Holly Tyrer lives in Hollywood, California and had her dream job as a Script Supervisor.
She was diagnosed with Post Concussion Syndrome (PCS) after an accident at work which resulted in a traumatic brain injury. Holly explains how it has altered every aspect of her life. She experiences sensitivity to light and sound, nausea and tremor and migraines. Her speech is also affected.
Holly has been working very hard using different therapies to improve her conditions and rebuild her neuropathways with a hope to eventually return to work.
If you are experiencing problems discussed in this podcast contact your GP or Primary Care Provider if based in the US.
Hosted by Chantal Boyle and Lynn Smith, Hidden Disabilities Sunflower.
Want to share your story? email firstname.lastname@example.org
08:06:39:22 - 08:06:23:19
Hello. So joining me today is my colleague, Lynn, who's based in the US. How are you doing, Lynn? Very good. Thank you. Hello, everyone. Lynn and I are really excited because we have Holly Tyrer joining us from the U.S. as well.
08:06:23:18 - 08:06:11:04
How are you, Holly? Very well. Thank you for having me. Well, it's good. It's our pleasure. So maybe you could start off with a little bit with that where you live and tell us a little bit about about that.
08:06:10:22 - 08:05:39:16
I live in Los Angeles. I obviously have an English accent because I'm from England originally, but I've lived in Los Angeles for 24 years now. So this is home. I live in the heart of Hollywood and it's very loud and bustling and lots of traffic and people and lots of sunshine and palm trees and very different to
08:05:39:16 - 08:05:26:17
wherever it was that you lived in in the U.K., I should imagine. Yes, I grew up just outside London, near Windsor, and all my family is still in England. Can you tell us what your house conditions are and how long you've had them?
08:05:26:08 - 08:05:04:03
I've been diagnosed with post-concussion syndrome after I sustained a concussion two and a half years ago. So post-concussion syndrome is an umbrella term for when the symptoms of a concussion don't go away. I thought that concussions weren't that serious, but it turns out they can be very serious.
08:05:03:16 - 08:04:45:10
I have extreme sensitivity to sound and to light. I sometimes struggle to get my words out. I know what I want to say. My tone gets a bit disconnected and I it just sometimes makes it a little bit more challenging.
08:04:43:05 - 08:04:26:19
I have I get nauseous a lot with screen time or trying to read I can maybe read 15 minutes before nausea kicks in and I start to get extreme pain behind my eye. It goes up into my head.
08:04:25:04 - 08:04:01:09
I have trouble with tremor. It's a lot to deal with out in the world. May I ask how you were injured as a script supervisor? I worked in film or television and I was on set and in a very, very freak accident, I accidentally got hit in the side of the head by a co-worker, and I ended
08:04:01:09 - 08:03:36:11
up with a severe concussion. I knew something wasn't right. I had brain fog immediately, but it wasn't until two days later that I started slurring my speech and I was. I couldn't stand properly. I couldn't balance and I was falling over and I couldn't understand how injured I was.
08:03:35:20 - 08:03:19:13
And so when my friends were taking me to the doctors appointments, the follow up doctor's appointments, I couldn't understand why the doctor was saying I couldn't go back to work, even though I'm sitting in a room in the dark because of this, the migraines.
08:03:18:17 - 08:02:59:00
I was shaking because I couldn't control the body tremors, and I couldn't get my words out a tool at that point properly. So was that because you were in shock or because your brain wasn't like articulate telling you, this is happening here and things are breaking down?
08:02:58:18 - 08:02:26:08
It's literally the brain signals get scrambled with concussions. So a brain, a traumatic brain injury that results in a brain bleed can show up on MRIs or CAT scans. Concussions are microscopic level, and so the symptoms that I was having, they mimicked having a stroke without having a stroke.
08:02:25:17 - 08:02:05:05
And according to the doctors, that is something that can happen with concussions. And how has this now affected your, you know, your daily life is affected it significantly because I'm not able to work. And that was very challenging.
08:02:03:09 - 08:01:42:07
I can't be out in loud environments for very long. I have to wear sunglasses and earplugs when I go to the shops and I can't drive anymore, so I'm reliant on friends to help me if I need to get something.
08:01:40:05 - 08:01:16:23
I have to use Uber or Lyft the right services to get to my appointments with my doctors and therapy appointments, which at this time of five days a week, so it's intensive. But the first year I had speech therapy every week and that made a marked difference in my ability.
