Why Nov 3rd is important to me...

What do you know about strokes?

Oct 29th was National Stroke Day - Why does that matter? Because awareness of major medical illnesses and the trauma of the surviving illnesses is important and conditions such as strokes are mis-understood and therefore ignored by many.

Most people know someone who has suffered from a stroke - usually it’s someone older in your life and, while still devastating, often attributed to somewhat normal ageing etc. Still awful but not odd, per se.

Well - I am one of the exceptions.

Here is my story… warning it’s long!

When I was 28, I was healthy, in reasonably good shape (even had some semblance of a 6-pack), good cardio health, healthy weight (shouldn’t matter but was discussed a lot at the time so relevant), low blood pressure, non-smoker, no history of drug use, social drinker and seemingly no other underlying issues.  It’s also important that I was (and still am) very educated with regards to strokes. I’ve been a CPR & First Aid instructor, a Lifeguard and had a grandmother who had suffered and ultimately died as the result of many strokes (minor and major).

On that morning, I woke up and felt “off”. I was wobbly (unbalanced) and my face was tingly.

I dismissed it all and assumed I had slept “funny” or even pinched a nerve. I had been achy the few days before and thought it may be related. I also had a bout of strep throat the week before but thought I was feeling better. All that "checked out" in my mind as justification to how I felt.

Luckily, my partner Ryan wasn’t as dismissive and suggested I needed to get it looked at.  I ironically had a morning appointment with my GP already (due to having had strep throat the week before) and was meant to be going in on my way to work. I naively thought I would be in and out quickly and back at work at the latest by 9:30am. We got ready, did our normal commute to downtown Toronto & he dropped me off, heading up the street to the University he worked at to park and begin his day.

I don’t remember waiting for my turn or even the chit chat with the receptionist, but I do remember that my doctor took one look at me, asked me some simple questions with her frown increasing, she gave me a letter in a sealed envelope and gently told me to take a taxi to Toronto General Hospital (it was 2 blocks away). No real explanation was given (for which I am became very thankful for) except for saying I needed to be checked out at Emergency.

I didn’t even clue in to worry about the whole hospital thing, but I do remember that I was annoyed that she wanted me to try and hail a taxi on a weekday morning in the busiest part of the city, so I did what I do best, ignored her, and decided to walk. 

Curiously, something did tell me to walk a path that took me via another hospital just in case (to be fair I was on a street that was all hospitals but, somehow, I knew sticking close to them or even via them on my walk was important).

I apparently called Ryan and told him I was being sent to the hospital and he said he would meet me there (again, thankful for his instincts and that he ignored my dismissive attitude). I don’t remember doing this.

I arrived at the ER with a sealed note from my GP, gave it to the very busy triage nurse who took my name and details and had me sit down. I do remember feeling silly being there amongst the seemingly much more sick and injured people. I didn’t look or feel (in my mind) like an emergency.

I don’t remember how long I was there but do distinctly know I was feeling “off” and confused with how my actions and words seemed like they were happening to someone else.

Ryan arrived at some point and was surprised to see me still sitting there. He inquired at triage and asked if they had read the note. The nurse did so and suddenly there was a flurry of activity, and it all became even more blurry from there.

I vaguely remember it feeling chaotic and busy with a lot of people for just me and I was rushed into a room. I was asked questions that I am sure I didn’t really answer, again thankful for a calm and aware Ryan, and they started to hook me up to various monitors and prep for an IV.

A fun fact about me, I am absolute rubbish with needles, always have been and likely always will be. I get lightheaded when they even pull out the alcohol swab to clean the site. I can’t watch and will even ask to lie down for basic blood draws if it’s a bad day.

So, as I was saying, there were people putting leads on my chest, a pulsometer was put on my finger and another person jabbing at me with sharp things to put an IV in. What happened at that moment?  I did what I do, my blood pressure dropped, and I fainted (or came close - not sure). That dip in pressure didn’t help the chaos and apparently some alarms sounded as the leads and pulsometer weren’t quite “on” yet. Oops. Sorry for the added stress! Once they determined I wasn’t in fact dying then and there, the tests and such continued. I don’t remember all the tests but there were a lot of types of scans including the first of many MRIs, a lot of blood drawn, various things added to my IV and more.

 At some point, a brusque ER doctor came in and apparently rhymed off a list of potential causes - each one scarier than the last. I only vaguely remember this and have Ryan to verify the account.

Ryan at some point had called my parents who did what they always will do, they dropped all and rushed to my side. Probably breaking speeding laws as my dad drove the distance from our sleepy small hometown outside of Toronto.

