVIEW]
[0:28:10.2] 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 concussion by giving us a share and to learn more, don’t forget to subscribe.
[END]
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