08:01:15:18 - 08:00:51:05
In the beginning, I couldn't even call to schedule appointments because the receptionist couldn't understand me. And so I had to have somebody else schedule on my behalf. I had neuro physical therapy because it's neuro physical therapy, because my body isn't coordinated, but it's not because there's anything wrong with my limbs.
08:00:51:05 - 08:00:28:04
It's because the brain signals aren't firing correctly. I also had cognitive behavioural therapy, I still have that. And that just helps with the thought processes. And because I get overwhelmed very easily with any type of brain injury, the positive damage cannot be.
08:00:27:03 - 09:59:57:08
Repaired, but there's neuroplasticity, which is the ability for the brain to create new connexions around the damaged bits. And so that's why I basically have to relearn how to do everything again by rebuilding those neuro connexions. And so I've had a lot of improvement, but every single thing that I've done has taken active work to be able
09:59:57:08 - 09:59:37:20
to do it. So about a month ago, you contacted me and you had heard about the sunflower. So how did how did that come about? When I was out in the world I was, I would see people with with wheelchairs and canes, and for the first eight months I had a cane too, because it couldn't walk properly
09:59:36:24 - 09:59:13:20
. And I noticed that when I had the cane, I was treated very differently than when I didn't have the cane. People were more accommodating. They were. It was indicated that that was OK. This person may need help. And then when they didn't have that, I still had all the deficits that the people didn't recognise it.
09:59:13:12 - 09:58:53:04
So I was like, Maybe there's something out there that can indicate that for me. And so I went online and I just googled hidden disabilities and the sunflower stories popped up, and then I was shocked to see that it was it had started in the UK, which is obviously my home, my home country.
09:58:52:04 - 09:58:31:20
And I couldn't believe it, so then I wanted to search further to see if it was in the US, well, at which point I got very excited. And wanted to find out everything that I possibly could. About is it well known in the area around you when you go into the supermarket, is anybody recognising it yet?
09:58:30:17 - 09:58:05:00
Nobody recognises it. But I still wear it because I never know if it's going to be a source of. OK, explanation, if I'm struggling with something because I have I have the card and on the back of the card it says traumatic brain injury.
09:58:04:23 - 09:57:45:12
Please allow sunglasses and earplugs may may need more time. If I'm having trouble with things than I will, I will show that. And although they may not recognise that the sunflower lanyard itself. They can read what the issue is.
09:57:45:01 - 09:57:10:19
Do you think that the sunflower is needed in society today, Holly? It's it's absolutely needed. At this point, I would consider it essential because. In the US, one in ten Americans has a hidden disability. And. By definition, they're walking through the world, me included, may needing more help, may needing accommodations.
09:57:09:22 - 09:56:50:02
And it's not recognised. It's a nonverbal way of communicating with people. Listen that. Yes, exactly. And I like the fact that you've written on the back of your card, what support you may need. Yeah, and that's really quite key actually.
09:56:49:23 - 09:56:30:07
The moment where you live, the somehow isn't recognised, but you've just got this tool that you can just fashion. Hopefully, whoever you are talking to, you can read English is presumably in English, and that tells them everything they need to know in order to offer you the kindness, the patience and the understanding that you require.
09:56:29:20 - 09:56:07:17
And I just wanted to ask you, what are your hopes for the future? My personal hopes for the future that I'll continue to progress to the point where I am able to get back to work again. When I say work, I mean any work so you can financially support myself.
09:56:07:17 - 09:55:38:12
That's, you know, that's what all the treatments are for, for is to get that and regain that level of independence back. For the Sunflower, my hope is that it becomes global, globally recognised because it is so important and it's important in situations that people that don't have a hidden disability wouldn't understand.
09:55:37:19 - 09:55:11:07
And to have that, the sunflower recognised. By these big companies who would be incredible, and so my hope is for the future that it will be it will be implemented across all these platforms where it's needed. I think that those are excellent hypes and I hope that those both of those things that you've told us as well
09:55:11:07 - 09:54:47:11
, and I just want to thank you so much for sharing your personal story and your journey with us is the first time I've spoken to anybody with post-concussion syndrome. It's been really interesting, and I'm super impressed with how you have managed to withdraw your treatments.
09:54:47:01 - 09:54:42:07
Get to the point that you have done now because it sounds like it's been one hell of the journey.