What having a stroke *actually* felt like

Four months ago I had a cerebellar occipital stroke - I wanted to share why it happened and what life looks like now! Thanks for being here. 💜

THANK YOU Abby at Trails and Tails Canine - she was amazing, if you are looking for dog training in Colroado!

Support for the channel:

0:00 - Welcome
1:18 - What Actually Happened
4:03 - ICU & Hospital TIme
6:10 - Going Home After The Stroke
8:25 - Good News, Bad News
11:12 - What Life Is Like Now
15:16 - A Scare
17:08 - Moving Forward

[cheea]

It's so scary to me that no one called an ambulance for you after the initial incident. Obviously, you were disoriented and have a distorted frame of reference for emergency visits due to your disability (same here, so I get it). However, if you ever notice a substantial shift in cognition, ALWAYS call an ambulance. I wish more people knew that. I'm glad you've been able to recover well.

[feuilletoniste]

The idea that someone could be on the floor, unable to sit up or form words FOR AN HOUR and no-one called an ambulance or took you to the hospital is horrifying. Where is the duty of care of the dojo teachers? Shouldn’t they have even the most basic of first aid qualifications so that they can recognise when something is *not* just a walk-it-off injury? They need to take a good hard look at themselves and do some serious retraining, as well as putting proper health and safety procedures in place at the dojo so that if something does go wrong, they have a clear protocol to follow. I’m so glad you’re doing better, Jo!

[TheWriterOnFire]

I cant imagine watching someone collapse, full body shaking, unable to sit up or speak, completely unable to process whats going on arlund them for A WHOLE HOUR and no one calls an ambulance. Thats scarily negligent. I hope i am never in a situation like that. I am so sorry that everyone at that dojo failed you so terribly. Minutes matter when it comes to a stroke, and you would be in a much different place right now if someone had just called 911 at the very beginning.

[Jay-Niner]

Imagine running a combat sports school and not having even the most basic protocols in place for medical emergencies. Absolutely shocking

[danielleshanti]

Getting hit by a baseball bat is exactly how my dad described his stroke as well. He also did not get help right away and did not know he'd had a stroke. He only realized many hours later that he was having trouble swallowing and couldn't speak. So, lesson is--if you suddenly feel like a baseball bat has hit you in the head, please go to the hospital.

[Mx-Alba]

As a civilian first responder, if I had witnessed that incident on the mat, I would have called an ambulance immediately. I mean I don't want to criticize this dojo that you obviously love to bits, but them not calling you an ambulance at that moment strikes me as gross negligence.

Anyway, it's great to see that you're on the mend and I hope you will recover your fine motor skills so you can relax by making some art again soon!

[antti-karhu]

Slightly over 4 mins in, and it hit me. The similarities of what happened to a friend a bit under 4 years ago. So she fell, there was apparently a sort of whiplash effect. When she later went to the hospital, it was written off as just migraine - which was a common problem for her. A couple of weeks later she collapsed at home and was taken to the hospital. She did not come back.

It's such a precious and fragile thing, this one life we have. I'm glad you're still with us, Jo.

[cortster]

For those who haven't had terrible experiences with doctors, it's very difficult to convey just how much I relates to her putting off the ER visit. Something needs to be done to make the hospital a safe space, a place of healing, and not somewhere a huge chunk of people fear going.

[liisaking]

The dojo absolutely should have called an ambulance for you as soon as they saw you couldn't move properly or speak coherently. I'm stunned that they just drove you home (and that they waited so long before taking any kind of action at all). I'm glad you're recovering well and hope it continues until you are all better. Luckily, brains are remarkably resilient and can often "reroute" around damaged areas to replace lost abilities. I'm happy to see you back, posting a video, and to get your update.

[architecturaldefect]

The fact that no one at the gym called 911 blows my mind.

[CheshirelySmiles]

the fact that you are able to speak let alone use your body is a God damn miracle since you werent rushed to the hospital. from what i know about strokes is the longer youre away from medical care the worse the prognosis is so the fact youre still (for lack of a better word) standing is a miracle. glad youre doing better

[GodSponge]

I had a stroke at 37. Thankfully (as much as that can be true when having a stroke) I had first responders within a few miles of my house and my stroke presented with all of the classic symptoms. I was at the hospital and treated quickly so my side effects are relatively minimal. I have known several people who didn't make it through a stroke, so even though you've had some damage done, it's still a miracle you are here. I'm so glad you're doing as well as you are and I pray for continued and quick healing. (please forgive me if i said anything stupid. I'm terrible with words.)

[annalorree]

Hi Jo. I was a firefighter for 23 years. It wasn’t just a job, it was a calling, it was part of my identity. I experienced an injury to my knee, and shortly after a surgery to repair that, I was in a traffic accident where my back was broken. Basically, if the affected vertebrae moves another millimeter I probably end up on a ventilator, or dead. From the knee injury, I can no longer run. From the back injury, I can no longer lift weights greater than 25 pounds. Like your loss of jiu jitsu, I lost a part of “who I am”. Based upon the loss of use of your foot, and then the physical loss of your foot, I’m pretty sure you know this, but you will need to mourn this new loss. That said, there IS still life on the other side of this. I wish you well, and hope for your steady recovery toward a new normal. ❤

[ZrJiri]

Honestly, your opinion of hospital visits nothwithstanding, this was a failure of everyone involved around the incident. You should have been taken to ER, by force if necessary, within minutes of that happening. Promptness of treatment is a huge factor in stroke recovery and more people should be taught to recognize the signs.