At some point I also called my friend Zia who is a doctor at a hospital close by and frankly, the best person to understand any of the gibberish they were saying.

What happened then was a battery of tests, specialists being called in and lots of debate as to what the hell was wrong with me.

At some point, they also decided that I needed to be sent to another hospital nearby which is where the top Neurologists were.

I was transferred over the short distance via ambulance (I remember that the ambulance attendants were very funny, in my opinion, at the time and that they kept cracking jokes about me losing my blanket. What an odd memory that has stuck with me.

They placed me into a private room (I know the privilege I had to have access to corporate benefits and living in a country with great public health care) in the section/area for epilepsy patients. I remember that first night, the fear setting in, the horror of hearing the horrendous noises of other patients having seizures or whatever else, the chill that seems to be standard in most hospitals, the confusion and, funny enough, the frustration of me trying to do basic things and realising that things weren’t working the way my brain was supposed to make them work. 

Even with all this, it turns out I was one of the lucky ones. I was lucky to have two of the brightest neurology minds at the time at a top hospital debate my cause and diagnosis.  The damage trail shown on the MRI was faint which is a good sign and my symptoms, while unmistakable, were mild. The My symptoms back then were slurred speech, some memory issues, weakness in one side, some facial weakness and paralysis, balance issues and the slight executive function issues. I would and I did mostly recover.

After only a couple of short weeks in hospital, I was discharged and back home to heal. I even went back to work quickly (thank goodness for a brilliant team and CEO who believed in flexible working even back then). I was even driving again after a few months. I was medicated on blood thinners for some time and had regular MRIs for a decade or so. I have had some MRIs and care more recently but nothing further damaging.

In the end, my diagnosis was an ischaemic stroke (blood clot restricting the flow blood to my brain). It was likely due to the combination of various factors but the best guesses by the experts were that it was due to my long-term use of the birth control pill coupled with some clear family history that we never clocked as problematic (I am at least the 3rd generation of this history on my maternal side). I’ve had only a few  “incidents of concern” since that day but am acutely aware of my continued risk.

So why am I sharing?

Oct 29th was World Stroke Day. I know I am late to posting but that’s because today, on Nov 3rd, I am a 20-year survivor of stroke. What a crazy anniversary to have to remember!

I have so many reasons to celebrate. Since that day, I’ve gone on to live a very full and healthy life. I’ve been able to walk down the aisle to get married; I’ve given birth (despite being very high risk) to two amazing and healthy kids; I’ve travelled the world; I’ve been a runner and even shuffled through several 1/2 marathons and even a couple triathlons.

I’ve made a career doing what I love with no real restrictions. I can do what many who suffer from strokes can’t do including being mobile, thinking, listening, speaking publicly, being creative and strategic.

I do still have some very slight aphasia (mixed up language), a bit of vision-perception issues, one eye that droops a bit if you look closely, a slight deficiency/weakness on one side and, to my children’s endless amusement, the inability to make a “fishy” face. 

There are bouts of exhaustion but that’s manageable and, frankly, could be perimenopause, stress, general life, or anything really.  I think there are some neuropsychological effects as well but, again, those could also be from many things and the human body complex.

I’ve been told my resulting symptoms are called latent symptoms and can come and go my whole life and I do know they show up more when I am stressed or tired and I've been lucky to only a few have concerns since which, considering the risk of repeated and worsening strokes is typically high, I think is pretty lucky.

If you’ve gotten this far, thank you for your patience and here is why I am sharing.

My experience was and continues to be a good one, a lucky one. Many people don’t have such luck. But it wasn’t only luck. It was privilege, access to world class medical facilities and doctors, medicine (and innovations in Pharma), my general health, my age, my race, and my nationality.

What can you do?

My call to action is this: I ask and encourage every person reading this to not only learn more about what to look for but to be brave, bold and to look for these symptoms in yourself and those around you. Don’t dismiss things, especially in women.

A not so fun stat - One in five women will have a stroke in her lifetime. Among women, women of colour have the highest chance of having a stroke.  Stroke kills more women than men and is the number four cause of death in women, killing over 80,000 women each year (Mayo Clinic - Oct 2022)

Women also experience different symptoms and ones that often dismissed. This is important.

It’s also important to remember that strokes can happen to anyone, at any age, at any health and the symptoms can be easy to deny or ignore.

For those in the UK, please check out https://differentstrokes.co.uk/ , a wonderful organisation supporting, educating, and creating a community for those who have had or those supporting younger stroke survivors.