[sxhqqwert]

I have MS, and your symptoms are similar to mine. We really felt it when you talked about how life was going to change permanently for you. You sound wide awake to that with the changes you are accepting. We love you. YHWH loves you too. You never need to doubt that. Sometimes healing takes a minute. Wishing you a blessed healing journey, whatever it ends up looking like. GRM

[alexandreperron]

A fear of doctors and hospitals has to be one of the most dangerous thing I've ever encountered... I wish you well in your recovery.

[lydiakies]

I don't know how people watched what happened to you and didn't call 911. Maybe because I'm fresh off a cpr/first aid class, or because I've had people step in when I said I was fine....

I'm so glad you're healing, and have found a new outlet.

[TheGallicWitch]

I am so sorry about Jiu Jitsu, Jo. I can confidently say I can empathise fully and completely with you. I understand how it feels, profoundly. For nearly 15 years, I was a semi-pro, competitive synchronised swimmer. I started synchro when I was like 6 or 7 and it became my everything. When I went competitive, I was training 25-30 hours per week while also going through middle school and then high school. My best friends were my teammates, my parents and sister would drive me to competitions, training, I was preparing to pass the test to become a judge myself for junior competitors, my team was getting very good.

We won a couple of championships on the regional level, placed really well in others, until we got to the point where my coach started to talk to us about sponsors, about the national team, about European Championships. This was my entire life. In France, we have this thing called sport-étude (sport-study) which is a special kind of high school where you train for a specific sport half the week and then do normal high school studying the rest of the time. You sleep at the school, you live there, it's to basically make you pro faster than by doing normal training only. We were looking into signing me up with my parents. But I had an accident when I was 13, a stupid domestic accident on a trampoline at my uncle's house. I ripped three ligaments, shredded muscle and shattered a bone, sending bone shards flying throughout my ankle and destroying it all in its wake.

The ER we went to refused to do proper imaging, told me I had a sprain. I walked on that injury, untreated, for nearly 8 months before my pain was finally taken seriously, and by that point it was too late. My joint was completely clogged up by soft tissue where my ligaments had tried to stitch themselves back together and miserably failed, completely freezing my joint in place. I had nerve damage, soft tissue and bone damage, internal bleeding and clots throughout my ankle. I had surgery, got every single complication that surgery could cause and spent years trying to heal from that.

All the while, I kept training, swimming, ignoring the pain from sheer stubbornness alone. It didn't work. The surgeon was sloppy and cut some of my nerves meaning I lost control of my toes and the front half of my foot. In my sport, pointing your feet is an essential part of perfoming and you can be disqualified for a flexed foot or your toes not pointing straight enough. I was in so much pain, all the time. I was walking with a limp for years which destroyed my back, and I had so many weird symptoms and pains.

Turns out I also had Ehlers-Danlos Syndrome and MCAS. I had to stop synchro for good in my last year of high school when I was eventually recognised as disabled by the government. I couldn't walk anymore, I had to start taking oxycodone for the pain because the dozens of different pain meds they had been feeding me since I was 14 were not working anymore. Having to quit my sport ruined me emotionally, finishing what the disability diagnosis had started. I entered university suicidal and feeling like I had lost the only thing keeping me alive, the one thing I had loved fully and completely since I was 6 years old.

It's been years and I still wake up from dreams where I'm at the pool practicing for my next championships, dreams where I'm fitting into a new colourful swimming suit, dreams where I get to join the French National Team and compete at a high level. I'm doing better mentally, though physically I have only gotten worse from EDS and 13 years of botched surgeries, failed healing and terrible experiences with the medical field and its professionals. I may have commented it before, but the reason I started watching you is because I am discussing amputating my ankle with my doctors.

So I get it. Dear gods do I get it, and I am so, so sorry. This is a horrible thing to have to contend with and I'm so sorry you were dealt that hand. I know how crushing this is. I hope you have a support system, I hope you'll find new joys, but I know this is no easy fix. I wish you the very best. You deserve it.

[justinhovis]

I needed you!!! I’m 49, Stroke day+44. I’m a retired fireman, now corporate safety guy. I’ve been so inspired by you to keep fighting and developing the brain path. My co-worker (cancer arm amputee) sent me your page after expressing my frustrations with my dead arm. My movement is coming back. Ty for guiding me with how to cope. Pontine strokes are no good to start. The fact that I’m walking and moving my arm is a huge step. Your page just gave me the confidence to keep pushing.💪🏻💪🏻💪🏻🚒❤️‍🩹 Much love for you.
J., York, PA

[edgarmezavids]

Amazed how well you’re doing! My dad had a stroke at 54. He was at work remodeling a home and he dropped his nail gun and slipped off a ladder and vomited. Luckily his coworkers called my mom and she told them to call him an ambulance and he was rushed to the medical center within minutes. That was 13 years ago, he had a difficult recovery and continues to have issues but he’s managed to keep doing the things he loved.